In Case You Were Wondering

So this random lady walks into a bar...

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.

But this random lady did 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.)

Hi! How are you?! So - what's going on here? (gestures up and down at me with both hands) Did you hurt yourself? Are you okay? What happened? (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.)

Oh, it's just the way it is for me. (me, trying to give her a quick answer so she'll just leave me alone.)

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.)

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.)

Well, she must have given him a stern look, because he all of a sudden turned to me and, very politely, asked me, Excuse me. Is it okay if I talk to my mother now?

Yes! Of course! Go right ahead.

Meanwhile, my table became ready, my friend arrived, and I scooted away as fast as I could while he was talking to his mother. 

The end.

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. 

So, that was weird. Some people I've told this story to have been like, Why did you even talk to her? I would've asked her who she was and why was I any of her business. 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.

Now, the complicated bit. (Well, maybe not really.)

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. 

That's what I think they think. Just sayin'. I know, it's a grand, sweeping presumption on my part.

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. 

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 because it got rid of my back pain at the time. 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 did 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! 

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.

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.

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 me. And I'm doing great! I'm so thankful I had the surgery. I needed 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!

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 The Gentle Art of Swedish Death Cleaning, 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 to help her through this, wanted to talk to her about anything but 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.

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.

So, let's talk. If you want. I mean. I did 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.

But - do please try to leave random strangers alone when you just happen upon them in restaurants or wherever. That's just nutso.

Stand Still

Uhhh...

Hi there.

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.

To be fair. I've already well established here that I have no issues using my written voice. It's my talking 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!

Uhhh...

No. Not really. 

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.

And I have 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.

What else...

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...

...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.

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.

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.

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 spinning poi. 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.

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. 

Yesterday I tried something for the first time in a few months that was decidedly not 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. 

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.

Hubby and I recently watched Mike's TedTalk 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 not, you can realize so many things that you actually are! 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. 

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 am going to walk again! This is not 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.

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 will 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. 

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. 

What about you? Don't just stand there! But do stand up. Be still and find your bearings. Then, get going... on whatever it is you want to do. I believe in you. Now believe in yourself, and go. 

Can You Hear Me Now?

Testing. Testing.

Is this mic on?

Yeah? Great.

So, listen up.

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. 

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.

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. 

For this year, my word is VOICE. 

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 speaking voice, that is an entirely different story.  

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. 

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.

“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. 

So. Yeah. I grew up very well taken care of and very, very quiet in school. All 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.

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 do say something, my parents often can't hear me and need me to repeat. Or they do 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 something, 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. 

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 am 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...

The tricky thing is that, sometimes I really do 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.

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 this 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.)

And so! Things are about to change! 

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 better 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.

But. It. Is.

Everybody has a right to speak their mind. Everyone's voice deserves to be heard. 

I've been quiet waaaaayyy too long.

It's time you heard my voice. Out loud.

Do you hear me now? Good.