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. 

The Core Principle

Have you seen Selma Blair on this current season of DWTS?! 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 very 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. 

Anyway...

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, do force me to walk either straighter or at least leaning forward, not back, and basically give me more support all around.

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.

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.

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.

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!

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.

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! 

Oh! And Poi! Poi, 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 circus arts book for kids, 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?

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.

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.

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 would 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.

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. 

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. 

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 do believe I can and will improve! So there!)

I'm movin'. I'm groovin'. Faster and stronger every day. I can. I will. Just watch me. 

So 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 see yourself doing what it is you want to get back to doing. It makes a world of difference.

You’ve heard about that study 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.

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. 

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! 

Visualization works. I'm tellin' you.

I am also completely in love with watching shows featuring dancers. Especially So You Think You Can Dance and, to a lesser degree in recent years, Dancing With The Stars. 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. 

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. 

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. 

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-surgery Amy. You may be more familiar with my pre-surgery persona. 

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 pre-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.

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.

But, I’ve learned something.

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?! 

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. 

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. 

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 am 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.

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. 

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. 

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. 

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.

And I will.  

An Open Letter to…

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…

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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 have 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. 

And that leads me to the realization that I really don’t want 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? 

No one gets it. No one could. Okay, not no one. 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.

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 me. 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.

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 not 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. 

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 what I want, like I said at the start of this whole thing. 

And the funny thing is, it’s not that I’m even consciously thinking about my pain, my pain 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. 

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 want to focus on in my writing, but what is choosing me as its writer. 

Phew! 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 feeling disabled.

But now. Now! I am the very picture of disabled. I am quite literally not able - 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.

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 is. And always keeps me down. Physically and mentally. Sigh…

I’m sure this feeling of disabledness 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 do 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. 

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.”

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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.

GoFundMe

I Will Survive. And Thrive!

Hi there.

Miss me much?

I've been...surviving.

Yeah, sorry. That's it. Not great. Not even good or okay. Surviving. Sounds about right.

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.

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. 

And, yes, dear Reader. I feel like we're friends. I feel like you care. Otherwise, you wouldn't be reading this. Right? Right. 

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 Spina Bifida, 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. 

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.

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. 

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 Wordle. 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. 

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.

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. 

Anyway. What was I talking about? Oh yeah. Pain.

What is it like to be in pain All. The. Time.? Let me see if I can come up with some adjectives…

Exhausting. Depressing. Maddening. Overwhelming. Hopeless. Sad.

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.

Determination. Mental Strength. Acceptance. 

It’s a short list, but there it is. 

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.

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! 

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 how that turned out.) 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. 

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.

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.

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. 

So. Where are we, then? What can I possibly do? Well let me tell ya.

I’m going to move forward with having back surgery. And in my case that means detethering surgery. 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. 

But at this point, as far as I can figure, it’s the only option I’ve got. 

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. 

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. 

And that’s it. I’ve made the decision and I’m looking forward to the other side. 

The day when I will no longer just survive. But a life where I will thrive! 

This is Me

I yelled at my chiropractor today. Like, really yelled. 

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. 

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. 

And I couldn’t take her volume, okay? 

I mean, I knew 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 BIG outside voice, not across a large gymnasium or something, but right there, and I just found myself uncontrollably matching her volume level to let her know, “YOU’RE LOUD!” 

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.

Except that it’s several hours later and I still can’t believe I childishly yelled at my chiropractor like that.

But, man. I really can’t believe how incredibly LOUD she got/gets whenever she’s overly excited. 

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 less disabled even with my pain lessened. I actually feel more disabled when using them. 

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.

Even using regular under-the-armpit crutches wouldn’t make me feel so - other. 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.

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 do 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. 

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 be, 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. 

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.

And all that, to me, makes me feel invisible and other. 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.

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.  

I know. It’s complicated. A few people I know even really do make me feel totally fine and chill, like nothing’s changed at all. I’m so happy to have these people in my life.

And I know 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!

But it is 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 not feel this way, that I shouldn’t feel this way, that it’s ridiculous 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. 

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. 

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 why 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, way over-the-top excited (excited for 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.

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. 

I am grateful she listened to me. Thank you for listening, too.