tag:blogger.com,1999:blog-124041132024-03-07T21:12:11.119-05:00Spina Bifida MomsShowing the world that my physical disability has little to do with my ability to raise a great kid!Amy Linderhttp://www.blogger.com/profile/15496005772917020822noreply@blogger.comBlogger813125tag:blogger.com,1999:blog-12404113.post-75816211307214616182023-06-18T17:04:00.001-04:002023-06-18T23:18:49.864-04:00In Case You Were Wondering<p>So this random lady walks into a bar...</p><p>No, this isn't the beginning of another one of those corny dad jokes. And, I guess technically it wasn't a bar, but a local Italian restaurant/martini bar.</p><p>But this random lady <i>did</i> walk in... and started right in excitedly talking to me (as I was standing there by myself, minding my own business while a table was prepared for me and my friend, who hadn't yet arrived.)</p><p><i>Hi! How are you?! So - what's going on here? </i>(gestures up and down at me with both hands) <i>Did you hurt yourself? Are you okay? What happened? </i>(she, looking 100% invested in me and whatever it is I've got going on here. Never mind the actual reason she burst through the door... presumably, I mean, to eat.)</p><p><i>Oh, it's just the way it is for me. </i>(me, trying to give her a quick answer so she'll just leave me alone.)</p><p>But then she had more questions. Was I born like this? What do I have? What's that mean? And me, seeing that I'm not going to get rid of her anytime soon, telling her how I have Spina Bifida, how I used to walk with a walking stick, and when I was little, just braces, etc... Her, very much interested in all I had to say.)</p><p>But then! As I was not really willingly explaining my whole life to this random crazy lady, her maybe 12 year old son walked up to her (he, already having been at a table inside) and starts talking to her, effectively interrupting what I was saying (Whatever. Go for it, kid.)</p><p>Well, she must have given him a stern look, because he all of a sudden turned to me and, very politely, asked me, <i>Excuse me. Is it okay if I talk to my mother now?</i></p><p><i>Yes! Of course! Go right ahead.</i></p><p>Meanwhile, my table became ready, my friend arrived, and I scooted away as fast as I could while he was talking to his mother. </p><p>The end.</p><p>What in the heck was all that about?! I mean, don't get me wrong. I'm totally not opposed to talking about "what I've got going on" if someone is curious. I just would never expect that curious person to be some random lady who just happened to walk into the same restaurant I was at, waiting for a table minding my own dang business. </p><p>So, that was weird. Some people I've told this story to have been like, <i>Why did you even talk to her? I would've asked her who she was and why was I any of her business.</i> Well, yeah. True, that. But I don't know. I really was just trying to be polite and give her a short answer to hopefully satisfy her. But it didn't. And then it snowballed a bit. Until her son saved me.</p><p>Now, the complicated bit. (Well, maybe not really.)</p><p>When it comes to, like, almost everyone else in my life that I regularly see (other than Hubby and Sweetie, cuz they just know)... it's my feeling that nobody else that I actually know and would be happy to talk to, has really asked me at all how I am or what's going on with me. In my mind (and, yes, I appreciate that I am deciding how I think others view me without actually knowing), I think that others, who actually are my friends and family, just see me the same exact way that I was pre-surgery (exactly 1 year and 1 day ago today.) And they probably feel sad for me that the surgery didn't do what I hoped it would do (get me back to walking without crutches.) So, they don't talk to me about it or how I'm really doing or what I'm really feeling about the experience of the surgery and its outcomes. </p><p>That's what I think they think. Just sayin'. I know, it's a grand, sweeping presumption on my part.</p><p>At any rate...in case you were wondering... cuz no one really asks or wants to remind me or bring up "bad" or "failed" things to me, or anything, I guess... I'm here to say that I am doing great! The surgery was a success. It detethered my spinal cord, which is all that it was really meant to do. Because my spine is detethered, I have no more/very little lower back pain now (still some, but I honestly chalk that up to me being older and arthritic.) So, this is fabulous! But my legs got weaker and weaker prior to surgery because of the tethered cord, and so they still don't work the way they did before. Maybe they will some day (I do still do my my exercises, and will continue to do them), maybe they won't. But, honestly? I have come to realize how much more stable and safe I feel walking with my crutches. I used to fall pretty regularly. I became a pro at falling! But now? Eh. I hardly fall at all because I have 2 crutches to help catch myself instead of one stick. Cool. So, whatever. Even if I am able to strengthen my legs to the point where I could use the stick again, I think I'd just stay with the crutches anyway at this point. </p><p>And because no one asks me how I am doing or how I'm feeling about all this... I think I've been trying to "get back to the old me" for the sake of other people who so, so wanted that for me. But you know what? It may not happen. Or it might! I'm not stressing about it... anymore. And neither should others. No one needs to pussyfoot around me like I sometimes feel they are. I'm good! I was never promised that my surgery would instantly - or ever - get me back to walking how I was before. And, if I'm honest with you (which I always aim to be)... when I had this surgery the first time, in my early 20s, (and I'm kinda just now realizing this as I type), I considered that surgery a huge success <i>because it got rid of my back pain at the time</i>. That's it! But you know what? That exact surgery also made things "worse" for me, if you can call it that, because I started to have to walk with crutches and, slowly, I got to the walking stick. Instead of just my braces. It <i>did</i> change my functionality. But was I mad? No! I was relieved to not have the pain anymore! So now I walk with a stick. Okay. I'm still walking. I'm still good. Let's go! </p><p>And now? I'm 20 some years older so, naturally, I just have your standard older person aches and pains. And, yeah, my leg muscles and sciatic nerves and what not are screwed up from the damage done by the tethered cord. It's just what happened. Oh well. Muscles can get stronger. I don't know that nerves can be repaired. But, whatever. That major constant lower back pain I had before is gone. So - success! I'm still walking. Some days (or even scattered throughout a day) I may have more or less pain when I move about. But that's way better than all pain all the time.</p><p>So - great! Are we all good now? Are we all on the same page now? I'm good. Talk to me about it if you want. Or don't. But don't be afraid to, I guess. If you ever were at all. If I wrote this post 6 months ago or so, sure. I didn't really have a good grasp then on how I felt or what I expected would happen after the surgery or what I really wanted to say to people about it at the time. I remember my sister-in-law basically asking me how I was doing last Thanksgiving and I instinctively turned to Hubby to answer for me. Cuz, like I said, I just wasn't very clearheaded then about what my reality was like vs. my post surgery expectations. Nor what I suspected others must be thinking about what they saw of my surgery results. Another time late last Autumn, a friend from church saw me on the crutches and just assumed aloud to me that I must've just been taking it easy that day but, really, I was back to using my stick now, right? Wrong. And I honestly kinda felt bad that I wasn't back to the way she expected me to be. Like I was letting her down to "admit" that, no, I'm still on the crutches. Sorry.</p><p>But not anymore. I'm not ashamed. I'm not living my life for others. Based on what I think they think. I'm living for <i>me</i>. And I'm doing great! I'm so thankful I had the surgery. I <i>needed</i> it! Had I not had it, I may very well have ended up in a wheelchair permanently by now. And maybe, if and when I have the surgery again in another 20 some years, it will again result in relieved pain but maybe now having to use the wheelchair all the time. But now, I still can amble about on my own. Yes, crutches are clunkier than my walking stick. It's not as smooth or desirable for me to want to walk long distances with the crutches. And, yeah, my remaining leg pain and numbness prevents me from wanting to or being able to walk for too long (but way longer than pre-surgery.) My right knee in particular feels... numb/weird/weaker/prone to giving out on me? - and this is a brand new thing since PT. But I really think it feels this way because I'm actually bending that knee in a more correct way than I ever have before. So, those muscles are being used in a different way than they were before - if they were being used before at all. So that's weird. But it's okay. Because now I own my own wheelchair and it's super helpful to have that option available to me. Heck! Hubby and Sweetie and I went to Philadelphia for a week last month and we walked for like 5 miles a day, everyday! Well, they walked, and I rode. But it was great for me to realize that, thanks to my wheelchair (and willing helpers), I could still get around and do all the things I wanted to do and see everything I wanted to see. It was wonderful!</p><p>Anyway. That's all I wanted to say. I think this post has largely come to fruition from a recent show we watched. We three have recently started watching <i>The Gentle Art of Swedish Death Cleaning</i>, streaming on Peacock. One episode featured this woman who has terminal cancer. And she felt extremely frustrated and alone that all her friends and family who were there <i>to</i> <i>help her through this</i>, wanted to talk to her about anything <i>but </i>her cancer. Like it was a taboo subject to ever bring up. But the Death Cleaners (that sounds so horrible - but they are really lovely people, I promise) helped her realize that she needs to tell her friends and family how she feels and about how she sometimes needs to talk about the cancer. It's not going away. She has her own thoughts and feelings about being sick. About dying. And she has all these people around her! And yet, she feels so alone in her sickness because no one wants to talk to her or let her talk about it. So, she told them. And it was beautiful.</p><p>It's cleansing to talk. To get things off your chest. It's healthy and necessary for continued progress, success, health and happiness. That's why I love my blog so much. It lets me get things off my chest and get some much needed clarity about various things.</p><p>So, let's talk. If you want. I mean. I <i>did</i> just tell you what I'm thinking about everything you may or may not be wondering about me. But still. Talking. Good. I need to do more of it, in general.</p><p>But - do please try to leave random strangers alone when you just happen upon them in restaurants or wherever. That's just nutso.</p><p><br /></p>Amy Linderhttp://www.blogger.com/profile/15496005772917020822noreply@blogger.com0tag:blogger.com,1999:blog-12404113.post-1044506440386758752023-03-26T14:15:00.008-04:002023-03-26T15:00:59.443-04:00Stand StillUhhh...<div><br /></div><div>Hi there.</div><div><br /></div><div>So, I go and talk about using my voice, and then I shut up for 3 months. Brought this blog to a complete standstill, or so it seems.</div><div><br /></div><div>To be fair. I've already well established here that I have no issues using my written voice. It's my <i>talking </i>voice that needs to be heard. So, for all you know, I haven't been very present here because I've been super present out in the real world speaking up and saying all the things! Yeah!</div><div><br /></div><div>Uhhh...</div><div><br /></div><div>No. Not really. </div><div><br /></div><div>I mean, there was that church meeting Hubby and I went to where our minister asked the attendees a question and I had a good answer... but didn't say it aloud. Then, after hearing from others who did speak up - all with good answers themselves - our minister gave the answer she was most wanting to get at. And it was pretty much exactly what I was going to say, had I opened my mouth and just said it. So, lesson learned. I felt validated, at least, that my thoughts are good and "correct" and worthy of being offered. And I felt angry at myself for not saying what I thought in the first place. But, at least, I now know... speak up next time. It really won't be that scary.</div><div><br /></div><div>And I <i>have</i> spoken up, at least a little, on the home front. Stopping Hubby when he's cutting in to tell a story I was going to tell. Giving my opinion when others say something I don't necessarily agree with. Trying to participate more in discussions. This has all gone off pretty well, although... I've found that I still need some work. I'm not used to expressing myself aloud so much, so when I do, I have to work on expressing in the correct tone. Am I joking? Upset? Lackadaisical? Fired up? Or just trying to contribute calmly to the discussion? Likewise, because people are not used to hearing my thoughts aloud, others are learning to hear me for what I'm truly saying, in the manner in which I intend to share. It's complicated and takes time. But the more I try, the better we all get. Good communication is hard, but so worth the effort.</div><div><br /></div><div>What else...</div><div><br /></div><div>On the healing front, I have recently felt like I'm kind of at a standstill. My physical therapy sessions ended with the end of the year. Yay! I "graduated" PT! Eh. It wasn't so much because I reached all my goals, than because I was pretty much plateauing, it was the end of the year so insurance was about to re-up with renewed out-of-pocket deductible costs to pay again, and, honestly, the facility isn't super close to home and I didn't really want to deal with driving there through New England winter weather. My therapist was awesome! I really loved her and worked really well with her. She invited me to come back this year if I felt doing so would be beneficial. Either because I was regressing and needed again to be pushed, or, alternatively, because I was improving and wanted the extra push to take a greater leap forward. Either way, all I have to do is have my doctor write a new script, which I'm sure she'll do without hesitation. We'll see. For now...</div><div><br /></div><div>...just this past week I've really felt like I'm seeing a leap of improvement. I still use my crutches all the time, but lately I've felt, I don't know, lighter? Springy? Quicker and more agile. I can just get up and go. Not all the time, mind you. The mornings can still be really sore and tight, for instance. Some days are just, in general, more achy than others. Also, depending on what chair I'm sitting in, my legs feel more or less painful and/or numb from having had sat in that particular place. Thus, getting up from wherever and moving on can be more or less easy, depending. But, by and large, I'm feeling much better and much more promisingly able more of the time.</div><div><br /></div><div>Speaking of a standstill, though, and of my recovery, one of my exercises is to do just that. Stand still. For as long as I can before my legs hurt too much and I can't help but have to sit again. Standing used to be my "thing"! Way back when, (yeah, it was like 20-25 years ago. Whatever.) I worked at a local big box bookstore and was often placed at the cash registers for an entire shift. Standing there for 4 or more hours at a time. Walking around a bit behind the front desk to retrieve orders, place holds, and whatnot. All of this, no problem! Bring it on! I can stand all day if you want me to.</div><div><br /></div><div>Now... not so much. I think the last time I was timed at this at PT I got up to 4 minutes or so? Maybe 5? This being a vast improvement from when I started PT and could only do not even 2 full minutes of standing. I wonder what I can do now.</div><div><br /></div><div>One of my exercises to help increase my standing abilities is to stand and play a gentle game of catch with a partner. Hubby has helped me with this every once in a while, but not with any real sort of frequency or regularity. Another thing I can do to increase my core muscles and my standing abilities is <a href="https://spinpoi.com" target="_blank">spinning poi</a>. One of our friends, an expert in the circus arts, introduced us to the art of poi last fall. Since then, I've spun poi every once in awhile while standing in place. Both playing catch and spinning poi have been excellent ways of getting me on my feet, engaging my core, and concentrating on something else while standing as long as I can.</div><div><br /></div><div>It's amazing how important that ability is - to just stand up and stand still - for getting ready to get away from your one spot in space and move forward. To move on. You need to have the strength to do both. Strength to stand firm and strong in one place, as well as strength to let go from your small spot and get going onward. And I'm not just talking walking here. </div><div><br /></div><div>Yesterday I tried something for the first time in a few months that was decidedly <i>not</i> standing still. I got out my walking stick to see what I could do. I stood up, got myself centered and steady in place. And then I took my steps. And I was pretty pleased with myself! For not having touched my walking stick at all since December, I was pretty comfortable taking (albeit) kinda-clunky-but-not-super-clunky steps. Hubby needs to learn to be a better encourager though. Hah! No, he's fine. He just remembers a time when I could get around no problem with my stick, walking all over kingdom come. By comparison, my current walking stick walking efforts are decidedly not effortless, to say the least. But, improving. Fine. Pretty darn good for not having even tried in quite awhile. My PT therapist would be very proud of me. And so am I. </div><div><br /></div><div>There's a YouTuber named Mike Boyd. His thing is that he decides on a new skill every month and learns it, all the while timing, and filming, his practicing and learning and, ultimately, mastering of said skill. He's taught himself everything from how to solve a Rubik's Cube (blindfolded, even), to how to shatter a glass with his own voice, how to impale an apple with a playing card, and indoor rock climbing too... and everything in between. And, because he times himself, he and his viewers all know the relatively little time it takes for him to master a thing when he really puts his mind to learning it. And the lesson is... so can anyone else. It's really not as hard or even as impossible as you think.</div><div><br /></div><div>Hubby and I recently watched <a href="https://youtube.com/watch?v=GtOqpvAoQMA&si=EnSIkaIECMiOmarE" target="_blank">Mike's TedTalk</a> on the subject of his channel and its purpose. If only you get out of your own head and stop telling yourself what you're <i>not</i>, you can realize so many things that you actually <i>are</i>! Mike went to college for engineering and, growing up all throughout school, he excelled at math, but was put in the lower sections for the more creative subjects. He was a "math person", he was not an "art person." But you know what? He's become an art person, and so much more, just because he changed his mindset and decided these were things he was going to put in the effort and learn. Not only learn, but master! And he did. And you can too. Don't tell yourself what you're not. Realize what you can be and actually are. </div><div><br /></div><div>Even though we've been watching Mike's videos for a few years now, watching his TedTalk just the other night was the real eye-opener. I <i>am</i> going to walk again! This is <i>not </i>just the way things are going to be for me from now on. In my own time, in my own way, with effort and practice, exercise and improving strength, it's just something that is going to happen. That's it.</div><div><br /></div><div>Hubby and I plan to take a big vacation in the Fall of next year. We've got a lot to celebrate then and so we have this trip planned to do just that. And I intend to walk by then. I <i>will</i> walk by then, with the aid of my walking stick, all over the lovely Prince Edward Island in the fall of 2024. Watch me, I'll do it. </div><div><br /></div><div>I'd ask you to wish me luck. But I don't need luck. I need my own personal effort applied towards mastering this skill. And it's not even a brand new skill to me! I've done it before. Most of my life, in fact. I just have to reteach myself what I already know how to do. I can see me already improving. I've got lots of time to try and fail, try and succeed, try and master. Stand in one spot and be strong. Then move on from there. </div><div><br /></div><div>What about you? Don't just stand there! But <i>do</i> stand up. Be still and find your bearings. Then, get going... on <i>whatever</i> it is you want to do. <i>I </i>believe in you. Now believe in yourself, and go. </div>Amy Linderhttp://www.blogger.com/profile/15496005772917020822noreply@blogger.com0tag:blogger.com,1999:blog-12404113.post-58034562685072783322023-01-01T12:22:00.004-05:002023-01-02T16:28:04.704-05:00Can You Hear Me Now?<p>Testing. Testing.</p><p>Is this mic on?</p><p>Yeah? Great.</p><p>So, listen up.</p><p>Every year, for the last several years, I've picked a Word of the Year that I intend to stick by, as I believe it will lead me to all good growth and change. Usually it's a word that encompasses something I need to work on. To make better in or for myself. Something that just says, "this year, it's all about X for me." A kind of one word resolution, if you will. </p><p>Usually this word will just hit me sometime in early to mid December. No struggling to figure out what it's going to be. No "making" a word fit. It just always does. Fit. Without question. It just is there, and that's that.</p><p>And so it was this year. No hours of contemplation. No worrying that this year I wouldn't think of a word. No trying on different words to see how they felt. Nope. It just came to me, just like it always does. </p><p>For this year, my word is VOICE. </p><p>As in, I want to learn to use my voice. Out loud. I know I am very comfortable with writing, and with all my practice there, I dare say I've gotten pretty good at it. Yeah, my written voice has a strong game. But my <i>speaking</i> voice, that is an entirely different story. </p><p>I am the youngest child in my family and the only girl. My three older brothers have always been there to protect me. I am physically disabled, so my parents have always been there for me, to hear whatever the doctors have to say, to make decisions about various procedures and healthcare paths for me as I grew up, and to all around take care of me. They have helped me along whenever I've been confronted by people needing to know, or just plain wondering, what my deal is. </p><p>For much of my life, I've sat there quietly as others work out just how things will be for me. Sure, I'd talk a lot at home about what it was I wanted or how I felt (teachers constantly telling my parents that I'm so quiet in school, leaving my parents to wonder why the same talkative kid they sent in wasn’t the same one who showed up in the classroom), but when it came down to sharing info, telling about decisions made, etc., it was always my parents verbal say-so while I quietly sat by.</p><p>“Of course your parents took care of you, spoke for you, and made major decisions for you”, you’re probably saying. That’s what parents do! They’re not going to let a little kid take on all that. Kids can’t and shouldn’t have to deal with all the big grown up decision making, obviously. “You got it no different than any other kid”, you’re saying. And you’re right, in a way. Maybe it was just the elevated number of doctors appointments I had compared to the typical kid. The sheer number of times I found myself in serious situations where really big medical decisions had to be made for me… or how often I found myself in new situations with new people having to learn about me and how to take care of me… my parents were constantly looking after my needs while I learned to sit back, not worrying about it, and to show up and everything will be just fine. </p><p>So. Yeah. I grew up very well taken care of and very, <i>very</i> quiet in school. <i>All</i> through school, including college. Really shy, really quiet when I did speak, easily embarrassed, did not like attention drawn to me at all. The whole nine yards.</p><p>And now, Hubby and I, and Sweetie when home from college, live with my aging parents who are both now hard of hearing. Both should be wearing hearing aids. Both don't always do that. And I'm naturally quiet when I speak, even if I don't think so myself or am trying not to be. So, whenever I <i>do</i> say something, my parents often can't hear me and need me to repeat. Or they <i>do</i> hear me occasionally, but it seems to be mostly at the times when I make a not terribly interesting side comment to something said on TV or whatever. That is, nothing of any real importance, but they heard me say <i>something</i>, so they ask me to repeat, which feels incredibly dumb to me to have to say again, loudly, something that really doesn't matter at all in the first place. Or Dad has commented more than a few times, after I tell them both something that, "I don't know what it is... something about your voice... I can never hear what you say. I can hear you're saying something, but I can't make out the words." Yeah. I just love knowing, over and over, that something I really can't help much about myself is making communicating with my Dad ineffective. Or, with my mom, I'll happen to make a bunch of noise, not even intending to, as I walk by, either with the clank of my crutches, or me saying something at normal-for-me-volume-level to someone else, or me banging around something accidentally...whatever... and my mom doesn't even bat an eye, look up, acknowledge that any sort of commotion is going on at all right now. I walk right by without notice despite any noise I'm making, vocally or otherwise, and she just doesn't hear. So, given all this... I mostly just don't talk a lot to them. Hubby and I work opposite shifts, Sweetie is away at school. I keep to myself and quietly do my own quiet thing. </p><p>Yada, yada, yada... to this day... and lately, I've been noticing more and more...others still speak for me. Which has largely been just fine with me. Or friends and family just know that I'll give a brief answer without much exposition, even when you might expect there'd be some. And that seems fine for everyone, because that's how they know me to be. But, the thing is, I <i>am</i> noticing it more and more. How I'll bring up a family anecdote and intend to tell the whole thing, but Hubby or Sweetie will say, "oh, yeah!..." and go on with the rest of the story, as I listen along, entertained, along with everyone else. Fine. Whatever. Other people are better story tellers than I am anyway. Go on. Tell it...</p><p>The tricky thing is that, sometimes I really <i>do</i> want help when I'm asked a pointed question. Especially dealing with anything to do with my surgery and continuing healing and rehabilitation from said procedure. It honestly is tough for me to see in person all the people who know about my surgery and are rooting for me and have, I think, been thinking that surgery = instantly improved me, with no more pain, no more need for crutches, etc. etc. And that... just hasn't been the case. I'm still working on exercises every day, new pains that are showing up, remaining old pain, a lot of what the outside world would still see as the same as how things were for me before. And it's difficult for me to put hope and relief into my voice, with my verbal explanations of just how things are for me now, explained well and with ease. So, with that, for example, I eagerly look to Hubby to help me tell others just how things are for me right now. After all, he (and Sweetie) from the outside looking at me can and have observed positive changes that I'm just not always in a brain space to realize all the time. So, yes. Please help me with this. Speak for me, because I can't verbally communicate all the positivity that this surgery has provided me when I know there is also so much more to work on and strive for.</p><p>And, not for nothing, but... we have our Sweetie who's on the autism spectrum, has ADHD, and has a touch of anxiety to boot. Because of who she is, she very often (read: almost always) thinks that whatever she's thinking and feeling about whatever is something Hubby and I just automatically know. And this is most definitely not the case. No matter how often we tell her we can not possibly know what she's thinking unless she tells us, even if she comes to understand that for this time around, the next time will happen. And I'll inevitably presume out loud that she must be feeling such and such way, but of course, she's not. So, Sweetie being Sweetie, she'll probably snap at me that I'm totally wrong and that "obviously" she's feeling or meant or whatever <i>this </i>instead. And so... all that over and over kinda makes a person not want to presume out loud anything about anyone. And so, I tend to stay quiet. I'm a decent listener. I'm just not a great giver of advice or other soothing comforting conversation. (To be clear, I never really have been. This is not Sweetie's "fault" by any means. I love who Sweetie is and do not deny her being her, whatever that may mean. It's just that I don't get much practice being an effective soothing, comforting speaker around her terribly often. And so my quiet ways continue.)</p><p>And so! Things are about to change! </p><p>Watch out world. I'm going to start using my voice. I may not do it well. I may still even ask for help. It's going to take me some time to get good at it. But my aim this year is to get <i>better</i> at it. Speaking up. Contributing to family conversations. Relaying stories. Speaking my mind on various issues. Saying how I'm feeling. Saying what I need. What I want. What I think. Never mind the discomfort it may bring to myself or others. I have opinions and stories and things to say. And y'all gonna start hearing them. Not just hear it in my writing, but IRL. No more quiet me. At least that's my goal. It won't be overnight. I'm sure I'll fall back into my "regular" quiet ways from time to time. I may think, after some trial and error, that this wasn't such a good idea after all.</p><p>But. It. Is.</p><p>Everybody has a right to speak their mind. Everyone's voice deserves to be heard. </p><p>I've been quiet <i>waaaaayyy</i> too long.</p><p>It's time you heard my voice. Out loud.</p><p>Do you hear me now? Good. </p>Amy Linderhttp://www.blogger.com/profile/15496005772917020822noreply@blogger.com0tag:blogger.com,1999:blog-12404113.post-30447156652764977152022-10-02T15:40:00.006-04:002022-10-02T23:33:16.766-04:00The Core Principle<p>Have you <i>seen</i> Selma Blair on this current season of <a href="https://www.youtube.com/watch?v=051veAmu00I" target="_blank">DWTS</a>?! Talk about someone who is working on overcoming the physical challenges in their life. Selma has Multiple Sclerosis, leaving her with occasional slurred speech, the need to often walk with the support of a cane, and weak muscle control, especially in her legs and arms. And yet, she's saying YES to DWTS, getting out there every week to give it her all. At the time of this writing, the season is just starting, so she's only had 2 week's worth of performances. But, man, have those performances been awesome! She is doing great and, for as much as I'm not thrilled with some of the changes that have happened to DWTS over the last few years or so, I am <i>very</i> happy to watch every week to cheer her on and watch her abilities take command over whatever physical challenges she may deal with. Truly inspiring. </p><p>Anyway...</p><p>As for me, about 2 months out from my last post, and 3 months out from my surgery this summer, I'm happy to report that I am doing great too. Especially these last 2 weeks or so, I and my physical therapist are really starting to see some big strides in my strength and general abilities. Specifically, I've brought my walking stick with me to a couple of sessions. The first time was maybe 2 or more weeks ago? Just to give it a shot and see how I can manage beginning to walk again with this, instead of the forearm crutches that I had to resort to about a year and a half prior to my surgery. The pain in my back and legs was getting too great and, it was thought by my chiropractor, that the way forearm crutches would force me to stand and walk (leaning forward a bit) would help to ease the pain. This was because the way I was walking with my walking stick was to increasingly lean back farther from the stick, belly out. The more I hurt, the more I walked in this weird way, trying to escape the pain, but in reality only making it worse. Long story short, the forearm crutches are basically better for me, <i>do</i> force me to walk either straighter or at least leaning forward, not back, and basically give me more support all around.</p><p>But, I am stubborn and want to get back to my walking stick. I told this to my therapist from the get go. She didn't see any reason why, with a little work and practice, I couldn’t do this. So I brought it to PT.</p><p>That first attempt there (yes, I had tried a few attempts at home even before this) was... not so great. She had me walking in a skinny hallway with a support bar along one wall. And, with that bar being so easily accessible, I kept reaching for it even though I didn't want to. And my right leg, which has always been my more dominant leg, was now the weaker. After taking a step with the left leg, the right was just dragging itself through to finish the step. As you can imagine, it just wasn't pretty. Or useful. Or at all correct.</p><p>So she gave me some different exercises, on top of what I already do, and I focused on strengthening my legs more, lifting that right leg, and making considerable "steps" towards improving my steps, so to speak.</p><p>Well, this past Thursday I brought my walking stick back to therapy and tried again, this time asking if I could try in a not-so-cramped hallway without a safety bar for added support. Sure! Lots of hallways I could pick from. So I picked, and I steadied and readied myself, and I went! Picking up my right leg to complete a step! Sure, it's still not the prettiest thing ever. I still depend more on my left leg, and kinda kick my right leg through. But I engage my core, I don't twist my torso (unless, as seen in other tries, I’m tiring out) to try to force things to happen, and I make, literally, good strides. My therapist was so impressed with the improvement from the first try with her. She was smiling from ear to ear and told me that was "so good!" She told me I gave her goosebumps with how well I did. Wow! Am I feeling good about things now!</p><p>This weekend, I've been practicing more at home with my stick a bit. Not 100%. Not even near that. But sometimes. Just giving it a go, if I have to go down to the bathroom, say. It's good. It's feeling better and better. It's coming along, step by step.</p><p>I have also learned first hand the importance of engaging my core for another basic life motion - standing up. Last weekend at church, when we all stood up for the first song, I stood in my old usual way. The bad way. Basically pushing my belly out, arching my back inward, and forcing myself into a standing position. And that hurt! Not a sharp pain. But a really sore, tight pain that hung on as I stood there singing. But then! For the next song we stood to sing for, I remembered to engage my core, pretending to bring my belly button back to my spine. And that was just fine! I stood up pain-free, no problem at all. Huh! I understood right then, if I hadn't already, how very important it is to use your core in making motions with your body. Everything is truly connected and I really got how well things can work if only you use the correct muscles to do what needs doing. And ever since then, every time I stand up, I engage these same muscles and stand up much, much more easily and considerably less painfully. Yee haw! </p><p>Oh! And Poi! <a href="https://www.youtube.com/watch?v=Kx8Bkt4fWuY">Poi</a>, man. (Speaking of church) we were at our church's annual end-of-summer retreat early in September and learned the beginning moves of this beautiful circus art. Hubby really enjoyed himself and got into the whole thing. I did what I could sitting, and eventually stood with one crutch, twirling poi with the free hand. I could tell right away that this was definitely an exercise that engages one's core. And I told our friend/teacher as much, saying that this really seemed like a fun exercise I could incorporate into my physical therapy exercises. It could help me improve the very things I need to work on, like quad strength, core muscles, and balance. She said, absolutely! Yes, poi could really do wonders for me. So I’ve been practicing, now standing with no crutches and twirling poi in both hands. I can only do it for a very few minutes right now, but that will increase with practice. I also think I’m going to invest in her <a href="https://www.amazon.com/Circus-Kids-Jackie-Leigh-Davis-ebook/dp/B079TN3WKS">circus arts book for kids</a>, as well as some other poi-specific beginner videos and lessons. Why not have a little fun while also making my body stronger and more able to conquer the tasks that need conquering?</p><p>Another improvement I'm seeing is that I can now walk small distances without my leg braces. For instance, after a bath to the bedroom. Since my pain has increased, pre-surgury, I've had to resort to crawling when not wearing my braces, or even with my braces, but without access to my crutches. The pain was too great and my legs had become so weak that I was no longer able to hold myself up comfortably to get myself where I was trying to go. So I crawled. But this week, after a bath, I gave it a shot to walk the (very short) distance from the bathroom to the bedroom. With the support of the wall, of course (I don't, and won't really ever, have good balance without my braces, considering I can't feel below my knees or access my muscles there.) And I did it! No problem! Wow. That felt really good too. What an improvement! Yeah. Not that I ever make a practice of walking without my braces. But in those instances when it's the end of the day and I have to go a short distance without them, it appears that I can now make this happen by walking, just like I did before.</p><p>And. lastly, Hubby and I went to Target maybe a week or so ago, to pick up some things to include in a care package for Sweetie (she's off at college! And loving it! And doing so well!) Typically, since the vast increase in pain I've had to manage, (all of these changes I've mentioned to my lifestyle due to pain, BTW, have taken place pretty much over the last 3 years I'd say) I turned to riding the provided electronic riding cart at this store. But this time, Hubby said I was going to walk! "But, the things we need are in the far opposite corner of the store!" I said. "You can do it," he said. "And we can sit and rest if you need." And so, I did it! I got to the aisles we were after, helped pick out the items we wanted, and then started heading back to the checkout. It was on this journey back that I knew I really did want to sit and rest a bit, which we did. And then I let Hubby handle the checkout line, while I sat to the side again. But I did it! And at no point did I feel winded or in lingering pain.</p><p>In fact, that "not feeling winded" thing? That's new too. Previous to surgery, I either, A) wouldn't walk at all, preferring to break out my wheelchair we bought during this time of increasing pain, or B) I <i>would</i> walk, but feel incredibly "riled up", tired, heart racing, and generally winded after the experience. But now? Nope. I'm good. I'll walk whatever distance, sit down when I get where I'm going, and feel totally fine from "all that exertion." Building up my stamina, baby! Getting so strong.</p><p>So! That's it, I think. I'm doing great. Sure, I still have pains. But they are different, less, and tell me more about how much I'm pushing my strengthening body in a good way, rather than stressing my damaged body in a bad way. </p><p>PT is still on, for now. But my large chunk of sessions they gave me at first is all used up, and now I have been given a couple of smaller chunks of sessions, after which I have to have a re-eval. My therapist then submits all sorts of documentation, proving that I'm making great improvement with therapy, so therefore I should continue therapy! But not so much improvement that the insurance just says, "Great! Then she's done, then, and doesn't need anymore stinking sessions." Insurance is very stingy, is what I'm saying. But we'll see. </p><p>Even when I can't go back to therapy anymore, though, I will still do my exercises at home everyday and continue to push myself to get stronger and stronger still. I feel the determination now and I will prove to myself that I can get better. I just have to put in the work. (I think my PT sessions historically, all with the goal of decreasing my increasing pain, have always left me feeling like the improvement wasn't coming fast enough, or I had just given up that there even was improvement to be had at all, that I was always just going to be in pain forever, it was inevitable, so why even bother. Well now, after a specific successful surgery to fix this specific problem, I <i>do</i> believe I can and will improve! So there!)</p><p>I'm movin'. I'm groovin'. Faster and stronger every day. I can. I will. Just watch me. </p>Amy Linderhttp://www.blogger.com/profile/15496005772917020822noreply@blogger.com0tag:blogger.com,1999:blog-12404113.post-16916525646620424542022-07-24T15:23:00.012-04:002022-07-24T16:10:29.393-04:00So You Think You Can…I am fascinated by the mind/body connection. I listen, enthralled, to stories of people whose bodies have betrayed them in one way or another. Either through disease, or accident, or whatever trauma has taken control of their lives and their physical well-being. Intrigued to find out how practices such as hypnosis, or visualization, can aid 10-fold in the physical healing of a body. Yes, do the physical therapy. Do the physical work it takes to make your body physically stronger than it once was. But also take the time to literally <i>see</i> yourself doing what it is you want to get back to doing. It makes a world of difference.<div><br /></div><div>You’ve heard about <a href="https://www.philcicio.com/power-of-visualization/">that study</a> where a group of students were asked to come to the gym and take a number of basketball free throws? As a group, having not really been particularly sporty, nor having had any practice, they only did fairly well at this task. Then they were divided into 3 groups.</div><div><br /></div><div>The first group was sent away and told not to do anything towards improvement in this for 30 days. No practicing, no nothing. The second group was told that they needed to practice for 30 minutes a day, every day, for the 30 days. And the third group was told to take the time every day to only visualize themselves back at the gym, taking - and making - the shot. No actual practicing. Just the visualization exercise. </div><div><br /></div><div>Well, at the end of the 30 days, when tested again, the group who did nothing was just as successful- or not - as they were before. No improvement. But both the group who practiced, and the group who just visualized, increased their success at making baskets by virtually the same percentage! </div><div><br /></div><div>Visualization works. I'm tellin' you.</div><div><br /></div><div>I am also completely in love with watching shows featuring dancers. Especially <a href="https://www.fox.com/so-you-think-you-can-dance/">So You Think You Can Dance</a> and, to a lesser degree in recent years, <i>Dancing With The Stars</i>. Man! The human body is just so fascinating! What a person can learn to do in a week, or less, of intense training and practice. It’s just incredible. SYTYCD does start with contestants already trained in particular styles of dance, yes. But then those dancers are asked to perform in styles completely unfamiliar to them. A tap dancer told to learn the waltz? A crumper performing a modern dance piece? Week after week these dancers train and learn and practice and then perform. Moving their bodies in beautiful ways, just as if they’ve done this their whole lives. </div><div><br /></div><div>I’m not trying to discredit the hours upon hours they put in, working their butts off to get to that final performance. But they do only have a week to get there. That’s it. And somehow, every week, they arrive at their performances in beautiful, awe inspiring fashion. </div><div><br /></div><div>What I’m saying - the human body is an amazing, complex piece of machinery, able to do so much more than even its keeper might ever think possible. Whether through hard physical practice, hypnosis, or visualization - or all of this together - a person can break through so much pain, stiffness, and physical struggles to ultimately come out movin’ and groovin like the sleekest of top notch dancers, runners, basketball players, or whatever physical prowess it is you have your mind set upon achieving. </div><div><br /></div><div>So how does this relate to me? Hello there! Please let me introduce myself. You may think you already know me. I’m Amy! Of course! Yes, this is true. But now I’m post-<a href="https://weillcornellbrainandspine.org/condition/tethered-spinal-cord/surgery-tethered-spinal-cord">surgery</a> Amy. You may be more familiar with my pre-surgery persona. </div><div><br /></div><div>I gotta admit, I thought my pre and post surgery selves would be instantly and wondrously vastly different from each other. Most noticeably in the area of pain vs. no pain. Two totally separate people! And I thought that <i>pre</i>-pre surgery self, capable of easy movement with little-to-no-pain-or-numbness, would thunder back to me like an avalanche. Just like giving birth. It hurts like hell, but as soon as it’s over, it’s forgotten. Replaced by baby snuggles and love. The same for me, right? Surgery = get up and start getting on with my life. No more leg or back pain. That chapter is over! Time to start getting back to living pain-free.</div><div><br /></div><div>Uhhh… well, not so much. Alas. My legs still hurt: My back hurts if I sit in the wrong way in the wrong chair, for too long. Getting up from a seated position is still the worst, although maybe slightly better. It all still feels much the same as before, honestly.</div><div><br /></div><div>But, I’ve learned something.</div><div><br /></div><div>I’m doing Physical Therapy now and, in going through those motions, I now see how incredibly weak my legs have become. And, more interesting still, I see how much weaker my right leg is compared to my left. My right leg has always been my stronger, more dominant leg! What the heck happened to get to this point, where it is plainly presenting as weaker than my left?! </div><div><br /></div><div>I’ll tell you what happened. My pre surgery back pain increasingly got worse and worse, encouraging me to walk and move less and less. My main goal in life, increasingly so over the last 3+ years, was to get myself from one chair to the next. That’s it. So of course my legs got weaker and weaker. My quads, which is all I used to have to keep me moving, are now shot. Now it’s my upper leg muscles on the insides of my legs that are doing all the work. So, fine. This is a main goal of PT. Build up my quads again. Get me back to 3+ years ago Amy as best we can. </div><div><br /></div><div>Still. It’s a bit disconcerting, disappointing and dissatisfying to experience all this when I thought for sure this surgery was “the answer” to all my woes. I know the surgery was a success. My surgeon did, in fact, detether my spinal cord, freeing it up to hang loosely as it should. It no longer stretches or pulls or causes me pain in this way. So any remaining pain comes from something else. Like weak muscles. Weak muscles can be built up. That is what my focus is now. </div><div><br /></div><div>Historically, I have hated PT. I’m fine to do the exercises when I go, but I’ve been terrible about doing the at-home regimen. And the last time I went, a few years back, even though I liked the therapist herself, she just had me repeat with her what I was supposed to be doing at home. Nothing really extra. But now, I really love my therapist and see that she is pushing me hard during our sessions, in conjunction with the different things I’m doing at home. And I <i>am</i> doing my at home exercises every day as she has laid out the plan. Plus! She is taking time each session (twice a week) to massage my lower back, particularly with the goal of keeping scar tissue in motion. Not settling in one big, spine-tethering clump. This is my favorite part of our sessions. Afterwards, my back feels much less pained for several hours. So much so, that I tend to forget to get up every 30-45 minutes to walk around a bit. My mind isn’t on my back. I forget. But I do ultimately remember and get up to move as often as I can. "Motion is lotion", after all, as my physical therapy location likes to profess.</div><div><br /></div><div>And by the way, I have noticed now that I generally do want to walk and move. As opposed to my before practice of moving from seat to seat. So, there’s that. </div><div><br /></div><div>I’m also interested in this whole mind/body thing, taking the time to picture myself walking and moving easier, much more pain free. I personally have also had the experience of speaking out loud whatever I wish for, and having that come to fruition. Several times in my life, I’ve spoken words out loud for what I want, and by and by, whatever that is I want, happens. So - I am speaking my goals. I am visualizing my movements, I am physically doing the exercises to get me to where I want to be. </div><div><br /></div><div>Whatever it takes. I’m there. I’m doing the work - in whatever form it takes. If I can think it, I can do it. That’s really been the way for me my whole like. Screw the doctor who saw my X-rays (but not me) 20+ years ago and just decided, “well, clearly she’s in a wheelchair.”! No, I’m not! I wasn’t then. And I only use one now when needed because of pain and, it turns out, weakness. But, excuse me sir, I can do whatever it is I want! Always have, always will. It may not be as effortlessly as for you. It may take me more time or practice or just having to do whatever thing in the way that works best for me. But I get it done. To watch me do a thing, one might think, “oh, if only she’d just let me do that for her, it would make it so much better for her.” But, no. I do things in the ways that would best for me. To do things the way I do them doesn’t feel challenging to me. It’s just the way. No big deal to me, even though others may perceive it as more challenging than necessary. We all do things the best way we know how. I’m just living my life. I’ll get what I want done. I promise. </div><div><br /></div><div>Anyway. Motion. Vision. Practice. Proclamations of goals desired. Adaptation. All of this working in conjunction. Whatever it takes to meet my goals, I’ll do it. I’m like the Little Engine That Could. I think I can, I think I can.</div><div><br /></div><div>And I will. </div>Amy Linderhttp://www.blogger.com/profile/15496005772917020822noreply@blogger.com0tag:blogger.com,1999:blog-12404113.post-66659503014577460092022-02-28T18:12:00.008-05:002022-06-16T10:02:32.760-04:00An Open Letter to…<p><i>I wrote the following the other day to a couple of old friends who happen to also be living with chronic pain. We 3 have recently kind of formed a little support group of sorts for each other as we deal with what it is we each live through. As I wrote this to them, I just typed. I didn’t read it back or self edit or anything. Now, for this blog post, I have taken that initial spewing of emotions and cultivated it into something more. Edits here, additions there, grammatical fixes everywhere. And now, I submit to you, the following…</i></p><p><i>———-</i></p><p>I don’t know what I want or what I’m looking for. To never bring up my chronic pain publicly feels like I’m not being true to myself. Like I’m sparing others from having to take a second and remember that it’s not all rosy over here for me. Or, more probably, I feel like, yes, I actually <i>have</i> brought it up enough already. I should be mindful that it’s not all about me and no one has to keep hearing about it - they know already. God forbid I upset anyone else because I keep talking about how much my situation stinks. I wouldn’t want that. Of course. </p><p>And that leads me to the realization that I really don’t <i>want</i> my writing to be all-pain-all-the-time because… what’s the point in that? It keeps me focused on it, and I get people to remember for a second what I’m dealing with, then they mindlessly (or genuinely, I don’t know) give me a “caring” or “sad” emoji before they continue scrolling on their merry way, soon to be distracted by a funny cat video 4 posts away? So what? </p><p>No one gets it. No one could. Okay, not <i>no one</i>. My husband and daughter get it probably as best anyone could without being in my shoes directly. And I feel like you both get it, too, as you manage your own chronic pains and conditions. Anyone who’s lived with severe chronic pain knows what it’s like. But still. As I’ve said before, pain is a very personal experience. A very lonely, isolating experience. You know what it’s like for you. I know what it’s like for me.</p><p>Still, the fact remains… I fancy myself a writer and one of the best ways I know to get my emotions out and to put everything in order for myself is through the process of writing. It helps <i>me</i>. But I just, I guess, I also want to affect people with my writing as deeply as I can to let them know exactly what it is I’m trying to convey. And people everywhere with chronic pain - I want others to know. You are not alone in your solitary journey. To live vicariously through my words so my co-sufferers realize they’ve got a compadre in me. Or for those not in a similar situation, to know what it truly means to live this way.</p><p>This is not to say I want everyone to actually feel my pain. But just to understand enough about how this shift in my daily life experience has changed me and what it takes for me to get through a day. How I want to keep as active as I can, but how difficult it is for me to just stand up and walk down the hall. How when I say I’ve got chronic lower back pain, what I really mean more times than not is that it’s my legs that burn with searing, radiating pain. But that my legs also often go all pins and needles as my (literally) tethered nerves try to sort out exactly what’s going on after a big adjustment of position. How so much of my brain space is taken over by this situation I find myself in. There’s no escaping it. And therefore, because of all this, how so much of my brain space is absolutely <i>not</i> dedicated to interacting with people and their own problems (or joys), their passionately felt soap box speeches, their rhetorical questions that yet still seem like an answer is in hot demand. </p><p>Or even just polite, casual conversation. To gather with and be amongst friends and chime in on a conversation about whatever. My brain isn’t there. I’m exhausted. Happy to be amongst friends, of course! But simply not able to contribute meaningfully to any friendly banter going on. Everything else seems so trivial and like someone else’s thing to deal with. Not mine. I’ve got my own thing and it’s just about all I can handle, thank you very much. And, no, I don’t want to talk about it either. I don’t know <i>what</i> I want, like I said at the start of this whole thing. </p><p>And the funny thing is, it’s not that I’m even consciously thinking about<i> my pain, my pain</i> at any given moment. I honestly don’t feel like I’m sitting around feeling sorry for myself all that often. Especially at work. I love my job and my coworkers, and my chair there is as comfortable as I can get. I’m on the phone all day and my mind is distracted. But at home on weekends and evenings, all I’m really able to do these days is sit around. What else do you expect me to do but think about it? So when I get to writing and considering why I am the way that I am… this is what I come up with. </p><p>Anyway… I also don’t wish for others to only “get” the bad parts of what I’m dealing with. As someone who likes to write, I of course want others to be affected by my words no matter what my subject matter and the emotions surrounding it. I want to evoke all emotions as they apply to whatever I’m writing about. It’s just that, right now, this is the big news for me and what I don’t necessarily <i>want</i> to focus on in my writing, but what is choosing <i>me</i> as its writer. </p><p><i>Phew</i>! I’ve been wanting to blog about this, and tried to with my last post earlier this month. But I don’t think I did justice then to what I want to convey, nor do I feel like I could ever do justice to it. How do I choose just the right words and put them in just the exactly right order to make my readers understand what I want to say…to feel what I’m feeling… All of it?! The frustration, the anger, the bitter sweet nostalgia for all I used to do and no longer can? The way I feel so incredibly disabled in a way that I never have before, even though - to the outside world - I have been disabled all my life? But that label has never stopped me before, you see. I’ve walked, jumped rope, skied, shot hoops, hiked, traveled both by myself and with others, attempted roller skating, ran, driven (and still drive a regular automatic transmission), carried a pregnancy, given birth, raised a child, and on and on and on. My being disabled by Spina Bifida has very rarely, if at all, resulted in my <i>feeling</i> disabled.</p><p>But now. Now! I am the very picture of disabled. I am quite literally <i>not able</i> - sidelined, hampered - from doing physical activity of almost any kind. Even just standing in one place. Even just getting out of bed, or rolling over while I’m still in bed. Anything I do causes or exacerbates pain. Period.</p><p>Sitting or resting is the closest I can get towards pain free. But I assure you, it is not pain free. Getting up from a seated position is probably the activity that causes the most pain, followed by an ease up of said pain as I walk it off a bit. But continue that walking activity too much (like, 2 +/- minutes) and the pain and leg numbness ramps back up again. It just always <i>is.</i> And always keeps me down. Physically and mentally. <i>Sigh</i>…</p><p>I’m sure this feeling of <i>disabledness</i> I am dealing with is a very large part of why I fight so much against it and against receiving help of any kind. Mind you, I <i>do</i> ask for help, and am asking for more and more of it every day. But please don’t ask me if I need help. No! I’ve got this. I’ll let you know if I need anything. But, please, let me be the judge of this. </p><p>Okay. I’ve written enough here. I’m just going to hit “Send” and get it out there. I’m writing to you since I know you can relate. And I’m considering turning this into an actual blog post. But first and foremost, to you both. Before I do something dumb, hit a wrong key, and lose it all. Yeah. Okay. That’s it. Thanks for “listening.”</p><p>————————-</p><p><i>Editing to add, and sharing again today, June 16, 2022. Tomorrow is my spinal cord detethering surgery. One more day of pain. Then, of course, pain and discomfort of post surgery and a long recovery. But then, little by little, the feeling of relief. Finally. Literally intensifying for about 18 years. Last 3+ years being the absolute worst and something not able to be ignored. Thanks to all who have seen me through this and will be there through my recovery and beyond. I don’t have the words to thank you enough. I don’t have the brain space to write a whole new post. I just want to share this again. All this pain is soon to be gone, as I can only hope that surgery will go well and do the trick. Thank you all again. It’s a long road ahead. Physical therapy to help me rebuild what I’ve lost, as much as it can be rebuilt. Here’s hoping. So grateful to and for you all. Overwhelmed that our community would even think to start a GoFundMe for us. And what an amazing outpouring we’ve seen already. Thank you all. We love you and feel so humbled to be among your beloved community.</i></p><p><a href="https://www.gofundme.com/f/help-amy-blanchard-pay-for-lifechanging-surgery" rel="nofollow">GoFundMe</a><br /></p>Amy Linderhttp://www.blogger.com/profile/15496005772917020822noreply@blogger.com0tag:blogger.com,1999:blog-12404113.post-11087852070357034842022-02-04T17:07:00.006-05:002022-02-06T09:10:17.488-05:00I Will Survive. And Thrive!<p>Hi there.</p><p>Miss me much?</p><p>I've been...surviving.</p><p>Yeah, sorry. That's it. Not great. Not even good or okay. Surviving. Sounds about right.</p><p>And, yeah, I said I'm “sorry.” But I have no need to be sorry. What am I sorry about? Not sorry that I can't and won't answer the standard greeting of "How's it going! How are you doing?!" with the expected "Great! Everything's great!". I'm not great and I'm allowed to express that. I am.</p><p>Not that I want to bring everyone around me down and halt a conversation from moving forward with a long detailed explanation of why I'm not, in fact, great. I guess I tell most people that I’m “hanging in there.” But, to people who know me and whom I consider friends or family - therefore they are already aware that I'm not feeling so great anyway - I feel safe and allowed to give at least a small update on how I really feel and what's going on with me. </p><p>And, yes, dear Reader. I feel like we're friends. I feel like you care. Otherwise, you wouldn't be reading this. Right? Right. </p><p>So, yeah. No. I'm not great. I'm surviving. I live with chronic back pain. Pain so bad that it radiates down my legs. Pain so bad that, even though I can't feel below my knees because of my <a href="https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Spina-Bifida-Fact-Sheet">Spina Bifida</a>, I do in fact feel this pain that radiates from my back all the way down to my feet. Of course, it's much tempered. Below my knees it's just enough pain to notice, not really be bothered by. But I notice it. And that bothers me. </p><p>Even at night, sleeping. If I want to roll over, I now wake up from the extreme pain I feel in the movement I'm trying to make. And often my legs even go numb, so that I have to lift and turn myself with my hands. It's an ordeal. And then I'm awake. Trying to figure out which position is the least of all the evils. Left side? Right side? Back? Who knows. Every time it seems to be different.</p><p>Sliding out of bed in the morning hurts. Getting up hurts. Walking hurts. Sitting hurts... but not as much. Sitting is best. As long as it's a good, supportive seat. The chair I'm sitting in now, at our computer, is not great. It always makes my left leg go numb. But I want to write and I'd much rather do it at the desktop than typing with one finger on my small phone. Anyway, I hear Sweetie finishing up what she's doing and so I suspect she'll be wanting to take over this space. Soon enough I'll be kicked out and have to settle in to another seat that’s not so comfortable in its own way. Hmph. </p><p>Yeah. So I hurt. All the time. It used to be that I had to earn the pain and/or numbness. Walk a few aisles in the grocery store. (AISLE, by the way, is my go to starting word for <a href="https://www.powerlanguage.co.uk/wordle/">Wordle</a>. Lots of vowels and common consonants. I've not failed yet at getting the word. You're welcome.) Hike a bit in the woods (easy path, of course) with Sweetie and Hubby. Stand in one place for a long time. Something! But now? Nothing. I literally have to do nothing before my body reminds me, loudly and relentlessly, that I am in pain. </p><p>And these memories of walking, hiking, standing... they're from not all that long ago, in the grand scheme of things. 4 years ago? Maybe even 3? And standing! Standing, man. I was the queen of standing in one place. In a time long ago and far away, admittedly, I worked in retail at a large, well known bookstore. And whenever I was assigned to the registers, I was a happy camper. I could stand there all shift long. Walking around behind the counter to retrieve orders for customers. Whatever needed to be done. No problem.</p><p>If I was assigned to the info desk, then I wasn’t so thrilled. Then I had to potentially walk around the store, directing customers to their chosen books. That got me tired and, eventually, in a bit of pain. Maybe. I don’t remember. But I definitely remember that I much preferred the registers. </p><p>Anyway. What was I talking about? Oh yeah. Pain.</p><p>What is it like to be in pain All. The. Time.? Let me see if I can come up with some adjectives…</p><p>Exhausting. Depressing. Maddening. Overwhelming. Hopeless. Sad.</p><p>And yet, I am generally a happy, positive person. Or at least I used to be much more so than I am now (stupid pain!) And, as I think about my one chosen word for this year - RESILIENCE - I’m trying to think of some other positive adjectives and phrases that have come out of this experience.</p><p>Determination. Mental Strength. Acceptance. </p><p>It’s a short list, but there it is. </p><p>I’ve tried to research others who have written essays on chronic pain. Maybe I didn’t search enough, but I didn’t find much of anything. I specifically remember once listening to the author John Green talk about the aloneness that punctuates chronic pain. I can’t for the life of me find that audio or reading again. But I remember how good it was at defining chronic pain. It basically acknowledged how personal pain is. No one can feel the pain you’re feeling. No one can know exactly what you’re going through. Pain is as deeply personal as it is deeply felt. And one person’s ability to manage aches, twinges, and/or chronic raging pain is very different from anyone else’s ability to manage the same.</p><p>I, for instance, believe myself to be able to withstand pain very well. Heck, I’ve been in one form of pain or another for going on two decades now. I’m a pro! And nary a complaint has anyone ever heard from me. Much. Ask me how I am a few years ago and, yes, I was great! You betcha! Couldn’t be better. All the while I was just past experiencing the worst pain ever after accompanying Hubby at the grocery store. Mindset was much more “that was then, this is now”, meaning, sure I was in pain. But it’s over now and forgotten. Moving right along! </p><p>But now. Oof. There’s no escaping it. And I complain more. At least to Hubby, anyway. But others see it too and understand. What’s so maddening is that I don’t know what to do about it. I’ve tried it all. Physical therapy (I hate it. I won’t do it at home). Chiropractic (is it doing anything really? It doesn’t seem to be doing a darn thing. And maybe it’s even harming me). Cold laser therapy (huge wast of money). Nerve stimulator placement (well, I tried for that, but we all remember <a href="http://spinabifidamoms.blogspot.com/2021/03/another-victim-of-cancel-culture.html">how that turned out</a>.) Acupuncture (oh, how some of those needles stung! And again, no relief felt). Meds (no med, prescribed or store bought has given me anything more than a mild relief). I’ve even recently been to several appointments with a urologist to see if I could resolve any issues in that department so that I could revisit the idea of the nerve stimulator. Crickets… Anyway. The list goes on. All done in a valiant attempt to avoid major back surgery. </p><p>And so. Here we are. No resolution. Still in pain. Getting worse all the time. I don’t know whether to sit more and rest, since sitting feels like the least painful thing I can do. Or if moving more is the way to go. Sure, it hurts to move, but being active seems like it should keep me strong and ultimately be beneficial to the whole situation. I don’t know.</p><p>To move, or not to move. That is the question. I want to keep moving! I do keep moving. Sure, I now own my own wheelchair for use when we three go on adventures so I no longer have to walk. I’m grateful to have this and enjoy the freedom it gives me whenever I use it. BUT. I am not about to transition to using it all the time. I’m still walking. I’m still capable of getting around in small spaces, taking care of my needs. I’m good to go.</p><p>Honestly, I feel like if I start using the wheelchair more regularly, that I’ll never get up. That will be it. I’m done for. And that’s not the life I want to lead. Not yet. I’ve got some good days left in me still before I sit down. </p><p>So. Where are we, then? What can I possibly do? Well let me tell ya.</p><p>I’m going to move forward with having back surgery. And in my case that means <a href="https://regenexx.com/blog/surgery-for-tethered-cord/#gref">detethering surgery</a>. The very thing I’ve been saying I absolutely want to avoid. Yet here we are. And I’m excited. Well, as excited as I can be to go in for major back surgery that’s known to be risky at best. </p><p>But at this point, as far as I can figure, it’s the only option I’ve got. </p><p>I was excited about the nerve stimulator surgery. But they don’t want to have me. Fine. And at this point I’ve realized that I don’t want to mask the pain anyway. It’s much better to fix something than hide it. Anyway, my main reason for not having the surgery was because I don’t want to lose any of my abilities. But you know what? I’m already losing my abilities, as in I can’t walk without crutches now. I used to be able to walk around the house without a cane or anything. But now I cannot function without the crutches. So, given that, if the surgery effects me so that I need to use crutches from now on, at least I’ll use them pain-free. Or if I’m put in a wheelchair for the rest of my life, I’ll at least be there without pain. And that sounds just fine to me. </p><p>So what’s the next step? I’ve already spoken with my PCP and she’s put in the referral to the neurosurgeon. That appointment is made for later this month. I presume she (Yes! A female neurosurgeon! I love it!) will want me to have updated MRIs done. Once those are done and reviewed, I’d guess it’d be go time. Except that I presume this is considered an elective surgery. So I don’t know, given these Covid times we live in, when I’ll actually have this done. I’m hoping sooner rather than later, but we’ll see. </p><p>And that’s it. I’ve made the decision and I’m looking forward to the other side. </p><p>The day when I will no longer just survive. But a life where I will thrive! </p>Amy Linderhttp://www.blogger.com/profile/15496005772917020822noreply@blogger.com0tag:blogger.com,1999:blog-12404113.post-48674955410714137342021-04-08T22:13:00.004-04:002021-04-09T23:37:44.055-04:00This is Me<p>I yelled at my chiropractor today. Like, <i>really</i> yelled. </p><p>Now, I’m a quiet person, and those who know me are probably thinking I don’t even know how to yell. But I did. </p><p>I didn’t yell in anger, mind you (well, kinda.) She was yelling at me... from literally 3 feet away, maybe... out of excitement... over my crutches. </p><p>And I couldn’t take her volume, okay? </p><p>I mean, I <i>knew</i> this was going to happen. It was the first time she’s seen me since I’ve started using the crutches and she all of a sudden realized I had this different mode of mobility (and she was the one to suggest them in the first place.) And, like it does when she’s excited about anything - her voice volume increased exponentially so that she could “properly” express how great I looked! Wow! Look at you! And everything so exciting and wonderful and amazing. And she’s standing right there, using her <i>BIG </i>outside voice, not across a large gymnasium or something, but <i>right there</i>, and I just found myself uncontrollably matching her volume level to let her know, “YOU’RE LOUD!” </p><p>And then she quieted down. And I apologized. And life went on, we had a lovely conversation, I had my adjustment, and all is basically well.</p><p>Except that it’s several hours later and I still can’t believe I childishly yelled at my chiropractor like that.</p><p>But, man. I really can’t believe how incredibly <i>LOUD</i> she got/gets whenever she’s overly excited. </p><p>And, really. Geez. From my perspective, me using the crutches is so completely not that amazing or wonderful or something that makes me feel (emotionally) great or anything. Sure, my pain is eased a bit, which is the whole point of using them. So, yah, yay. But, from my stance on things, I in no way feel <i>less</i> disabled even with my pain lessened. I actually feel <i>more</i> disabled when using them. </p><p>Sure, my posture while walking is way better than it was than with just the walking stick. But I, as the person doing the walking, have never really felt like I’m walking in one particular way over another. I feel like just using the one, cool, wooden walking stick that Hubby lovingly crafted for me (anyone can use a walking stick, just because, ya know?) just innately makes me look way less handicapped than I do clunking around with the 2 noisy, clanky, cold metal forearm crutches.</p><p>Even using regular under-the-armpit crutches wouldn’t make me feel so - <i>other</i>. People use regular crutches all the time when they hurt their legs or feet. It’s a temporary thing that will correct itself eventually. No big deal.</p><p>It’s just something about the forearm crutches, though, that indicates, “that person is disabled. Different. Other. Someone to be careful around. Someone to try to not stare at. Someone to try to act normal around, like ‘nothing to see here, folks.’ But they <i>do</i> wonder and stare and probably want to ask questions, but that would be rude, so they just continue trying to act normal and casual and like everything’s the same as it ever was, no big deal. </p><p>But, really, it’s a pretty big deal to me. I feel like people I know who used to feel comfortable around me, now look at me wondering how to just <i>be</i>, like they used to. And for people who don’t know me at all, that just see this person maneuvering around with these clanky crutches, well... they’re stepping aside, giving me a wide berth, telling their kids not to stare, shushing their questions, trying to be as natural as the day is long, no big deal that an “other” is invading their space. </p><p>Yeah. That’s how I feel. In a nutshell: like everyone is staring at me while trying to act like they’re not. Like everyone is trying to be careful around me, while trying to act like they’re not overly concerned. Trying to act casual and relaxed while clearly they’re at least a little uneasy in my presence.</p><p>And all that, to me, makes me feel invisible and <i>other</i>. People try to act like my presence (my crutches) is no big deal by just ignoring the fact that I’m there at all. Or smiling at me quietly while they don’t say the thing or ask the question of me that’s running through their head.</p><p>Or, on the other hand, I don’t need or want people to get overly excited for me and want nothing more than to talk at me about how amazing this is and isn’t it so wonderful?! Yeah. Also not great. </p><p>I know. It’s complicated. A few people I know even really <i>do</i> make me feel totally fine and chill, like nothing’s changed at all. I’m so happy to have these people in my life.</p><p>And I <i>know </i>some people who know me who are reading this are absolutely thinking this is ridiculous and absolutely not true and all in my head and I should not now, not ever feel this way. Geez! Really, Amy! Get over yourself!</p><p>But it <i>is</i> how I feel. I’m the one with the disability. I’m the one with the diminishing abilities. I’m the one trying to adapt to using new aids to help me keep as active as I can. And this is the way I feel. This is the way using these particular crutches make me feel. It’s my truth, even if it’s totally unfounded to everyone else, totally not how anyone else is really perceiving me at all. It’s the way I feel. And to tell me to <i>not</i> feel this way, that I <i>shouldn’t</i> feel this way, that it’s <i>ridiculous</i> for me to feel this way - well, that’s just not fair of anyone else to say. No one else is me but me and I’m allowed to feel however I do. </p><p>No one is going through the particular physical pain and the changes and the adjustments I’m going though but me. Sure, others in my little world have their own adaptations to make regarding my changes, and they have every right to feel however it is they feel about that for themselves. But I’m experiencing this in the one unique-to-me way that I am, the only way I can, and that’s that. I won’t apologize or agree that I should get over it or acknowledge yet that I’m making a mountain out of a molehill, or anything. This is how my world feels to me right now. It may very well change. I bet it will, with time. But for now, this is it and that’s that. Full stop. </p><p>So when my chiropractor suggests I give forearm crutches a try and I tell her I used them years ago but I hated them... and she doesn’t even ask me <i>why</i> I hated them, but I can surmise that she thinks it’s just because they were too heavy or something... and then she gets way, <i>way</i> over-the-top excited (excited <i>for</i> me) to see me use them and look so good and, wow!, isn’t this so wonderful?!... well, really, it’s not. Not so exciting. Sure, yes, helpful for the pain (although now I have different pains, possibly worse, in my legs at times. But that’s a different story), for which I am very grateful. But otherwise? It’s a lot to unpack for me. It just is.</p><p>Anyway. I’m sorry I yelled at her. But it needed to be done. Not only to quiet her down, but to make myself be heard. </p><p>I <i>am</i> grateful she listened to me. Thank you for listening, too.</p>Amy Linderhttp://www.blogger.com/profile/15496005772917020822noreply@blogger.com0tag:blogger.com,1999:blog-12404113.post-82108369651847798392021-03-28T16:21:00.003-04:002021-03-29T17:56:54.225-04:00I’ve Been Cancelled Hi there. Thought I’d check in. I know it’s been way too long. Wanted to say... well, not enough about hardly any of all the things swirling around in my head. <div><br /></div><div>But y’all deserve at least a bit of an update. I mean, if you’re a friend of mine on Facebook, you may recall that I’ve already reported this. But for anyone who happens to read this and hasn’t otherwise gotten the news...</div><div><br /></div><div>I did not have my nerve stimulator trial. Nor will I have it, ever. </div><div><br /></div><div>I know, right? Shocking. This was not my decision. And I found out 2 days before I was to have the procedure that they were cancelling it. Why, you ask? Because I had - I have, I <i>always</i> have - a UTI. And that infection is likely to lead to infection where the leads are placed into the spine. Even if they treat and cure an infection right before the procedure is done, the next imminent infection will cause the same threat of infection in the area of the leads. And so on and so one.</div><div><br /></div><div>And what makes this all the more maddening is that I <i>told</i> the doctor about my history with UTIs! Back in September when I was theoretically prepping for the procedure to happen in November. He said I would have to get bloodwork and a urine culture done ahead of the trial and he said jokingly, “So don’t get a UTI!” As he waggled his finger at me. Well, I told him, I always have a UTI! Like, literally always. A urologist told me semi recently that if I am ever randomly tested, it will always come back showing infection. It’s just who I am as someone with Spina Bifida. It’s common for us all in this community. Anyway...at the time, he was like, Oh. Well, maybe if we can get your PCP to sign off on this and approve you going forward, we can still do it. </div><div><br /></div><div>Okay. Good. Okay. </div><div><br /></div><div>But then here we were in real life and my test comes back showing a “raging” infection and even though my PCP did talk to the doc and try to move things along, he cancelled it. His nurse - the person I’d mostly been talking to these last few months - called to tell me so. And she said he (the doctor) definitely wants to talk to me and will be calling me himself to discuss what other options there are to look at for me. But, for now, he at least wanted her to call and say we’d have to cancel. Not just postpone, mind you. <i>Cancel</i> all together. Because if I’m always likely to have a UTI, there’s always likely to be a threat of infection at the procedure site. </div><div><br /></div><div>And here we are a couple weeks later, and he hasn’t called me yet. And I don’t expect he ever will. Done. This and all other options with him are done. He told me last June that the “only” option for my relief of pain was this nerve stimulator. So now that’s off the table. No other options with him. I’m not about to call him. I’m sure he won’t call me,</div><div><br /></div><div>Maddening. Frustrating. Sad. Extremely Disappointing, depressing, and disheartening. Grrrrr.... </div><div><br /></div><div>But! My chiropractor (whom, honestly often makes me angry, herself, in various ways) had suggested something that’s turned out to be useful in the midst of this latest kerfuffle. She suggested I break out my old Canadian crutches (that I hardly ever used and hated so, so much), because they will force me to walk with a different/better posture than I currently do, thus taking pressure off of my back and legs.</div><div><br /></div><div>Well, I couldn’t find my old crutches, but I ordered some new ones. And they are pretty sleek. And, oh my gosh, do they work! I’m feeling considerably less pain as I walk and, according to Swee and Hubby, I’m zooming around with them like I haven’t zoomed in ages (and unlike the Zooming we’ve all been doing way too much of in this pandemic lifestyle we’ve all gotten used to.) what a relief! Really helpful -more than I ever thought they’d be. </div><div><br /></div><div>So, there you are. I will <i>not</i> be cancelled! You can try to break me, but I will not be broken! I will always find a way. Get back up, dust myself off, and try try again. Something has got to work. There is always an answer. You just have to wade through a lot of crap, sometimes to get there. Crap and disappointment. Anger and frustration. But sometimes you need a bit of all that to finally push you to find the best answer you could possibly hope for. The best answer for you. Something will work, even when everything else doesn’t. Even when <i>everyone</i> else says no. You’ve just got to say yes yourself. It just takes one yes to get what you need. That’s it.</div><div><br /></div><div>I’ve found a great answer for me. Maybe someday there will be an even better answer. But for now, this is my yes. This is my relief. This is what I’ve been waiting for this whole time, and I didn’t even know it. </div><div><br /></div><div>Who cares what I can’t do. I can do this. And it works for me. </div><div><br /></div><div>I’m back, baby. Zoom zoom...</div>Amy Linderhttp://www.blogger.com/profile/15496005772917020822noreply@blogger.com0tag:blogger.com,1999:blog-12404113.post-34273191818030641672021-01-30T19:19:00.000-05:002021-01-30T19:19:06.841-05:00Help! I Need Somebody.<p>Uh, no I don’t. </p><p>I am <i>constantly</i> being asked if I need help. Constantly. By my mother. Just her. Mostly around food prep and service. Not her saying, “let me know if you need help.” which I think I would take more kindly to. But, “Do you need help?” </p><p>No. Maybe. I don’t know. But - <i>I promise you</i> - I’ll let you know. </p><p>Dad asks me occasionally, but not nearly as much, and in much more tolerable ways. He asks or tells me specific things, like: “Do you want me to bring your tea in when it’s ready?” or “I will bring in your tea.” “Do you want me to carry that?”, or, “I cleared a path in the snow to your car and cleaned it off for you.” Or even, he might ask a more general question, like, “Can I help you with that?” but he’s asking about a specific task he sees me doing and possibly struggling with a bit. It’s not an all-encompassing, “Need any help?” called from somewhere else in the room by someone who doesn’t even see what I may or may not be doing. </p><p>Most of the time - yeah, sure - some help would probably be nice. But I know what I can do on my own, and I ask for help with the things I need it for. And I usually ask Sweetie. Even if that means walking past my parents, into the other room, and interrupting her from whatever she’s doing. And 99% of the time, she is more than willing to help. She rarely, if ever, asks if I need the assistance. But when I ask her for it, she’s right there for me, no eye rolls, huffs, or whines about it. She might say (kinda usually does say), “Yes, in a minute.” But she finishes the thing she’s quickly doing and does as I’ve asked of her. </p><p>And I think this is important. <i>Super</i> important. Sweetie has learned, by virtue of being my daughter, that some things are difficult for me. And so I need her to help me do them. Hubby obviously helps me out as well. <i>A lot</i>. But neither of them blindly ask me with every move I make if I need any help. Both he and Sweetie know I will ask them when I need them. They trust that I know myself and my boundaries well enough. <i>I will ask</i>. I <i>do</i> ask. Really, I will. </p><p>Sweetie, though. Man. If Mom asks me if I need help, and it’s a situation where I actually do need help, I’ll usually say, “Sweetie will do it.” And Sweetie will be right there and, if Mom protests that, no, she can do it so that Sweetie doesn’t have to get up or stop whatever she’s doing, or whatever...Sweetie actually responds fiercely, “No! I’ll do it!” As if to say, “No. she asked me, she’s <i>my</i> mom. I will be the one to help her. Not you!” </p><p>Or. Or! Mom will do her regularly scheduled ask of whether I need help or not (Seriously. It’s almost like a game at this point. I know she’s going to ask, and she knows I’m going to say no.) I’ll say no. But maybe now mom is actually near me and sees what I’m doing and probably feels that I really would be much better off if she just takes over. So she starts to do just that, or at least ask me again if I’m sure I don’t need help. It’s at this point that Sweetie will chime in with a stern, “She said no. She’s fine. Nana! She doesn’t need any help. Let her do it!” </p><p>I know I should be mad at Sweetie for talking to her grandmother this way. I should tell Sweetie to watch her tone and just stay out of it. But usually? I’m actually kind of impressed with her for knowing me so well, trusting my abilities so well, trusting <i>me</i> so well, and having faith in me that I can do anything I set my mind to and, gosh darn it, wondering why in the world can’t others know the same about me?! </p><p>I know. I know. My mom is my mom and she just doesn’t want me to do anything to exacerbate my pain. She knows I hurt. Probably knows I hurt much more than I let on. She wants to do whatever she can to ease any of this from my life. She’s a mom. She’s <i>my</i> mom. It’s what moms do. </p><p>But, think of it from my point of view.</p><p>To me, I hardly ever move. I sit on the couch, get up to go to the bathroom throughout the day, then always right back to the couch. I feel bad about not moving much. I feel like my lack of movement is actually weakening my muscles and ultimately making me hurt more. It’s good for me to move as much as I can! So if lunch or dinner needs to be prepared, even though I’m in pain, I’ll go to the kitchen to make it happen. With Sweetie’s help most of the time, for dinners, anyway. Mind you, Hubby is the family chef. I’m never up and actually <i>working</i> on creating a meal. I’m putting existing food on plates to heat up - because Hubby is at work weekday nights and Sweetie and I need to eat. It’s never a huge chore to make food happen for us cuz it’s already ready already. But it’s enough of a thing to get me on my feet, working through the pain, and doing what I need to do to feed us. </p><p>If I literally just sat on my butt all day, save for trips to the bathroom - which, honestly, that is pretty much my typical weekend anyway - with literally nothing else to do because everything is being done for me and/or brought to me - well, my muscles are just going to get weaker and weaker. My pain will get worse and worse. I will lose my abilities to do anything! And so, I need to continue to do what I can for myself. I need to push on. I need to, or I’ll literally lose all sense of myself. I’ll feel more helpless that I already do. I don’t need constant looking after, constant assistance. I am made to feel like I’m a fragile doll not able to take care of herself. Let me be me, so I don’t feel like no one at all. </p><p>Really. I do know my limits. I do. I do ask for help, from whomever is around at the time to do it. </p><p>And, sure, the moving I do to complete a chore like dinner preparation is not the significant amount of moving that I need that would truly help me. Exercising would be much, much more helpful. And, with enough exercise, perhaps the other, more trivial moving around I do wouldn’t be nearly as painful. But, right now, I personally see any movement as good movement. I’m not an exerciser. I know I should be. But I’m not. I’ll work on changing this mindset. I know it would be beneficial. </p><p>Anyway. That’s my rant of a post. Sorry. You probably won’t/don’t get what my big problem is, anyway. So what if I’m offered help a lot? That’s nice! People are looking out for me, not wanting me to do more than I should. Yeah. Okay. But it’s the blind asks, I think, that I’m truly upset by. You don’t even see what I’m doing, or you know that I just walked in the kitchen and haven’t had time to do anything yet, but you’re already asking if I need help. I don’t know! I just got here! I don’t know what I’m doing yet. I’ll let you know. I promise. </p><p>And, at any rate, I’ve got my Sweetie to take care of me. My fierce defender. My confident girl who’s confident in me. </p><p>I may not be able to do everything. I definitely know I shouldn’t even try to do everything. But with Sweetie’s help, together we can do anything. </p>Amy Linderhttp://www.blogger.com/profile/15496005772917020822noreply@blogger.com0tag:blogger.com,1999:blog-12404113.post-22816152043550316472021-01-23T18:43:00.003-05:002021-01-27T10:17:07.656-05:00I Am...<p><i> (Inspired by <b>In and Of Itself</b>, now available on Hulu.)</i> </p><p>... still here.</p><p>...still in pain. </p><p>...frustrated.</p><p>...angry.</p><p>...worried.</p><p>...anxious.</p><p>...depressed.</p><p>...defeated.</p><p>..,upset.</p><p>(My trial for my nerve stimulator that was supposed to happen in November, but was postponed until January due to Covid, was postponed again because my doctor had to go in for surgery himself. Oh, and insurance denied me anyway. New insurance now, but other patients in line got to sneak ahead of me during the transfer time. Now I’m looking at a procedure date in mid April. Not that they can even schedule it until a month out. But, still, I’m in line for April. Here’s hopin’...)</p><p>...bored.</p><p>...tired.</p><p>...sore.</p><p>...quiet.</p><p>...useless.</p><p>...sad.</p><p>...dubious.</p><p>...second-guessing.</p><p>...over-thinking</p><p>(Will my new insurance cover the procedure? What if they don’t? Why did the old insurance deny me? Why hasn’t my related appointment from last July processed through the insurance at all, one way or the other? Does it even matter, since I don’t have that insurance anymore? What if I DO need another psych eval to make the new insurance approve it, but no one is thinking right now that this is the case? Is not moving very much good for me because it at least helps me stay out of more pain? Or is my lack of movement just making everything worse and more painful in the long run? What do I need to do to put me in the best situation possible, given my situation at hand?)</p><p>...needing to be left alone.</p><p>...needing some assistance.</p><p>...craving independence.</p><p>...accepting my limits.</p><p>...wanting social time with people I love and whom I find interesting.</p><p>...not wanting to always be the one who makes the plans for togetherness.</p><p>...concerned that if I don’t make something happen myself, nobody will.</p><p>...a worrier.</p><p>...trying to remember I am a good, fun person people enjoy being around. </p><p>(If I had to pick one word tag off the wall of over 600 tags in the lobby of the Broadway show,<i> In and Of Itself</i>, I would assume the option would be there that said “I Am a Unifier.” Or, “I Am a Gatherer.” Something like that. And that is what I would choose for myself. I am the one who created the book club I was a part of for many years and which now continues without me {my choice - just not into it anymore.} I wanted a group of like-minded moms to come together for a safe place to discuss the trials and tribulations of parenting neuro-diverse kids and so I put that group together. I thought it would be fun to have a monthly game night with friends and arranged for that to happen too. But I am also the person who decided to “test” her friendship with her high school best friend and, at some point during that first year of college, stopped calling her to see if she’d ever be the one to call me instead. And she didn’t. So I am leery. Careful. A bit of a control freak. I bring together those I want to be with and make sure it happens regularly. I am a worrier who, on some level, feels that if I don’t work at keeping friendships going, that they will just fall away.) </p><p>...a wife.</p><p>...a daughter.</p><p>...a sister.</p><p>...an aunt.</p><p>...a mother.</p><p>...a writer.</p><p>...a woman.</p><p>...a problem solver.</p><p>...myself. </p><p>(I took Sweetie to a local Fall Festival 2 or 3 years ago. She was volunteering there and I was just hanging out enjoying the beautiful day. While there I ran into an old acquaintance and we chatted a bit, she wanting to know what I did for work. Now, what I did for work then is the same as now - I call people who are past due on their medical bills to try to help them resolve them with either payment plans or financial aid. It’s by no means a glamorous job, but I really enjoy it, as well as the people I work with. Still, whenever I’m asked this question- what do you do? - I don’t exactly feel super proud of what I’ve made of myself and the “career” I find myself in. Some of my coworkers are teenagers! I talk to a fair amount of deadbeats who just don’t care. Some angry people. It’s nothing amazing by any means. BUT - I told this person what I did and she said, in a rather impressed way, “So, you’re a problem solver!” Huh. Yes. Yes, I am. I help people solve problems. I like it.) </p><p>...relaxed.</p><p>...calm.</p><p>...introverted.</p><p>...awkward.</p><p>...friendly.</p><p>...easily over-stimulated.</p><p>...prone to snapping.</p><p>...a self-preservationist.</p><p>...the most pleasant person in New England.</p><p>(Yes. All of that. I am a quiet person who often does not know how to engage in small talk or contribute intelligently to conversations. I do not like large, loud groups of people and can not take being a part of such crowds for long stretches of time. But I know when and how to get myself out of these circumstances if I am at all able to. I take care of what I need to do for my own sanity. Self care, man. I’m not trying to be rude. I’m trying not to go crazy. And, yes, an older gentleman coworker of mine many years ago did, in fact, once tell me that I was the most pleasant person in New England.)</p><p>...amazing.</p><p>...an inspiration. </p><p>...so strong.</p><p>...gold.</p><p>...incredible.</p><p>...stubborn. </p><p>...a beautiful soul.</p><p>...beautiful.</p><p>...a martyr.</p><p>(I have Spina Bifida. I have done things people would have never believed I could have done. I have done things maybe I shouldn’t have done. I do things in ways that work for me, that are not exactly easy ways to get things done. But I get things done. I don’t want help for things I know I could or should be able to get done on my own. I know I’m in pain. I know my way will take longer or not be so “pretty.” But there’s a method to my madness. Let me be. I promise I’ll ask for help if I feel I need it or find that, yeah, my way isn’t working so great after all. I’m getting better at asking for that help. I don’t do things on my own because I want to show what an inspiration I am or how strong I am. I don’t feel I’m those things at all. But others have told me I am, time and time again. Whatever. I’m doing things because they need to get done and I feel I can do the things. If I can’t, I can’t. If my body hurts too much and I just don’t want to, I’ll ask for help. Change is hard. But I know I’m changing and need to slow down. I’ll slow down. But in the meantime, let me be and do - at least try to do - what I think I can do.)</p><p>...able.</p><p>...disabled.</p><p>...capable.</p><p>...handicapped.</p><p>...smart.</p><p>...thoughtful.</p><p>...funny.</p><p>...willing.</p><p>...ready.</p><p>(I know “disabled” is the more PC term. I know people-first language matters. But I personally don’t care. I prefer “handicapped” actually because I think it’s more accurate. Disabled to me sounds like I’m not able to do something. Whereas handicapped sounds to me like I can do a thing, I just might do it a little differently or need a bit of help doing it, either by person, machine or equipment. I’m up for trying most things. At least, I was more willing in my less-pained days. But my mind works just fine. I have a sense of humor about things. I can recognize my limits and take heed. But don’t count me out on anything. I’d like to give it a shot, whatever it is. Probably.) </p><p>...multi-faceted. </p><p>...a lot.</p><p>...trying.</p><p>...a reader.</p><p>...a writer.</p><p>...a puzzler.</p><p>...curious.</p><p>...one who appreciates the arts.</p><p>...Amy.</p><p>I am so many things. On any given day you can find me in a great mood, a blah mood, or a bad mood. Either all day long or changing back and forth multiple times throughout the day. Just like all of us. Who am I? Who are you? To everyone else, sure. But also to yourself. Just who are you and whom do you want the world to see in you? Think about it. Be deliberate. Make a choice. How you see yourself may very well not be how others see you. But is that okay? Does your own self image have to match how others see you? Think about it. I don’t know the answer. I think we can actually learn a lot about ourselves by learning how others perceive us. But it’s not everything. It’s not necessarily the whole truth. Figure out how you want to be seen. That’s a good start. Figure it out and get to actually being that person. But don’t be afraid to change. To falter. To be someone else from time to time. Like I said, we are all multifaceted, multidimensional. And that’s not only okay, that’s great! Just be aware that others most likely see you much differently than you see yourself. Be yourself. Be better than who you think you are. Be everything. And most importantly, be...</p><p>...still here. </p>Amy Linderhttp://www.blogger.com/profile/15496005772917020822noreply@blogger.com0tag:blogger.com,1999:blog-12404113.post-64944621261303366352021-01-09T17:17:00.003-05:002021-01-10T08:51:39.314-05:00Express YourselfI just finished the book, <i>Life at Hamilton</i>, by Mike Anthony. Anthony is the bar tending manager at the Richard Rodgers Theatre in NYC where <i>Hamilton</i> has been for its entire run. The book showcases Anthony’s many interactions with all sorts of different people - from the very, very famous to the everyday people lucky enough to find themselves attending a performance. It’s a great book! Very interesting, heartwarming, and real. Anthony can get a little long winded, and some of his run-on sentences have run-on sentences themselves. But as far as storytelling goes, he does a great job and it’s a really fun read. <div><br /></div><div><i>Anyway</i>...</div><div><br /></div><div>One of his stories tells of his encounter with a truly giddy little girl, maybe 8 years old, who is positively bursting with joy at her finally attending this amazing show. As he’s done with so many other young ones there to see the show, he excitedly asks this bouncing girl at intermission, “Isn’t it the best show you’ve ever seen?!” </div><div><br /></div><div>Which stops this girl in her tracks. No more bouncing. The gleaming beam of a smile instantly morphs into a serious look of consideration. She says nothing for several minutes as Anthony pours and serves her family’s beverages, and gathers the desired snacks her family has asked for. Finally, after much thought, the little girl serves up her answer. “Well, I don’t know if it’s the best show I’ve ever seen. But I do know it’s absolutely wonderful.”</div><div><br /></div><div>I love this story. And I understand this story. And, as soon as that little girl stopped bouncing and started seriously contemplating, I had a guess about this story. About that little girl.</div><div><br /></div><div>I thought to myself, “that girl is autistic.”</div><div><br /></div><div>Now, Anthony never confirms this one way or the other. Heck, it probably never even crossed his mind to consider it. He was simply endeared by this thoughtful little girl who wanted to give an honest answer to an off the cuff question. It is a great story. And, honestly, it makes no difference one way or the other what challenges this child may or may not be living with. Maybe she’s completely neurotypical and is just a thoughtful kid. But, for me, and my experience as the mother of someone on the spectrum, I can tell you - her response seemed very familiar. And a sign that she may just very well be on the spectrum herself. </div><div><br /></div><div>You see, Sweetie, and oh so many others who find themselves somewhere on the neuro-diversity spectrum, is unfailingly honest. Very truthful. And I can so easily imagine that if Anthony was asking a younger Sweetie if she thought this was the best show ever, she too would have stopped and pondered and given her most honest answer. </div><div><br /></div><div>You see, everyone on the spectrum is different, true. But a pretty common trait among many is experiencing a difficulty with understanding expressions, and communication in general. It’s typically at least a little difficult for an autistic brain to translate a hyperbolic phrase “we all” say, into something more real and relatable. It’s very much a learned skill, and for the autistic brain, it takes more practice than for others.</div><div><br /></div><div>Sweetie is now a young adult. She’s had years of practice with learning and understanding all sorts of sayings and interesting turns of phrasing. So, for instance, if she were now asked a similar question as this little girl about something equally as thrilling as finally partaking in a long-anticipated treat, Sweetie would understand and successfully translate the hyperbolic nature of the phrase and answer appropriately. Neuro-typically appropriately. As expected by any neuro-typical inquirer. </div><div><br /></div><div>But I can definitely remember some instances in her younger days when she wasn’t so great at interpreting common American phrase...</div><div><br /></div><div>I once asked a young Sweetie - maybe 4 years old, to go straighten up the bathroom sink area, since I was cleaning the house and this seemed a simple way she could try to help me out. Cut to a few minutes later when she called me in to the bathroom to excitedly show me the great job she did... by taking all the things on the bathroom counter and lining them up, end to end, in a straight line. Ah, yep. “Straightened up.” I guess she at least did do what I asked of her. </div><div><br /></div><div>Another time when, around the same age, she wanted me to do something for her or play something with her - I don’t exactly remember. But whatever it was, I told her to, “hold your horses.” And so? She went right over to her horse head-on-a-stick riding toy and, of course, held it. Probably also wondering why in the world this was a thing she’d ever be asked to do, and how it was going to get mommy to do the thing she wanted done. </div><div><br /></div><div>And then there was the time, same-ish age, when Hubby and I - lazy parents that we were - asked Sweetie to go to the upstairs bathroom and bring down a roll of toilet paper to the downstairs bathroom. She had many questions for us. We could see that she doubted this instruction very much. But we were clear and insistent. Bring the toilet paper that’s upstairs, downstairs. Well, I’m sure you already know where this is going. In just a few minutes, there Sweetie stood at the top of the stairs with her arms full of unraveled toilet paper from the in-use upstairs roll. </div><div><br /></div><div>All of these instances we thought were so funny. So cute. So typical, we guessed, of any little kid learning about what different things mean when they’re said. And, really, maybe that’s all it was. Just a typical kid doing typical little kid goofs in their learning to understand how language is used.</div><div><br /></div><div>But then again, maybe it was a sign of diagnoses yet to come, some 10 or so years later. Especially that lining things up thing. That is something that kids on the spectrum <i>do</i> like to do. And I think I remember her sometimes doing this with her toys as well.</div><div><br /></div><div>She was also - still is, pretty much - someone who you could <i>not</i> tease. She always thought she was being negatively picked on. That whomever was doing the teasing (mostly Daddy, Grampy or Papa D), truly believed whatever they were saying and were trying to convince Sweetie to believe it too. And. You know what? It literally just connected for me. As someone on the spectrum,<i> of course</i> she didn’t like this! She takes everything literally. There is no teasing to get, only truth. So when people she knows, loves, and trusts start telling her things she knows to be one way are, in fact, another way, of course that’s upsetting! Sigh... it’s tough to be a Sweetie sometimes...</div><div><br /></div><div>And there’s the fact that we had to go ahead and tell her, at 13 years old, that Santa wasn’t as real as she thought he was. At least not in the way she thought he was real. And she was shocked. She trusted us to always tell her the truth. We had always encouraged her belief in Santa, the person. Why in the world should she have ever thought we were lying to her?! That’s just not a concept - lying and deception - that was in her vocabulary. Nothing she would ever do, and nothing she ever expected from others. Especially from her parents - the most trustworthy people in her life. </div><div><br /></div><div>I could go on. Hindsight certainly is 20/20. When Sweetie’s PCP asked Hubby and I, about 3 1/2 years ago, if we ever considered Sweetie has High Functioning Autism, (at the same time I was suggesting to her that I thought Sweetie definitely has ADHD - which her doctor agreed with), well, we were pretty taken aback. “Noooooooo....” was my, “I’ve never considered that, ever” response. </div><div><br /></div><div>But then? We 3 got to investigating and learning, testing and figuring out that, “Yeah. Huh. Sweetie <i>totally</i> is autistic. No question about it.” Everything we read or otherwise learned about high functioning autism hit the nail on the head. Explanations for the quirky things Sweetie has always done, and her sometimes over-the-top reactions to what neuro-typicals would mostly consider no-big-deal happenings. </div><div><br /></div><div>And that whole “literal” thing. As described above, Sweetie - and many, many others on the spectrum - is very, very literal. She says what she means and means what she says (but maybe not - probably not - in the correct tone in which she’s supposed to say it.) She may think she’s kidding about something, but the way it sounds out of her mouth doesn’t always sound jokey at all, but much more serious. But it’s still the case that the words she’s saying are truthful and what she intends to say. She’s still working on the tone thing. Getting better all the time. She’ll get there. It’s just another of those learned skills that don’t come as easily to understand as it does to many others. We, her parents, understand this. And we’re working on helping others to know better to listen to <i>what</i> Sweetie says, not always <i>how</i> she’s saying it. </div><div><br /></div><div>So, yeah. I guess that’s it. Not sure if this was the post I meant to get out today. But it’s the post that came. Beginning with that little girl at <i>Hamilton</i> who so honestly considered her answer to a seemingly simple question, rounding the curve to cute and quirky things Sweetie did as a kid, ending with figuring out what’s really going on in that head of hers even now (as best we can, anyway.) It’s a process. It’s definitely a learning curve. It’s something that not all people are going to pick up on - even those who think they, for sure, know Sweetie and would have never guessed that she’s - <i>gasp</i> - autistic! No way!</div><div><br /></div><div>Way. Sweetie is High Functioning Autistic, and also has ADHD. We see it, she feels it, it’s a fact that she must deal with. And that she does deal with - beautifully. And getting better everyday about how she can fit herself - <i>as is</i> - more comfortably into the neuro-typical world around her. Not <i>changing</i> herself to fit. Just adjusting herself a little - her reactions, her understandings - to more closely align with what the rest of the world is trying to express to her, and vice versa.</div><div><br /></div><div>You see, it’s like learning a new language. Her native tongue will always be her own. She’s just learning, at the same time, to communicate her own truth, while also understanding the same from others. </div><div><br /></div><div>She may not always be doing that the <i>best way possible ever! </i>But she’s doing it honestly, because that’s the only way she knows how to do things. </div><div><br /></div><div>And she’s doing a wonderful job. That’s for sure. </div><div><br /></div><div>———————-</div><div><i><br /></i></div><div><i>Posted with Sweetie’s blessing. I’ve been sharing the link to all my posts of late with her, and will continue to do so. I’ve even invited her to my blog in its entirety, now that she’s 18. She says she doesn’t want to read it all. But she has read the recent links I’ve shared with her. For this post, she was a bit concerned with some of my phrasing, thinking my readers wouldn’t be clear about how some stories from her past went down. I assured her they would understand. But, beyond that, she is good with the overall post. </i></div>Amy Linderhttp://www.blogger.com/profile/15496005772917020822noreply@blogger.com0tag:blogger.com,1999:blog-12404113.post-18406610790743195432020-12-27T17:26:00.001-05:002020-12-27T17:33:19.566-05:00You’ve Got This <p>Huh. It’s been over a month since I last wrote. When we were in the middle of Covid quarantine. All good now! Back to work, feeling fine, and more or less at least temporarily immune to catching it again - depending on who you ask. It’s complicated. </p><p>Anyway - when I started to write this, it was December 20th, 2020, which means it was Sweetie’s 18th birthday! </p><p>You have not been looking forward to this birthday, Sweetie. Turning 18. Becoming an official adult. You still see yourself as a little girl and you don’t think you’re ready for all the responsibilities that come along with being a grown up. </p><p>I can’t say I can blame you, honestly. But I also want to assure you not to worry.</p><p>It’s not like a switch has flicked and we are done raising you. “You’re good to go! Be free, my child! You’ve got this - have a great life.” No, it’s not like that at all. </p><p>In fact, nothing has really changed, other than you can now vote, and it’s up to you to sign documents about your own health and personal dealings. But we can still advise you on what you’re signing, if you want our input. It’s up to you. Frankly, though, I’m not all that worried about any decisions you’ll make for yourself. Decisions that require paperwork, or not. You HAVE got this! You’re smarter and more reasonable than you give yourself credit for when it comes to making important choices about what’s best for you. </p><p>You are an extremely careful and cautious person. You do not take any chances when it comes to your own safety or that of those you love. You always err on the side of care and self preservation. Maybe to a fault. And maybe - almost certainly - this has a little to do with the touch of anxiety that twitches in your brain. That alert of fear that makes you just a bit nervous to move ahead on certain uncertain things. It’s not necessarily a bad thing. It’s good to be safe, to be cautious, to take your time. You look at the facts, you take the time for self reflection, you don’t let yourself be swayed by others’ mere, possibly uneducated opinions. You do you, and you are proud of it. And we are proud of you every time you stand up for your own convictions. </p><p>This trait of yours - to do and think as you wish, no matter others’ attempted influence - goes way back. We remember your kindergarten teacher telling us how you always played with the toys and tools you wanted during free time, never following along with what the other kids were doing. Even those kids you had become friendly with. Nope. You stuck to your guns and entertained yourself exactly how you wanted to be entertained. </p><p>You are thoughtful. You sometimes think you have no particular opinion on certain subjects - especially “grown up” subjects such as politics or finances. But you do have opinions, and understanding! And you can be very mature about what you think and how you express yourself. I remember when you were younger - maybe 4th grade or so - and we surprised you after school by taking you to the space and science museum. There was a gift shop at the museum and you asked us if this was a buying day or a just looking day. It had to be a “just looking” day, we told you. But you put up no fuss, didn’t ask for anything, understood that money could be a struggle for us. You respected and accepted our answer and went on about your surprise treat of an afternoon having the time of your life. Simple as that. </p><p>It may take you a minute or two to collect your thoughts in order to express them in a way that makes sense to you. But when you do speak them... well, those thoughts make sense to anyone listening. You are clear, well spoken and smart about why you believe in a certain thing, why you think a certain way. You clearly state what you need. We are constantly in awe of how well you can express what you’re thinking and why. You are wise beyond your years. </p><p>This may come through the most after you’ve experienced a bit of a meltdown. Meltdowns are something you experience when your senses have been overwhelmed. It’s a common happening for you, or anyone like you, who lives their life managing ADHD and ASD (Autism Spectrum Disorder) symptoms. So, yes, you may melt down, cry, yell, run away and slam doors. But we have learned to let you be when this happens. We give you a few minutes and, sure enough, in just a little bit you will inevitably come back to us, now calmed down, and tell us with a cool head the emotions you’re feeling, why you’re feeling them, and what you need from us to make a change for the better so that maybe this won’t happen again. Your words are wise and well thought out and we are always impressed. You know who you are and what you need from yourself and others to get by. </p><p>You are brave! To be able to voice these thoughts and opinions as clearly as you do, backed up with good reasoning and understanding of the situation at hand - well, it’s just beautiful to watch. And what’s more, you don’t care if others around you feel differently than you do. You know how you feel. You’re fine with - actually encourage - others to know and express their own true hearts. But whatever they all think or do is not going to stop you from trusting your own heart and living your life the best way you see fit for you. Most people your age want so much to fit in, be liked, and do the cool, popular thing. But you! You are bravely living your best life, no matter what others may say or think. And yet, you would never, ever admit to this bravery in this way. It’s just what one should do, how a person should be - true to their own self. You’re just living your life, making the most out of the cards you’ve been dealt - and doing it beautifully, in our opinion.. </p><p>You are kind and loyal. You truly care about others - all people everywhere, but especially those you love. You are a fierce defender not only of your own rights and beliefs, as described above, but also everyone else’s as well. You keep others’ confidences, even if they haven’t expressly asked you to. This, like all your wonderful characteristics, have been a part of you all your life. I remember asking you at some point in middle school if one friend or another of yours had a boyfriend or girlfriend. You wouldn’t tell me because you said it was not your information to share nor my information to know. Fair enough. But on the other hand, you understand when the important secrets need to be shared, and have asked for our help with big issues the few rare times when they have crept into your realm of existence. You just know how to take care of people - including yourself - and do what needs to be done to make sure that happens. Plain and simple. </p><p>Don’t get me wrong - you have your quirks. You do things we don’t like. You could be much more eloquent for our taste in how you get along with others from time to time. But you are you. At least Dad and I know why you sometimes behave in less than desirable ways. You have challenges you struggle with every day - struggles that the rest of us can’t even pretend to fully understand. But we have learned a lot and try to do the best we can to understand for ourselves who you are as a whole person. And we do what we can to educate others when they need a little bit more understanding themselves. We’ve taken care to make sure your particular needs are met. And I think we’ve done a pretty good job. Enough so that you have learned what you need to do for yourself in most cases. You’re doing great! We are so proud. </p><p>So. You are 18. Officially an adult in the eyes of U.S. law. But this is just the beginning. This is just a small stepping stone towards greater adventures, more adult responsibilities, and your whole life ahead of you. We are still here for you, and will be for as long as you need us. And I have a little secret for you... you will always need us, in one way or another. Just like we need you, now and always. I can’t imagine a world or a time when I won’t worry about you, or think of you, or hope that you are making good decisions for yourself and what will be your own family one day. </p><p>But from what you’ve demonstrated already? I’m not all that concerned, really. Yeah, you’ve got this. You will be - you are - one fine human being. And we love you so much. Happy birthday, Swee. Keep on keepin on. </p><p><br /></p>Amy Linderhttp://www.blogger.com/profile/15496005772917020822noreply@blogger.com0tag:blogger.com,1999:blog-12404113.post-22337501346577922662020-11-21T13:31:00.001-05:002020-11-25T11:25:58.976-05:00Yesterday Didn't Happen<p>Not the way it was supposed to, anyway.</p><p>That is, I did not have the procedure to start my nerve stimulator trial. Because - Covid 19 invaded the house. And quarantine ensued. </p><p>No leaving the house means no procedure. For now. Trying again in mid January.</p><p>It’s okay, really. I was actually becoming really sad, even borderline depressed, that I was going to go through this trial and have said trial end the day before Thanksgiving. </p><p>I don’t know that I’ve ever really explained in detail how this trial - vs. the actual procedure - actually works. So let me do that...</p><p>When one is chosen as a candidate for a nerve stimulator, there are many steps in the process towards actually getting it done. The main thing being that they first test out, with a trial period, whether or not this stimulator will actually work for you. So you have a procedure done where leads are put into your spine, much like an epidural is placed for a woman in labor. Once the leads are in, there’s a device taped to you back that controls how much your nerves are managed to stop the pain message from getting to your brain. This trial, where the leads are in and the device is taped on you, lasts 5-7 days. Days during which one should experience much less pain, theoretically. If this is, indeed, the case, then you may decide with your doctor that you want to go ahead with the actual procedure. So then you schedule a different time altogether when you will have that done. And that’s when the device that was taped on your back during the trial is placed inside your abdomen via a surgical procedure. </p><p>Basically, you have the trial so you know darn well that this thing you’re having done is actually going to work. </p><p>And so, as you can imagine, one should experience 5-7 days of relatively pain-free living during the trial period, assuming it all works as it should. But then the trial is over, the leads are removed, and you are back to living in pain from that day on until whenever the permanent procedure takes place (which could be weeks to months later.) In fact, I would say you’d most likely experience that returned pain as worse pain than it was in the first place, because you just had several days reprieve from it. So when it comes back it just hurts that much more. </p><p>And my trial was scheduled to start yesterday, the 20th, and end on this coming Wednesday, the 25th. The day before Thanksgiving. Which would have meant an incredibly pained holiday for me. A day that’s supposed to be fun and festive and wonderful would most likely have been anything but, to me. </p><p>I was truly not looking forward to that, as you can imagine. A major bummer.</p><p>So, I guess in the end, the fates took care of that worry for me and took the whole thing off the table. Trial now scheduled for January 15. Good to go - looking forward to it!</p><p>And I just keep on keeping on. I’ve been in pain this long, what’s a little bit longer? Best to make sure I’m healthy and 100% up for my trial to take place. It’s all for the good, all meant to be. </p><p>And for now, my job - and the job of everyone in the house - is to abide by safe living practices, keep our distance from one another, and get through this as best we can. Hubby and I have been out of work for a week and a half now, with one more week to go. By then our household should be well and truly past this and life can go on. </p><p>The break from work has been nice. But I can think of way more exciting ways to spend a work “vacation” than what’s been going on here. But then again, given the situation we find ourselves in, it could be waaaaaay worse. It’s not that awful. We’re all getting by. Surviving. Thank goodness. </p><p>So, that’s my update. Not the update I was hoping to report today, but an update nonetheless. </p><p>I’m reminded of a comedian’s comment I once heard. Don’t remember who it was, or what else he was talking about in his routine. But he was saying how he always loves when he’s next in line. He’s next! It’s happening! It’s almost his time! After all that waiting in that long line, he is finally next! The anticipation! The excitement! NEXT! Yes!</p><p>Well, I’m next, baby. Nerve stimulator trial - I’m coming for ya! I. Am. Next! And nothing’s gonna stop me now. </p>Amy Linderhttp://www.blogger.com/profile/15496005772917020822noreply@blogger.com0tag:blogger.com,1999:blog-12404113.post-22052286360875270452020-11-08T16:00:00.002-05:002020-11-08T16:05:32.553-05:00All the FeelsI’m here to write, but don’t know what to say. <div><br /></div><div>I guess I’m just glad for a brand new day. </div><div><br /></div><div>All the emotion, the pent up stress, the gloom -</div><div><br /></div><div>I feel it releasing, yet coming too quick, too soon.</div><div><br /></div><div>And it’s not just the race - Biden vs Trump. </div><div><br /></div><div>Although when I think of it, there’s certainly that lump</div><div><br /></div><div>of pride in my throat, a weightlessness, a calm</div><div><br /></div><div>It’s like our whole country has been soothed by a balm.</div><div><br /></div><div><br /></div><div>But aside from that there’s also this COVID-19. </div><div><br /></div><div>This thing that has controlled our lives, or so it seems.</div><div><br /></div><div>And with that, the holidays! And how to proceed.</div><div><br /></div><div>Do what people want, or what we need.</div><div><br /></div><div>What I need, and Hubby, and Swee</div><div><br /></div><div>Despite others saying, “all’s just fine, listen to me.”</div><div><br /></div><div>Am I crazy taking this seriously, listening to science?</div><div><br /></div><div>Or is the media and my peers making me biased?</div><div><br /></div><div>Others say, “Don’t worry, news just tries to scare you. </div><div><br /></div><div>It points out the worst, but they really have no clue.</div><div><br /></div><div>We are safe, there’s really nothing wrong,” </div><div><br /></div><div>Yet this virus is sometimes silent and often strong.</div><div><br /></div><div>It’s not that I don’t trust, don’t love, don’t miss you.</div><div><br /></div><div>It’s just that I want us all to be safe - that’s the issue.</div><div><br /></div><div>And not just us, our dear ones, our fam.</div><div><br /></div><div>But everyone I pass - we’re all on the lam</div><div><br /></div><div>from Corona, and we just can’t know how to proceed.</div><div><br /></div><div>It could not affect me, and - God forbid - it could lead</div><div><br /></div><div>To your death, and I just won’t have that be.</div><div><br /></div><div>Not on my watch. Keep us all healthy, if not happy. </div><div><br /></div><div>Let me stay safe, as I keep you.</div><div><br /></div><div>And together we’ll gather when we’re truly able to. </div><div><br /></div><div><br /></div><div>Okay - you think that’s it? I’m not done yet.</div><div><br /></div><div>See, I’ve got this pain in my back that just won’t get.</div><div><br /></div><div>But I’ve a date with my doc! November 20th’s the day! </div><div><br /></div><div>My trial for relief will begin - hurray! </div><div><br /></div><div>Cuz it hurts so much, y’all. It really does. </div><div><br /></div><div>To be finally pain-free - can you believe it, Cuz?</div><div><br /></div><div>Hubby says I’m a martyr, that I just always “take it”</div><div><br /></div><div>Without others ever knowing how much I can’t make it</div><div><br /></div><div>another day, another step, another minute. </div><div><br /></div><div>Well, the game has arrived and I’m aiming to win it! </div><div><br /></div><div>Honestly I just want to go to the store, </div><div><br /></div><div>Take a walk in the woods, yeah, and so much more.</div><div><br /></div><div>Man, I’m hoping this works, so many have had success.</div><div><br /></div><div>It’s my turn now, yes it is - YES!</div><div><br /></div><div>I’m betting on a pain-free holiday.</div><div><br /></div><div>One where I’m truly thankful and can say, </div><div><br /></div><div>I’m free at last! I can do! I can live!</div><div><br /></div><div>Oh, how happy I will be when I can give</div><div><br /></div><div>all my focus, all my care</div><div><br /></div><div>To the ones I love. And to not give a tear</div><div><br /></div><div>to these aches, pulls and pains</div><div><br /></div><div>Ahhhh, I’m hopeful I’ll see no remains.</div><div><br /></div><div>Wish me well, please wish me luck. </div><div><br /></div><div>That I’m well and promptly pulled from the muck</div><div><br /></div><div>And the mire, the terrible pit of pain goo. </div><div><br /></div><div>And I can let go of the pride that controls my boo hoos.</div><div><br /></div><div>Tears of joy, of relief, just - you know - relaxation.</div><div><br /></div><div>That’s what I need now - a new sensation.</div><div><br /></div><div>My body, my brain, my heart, my soul. </div><div><br /></div><div>Just, ya know, no more toll. </div><div><br /></div><div><br /></div><div>So anyway, that’s it. That’s all. It’s all there.</div><div><br /></div><div>The country, the virus, myself - I’m aware</div><div><br /></div><div>Of the changes that are coming! So good. So great!</div><div><br /></div><div>But all of it still so unsure - so we wait.</div><div><br /></div><div>There is hope, that’s for sure, but we just can’t know.</div><div><br /></div><div>Just hope and trust it all - every bad thing - will go.</div><div><br /></div><div>From the personal to national to worldwide...</div><div><br /></div><div>So much is at stake. We must set our mind, </div><div><br /></div><div>believe in ourselves and do not waiver.</div><div><br /></div><div>And can I ask just this one small favor?</div><div><br /></div><div>We may not agree in lots of big things.</div><div><br /></div><div>But we can get along fine if we all give wings</div><div><br /></div><div>to love. To trust. To just trying to make things right. </div><div><br /></div><div>By working together and saying goodnight</div><div><br /></div><div>to the struggles and strife that’s lead the way</div><div><br /></div><div>for so long. Let’s just be done with it, okay.</div><div><br /></div><div>Let’s come together and support this land, </div><div><br /></div><div>Our families, ourselves, and...</div><div><br /></div><div>Find the peace we can take to our hearts. </div><div><br /></div><div>I don’t know - it sounds like a pretty good start</div><div><br /></div><div>to healing - our country, ourselves, the earth.</div><div><br /></div><div>That’s my thoughts I’m done. For whatever it’s worth. </div>Amy Linderhttp://www.blogger.com/profile/15496005772917020822noreply@blogger.com0tag:blogger.com,1999:blog-12404113.post-12351653956851625692020-10-20T22:19:00.005-04:002020-10-21T19:33:31.466-04:00Nobody Knows Anything...<p> ...you really have to look after yourself.</p><p>Let's start with my chiropractor (although I have several instances of all sorts of doctors not knowing what they're doing, in terms of what I need...) </p><p>I needed a new back brace. The old one I currently have is not great, but only because the velcro has worn out. It's a brace I got at CVS some years ago. Chiropractor tells me to get a new one. But CVS doesn't have the one I got before as a new model. I don't know what to get. So chiropractor does her own research and tells me her opinion on another brace from some online company. </p><p>Fine. I'll get that.</p><p>I don't like it. I think my chiropractor likes it because she thinks it will sit lower on my hips. But it really doesn't. it actually sits higher. So much so that the bottom edge of the brace actually rests at exactly where my "point of spina bifida" lies. Meaning it lies at where my spine was closed when I was a newborn. Which is a very sensitive spot. So it aggravates my initial operation spot. And I hate it. No good at all.</p><p>Doctors don't know everything.</p><p>In preparation for this post I ran through my memory of all the times doctors advised me to do something, only for that advice to mean nothing to me, or actually ended up being bad advice. I have 11 instances of such times. I'm sure I'm forgetting many others as well. </p><p>The earliest example I can think of (as an adult dealing with my own care) was when I went to the doctor (not my primary, but whomever was in office at the time) with crazy symptoms, and I was promptly admitted to the hospital because "maybe its spinal meningitis" So, to be safe, they admitted me.</p><p>Turns out I just had mono.</p><p>I guess it was good they were being cautious? But - man! I just had mono. Send me home and to sleep, why doncha!</p><p>Back to my chiropractor... I'm just... I don't know. I've known her for about 20 years now. She thinks we're more friendly than I really consider us to be. I've started and stopped chiropractic care with her several times over the years. She <i>did </i>get me through pregnancy, so that's something. </p><p>But right now, with my current situation (and she is fully aware of my current situation) there are, I believe, 3 or 4 major things wrong with my spine right now. And she has admitted that she can't adjust me as she would a "normal" person to solve at least one of these problems, because my spine doesn't even have vertebrae to adjust at the location that needs adjusting! So - what exactly is she doing? I don't know.</p><p>And she really wants me to try laser therapy, which is something she offers. It's a slow process... and it may make things actually feel worse before they start to get better... maybe... but it's something to try.</p><p>No freakin' thank you. I've tried laser therapy with her before, also at my lower back level. And it seemed to put me in more pain than I started with. And so what did I do at the time? I slowly slinked away into the night, never to be heard from again (until there I was, when I started up with her again this past March.) </p><p>Anyway, I'm not about to do laser therapy with her again right now. It made my pain worse, and I quite frankly can't get any worse right now. I wouldn't be able to take it. And even if it ultimately helps, it's a slow process. I need as fast a fix as possible, which this nerve stimulator would be. But... it's just not happening fast enough. I called yesterday to see if there's any update on when my procedure will happen. Nope. No update. Don't call us, we'll call you. Great. Yippee. Keep on keeping' on. </p><p>As for the last appointment I had with this pain and spine doc who will perform the nerve stimulator procedure... just previous to this appointment, I had an MRI of my thoracic spine. Mid spine. At the appointment, doc asks me if I'm aware that I have (he used the correct scientific term) fluid in my spine. Uh, no. I've since investigated that this is Syringomyelia, which is a condition that can cause increasing pain and deterioration of the spine. Awesome. Anyway, he didn't seem all that concerned about this, and assumed I've "probably" had this all along, and it wasn't going to disrupt what he had to do for the nerve stimuator procedure anyway, so it's all good. But...wait, what?! What the heck! I don't know! Maybe this is a new occurance for me and something important to be aware of. I honestly don't know. I've since tried to look at notes on my past MRIs over the last several years and, no, I don't think I see any evidence of this phenomena before. But, you know, it's all crazy doctor speech that I can't really understand anyway. My point being - maybe fluid in my spine is a relatively new occurrence, but since I'm not sure, my current pain and spine doc is just assuming it's always been there and he's okay with thinking that, but... IT'S NOT COOL TO ASSUME, GUYS!!!! GAH!</p><p>So many other times docs have lead me astray...</p><p>Let me just say that most primary docs I've ever had haven't had a clue about spina bifida. So they've always erred on the cautious site. Good... but super annoying...</p><p>I have always tended to get a ton of UTI's. It's just the way it is for me. And it makes sense, given that I self cath myself. Germs invade. Bacteria collects. UTI's happen. But docs in the past for me have become really concerned that I'm getting too many infections, and have sent me for major testing to figure it all out.</p><p>There's nothing to figure out, guys. It's just the way it is.</p><p>Another example: when I was pregnant with Sweetie... all was going super well. My OB/GYN admittedly didn't have experience with any other mom with spina bifida, but she was great and happy to work with me and educate herself as we went along. All was well... until she went out on her own maternity leave, and I was left with whomever. I was promptly scheduled an appointment with the anesthesiology team, presumably to see how they were going to handle my labor pains, since I already figured I couldn't have an epidural. Instead, that appointment (at 8 months pregnant, or so) turned in to the local anesthesiology team telling me I actually couldn't come to the local hospital to deliver, as I'd planned to all along, because they said I needed a "tertiary hospital" (which they actually were!) since they couldn't handle any unexpected emergencies that I may present, but a tertiary hospital could. Huh. Interesting. So, at almost full term, I was sent to another hospital, about 1 1/2 hours away, up north, in the winter, because they were better informed to deliver my baby than the local hospital was. </p><p>In the end, I'm not complaining. They were very well informed where I delivered, very experienced with my "type" and my experience all around was great. Couldn't have been better.</p><p>And I got my freakin' epidural, thank you very much.</p><p>Still. It would have been nice to have my delivery plan in place from the get go, instead of switched on me in the 11th hour because the docs were finally admitting they didn't know how to effectively help me.</p><p>Another ill informed medical professional experience... I once got new leg braces because I expressed (as an adult) that I wished I could sometimes wear high heels if I wanted. So - he made me crazy braces that technically would have allowed for this... but I absolutely hated these braces, they didn't help me at all, and I ended up going to get my tried and true style shortly thereafter. Sure, it would have been nice to have the option to wear different heights of heel. But I'd so much more like for an educated brace maker to tell me why it's really best for me to stick with the style I have. Ultimately, that's what I got. But I had to endure crazy "I'll do whatever you want" guy first.</p><p>An let's not forget... about 2 1/2 years ago I was referred by my PCP (who, awesomely, actually does have a great knowledge of spina bifida and has been a wonderful resource for me) to a neurosurgeon up north (at the same hospital Sweetie was born at) to investigate and resolve my increasing back pain. Long story short... yes, it was found that I have a tethered spinal cord, which absolutely could be the cause of my pain (just like it was about 20 years prior). But that surgery 20 years prior, while resolving my pain, resulted in much weakened abilities. Prior to that surgery, I only needed my leg braces to get around. Ever since that surgery, I've also needed a walking stick to aid in my mobility. It's a risky surgery. And one I'm not excited to repeat, if I don't have to. Anyway... it was also discovered, at this same time, that my shunt had malfunctioned. And the neurosurgeon (who was a pediatric neurosurgeon, because heaven forbid there actually be a decent amount of docs who can intelligently manage and treat adult spina bifida patients) reasoned that that, too, could be causing me pain in my back, as spinal fluid was building up at the point of my original spine closer. Fixing my shunt functionality, he reasoned, would theoretically take the fluid pressure off my spine and ease my pain. And it wasn't a risky surgery at all.</p><p>So - that's the surgery I went with. Heck, my shunt had clearly malfunctioned, for who knows how long, as evidenced by MRIs showing a great build up of spinal fluid in my brain. I HAD to have this corrected, and it may fix my back pain as well...</p><p>Well... 2 1/2 years later and my back pain is worse than every, getting worse every day, it seems, and... ever since I came out of that surgery, my head has felt "stuffy" and "full" and I've had non stop, constant ringing in my ears.</p><p>Yippy freakin' yay. Yep, came out of that one worse than I went in. Awesome. And what has that doctor said (that doctor who has now moved away to a hospital in Texas) - The stuffiness and ringing "should" get better with time, as I get more and more post op. And also? You know, you're just aging. Things hurt. It's just the way it is. There's not a lot of history with aging spina bifida patients to know what's really going on for them and how to fix.</p><p>Awesome.</p><p>You know? All of the docs I've every dealt with have been super nice. I've really liked them, personally speaking. But, boy, have they not known what to do for me, health wise.</p><p>And all this time, I've been trying. I've been learning. How to self advocate. How to make my own best decisions. But at a certain point... you go to doctors because they are supposed to know what's what. They are supposed to guide you towards best answers. They are the experts in their fields. And so you learn to trust them. You want to trust them. You take their advise, even while investigating yourself and trying to figure out the best for yourself. </p><p>The best answer I'd wish for is that all doctors thoroughly investigate their patients' portfolios and understand, to the best of their knowledge, their patients' full medical history and medical needs. What have their patients' tried before? What has worked? What hasn't? What are their patients' "norm"? And then - go from there with a plan best laid out for success.</p><p>But, of course, that's a heck of a lot to ask. Doctors have a lot of patients. They can't possibly keep 100% on track with what every one of them needs all the time. I reasonably know this, and appreciate it. I get it.</p><p>But - gosh! - I'm not the doctor. I go to see the doctors. And I want good, useful advice. Not best guesses. I want real answers. And I expect docs to have them.</p><p>But I have to always remind myself... I once read, not all that long ago, that med students get about 1 small paragraph worth of textbook info on what spina bifida is all about in their studies. That's it. So....</p><p>I'm the best go-to for answers on what's best for me. It's a shame, but I guess it's true. </p><p>I'm learning. I keep trying. I've got to be my own best advocate. I'm the one with pains and problems and questions... I've got to keep fighting for my own best answers. </p><p>Cuz nobody knows anything. </p><p>But I know myself. </p><p><br /></p>Amy Linderhttp://www.blogger.com/profile/15496005772917020822noreply@blogger.com0tag:blogger.com,1999:blog-12404113.post-20975608893236203512020-10-04T16:19:00.008-04:002020-10-04T18:33:23.845-04:00Looking Back, Looking AheadWhen I was a child, I was quite active. <div><br /></div><div>I've always worn leg braces. Everything from metal braces all the way up to my waist, to the plastic style I wear now, and for most of my life, which are only from below my knees down. But even as a younger child with those full length metal monstrosities, I clearly remember always being reminded to take it easy. Too much activity will break the braces. And, yes, I've broken my fair share of braces over the years. </div><div><br /></div><div>I remember being told as a child that I either <i>couldn't</i> run, or at least I <i>shouldn't</i>. My braces could break. I could get sores on my feet. It just wouldn't be good. So I never ran. But there was this one day... I was 2 houses down from my own, playing with a friend. A storm came rolling in. I needed to get home before the rain came down. And, boy, did I get home quick! I ran so fast - like I'd never ran before and have never run since. I felt like I was literally flying. I remember, as I was running, that I couldn't believe I was actually doing this in this very moment. But I kept going. I didn't stop until I was in my house and safe from the impending extreme weather. Wow! I <i>could</i> run! How about that?!</div><div><br /></div><div>I was young and wanted to have fun! With three able bodied older brothers growing up with me, I wanted to play with them as much as they'd allow (even if they didn't allow it) and do the things they did. I played kick ball with them in our front yard, complete with running the bases all the way to home base. They shot hoops in our driveway, and I did too. We played H.O.R.S.E. all the time and I became very adept at swishing the ball clean into the basket without touching the rim. Loved that sound! I also had my own jump rope and absolutely loved the feeling of hopping over a faster and faster twirling rope. Pure joy! And when my brothers got roller skates, I wanted my own pair too - and I got 'em! That activity, admittedly, was not something I was very good at at all. But my mom or dad, along with one of my brothers, would hold me up and allow me a careful taste of what it must feel like to roll around on tiny wheels. My family has always been great about offering me the opportunities to try out whatever I wanted, no holding back.</div><div><br /></div><div>As a pre-teen, after we moved from OH to the New England area, my parents joined in with the local Spina Bifida Association. This group offered us many opportunities each year to get together for socializing, information gathering and sharing, and just plain fun. One such fun outing was a ski trip to the nearby beautiful mountains of the area. Wow! Skiing!</div><div><br /></div><div>Now, my family in general was not a skiing family. I don't recall my parents ever going themselves or offering to take my brothers on a ski day or trip. Yet here I was, the physically disabled family member among us, and I was getting the chance to learn to ski! And indeed I did. I loved it! Spent the morning on the bunny hill, learning the tricks of the trade. And the only difference between me and an able bodied skier was that my poles had small skis on them too. This allowed me to use my poles for balance but also swoop and swish down the slope with ease. By the late morning I was going up with my instructor and dad in the chair lift, high up the mountain, and then flying down on my skies, bobbing this way and that, fast and faster still. This was such a thrill and I had really so, so much fun.</div><div><br /></div><div>But then it was lunch time and we went in for food. While there, we took off my ski boots to inspect my feet... which had developed an open, bloody blister from all the activity and the rubbing of the ski boot against my foot in a way it was not used to before. And because I can't feel below my knees, I had no idea this sore had formed. Had we not decided to check, I would have gone back out there after lunch. But it was not to be. My fun day of this new, freeing, wonderful activity was cut short. And I've never gotten the chance to go back again.</div><div><br /></div><div>I've also been horseback riding, both in my youth and in my younger adulthood. Nothing too taxing there, but a nice steady trot either within the riding area of the stable or out for a nice ride in the woods. Relying on this beautiful beast to carry me where otherwise I would not be able to walk. Lovely day, lovely walk, majestic new friend to help me through it all. I really do love horseback riding. </div><div><br /></div><div>And then, I as got older, I met my now husband, and adventured with him. Long walks in the woods, countless games of mini golf, even a vacation to France where we walked the Champs Elysees, climbed Notre Dame, explored the main and side streets of the city. All day long. Not a care - or pain - in the world. And we'd arrived there after a week on the Brittany coast, doing much of the same. Walking everywhere we could to discover the beauty and history that our surroundings offered us. And then, at night, dancing with friends at the local night club. Young, free, happy and in love. </div><div><br /></div><div>As an employed older teenager and younger adult, one of my first jobs was at a local, large, well-known bookstore. Shifts of at least 4 hours, maybe longer. And if my shift had me at the cash register, that was just fine for me! Tell me to stand in one spot for as long as you ask me to and I was your girl for the job! No problem at all. Chatting with my coworkers and the customers, tallying up purchases, bagging up books and sending people on their way with a cheerful "Have a nice day!" Yep, that was a great job. A little less so if I was put on the info desk, where part of the job was taking customers to the place in the store where their desired book lived. But only because I am a bit slower at walking than the able bodied person. I wasn't in pain, I was just slow. That's okay. Still, they had me on the registers as much as they could and I was happy to be there. A great first job.</div><div><br /></div><div>Back to my school aged days - particularly high school and college... I wore the heavy backpack on my back, just like every other student had theirs to wear. Yes, I went to a small, private high school, largely because the local public school was way too obnoxiously large for me to get around in a timely way, abiding by the provided bell schedule to get myself from point A at one end of the building to point B at the other and up several flights of stairs, all within the given 3 or so minutes between classes. Sure, they could have and would have made concessions for me, like allowing me to leave class early so I had extra minutes to reach the next. And there were elevators that I could have used, but these were not there for the average student to take advantage of. One could only use the elevators if they were physically incapacitated from using the stairs. And I was not about to allow myself to be pointed out as special. I did not want to be treated differently from my peers. If they have 3 minutes to get to class, then that's what it was for me too, as far as I was concerned. And if other able bodied classmates couldn't ride in the elevators, well then, neither could I.</div><div><br /></div><div>And so, to avoid all of this all together, and on the advice of my brothers who <i>did</i> go to this monstrously large school, I chose to go to the smaller, private, (all girls, Catholic) school. Me not being Catholic, but that's okay. Much easier to get around, yet still not a cake walk in any way. 3 or 4 stories of classrooms, no elevator, 2 different buildings to move between. Yes, and heavy, heavy backpacks holding me down, But I did it, gladly, relatively easily, and happily. No troubles here. High school was as good of an experience as it could have been. </div><div><br /></div><div>As was college. Yes, I was able to secure a first level dorm room, which I was allowed to keep for 2 years in a row. This being easier than walking up and down staircases in our old dorm buildings, again with no elevators. But I walked the campus to each of my classes every day. Sometimes close by, sometimes not so much. But I did it with not much trouble at all. Ah, to be young again. </div><div><br /></div><div>I have always been able to walk about as I've pleased, whether we're visiting a large museum, exploring a small town or big city (NYC! Central Park! Time Square! What an adventure!). I've walked miles at once down forest paths, enjoying the time with Hubby and Sweetie as they geocache and I simply cherish the time together. And, yes, with Hubby by my side I've always had the pleasure of having his support as he holds my hand or lets me lean on him as we go on. And, as time marches on and I've suffered the ever increasing displeasure of more and more pain in my back and numbness in my legs, I'd have to increasingly stop, sit, and rest a few minutes before I could carry on. But carry on I always did and always could. Moving on!</div><div><br /></div><div>No one has ever made me do more than I thought I was able to. And my walking companions - namely, Hubby and Sweetie - have always, <i>always</i> given me the time and space to rest when I needed it and move on when I alone determined I was able to do so. No judgement, no rushing, just me knowing what my body could do and when it could do it, and they graciously abiding by the will of my abilities. All is good, all is well. In my own time.</div><div><br /></div><div>But now. No. Not anymore. No more forest walks. No more adventurous explorations. Heck, no more grocery (or most any) store.</div><div><br /></div><div>And yet... the occasional trip to Target now has me tooling through the store using their electric seated carts - and I feel free again. Able to shop as I need without pain, numbness or exhaustion. Yay! Visits to museums (in pre-Covid times, anyway) have me rolling through the hallways and exhibit rooms using loaned wheelchairs from the front desk - and I am thrilled that I could go on forever in this way, not holding myself or anyone I'm with back from seeing anything we wish to see. I don't feel embarrassed or like a spectacle or <i>different</i> or anything I feared to be back in the day. I feel free and able and happy to have these options that can help me live a more full life than without them. </div><div><br /></div><div>Hubby doesn't geocache much anymore, but if he were to pick up the hobby again, he'd simply do it on his own or with Sweetie, never expecting me to join along. We haven't really vacationed much lately, and certainly with the current pandemic, we don't have plans for much travel coming up. But when we do get back to adventure as able, we will adapt, adjust, and make sure helps are in place to make the experience work well for me. I'll still get out there, it will just, perhaps, be in a new way. And also, once I have my nerve stimulator placed, that may in itself be all I need to feel young, free and able again, just like I did in my previous years. That will be lovely. I'm hopeful, but we'll just have to see.</div><div><br /></div><div>But whatever the case may be for me - I'll find my way. I'll keep doing what I want, in a way that is best for me in my current situation. I'm not going to stop. I'm just going to change. Change with the times. It's what we all have to do, right? Getting older has changed me, for sure. It changes everyone. But we adapt. We find our new way. </div><div><br /></div><div>And we find the best way to feel as free, able, and happy in the moment as we can. Times change, bodies and abilities change. For all of us. But there is always a way to do as you wish, engaging in loved activities in meaningful ways. </div><div><br /></div><div>Carry on. It can be done. No holding back. No looking back...</div>Amy Linderhttp://www.blogger.com/profile/15496005772917020822noreply@blogger.com0tag:blogger.com,1999:blog-12404113.post-15119868071031189952020-09-20T23:32:00.008-04:002020-09-21T17:40:02.738-04:00Purpose. Annoyances. Effort. Life. <p>He <i>always</i> has something to do. 40 hrs. a week job, plus overtime. Another occasional sideline job. Shopping. Laundry. Cooking. Preparing dinner plates. Working on projects in his workshop (currently a time sensitive project he was commissioned to do by a friend.) He’s on 2 Boards of Directors - one as VP, one as Secretary. Lots of effort into everything he does. He is <i>always</i> moving. And I love him for it.</p><div>She goes to one of the top STEM-focused charter schools in the U.S., a 2nd year Junior this year because there are too many requirements to fit into one Senior year. At least, for her. She struggles with ADHD, High Functioning Autism, Executive Functioning Dysfunction and a touch of Anxiety thrown in. All this to say - she’s super smart and works best with clear rules, expectations and structure. So, her rigid, intense school requirements actually work really well for her.... if she’s not overwhelmed by the work, getting distracted from the work, can maintain an interest in the work, etc. She’s got loads to do, and has loads of good intentions to get things done. But then she... needs to go to the bathroom, get a sweater, a snack, then remembers that she forgot to brush her teeth, realizes she’s at a good stopping point (hasn’t even started) to take her (very long) shower. Then it’s time to eat again. Then, then, then.... it doesn’t appear that she is willing to always put in the effort. But we know she always intends to do well, even if her mind works against her in getting there. She is <i>always</i> moving. And I love her in spite of it.</div><div><br /></div><div>The times that it looks like she’s actually working, she’s recently admitted that she may not in fact be working at all (she is super honest, at least there’s that.) She may be playing a game, watching a video, or texting with friends - if the schoolwork subject isn’t holding her interest. But now I know this and I can never really know what she’s doing. So - she thought I was naggy before about getting her onto her work. Now I’m <i>really</i> naggy. But, the more I nag, the less likely she is to do what needs to be done. We can never tell her what to do. She’s going to do her own thing in her own way no. matter. what. </div><p>I am always with her. Evenings, while he’s at work, and weekends when he’s doing All. The. Things. She can and does easily view me as the bad guy, always harping on her to sit down already and get to work. But, again, it really doesn’t matter what I or he says, or how we say it. She’s doing it her way, always. </p><p>So - he actually <i>is</i> doing everything humanly possible, and then some. She <i>needs</i> to be doing a whole lot more, in a more timely manner, than she is or believes herself to be capable of doing. She’s capable. Very capable. But her mind gets in her way. All the time. </p><p>And I? I do what I can. I sit on the couch. Will fold laundry - eventually when it’s brought to me. But he or she has to deliver the folded piles to where they belong. I’ll clean the bathroom sink and toilet when need be. Put the new roll of toilet paper on the roll, like no one else seems to know how to do. I’ll occasionally put dishes in the dishwasher or empty it. But there are others in the house who do this as well, so it’s by no means even close to a regular chore for me. I’ll prepare myself a weekend lunch. Make myself a cup of tea - but have her or him bring the prepared cup into where I’m sitting. I play <i>lots</i> of games on my phone. I read. And I wait for family time together. Which may not come on any particular day, if he and she are too busy or trying to settle enough to finally <i>be</i> busy at work that needs to get done. So, if this is the case, I... I don’t know. Go to bed early I guess.</p><p>Me? I don’t have work that needs doing. Well - I pay the bills. Balance the money. But I do this from the computer. The same computer she uses to complete a fair amount of her schoolwork. Schoolwork comes first. So I wait my turn. Maybe I’ll get my turn in earlier before she’s even awake on the weekends, or right when I get home after work. But maybe not. It depends on what she’s got going on. </p><p>I’m in pain. It hurts to be on my feet, up and about. So I sit a lot, which is far less painful. But - the more I sit, the stiffer I get and the more painful it is when I’m up and about. So - I shouldn’t sit so much. So I get up. I do the things I’m able to do. It’s good for me to move. But then I’m in so much pain that I just want to sit again. So I do. But that’s not good for me either. Stiffness and pain takes over, evident when I try to get up the next time. Which I must. Repeat cycle... </p><p>I am <i>not</i> always moving. But maybe I should be moving more. Or not. Who knows. </p><p>I’m annoyed by my chiropractor. 2 visits a week, every week. For months now. And no relief. Often she seems like she’s going through the motions with no personal attention to my needs. Other times we have long conversations about things I can and should do for myself. Only for her to ask me sometime later if I’m doing a certain thing - something she should well know that I’m doing because we’d previously talked about it at length! I’m sure I’m just irked because of the lack of pain relief. But I need to keep seeing her because, once I have the nerve stimulator placed, that will <i>only</i> help the pain. I’ll need to rely on her for the physical well being of the structure of my spine.</p><p>Speaking of this nerve stimulator... what a long, crazy process this has been. All the hoops to jump though - ridiculous! And here I am, set to jump through the last hoop later this week, and they <i>still</i> tell me the procedure won’t happen until November! It seems to me that a procedure specifically meant to help someone in constant pain would be something that would be able to be scheduled as quickly as possible. Want a nose job? I bet you could schedule that for next week. Want to stop living in pain? Sorry, you’ve got several things to do to set up this procedure. 5 or 6 months down the road, we might be ready for you. I’m calling tomorrow to see about that. Why on earth can’t it be sooner?! </p><p>I love my job, but after each weekend I feel like I just want one more day off from the office. Sure! I can take a day. Call myself out. That would be okay. Except... what exactly will I do with that extra day off? That’s right. Nothing. Just sit on the couch and have another boring day at home just like the 2 weekend days I’ve already had. Big whoop. I don’t need that either. Might as well just go to work I guess. </p><p>And Mondays start off with a trip to the chiropractor. Yay. One more visit to pay for without physical relief from pain. Great. </p><p>And he’ll start his work week too. And she’ll try to continue to climb out of her deep hole of schoolwork.</p><p>And I’ll continue on as I do. Not with much work, outside of work itself.</p><p>As little moving as I can get away with.</p><p>Not with much purpose, it often feels like, to me. Not as much as him or her, anyway.</p><p>A fair amount of mounting daily annoyances. </p><p>But with a whole lot of effort. I can assure you that.</p>Amy Linderhttp://www.blogger.com/profile/15496005772917020822noreply@blogger.com0tag:blogger.com,1999:blog-12404113.post-26382125069867930372020-09-12T19:01:00.005-04:002020-09-13T18:37:58.056-04:00A Part vs. ApartAbout a decade ago this weekend, maybe 11 years ago, I remember it was a cold and rainy few days on the Maine coast. It was our first time visiting Ferry Beach with several other members of our newfound family. Our church family. And, even though it was cold and rainy, we were in Heaven. This! This was the idyllic place that would become our annual post-Labor Day retreat get away. <div><br /></div><div>(Oh, and the 3rd picture down on my blog header? Of Sweetie twirling in the yellow cup? That’s at Ferry Beach. Every year I’d at least try to get her to let me take this year’s version of the same picture there on the playground. Not as easy to do as she got older. But I do have several others similar to this one. Fun to see her twirling through the years.)</div><div><br /></div><div>All this time later and we still look forward to this gathering of good friends, ocean breezes, talent shows, crafts, social hour, coffee on the porch, marathon games, trivia contests, communal meals, services in The Grove, and as much community or alone reflection time as one can desire. It’s all up to you.<div><br /></div><div>Except this year. Because of the COVID-19 pandemic still trying to control our every move, our Ferry Beach weekend was cancelled. Oh, there was still hope for awhile. Any of our members could have decided on their own that they still wanted to go. But as a whole church, the overwhelming majority thought (ours included) was that it just wasn’t safe to go. So - we are not there. </div><div><br /></div><div>Only one other time in the last 11 years, since we started going, have we 3 not gone, and that was in order to celebrate my parents’ 50th wedding anniversary with family. That year, we were sad to miss regathering with our church family after a summer away from each other, yet happy enough to know that Ferry Beach weekend was underway anyway and we’d see everyone the next weekend when we joined again in church to start another year together. </div><div><br /></div><div>But today - this weekend - none of our church family is at Ferry Beach. Furthermore, this year’s next weekend will not see us all joining together again in person. However, this year - tomorrow! - we will gather again for the new normal we’ve started to get used to - Zoom church. Our annual Water Communion service. Where, sometimes, we and/or fellow church members bring what we call “virtual water” with us, representing meaningful summer adventures we’ve had - like weekends away at Ferry Beach, for example. Well, guess what? This year, even the real water contributed for the service will, in essence, be virtual as we watch, via Zoom, the drops flow together, representing our coming together again for another church year, all as one. </div><div><br /></div><div>Ferry Beach. Our church. Our church family. Oh, how I miss them. We 3 all have. Not to say there aren’t opportunities to at least virtually be with one another. There were summer services. There are small group ministries. There are virtual and real life groups that enjoy various activities together, like crafting, book discussing, and social service enterprising. </div><div><br /></div><div>And have I chosen to include myself in any of these? No. And when, in better times, we have actually gone to church, per usual, am I a social butterfly before service or at coffee hour after, chit chatting with everyone I possibly can? No. In fact, a lot of times we head home very shortly after service, bypassing everyone else as they sip their coffee or tea and nibble on some treats. </div><div><br /></div><div>So, you might ask, if it doesn’t appear that I mingle with my fellow church goers much anyway, where do I get off saying that I miss church and its people? </div><div><br /></div><div>Well, I just do. I guess I liken my relationship with my church family to that of an old, comfy relationship. It just feels good to be in that sanctuary, to see those people, to hear the hubbub of friendly chatter, laughter, sometimes tears, hugs, singing, music...everything. Joys and concerns. No talking necessarily needed. Just listening.</div><div><br /></div><div>Our affirmation. Our weekly tradition of centering ourselves together. Deeply listening to and loving not only our new minister, but the sermons being thoughtfully crafted and enthusiastically delivered. Learning together, questioning together, challenging each other to be the best versions of ourselves not just for this one hour together, but always. Out into the world. Let it be so. </div><div><br /></div><div>See, my church family and I (and Hubby and Sweetie) - we’re all like-minded. For me, just being with them every week motivates me to be better, do better, and carry that light everywhere I go. At least that’s the idea. Do any of us truly work towards the betterment of ourselves and the world with every breath and step we take? Well, I won’t speak for others, I guess, but for me, I know I could always do more. Lots more. But I try. And I care. And I want improvement all around - for myself and others. And I aim to keep trying, every day. To educate myself more, to question more, to be more.</div><div><br /></div><div>At our church, that’s the goal. Be kind to yourself and to others, to listen, to question, to learn. To be and do goodness. However, in your own way, big or small, that that happens for you. And then try again tomorrow. Repeat.</div><div><br /></div><div>Just being in that physical space with those people surrounding each other and me. That’s enough for me to carry on, reminding me to continue on my pursuit of all things good.</div><div><br /></div><div>Anyway... what’s my point here? I’m writing this post on my little iPhone because Sweetie is trying (trying!) to work on some homework she is not at all interested in. That’s super difficult for someone with ADHD and Autism. It’s taken her all day of postponing to now finally sit down and try. I could have told her at any point that I actually want to use the computer and write. But, no. I’m not giving her another reason to put off her work, just so I can write. I can do it on my phone, as painstaking as it is. It’s actually okay. I’ve done it before (or on whatever non-phone version of a traveling device it was at the time.)</div><div><br /></div><div>At least once before, in fact. All those years back, 10 or 11 years ago, at Ferry Beach. Back when I was a regular blogger with a strict posting schedule to maintain. Who cares that I was away at the beach! Who cares that I didn’t have a computer or laptop available to me! I have to write! I have to post! And I will - with my little device. It’ll work. And it did. </div><div><br /></div><div>And I did it today too. I’ve written my post. Granted, I don’t feel as “one” with my thoughts successfully getting onto the page as I usually do as I sit at the desk and computer. I feel a lot more “all over the place“ in today’s electronic scribblings. But I’ll read it back. I’ll make edits. I'll give it a bit before posting. </div><div><br /></div><div>But I will post. Because writing, and sharing that with others, fills my soul.</div><div><br /></div><div>And we will, one day, return to Ferry Beach with our church family. And into our church itself, as soon as we can agree - and we’re advised - that it’s safe to do so. And, with that, I will feel complete again, participating in our regular weekly lessons on love, laughter and life. Just to be surrounded by these people, these lessons, is enough to fill my soul. </div></div><div><br /></div><div>But being apart from them? Zoom church is fine and I do look forward to our first service tomorrow and for all those to come in the weeks ahead. </div><div><br /></div><div>It’s just not the same as being together in person. At the beach, in church, anywhere. </div><div><br /></div><div>Not the same at all.</div>Amy Linderhttp://www.blogger.com/profile/15496005772917020822noreply@blogger.com0tag:blogger.com,1999:blog-12404113.post-68906080411784906462020-09-06T15:21:00.007-04:002020-09-07T18:15:55.785-04:00Suffice It To SayHello! And Happy Labor Day Weekend to you! Hopefully you are enjoying a special long weekend doing something you love with those you love. I and my people are doing just that. Sort of. Mostly it's the same as any weekend, but so nice to have an extra day off with no particular responsibilities.<div><br /></div><div>I'm happy to report that I've started to expand my audience a bit, here at Sweetie & Me. I've alerted my Facebook friends to my posts, and I've also checked in with a couple Spina Bifida groups I'm a part of, letting them know that this ol' blog exists and is up and kickin' again. I got some excited responses from a few people, so I am extra invigorated to keep writing and keep telling my truths. Yay, me!</div><div><br /></div><div>But with that said... now what? I'm not sure what my next topic is. The pain I deal with on a daily basis is a pretty huge topic for me, but I've just written about that. No need to really go on too much there. At least not until there's more news on my nerve stimulator procedure.
</div><div><br /></div><div>This blog is called Sweetie & Me and, therefore, I should write a bit about Sweetie. But I've already explained that she is older now and I feel she's more or less an off limits topic. Suffice it to say, she is doing well. I have high hopes for this school year. She seems motivated. She has a boyfriend, from the same tough school, and they both seem envigorated this year to do good things and keep on top of their grades. This pandemic we're all experiencing may actually be a help there, since they are doing remote school for now and therefore don't see each other every day, per usual. But we do allow them to see each other on the weekends (that family is part of our limited bubble.) In Sweetie's case, she can only see him if all school work is caught up to the best of her abilities. I believe he probably has similar conditions from his parents. So - they are both motivated to keep up with school if they intend to also be able to see each other. Hopefully these conditional hang outs will continue to be able to happen, grades will be up, and all will be well.</div><div><br /></div><div>Let's see, what else?... I could talk about my job (which I love), but somehow I don't think that's an appropriate topic. Suffice it to say, I've been employed at a particular job, full time, since the end of March, 2019, only to be put on extended furlough because of said pandemic, towards the end of March 2020. But, I immediately contacted my previous employer and they took me back with open arms - as a temp employee, with the understanding that when their own staff came back to work, those employees had first dibs on a place with the company and I may have to be ousted at that point. But, here we are in September and there remains enough room for me to stay as long as I wish. And it seems like my furlough is going to last awhile longer, probably through the rest of the year, so I'm very grateful to have a place to be. A place I love, with coworkers and management that I love. Honestly, I'd stay there forever if our family could manage it, financially. But we need more. So realistically, I'll most likely be moving back to where I was when the office opens up again. Or I suppose I could look for something else entirely? But I'm not sure how many well paying places with jobs I qualify for are hiring right now. And, honestly, with my back and general pain troubles, I don't feel like I'm in the best physical shape to be going out and about on job hunts at this point. So, this is where I am and that is most likely where I'll go back to, when able.</div><div><br /></div><div>Something else I've been doing lately on my "couch weekends" is reading. I haven't read a full novel in months! I used to be in a book club, for years and years, actually, until I decided I just wasn't that into it anymore. So I left. And haven't read since. Except, I have downloaded a bunch of Kindle samples, and I've read all of them. But never continued on with the whole book. I even actually downloaded a full novel, with every intention of reading it. But... eh. No. Not so much. But now? I happened to find a real life, paperback book (imagine! not virtual!) in my mom's office bookshelf that I picked up and started reading, and I love it! It's one of those books that you just want to keep reading and reading, but you also don't want to keep reading because you don't want the story to end. It's called <i>The Other Alcott</i>, by Elise Hooper and it's about May Alcott, youngest sister to author Louisa May Alcott and inspiration for the character of Amy in <i>Little Women</i>. <i>The Other Alcott</i> is a fictionalized account of several years in May's life when she was discovering herself, outside of what it meant to be Louisa's Amy. I've read many other historical fiction novels of this ilk, putting a fictionalized twist on other historically famous people and, I gotta say, it's probably my favorite genre of book. I think... I also like, I guess you'd call them fantasy? Stories that seem real enough but then have some sort of fantastical twist to them. I can picture in my head the cover of one, but I'm sorry to say I can't remember it right now to give as an example. Suffice it to say, I just like to read interesting offerings.</div><div><br /></div><div>I know there are other things I could do easily enough while I'm not able to physically be up and about much. Cross-stitch, for one thing. I really do like this craft and have created more than a few beautiful pieces in my day. But... I also get bored with them too easily. The one I'm currently in the middle of, that I honestly don't feel like I'll return to, is not colorful enough for my liking. Of course, I knew how colorful (or not) it was when I started it. But having it as an actual piece to work on... it's just not striking enough to keep me interested. And, I'm pretty sure I made a mistake in it also, which really drives me nuts and doesn't make me want to continue on with it. Which in this case is okay, because it was meant to be a wedding gift a few years back (yes, I said years. See? I get bored easily and leave things be too quickly). And I knew the color scheme would be appreciated by the couple getting married, if not me. But now, well, suffice it to say they don't need it anymore. I'm bored by it, the recipients aren't even still together, why even bother? But I could find another piece to start, I suppose. Maybe I'll take a look at my options. We tend to get a <i>Stitchery</i> catalogue every once in awhile. Maybe I will look into this... </div><div><br /></div><div>Yeah! I love the idea of being creative. I love to be creative, through my writing, crafting, whatever. I'm so, so inspired by other creatives, and Hubby and I - and I dare say, even Sweetie - love to find YouTube or Netflix videos that speak to the importance of creativity and the profound ways that even the simplest acts of artistry - any kind of artistry - can affect not only your own life, but the lives of others. Many <i>TedTalks</i> are good for that. In fact, just yesterday morning, scrolling through YouTube, I happened upon an interesting title and accompanying thumbnail. Oh, how I could recommend so many videos! <i>Vlogbrothers</i> are always good for some lighthearted yet meaningful takes on all things not only creative but technological, innovative and educational. But back to that <i>TedTalk</i> from yesterday. It stars none other than actor Ethan Hawke. We were dubious at the start, but in the end I can't even describe how amazing this video was. I'll just give you the link <a href="https://www.youtube.com/watch?v=WRS9Gek4V5Q">here</a>. Suffice it to say, it's well worth a watch (or two or three.)</div><div><br /></div><div>Anyway, I guess that's going to be all from me today. I'm interested to get back to my book. I'm interested to see if there's a <i>Stitchery</i> catalogue hanging around somewhere in the house. Sweetie is away at her boyfriend's house this afternoon and I've got some time on my hands to just be. Not that her presence really takes me away from much of my own "thing" when she is here. She does her thing, I do mine. We get by. But often I do end up feeling bad that we ended up ignoring each other all day long, too involved in our own interests to say much more than two sentences to each other. But no - she's not even here anyway. No need to feel badly that we sometimes live too much side by side and not enough together. Maybe when she gets home - if it's not too late - we three will play a game, watch a movie, or something. Reconnect. But right now, it's honestly and truly my time. Hubby is both working in his woodshop and alternatingly coming up to cook in the kitchen. I can do my own thing, and I will.</div><div><br /></div><div>Suffice it to say, for as boring and blah as I could say (and have said) life is these days, in a lot of other ways, it's actually pretty A-okay. </div>Amy Linderhttp://www.blogger.com/profile/15496005772917020822noreply@blogger.com0tag:blogger.com,1999:blog-12404113.post-45679033501759408262020-08-15T12:38:00.010-04:002020-08-25T20:11:11.862-04:00The Same Thing We Do Every Day, Pinky...<p> ... Try to take over the couch.</p><p>Because it hurts too much to walk.</p><p>Anywhere.</p><p>If a family member can get me the thing I want, I'm going to have them get me the thing I want.</p><p>Sweetie is my best helper and the one I turn to the most. I'm her Mom, teaching her good lessons on being helpful. Yeah. It's important <i>she</i> help me.</p><p>She and Hubby help me a lot. Others are willing to help, but it's them I turn to the most.</p><p>My parents? They are always willing to help me. But I prefer not to be asked if I need help. I'll let you know. This is what I prefer.</p><p>In fact, this is appreciated all around, from whomever. </p><p>I know what I feel I can do. Even if I do it in a different way from anyone else, it's something I'm up for doing and will go ahead and do it.</p><p>And I know what <i>doesn't</i> feel right to do. If I need help, I will ask. And I've got 4 other family members in the house who are happy to do the helping.</p><p>I'll ask, I promise. I <i>have</i> asked! They all know this. I'm proud, but not too proud to know when I need others to step in with some assistance.</p><p><i>Anyway</i>, that's really not the point here. I'm here to write about your enemy and mine! You all know him! You all hate him! He's the one... the only...</p><p>Pain!!!! (boos, hisses and general sounds of distain commence all around.) </p><p>And I have a lot going for me that causes me great pain.</p><p>1) I have a disc in my spine that is slipped, but inward towards my spinal cord.</p><p>2) I have another bulging disc.</p><p>3) I have a tethered spinal cord.</p><p>4) & 5) I have both arthritis and bursitis in my hips. </p><p>Yep - I got a lot of pain. </p><p>But ya know? Pain is funny. Not funny, "ha ha." But funny, "ow, ow." Or something like that.</p><p>It's funny because we all, each and every one of us, have had experience with pain in our lives. And there are lots of different kinds of pain, running the gamut from heartache and sadness to sharp, tear-inducing physical pain that drops one to their knees in a heap of sensory overload. </p><p>But none of us, absolutely <i>none</i>, can know how another person experiences pain.</p><p>Pain. Its a very singular, lonely experience.</p><p>Reminds me of the song <i><a href="https://www.youtube.com/watch?v=irDhNDZvtvY">Quiet</a></i> from the Broadway musical <i><a href="https://www.broadway.com/shows/matilda/">Matilda</a></i>. </p><p><i>Have you every wondered, well I have.</i></p><p><i>About how when I say, say red, for example.</i></p><p><i>There's no way of knowing if red</i></p><p><i>Means the same thing in your head</i></p><p><i>As red means in my head, when someone says red</i>.</p><p>We can't know if we all see things, visually, the same way as each other. And we can't know how we each experience any of the other senses either. Not smell, touch, taste, sight or anything.</p><p>And what feels great to one person may feel awful to another. That's the wonderful thing about us humans. We're each our own person, we like and don't like different things, and we all try to get along and understand each other as best we can, in spite of it.</p><p>Or at least that's the idea. Some are not as good at the "understanding in spite of it" thing as others are. But I digress...</p><p><i>Anyway</i>... Pain. No one else but you can feel or truly understand your own pain.</p><p>But people - doctors, namely, sure do try. And I don't like that game either. I really don't like it at all.</p><p>"How bad, on a scale of 1 - 10, is your pain? 1 being hardly at all, 10 being the worst pain ever."</p><p>I can't do it people. I just can't. 10, for example, just is never an option because no matter how badly I hurt, I'm still coping as best as I can, getting through my day as best I can, and I can imagine that, yeah, the pain may get worse. And when it does, I'll continue to cope. </p><p>Or, how about this one, "describe your pain." Uh... Well. It's... ah..." I guess with this one I start by explaining what my pain is <i>not</i>. It's not a sharp pain. It's more like a sore muscle pain. It's a tightness. It's constant, but sometimes much worse and sometimes not really all that noticeable. Depends on what I'm doing.</p><p>But then I get to thinking. Okay. What exactly am I feeling here, folks? Yeah. It <i>is</i> a tightness! I cannot move and stretch with ease because there's too much tightness. Okay. If I think of it as a tightness and not exactly pain, it's more manageable.</p><p>Sometimes I think of my pain as heat. Okay. It's just a sort of heat I'm experiencing. That's okay. I can deal with that. </p><p>I do legitimately have sciatic pain that runs down behind my right knee almost all the time. Sometimes that's definitely a pretty quick, sharp pain. And when it's not being that, it's just a dull, constant, low-number-on-that-dumb-pain-scale ache thing. </p><p>And, you know?, behind the left knee too. But I think the right knee is more constant. In fact, I can feel it right now. Behind the right knee - a steady ache.</p><p>Huh. It's there too behind the left knee.</p><p>Depending on what seat I'm sitting in, it's better or worse. Never gone. This chair at the computer is not so great.</p><p>Doctors have asked me if the pain goes all the way down to my feel. Well, that's a funny question...</p><p>No. It doesn't. But I figure that's because I can't feel below my knees. If I <i>could</i> feel, though, I definitely think I would have pain all the way down to my feet.</p><p>In fact, I do have a sensation of.... something... in my lower legs. A not pleasant sensation. This pain, perhaps, that I would feel, if I had the ability to truly feel it. </p><p>So, yeah. If I think about my pain differently, I can convince myself that it's not so bad. It's a heat. It's an ache. It's a tightness. It's a constant annoying presence. But I'll get by.</p><p>I think that's why I hate the number game so much. I <i>do</i> try to think of my pain in different ways and I <i>do</i> manage through my days as best I can. If the pain gets worse, I just adjust my thinking and I'll get by.</p><p>Probably what's worse, though, is all the pains together. Happening at the same time. I do experience that and it’s awful.</p><p>The lower back. An achy tightness. The sciatic pain. A constant ache with occasional sharp intervals of a... heat-like pain, maybe? And when I say "heat" I don't literally mean a rise in temperature. It's just my way of trying to explain. Trying to cope. </p><p>Anyway... The back and the legs together. Which is often experienced. Is... no bueno. </p><p>I am on a path towards helping to get this resolved, though, through a nerve stimulator. But they haven't called to schedule me yet. Still waiting. This whole idea is a post topic for another day. Not something I want to get into today.</p><p>And I do wear a (store bought, generic) back brace regularly. Every day to work. But I tend to take it off as soon as I get home. It’s too hot in the summer.</p><p>And I see a chiropractor twice a week. She wants me to wear the back brace all the time. Even when sleeping. She thinks I do do this, actually. I did for a bit. But, again, it’s summer now and way too hot for that. But I do wear it to work. </p><p>I take over-the-counter pain meds occasionally. Not often. But when the pain is worse than usual. </p><p>So I do have my ways of managing the pain. I’m not just sitting here being miserable with no attempt to fix it. </p><p>Today. Today is Saturday. A Saturday like any other Saturday. Or Sunday. Or evening. Or early morning before work. </p><p>Today (once I'm done typing this, that is. Yay! A change up from the norm!) I sit on the couch. Get up to pee. Get up to get some very easy-to-gather-and/or-prepare food. Have some wine later. And I just try not to be in too much pain.</p><p>I sit on the couch in particular way. With my feet up on the coffee table. This feels better on my back than with my feet on the floor. But when I get up from the couch, the fronts of my legs hurt from having been in this position. But, again, if I don’t do it, my back continues to hurt too much while I sit there, </p><p>It’s a no win situation, really. But I try to make the decision that cultivates the least harm. </p><p>I often don’t know how successful I am at that. But I try. </p><p>Hubby is gone today for much of the day. During the week, he works second shift. On weekends he grocery shops, because I can't. Granted, he's also the family chef, and always has been (me with pain, or not), so he knows what to shop for anyway. Otherwise, if he's home, he's often in his basement woodworking workshop, "making sawdust", as he says. </p><p>He's not around much, is what I'm saying.</p><p>Except weekend evenings, we three have our time together then, watching a movie or catching up on shows, playing a game. Something. It's nice.</p><p>But I do miss having more family time together. I would <i>love</i> to go out on an adventure some weekend with Sweetie and Hubby! We, historically, love weekend adventures! I suppose we still do. Yeah! We still do!</p><p>But... We've got things going against us, man. </p><p>This Coronavirus for one thing. Not even going to get into this one. Maybe sometime. Not now. Look it up if you don't know. But... you know. We can't safely go anywhere. </p><p>Love to go to the museum! Museums are either not open or they're just not feeling like a safe place to be these days. </p><p>Love to take day trips! Yeah, but what about stopping to pee? We could take food with us... but we can't really go to any destination without fear of intermingling with others at some point or another.</p><p>Oh! We could go for an easy hike in the woods! Geocaching! Yeah! That's Hubby's thing! And Sweetie enjoys it too! I enjoy the family time together, the peace and calm of nature. And... oh. Not the walking. Once upon a time, just a few years ago or so, I could at least manage a walk decently. Support from Hubby. Walking poles as support. Regular sit-down breaks. Yeah, I managed simple walks just fine.</p><p>But now? Uh uh. No way, no how. </p><p>Which, you know. It's totally understandable. No one is expecting me to go hike in the woods with them at this point.</p><p>But I'm thinking... like, I can't do <i>anything</i> that requires <i>any</i> amount of walking. I have to psych myself up just to go to CVS or Rite Aid for the one or 2 products I need, for goodness sake. What if it's a long check out line? I can't stand there waiting for more than a few minutes. And I'm definitely not going to any larger grocery store. I wouldn't even be able to get half way through the produce section before crying (literally) "uncle!" Thank goodness Target has that little ride-on electronic cart thingy. That thimy is a life saver for me! Love it! (Not that going to Target is anything we are likely to do much of these days. Thanks, Corona.)</p><p>So, you know... going any actual place is not really happening.</p><p>And just being a passenger in the car as Hubby drives around - even to beautiful, semi-far-off, new-adventury type places, it's just so... tiring. We did this early this summer. it was exhausting. We came home and passed out. Him in his Laz-y-Boy, I on the...</p><p>...you guessed it.</p><p>Couch. </p><p>So what <i>do</i> we do? As people who really, really want to get out and do something, but really really can't for not just one (globally pandemic-y) reason, but 2? Or more? It's just... Exhausting.</p><p>Like this pain. I manage it and deal with it most of the time pretty well. I am not a complainer, so I'm not bothering others with any constant info about how I'm <i>feeeeeeelllling</i>.... I'm trying to be a good mom, a good wife, a good family member. And it's all just...</p><p>Exhausting. Bringing me to tears from time to time, exhausting. The pain - the constant pain, the fitfulness, the social and political climate of the world... of the US in particular... the not being one to complain because, really, what good does that do anyway. it's just...</p><p>Exhausting.</p><p>So.</p><p>That's it. It's lunch time now, as I write this. I'll get up from the computer (Thank goodness! This chair does not feel great on my back and legs) and find me some food. Then I'll go back to my couch. Work on some crosswords. Wait for Sweetie to finish her shower (that will take awhile, I promise you) and then she and I will watch something fun. Maybe. That will be fun. Maybe.</p><p>Eventually Hubby will come home. I've asked to have turkey burgers and corn on the cob tonight. So, hopefully he stops at the store on his way home for those items. </p><p>We'll have a nice night together. I think we may watch <i>Hamilton</i> again. For the 5th time. Yeah, we really love it. :)</p><p>And then - sleep. </p><p>And then...</p><p>What will we do tomorrow, Brain?</p><p>The same thing we do every day, Pinky. </p><p>Try to take over the couch. </p><div class="big-box top" style="border: 0px; box-sizing: inherit; float: right; font-size: 14px; font-stretch: inherit; line-height: inherit; margin: 0px 0px 0px 30px; padding: 0px; vertical-align: baseline;"><div data-ad="mpu" data-google-query-id="CK2O1e24nesCFZrYyAodxOEIPQ" id="div-gpt-ad-mpu" style="border: 0px; box-sizing: inherit; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><br /></div></div>Amy Linderhttp://www.blogger.com/profile/15496005772917020822noreply@blogger.com0tag:blogger.com,1999:blog-12404113.post-5230431454026013622020-08-09T13:40:00.001-04:002020-08-09T13:55:22.946-04:00Watching My Stories...<p> Hello? Hi? Is this thing on? Yes?</p><p><i>Ahem...</i></p><p>Hi there. How are you? Me? I'm... okay.</p><p>My brother and sister-in-law visited last night. and my SIL asked me just that. And I answered... just that.</p><p><i>Okay.</i></p><p>Which she questioned, and I think I probably said something like. "Yeah." </p><p>But Hubby elaborated for me and told how my back is always hurting me all the time.</p><p>And SIL asked if I ever started going back to chiropractic care.</p><p>"Yes, I go all the time. Twice a week for awhile now. Doesn't do a darn thing."</p><p>To which Hubby elaborated that, "Well, it's helping structurally. But doesn't help with the pain."</p><p>I did then mention that I'm in line to get a nerve stimulator placed.</p><p>To which my mom said she/we've/I've heard from lots of people about how much this has helped them. "In fact, just today, I was talking to..."</p><p>Oh, good, great! SIL is happy for me that I'll have some relief once this procedure is done.</p><p>Why am I telling you all this? Because... did you notice how many people it took to tell MY story? Both Hubby and Mom filled in the conversational part of this back and forth, telling what I'm going through and what MY plan for relief is.</p><p>And, in a way, I'm grateful for this. Go ahead. Speak for me. It's okay. I'm used to it. </p><p>Another example...</p><p>Visiting my in-laws. Just the two of them, and the 3 of us. No other distractions. Just sitting and talking. Except me. Not much.</p><p>Except, hey, I do have this thing to mention. Here I go, mentioning it...</p><p>...And then Hubby does the "Oh yeah," thing, and goes forward with the story himself.</p><p>A little while later, the same exact thing. Except this time it's Sweetie taking the reins from me, galloping along with her version of my story.</p><p>Granted, this was a month or more ago and I have no clue at all what either story I was bringing up at the time was about. It very well could have been - probably was - a stories that "starred" Hubby in the first one, and Sweetie in the second one. So, sure. They may have been their stories to share. I don't know. But maybe they weren't? In any case, I presented two different stories/conversation starters and both times they were taken from me by others.</p><p>And, eh. That's okay. I guess. Go ahead. They're better conversationalists than I am.</p><p>(which is saying a lot, given Sweetie's Autism diagnosis. A diagnosis primarily known for its antisocial tendencies. And, yes, she is definitely antisocial.)</p><p>I could tell you all sorts of other examples of this. I <i>couldn't</i> tell you how many times, for example, my large family has been gathered and something comes up and I want to say something relevant to whatever is being said, but the back and forth banter is just so on top of each other that there's no butting in with my maybe/maybe not interesting addition to the topic. So what do I do? I end up raising my hand, like I'm in stinkin' 3rd grade, to let people know that I have something to say. So everyone stops. And waits. Waiting for me to say my certainly highly interesting and witty comment on the overall conversation. Which now, in this so-quiet-you-could-hear-a-pin-drop turn of events, seems to be anything but interesting and witty. Pretty stupid, actually. Aw, never mind. Go back to what you were saying...</p><p>I need to take a course on how to be a good conversationalist. Back and forth with one or two other people? Fine. As part of a group where we're really working together to solve an issue and hear from each other and work something out? I've got it! But just casually hanging out with others.... in a group larger than 4 or 5? They talk. I listen. Or one or the other of them "helps" me out by expanding on the story I started.</p><p>And I let them. And I don't mind.</p><p>Well, you know what? I kind of mind. </p><p>I'm the youngest in my family. So, even though I'm now in my mid 40's, I'm still seen as the baby. Also, we 3 happen to live with my parents for now. This doesn't help me gain any headway as being seen as my own independent adult. I'm a naturally quiet person. I'm a "do gooder" too. I tend to always want to be doing what I should be doing, so that others don't think poorly of me. All this. It doesn't help. I'm a much better writer than I am a speaker. I have never learned to have a great conversation with anyone. Or, specifically, with a group of anyones. </p><p>I need to learn.</p><p>I want to learn. I need to tell my own stories instead of watch as my stories are told. I know that's why I like writing so much. It's just me, telling my stories. No interruptions. No judgement. Just me getting to say whatever I want to or have to say, for as long as I want to say it, any way I want to say it. Absolutely freeing. </p><p>But I also want to learn to feel this freedom of my own speech. My own voice. It's something to work on, for sure.</p><p>I spoke to Hubby and Sweetie this morning about all this. And they both had some great bits of advice for me to practice. I'm sure there's at least a few TedTalks on the subject too. </p><p>The first step is knowing, right? I now recognize how much I let others tell my stories for me. And how easy it is for me to let them take the spotlight as I sit back, happy enough that I at least brought something up for others to chat about. "The <i>Prince of Tides</i>... it's neither about Princes nor Tides. Discuss." </p><p>But that's all about to change, people! I'm on a mission to learn a new skill. Talking! Chatting! Conversating! I can do it! Woo hoo!</p><p>But first, my back pain? Mentioned at the beginning of this post? Yeah. I really can't do much of anything, physically, while in so much pain. <i>Soooo</i>... I feel like I've got really nothing to offer in terms of great story telling from my own life experiences. Not a lot going on for me these days.</p><p>I’m sure I could write about it though. I’ll plan to do that soon. </p><p>And I'm getting that nerve stimulator! Sometime! Soon? Who knows?! I'm waiting for the call to schedule. </p><p>Just you wait, though. When I'm pain free (or at least feeling less pain) I'll be back on the move and back to doing things!</p><p>Oh the places I'll go! Granted, with Hubby and Sweetie. So if/when I have a story to tell, they will have had been certainly involved in the happening as well. </p><p>But, watch out! Yeah, I've got a story. And it's mine. All mine. And you're about to hear about it!</p><p>My way. That's right. </p>Amy Linderhttp://www.blogger.com/profile/15496005772917020822noreply@blogger.com0tag:blogger.com,1999:blog-12404113.post-33007491480313709012020-07-19T16:38:00.003-04:002020-07-29T08:22:32.143-04:00Back in the SaddleSitting here at the computer desk. A desk Sweetie has more or less claimed as her primary seat in our part of the house. Listening to an episode of <a href="https://www.andyssummerplayhouse.org">Andy's Summer Playhouse</a>'s podcast, EyeToEye, as I try to get myself back into writing. I've got the content, albeit changed drastically from what this blog used to contain. I currently have the time to devote to writing. I just have to buckle down and do it. Dive into a topic and go. Let's go...<div><br /></div><div>I guess I can, and maybe even should, first give a brief update on Sweetie. When last we gathered together here at Sweetie & Me, we were just celebrating her 15th birthday. Today she is 17 and a half and has finished her Junior Year in high school. However, in a fascinating twist of events, she will be entering Junior Year 2.0 at the end of August. Since she entered her STEM charter school at the start of 8th grade, not 6th grade which is the first grade available at Junior/Senior High School, she was a little behind in credit accruals. So she basically has 3 semesters of credits still to take in what would only be 2 semesters if she moved on to Senior Year. So - she's a Junior again. With a fair amount of room for Electives and study halls. It will be good for her and she has a great sense of relief in this taking of time. No need to rush toward graduation. This is not a race. It's all good. </div><div><br /></div><div>Another Sweetie snapshot to take a quick look at. Just over 2 years ago we complete a year-long process of moving towards a significant diagnosis for her. Just over 2 years ago, Sweetie was officially diagnosed with High Functioning Autism, Executive Function Disorder, and a tendency towards anxiety (but not quite "there" enough to be diagnosed with an official Anxiety Disorder.) The previous year to this, she was diagnosed with ADHD, Combined Form. These diagnoses did not come to myself, my husband or Sweetie herself as a surprise, and they have actually offered great opportunity for growth and development - for all of us. I won't get into any of these details now. Maybe not ever. Who knows. But just to say that Sweetie has dealt with some struggles her whole life, struggles that are now defined. This definition has given her, and us, a jumping off point for dealing with them in healthy, useful ways. She's doing beautifully and has grown into a truly insightful, caring, truth-seeking young woman. A young woman who learns more and more each day about what is best for her understanding of the world around her, and how to communicate her needs to others in correct and useful ways. She's doing great!</div><div><br /></div><div>As for me. As for this blog. I think we're going to see a significant shift here in post topics. Not only because Sweetie is 5 months away from 18 year old adulthood. She certainly doesn't need me sharing her life's details with the world anymore (I do that enough, still, on Facebook, anyway.) But because I find my life's changes and personal care needs changing - needing more attention in my own right. So, yeah. This blog may be titled Sweetie & Me. But it's time. Time to focus on me. Looking forward to doing that here. Letting my readers know what it's like for me currently as a physically disabled mom... of a physically able child. You got years of me going on and on about, really, just typical "mom stuff" where the disability hardly reared its (increasingly ugly) head. But now I'm older, maybe wiser, and - as I said - in a bit more of an "ugly" way in terms of my disability. (No huge worries. It's just that getting older sucks. Getting older with a physical disability <i>really</i> sucks.) And I'm feeling I need to get back to writing.</div><div><br /></div><div>Writing has always made me see things more clearly. Helped me sort things out. Helped me find my paths. And lately I've been feeling trapped. Trapped in the house, trapped in my bodily aches and pain, and trapped by my thoughts. That I want to get out. I want so much to write! But I also have a sense of... is it fear? Privacy that I want to maintain? Yet, at the same time, wanting to share my story, share my truth with my readers the best way I know how. Yet, at the same time, not overly worrying certain potential readers of mine with the way I see my life. What I live with everyday. It may be too much for some readers. Readers who are close to me in real life. And so, to not concern anyone unnecessarily, I haven't written. I don't write. And, in not writing, I'm doing myself a disservice. Like I said, writing is and always has been a sort of life saver to me. My written words bring me back to a sense of calm, a sense of reality that is much more manageable than floating disparate thoughts and feelings floating around my head, untethered. I need some tethering. I mean, other than the spinal cord tethering I've already got going on. Which I certainly could do without, actually. </div><div><br /></div><div>And so - screw it all! I'm going to write. At least for myself and for a small, trusted army of interested readers. And by "readers" I mean, so far, just one (other than those who happen to stumble upon my blog without any particularly advertising of it, that is.) But I know this particular reader will hear my truth in not only what I'm saying it, but <i>how</i> I'm saying it. Sometimes (a lot of times) it's the craft of writing that's more important (or at least equally important) than the writer's topic of choice. And that's what I need my readers to know and understand. Yes, I may write a post about my loneliness during this time of Covid 19 pandemic (oh yeah, that's going on too - I haven't mentioned yet.) But it doesn't mean that my readers need be concerned for my wellbeing or that I've gone off the deep end into a lonely abyss. I may need to write about my back and leg pain. Yo - it's pretty bad. But it doesn't mean my readers need to necessarily treat me with careful kid gloves in real life, not letting me do things for myself and live as normally as I am able. </div><div><br /></div><div>Anyway, I just need to write. And I'm happy to get back to it. Thrilled, actually! It took some time for me to dive into this post and start feeling comfortable at the keyboard again. But here we are, and here I am getting my groove on and feeling pretty darn comfy already. </div><div><br /></div><div>Looking forward to this new path that my writing is helping me locate and start down. Looking forward to sharing with my small but mighty audience, and seeing whom and if I want to share with others as well.</div><div><br /></div><div>Here's to a new start! Let's go...</div>Amy Linderhttp://www.blogger.com/profile/15496005772917020822noreply@blogger.com0tag:blogger.com,1999:blog-12404113.post-34345448858703332442017-12-20T09:19:00.001-05:002017-12-20T09:36:10.266-05:00Okay, So Maybe This IS Your Birthday Post...... Cuz it's definitely your birthday! 15th, to be exact. Happy Birthday, Sweetie!<br />
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(Original Post Title: <i>This Is Not Your Birthday Post</i>)<br />
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Getting back to the (original) title of this post... Correct. This is not <i>really</i> your Birthday Post. But I suppose you could call it your Official Birthday Post. I'll be writing the real one elsewhere, for your eyes only. Someday. It will be a place where I can really and truly reflect honestly on the past year. It's been a big one, with promises of more adventures to come. But more on that in your Actual Birthday Post.<br />
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For now, suffice it to say that Daddy and I are so, so proud of you and impressed with the thoughtful, ever-inquisitive, honest, caring young woman you have become.<br />
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You know the importance of hard work, and you get down to it - giving it your all - even if it might take some help with outside motivation to get started, and extra time to complete (true for all of us, sometimes.)<br />
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You know the importance of kind words and empathetic actions, even if it sometimes may be difficult for you to express them as intended, or understand them as they're shown to you (a difficulty for everyone, every once in awhile.)<br />
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You are unendingly honest, and to see you truly get worked up when you believe you have either unintentionally told an untruth, or believe you have witnessed others being not as transparent as they should be, is both a blessing (A truthful teenager! What an anomaly!) and, sadly, a curse, Why, indeed, can't everyone just "say what they mean and mean what they say"?! (my favorite quote, by the way, by a certain Dr. Seuss.)<br />
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You have fun friendships and wonderful peers in your life who support and get you, and whom you help lift up as they need lifting. You have found your "tribe" of cohorts and enjoy every moment spent with them. And when the stresses of schoolwork, or life commitments keep you away from friends too long, you feel terrible that you're being dragged away from "hanging out" with them online or in person to just chat and have fun. But what an important lesson this is that you're learning! Life can and often does get in the way of socializing and "just chillin'" with your friends... but your true friends will always understand and always be there for you when you return.<br />
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Your relationship with Daddy and me is lovely, real, difficult, relaxed, comfortable, trying, frustrating, and everything it absolutely should be. We three were talking the other night and you expressed to us, in a bit of sadness, that "you are the only ones who really understand me." And as we described how the "typical" teenager wants nothing to do with their dumb parents, you were in utter disbelief, saying that someone's parents <i>should</i> be the people who understand their kids the best and whom the kids should feel comfortable talking with about anything. Sadly, Sweetie, as sweet and amazing as that sounds, no... it's probably not the way most of the world's families with teens get along most of the time. But we sure are proud of you, love our open relationship, and are confident that you know for sure that you can always come to us with anything that's on your mind. And we know you'll actually come. Maybe not right away. Maybe after some private processing on your own - which is often times absolutely necessary and totally fine. But you <i>do</i> come to us. You <i>do</i> talk, even if it takes you some time to start, to find the right words. However long it takes you, whenever you're ready, we are here and you not only know it, but appreciate it. And so do we.<br />
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You say we're the only one's who understand you. Well, we sure are trying, anyway. But way more people "get you" than you realize, Sweetie. The world is full of caring, interesting, awesome people - family, friends, acquaintances, strangers, and everyone in between - who are willing and wanting to see people for who they really are. And with you - despite what less-than-pleasing front you may present at any given moment (don't we all!) - I know they see you for who you truly are - the amazing, honest, smart, great, caring, curious <i>you</i> at your core. Someone who's constantly trying to be the best <i>you</i> you can be - even when it's super difficult to show it.<br />
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As parents, who could ask for more?! We sure did luck out with you, Sweetie. You really are the best! (no, that's me.) You're awesome! (no, that's Daddy.) You. Are. <i>Great</i>. Yes you are.<br />
<br />
Well, now. Maybe this <i>is</i> your actual Birthday Post. Sounds pretty good to me. I've said what I meant, and meant every word I've said. Even though there are other specifics I could really go on about quite a lot... <i>eh</i>. I don't have to. Not associated with a Birthday Post, anyway. Yeah, maybe I'll write that other post I was talking about earlier - the one I'm not going to publish - just so I can sort out some thoughts for myself. But I'll do it in time. For now - all you need know is that today, on your 15th Birthday and always, Daddy and I are as proud as proud can be of you. We are here for you no matter what joys, concerns, challenges, or revelations lie ahead. And together we can get through anything.<br />
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But know this one thing for sure... <i>you</i> are strong enough and wise enough to handle anything that comes your way, <i>all on your own</i>, just because you are <i>you</i>. We believe in you and we know you believe in you too.<br />
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You don't need us as much as you think you do, Sweetie. But rest assured that we are here to help you realize even more clearly the strength, independence, confidence, and determination that already lies within.<br />
<br />
Come at her, World! She's ready for ya!Amy Linderhttp://www.blogger.com/profile/15496005772917020822noreply@blogger.com0tag:blogger.com,1999:blog-12404113.post-73377179240351905062017-06-14T08:18:00.000-04:002017-06-14T08:18:25.177-04:00Questions, Quirks and - SQUIRREL! <i>Written and published with Sweetie's permission...</i><br />
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<i>*************************************</i></div>
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So. It's the end of the school year. Sweetie's 8th grade year. Done with middle school - on to high school! I cannot believe it. Houston, we have a Freshman.<br />
<br />
Mind you, this is not the end of any ol' 8th grade school year. This is the end of 8th grade at Sweetie's new school! The public charter school, listed as the 44th best public school in the U.S., that Sweetie gained entry into only last July, just weeks before the academic year began. It's a fantastic school and she loves it. Hubby and I, as well as Sweetie, truly believe it's the best education for her, and she absolutely belongs there without a doubt.<br />
<br />
But. That's not to say her successes this year haven't come without a fair amount of struggle.<br />
<br />
Whenever anyone asks us how Sweetie is doing at her new school and how she's liking it, we say she's doing great and loves it... but she's definitely having to work for her grades, like she's never had to before. No more "easy A's" for sure. She works and she tries and she does her very best for every grade she's received, and they're not necessary all A's this time around. But we're super proud of her. We know the determined effort she's put in and have watched her question, cry, struggle, and succeed. She's doing her best and that's all we ask. The effort has surely paid off.<br />
<br />
But, in watching her question, cry, and struggle... in watching her get perfect scores on some things and really not so perfect scores on other things (like the important things - tests and quizzes), we really began to wonder what was going on. Trying to figure out why there's such a disconnect. She knows this stuff. She's a smart kid. She can do this! And yet - she hasn't been able to. Not very consistently, at any rate. She's not always been able to show what she knows when really called upon to do so.<br />
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She says she doesn't know how to study. Okay - fair enough. Her old school, and younger grade levels, have just not required her to work as hard to achieve success. Not as much has been expected of her as is expected of her now. Yes, she's "just" in 8th grade - middle school - but her new school truly is like a high school in what they expect of their students from 7th grade on up. So, yeah, I really do get that she's never been taught how to or been expected to really hunker down and study for any big tests, before this year.<br />
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But <i>I</i> know how to study. Heck, I've tutored study skills to many, many students in my day! I know what to tell her to do. I can help! And I have - several times this school year. She seems to be listening to me. She seems to understand how the tips I have for her could be helpful. And yet... she either doesn't follow through with utilizing my tips, or she's at least not utilizing them in an effective manner. <i>Sigh</i>... what to do....<br />
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And then there's that other aspect... Sweetie has always been quirky. Unique. "Weird" in the most awesome of ways! She, and we, have always completely embraced her unique, weird, quirky ways. Sweetie is awesome! Sweetie is great! Sweetie is smart! And... Sweetie is quick-tempered, highly sensitive, easily distracted, and not often the best judge of either understanding others' tones, words and/or behaviors, or able to accurately expressing her own thoughts and feelings.<br />
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Both teenager-hood and her new educational environment have made all of this much more apparent over this last school year.<br />
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Putting this all together - the disconnect with her grades, her studying frustrations, her quirky "personality" and behaviors - I finally decided to actively look into just what may be up with Sweetie. Is there something <i>more</i> - something we can actually help her with? So I sat down at the computer to do some searching. And, since the only "quirky" thing/condition I could even really name was Autism, that's where I started. But I was very quickly redirected to something else that seemed to describe Sweetie to a T.<br />
<br />
Yes! Oh my gosh! <a href="http://www.addvance.com/help/women/girl_questionnaire.html">This</a> describes her so incredibly well! THIS is our answer!<br />
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Once I discovered how many traits of this condition jived with Sweetie's life experiences, I told Hubby what I thought. He was, at first, definitely not as on-board with my eagerness to pursue a diagnosis as I was, but he pretty quickly came around to realizing that it all actually seemed to make a lot of sense.<br />
<br />
I wrote to Sweetie's guidance counselors. I wrote to her doctor. I asked, how do we figure this out? Hubby and I were directed by her doctor to a survey to fill out, and I handed over the teacher version of the survey to her school as well.<br />
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Then I told Sweetie what we were looking into for her, since I didn't want to be doing this all behind her back, and I knew her involvement would be key as we made our way towards finding some answers. I told her by simply stating, "You know, I've been thinking about you a lot lately, Sweetie, and I think I figured something out. I think your brain works a little differently than most others' do."<br />
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And she cried. "What do you mean?! I don't want to have a mental illness!"<br />
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I assured her that this was just my <i>opinion</i> at the time and this is just something she <i>might</i> have. I could in no way diagnose her myself. But we really should look into this. We <i>are</i> looking into this.<br />
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I told both her and Hubby about an awesome online magazine I found that has a ton of great information. Check it out <a href="https://www.additudemag.com/">here.</a><br />
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And in the next few days after that?... Sweetie seemed to come around. She was randomly asking me a few really great questions. What were some symptoms? Could I show her that magazine? and is it true that, if she does have this, she'd be able to get some help for her struggles?<br />
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Absolutely!<br />
<br />
Since then all three of us have learned a ton more about what may be going on with her. And we've enjoyed learning from a lot of great resources - key among them being <a href="https://www.youtube.com/channel/UC-nPM1_kSZf91ZGkcgy_95Q">this</a> Youtube channel. Jessica, this channel's host, is awesome and really informative. We've loved watching and learning from her. She's taught us a lot, made us laugh, cry, understand and even relax. It's all going to be okay.<br />
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In the last couple months since we've filled out the surveys, gotten back the teachers' responses, and scheduled and waited for Sweetie's appointment with her doctor, Sweetie has really pulled a 180 in her attitude towards the possibility of diagnosis. She had gone from "I don't want to have this!" to "I don't see how I can possibly not have this!"<br />
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And we agree. It all added up to a big, fat, "DUH!"<br />
<br />
Sweetie's new attitude was one of excitement in the possibility of diagnosis because, if she's diagnosed, she now has answers for why she is the way she is and - better than that - a path to getting some help. She knows how sensitive she is. She knows she can have a very quick temper over very little things. And I know she hates this. Any help to curb this - and other personal struggles - would be a great blessing for her.<br />
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But still... now I had gone from "person in the family who brought on this unpopular idea to look into" to "person (along with Hubby) who was now worried Sweetie <i>wouldn't</i> receive that diagnosis like she expected to get." I mean - what if the doctor doesn't agree with us? I mean - the surveys from her teachers did not seem very telling at all. She's good in class. She's smart. Nothing appears outwardly alarming about her behavior, as described by her teachers. All we really have to go on, it seems, is our own survey and our examples of bad/quirky/questionable behavior. Was that going to be enough?<br />
<br />
Well - we recently had that appointment, in early June. And...basically, Sweetie's doctor is amazing. She saw how the teachers' surveys actually were noteworthy, in that there were noticeable inconsistencies in how her different teachers see Sweetie/what her classroom experience is like from class to class. Sweetie's been seeing this doctor for several years now - she knows Sweetie! She's personally observed some of her quirks. And she listened to us. About how she behaved <i>this</i> inappropriate way in Kindergarten. How her 3rd grade teacher observed <i>this</i> about Sweetie's motivation level. How she recently reacted when <i>this</i> happened. How this past school year and hormonal changes seem to have made her life-long "quirky personality traits" more prominent and obvious. There's something about these quirks and inconsistencies that just all adds up to....<i>something</i>, right?<br />
<br />
Right.<br />
<br />
Diagnosis: ADD and <a href="https://www.additudemag.com/what-is-executive-function-disorder/">Executive Function Disorder</a>.<br />
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Well then. Good. We all agree and can move forward from here. Starting with some daily supplements for Sweetie to take to help with focus, and immediately working to put in place a 504 Plan for the next school year, based on some suggestions for accommodations from Sweetie's doctor.<br />
<br />
BUT - Sweetie's doctor also wants her tested for possible High Functioning Autism or Asperger's Syndrome. (there is a difference between the two, but only really in how they manifest. With High Functioning Autism, the young child struggles with language development. This was definitely <i>not</i> Sweetie's experience, so I'm leaning toward Asperger's, if anything.) The process to get this diagnosed is quite lengthy, and it means making more appointments for testing with doctors and psychiatrists who schedule out several months ahead. But it's a process we'll go through to get it all figured out.<br />
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This suggestion of possible Aspergers was/is surprising to we 3... but, I don't know... maybe not <i>that </i>surprising. I guess what we see in Sweetie as manifestations of Hyperactivity (impulsivity), and her lack of great understanding of social cues, among other things, is what's leading Sweetie's doctor to make this suggestion. <i>She's definitely not H - she's clearly not hyper. But have you ever considered High Functioning Autism or Asperger's?</i><br />
<i><br /></i>
Everything we listed from there on out - Sweetie's poor time management skills, her literalness, her quickness to temper, her extreme sensitivity, her preference for structure, her sometimes troubles with transitions - all seemed to be another check mark in the Asperger's column, and maybe not so much a symptom of her ADD (or ADHD, as we had self-diagnosed.)<br />
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But, with the warning that we would be looking at at least a year-long process before getting any diagnosable answers on the Asperger's front, we knew we wanted and needed some sort of immediate help for Sweetie to grab hold of her challenges in the present. The ADD and Executive Function Disorder diagnosis, starting daily <a href="https://nootriment.com/dmae-for-add-adhd/">DMAE supplements</a>, and a letter to her school requesting accommodations, function as just that - immediate help for some immediate issues.<br />
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I know there must be readers out there who think, you know, maybe it's just that this new school is too much for Sweetie. She can't handle it, shouldn't <i>have to</i> handle it, and would be better off in a less academically challenging environment. I mean, it's just been this year that she's been struggling under all the pressure of so many difficult assignments and much greater expectations. But I say, absolutely not! And Hubby and Sweetie agree. We know this is where she belongs. She does love this school. She just has a whole new world to try to navigate that she's never had to make her way through before. And it's difficult. Because she legitimately has some differences in the way her brain works. And now we know. And now we can move forward with greater success.<br />
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I'm actually extremely thankful for these challenges from this new school, since they helped bring to light some issues Sweetie has always had, yet has until now been able to <a href="http://www.greatschools.org/gk/articles/understanding-girls-with-ad-hd-symptoms-and-strategies/">fly under the radar</a> with. Girls just don't present with ADD/ADHD like boys do. Boys with ADD/ADHD get diagnosed way more often than girls. <i>Smart</i> girls with ADD/ADHD especially can easily get by in the elementary years. But as soon as the stricter, more academically challenging middle or high school years hit, then everything starts to break down for girls with ADD/ADHD. Sweetie can no longer manage her time like she once could fake her way through, she can't afford to daydream, process the onslaught of rapid new information, manage trickier social cues, etc., etc., etc.<br />
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Imagine! If Sweetie <i>had</i> stayed at a hometown public school throughout high school, she likely would have continued to breeze on through, relatively easily earning her A's and high B's. And then? She would have gone off to college - probably a noteworthy college where perhaps she may have even earned an academic scholarship or two - and... flailed. Badly. So - yeah. I'm super happy that this has all been figured out now, so she can get the accommodations and other helps needed to get herself back on track, increasing her self confidence and helping her studies improve. If she can acquire the necessary skills, techniques and accommodations today, she'll be ready to tackle the world head on tomorrow.<br />
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Yes, Sweetie's got quirks. She's always had them. This "new development" is not the "fault" of her new, tougher school, nor is it <i>new</i>, really, at all. She's a smart, conscientious girl who has always loved school, has always treated her homework like her job - a job she has no choice but to do her best on and complete in the timeframe given. No complaining, no issues. She just has always done her work and gotten great grades, the end. So when that wasn't necessarily happening this year, <i>and</i> her quirks seemed to be getting quirkier, <i>and</i> she just didn't seem to be maturing socially/behaviorally like her friends and peers, we knew it was turning into something that needed exploration, not dismissal. We were no longer able to comfortably say, "yeah, we don't like it, but that's just the way she is. It's just her personality." Well, you know what? It <i>is</i> the way she is, but there's good reason behind it. And the good news is, it's something for which she can get help!<br />
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Sweetie is still Sweetie. Nothing has changed. Just because she now has a diagnosis doesn't mean she now has an excuse, or a label, or a reason to feel defeated. Heck, no! Just the opposite! If anything, she now knows that the difficulties she's experiencing/has experienced her whole life are due to a real medical condition. She's got nothing to feel bad about. It's nothing she's personally done, nothing we've done (or not done) in raising her, that has created the struggles she's been dealing with. Her brain just works a little differently than others'. And! There are accommodations that can be made to help her succeed again. Medication (if needed), supplements, techniques, and support. We've got answers. And with answers there is learning, growth, and - best of all - thriving.<br />
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The only real difference for us as her parents, as her family, is that now we too have answers and understanding. We see how she needs us to be more understanding of her quirks, and less angry when she's not able to do something the way we think it should be done. When she doesn't "get" something "so easy", now we know it's not because she's just being stubborn. She really does need help seeing things in a different, clearer way for her. A way that makes sense for her. It's okay. She'll get it, if we just give her time and help show her the way, in a new way.<br />
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Understanding leads to success. That's the name of <i>this</i> game. Set up the board -we're ready to play!<br />
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<br />Amy Linderhttp://www.blogger.com/profile/15496005772917020822noreply@blogger.com0