September 9, 2021 - One decade... be present.

It’s been a decade since I got sick. I didn’t know then, that night, that my life was dramatically changed. I’ve done therapies, and they’ve...

January 10th 2015 Living my rehab

Rehab is a big part of my life, and the longer I do it, the more I try to understand the process.  I don't mean what actually is happening in my body.  I only try to understand that up to a point, and leave the rest up to Dr. Margolis, Ann and Joyce.  What I want to understand is living it, moving through it.  Long term rehab, meaning months or years,  is something I'd never done before, and I'm just beginning to really understand what LIVING the effort of retraining my brain really means.  I need to make a paradigm shift to think about, to focus on effort instead of product, or goals.  I also think a lot about the other, equally important part of rehab work, which is pacing.  This part isn't obvious to puzzle out either.   By pacing I mean the combination of activities I do, when to take a break from something, what to do for that break, etc.  Doing rehab is about so much more than what I do in my sessions with Joyce and Ann, and talking with Dr. Glad helps me journey through it.

Dr. Glad shared a story with me to make a point about rehab.  Dr. Glad heard Mark Kelly, the NASA astronaut, speak a few years ago at Lake Forest Hospital, in Illinois.  He was speaking to people doing rehab.  As you probably know, Kelly piloted the space shuttle - you can find more info about him online.  He told the crowd that NASA made him practice taking off 30,000 times before doing it for real.  Thirty thousand times.   I was blown away when I heard that number.  How often do we do things that we want to be able to do that well?  How often do we work on something to the point that the activity is remembered like a part of our body, without consciously thinking about each step?  Clearly that's what NASA wanted Kelly to be able to do.  They literally wanted his body, his brain to truly KNOW how to pilot the shuttle.  It's as if NASA wanted piloting the shuttle to become part of Kelly's autonomic nervous system.  And that's what  happened when Kelly practiced SO much. 

I don't pretend for a minute to fully understand how my nervous system works, especially since it's actually multiple systems working together.  I don't think that neurologists completely understand how it all works either;  there's neurological and brain research being done all the time.    Nervous systems are incredibly complex, unique in each of us, and need to be rebuilt or healed with great care.  In order for that kind of healing and rebuilding, retraining, and re-learning to happen, it takes time.  It also takes skill on the part of whoever you're working with.  Repetition is required for our nervous system to learn something, and the repetition has to be done correctly, putting the building blocks together just right, layer by delicate layer.  I know for myself, although I can do more than I used to, trying to go too fast or do something my system isn't ready for yet, doesn't work.  My system can only absorb so much at a time.  I suspect the process is a bit slower because I'm not a teenager or young adult, but I don't think this kind of rehab work is ever fast.

What all of this makes me think about is what I really have control over in the process.  The answer, I think, is the effort I put into anything.  There's always going to be variables I can't control.  A minor interruption during a session with Joyce or Ann, my dog barking when I'm trying to do something at home, or something coming up that I hadn't anticipated.  But I'm still doing what I can, putting in the effort.  And every little bit adds up.  Sometimes I imagine one of those sand art containers with different colored sands in it.  Everyone has seen those, and each one is different.  Every little bit of every color is necessary for the container to look exactly as it does.  It takes time and patience to make one of those really well; it needs to be packed very thoughtfully.  And if there's a shift while it's being created, what you see in the container changes.  There's a great deal of effort that goes into sand art, and I think a lot of art is like that.  I think of music in a similar way.  Every little bit of music, every note I play, even if only for a couple of minutes, every moment of effort adds up. 

Another part of why the process is slow and painstaking is because of the pacing.  Pacing is important not just in a rehab session; it's really part of the fabric of my day, in all kinds of ways.  It's thinking about when I need to take a break, thinking about if, when and how I'll consciously build some kind of a challenge (not necessarily specifically visual) into my day.  Different days have different challenges, sometimes planned sometimes not, and pacing has become part of my thought process. Sometimes I do something and don't realize until I'm actually doing it, or even until afterwards, that I really challenged myself, that I put out a big effort.   Pacing is also really important for anything I do away from home. I'm careful about scheduling, but in the end I have to do the best I can.  When I go out, I often have less control over the actual situation, including what time something will take place or where.  Doing something extra, even if it's not a big thing, can be a challenge for me.  I think about what that day and the next will be like.  I seldom do evening stuff, and have to plan more carefully when I do.   Whenever I do anything new or different, I always want to give myself credit for effort.  I need to remember Mark Kelly and his 30,000 repetitions.  I need to  recognize that every effort I make is another repetition for me, another small step forward.





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3 Responses to January 10th 2015 Living my rehab

  1. Thank you for this inspirational post. I am 24 years old and have peripheral vertigo since last May, and I've given up on hope. I stay home. Your article inspired me to challenge it, thank you. May you feel better soon!

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  2. I was diagnosed with fibromyalgia, which is rare for guys like me. I have had trouble focusing my vision to see properly. It is very important for me to see since I work for a cell phone company as a tech support specialist. Trying to read gave me severe headaches, I went to an eye doctor and he found nothing wrong. This added to my own endless cycle of frustration. At the end of a work day I came home exhausted and tired more than usual which I did not know was a symptom of my vision problem. I did some research and came across this blog. That was six months ago, I am doing much better since I started VT. VT gave me my life back and saved me from unemployment.

    Johnnie Smith @ Ranch Creek Recovery

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