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...

October 12th 2014 - Practice and Rehab

When I was playing my flute recently, I found myself comparing "practice" with rehab." Here's a couple dictionary definitions:
Practice: 
repeated performance or systematic exercise for the purpose of acquiring skill or proficiency:
rehabilitation: to restore to a condition of good health, ability to work, or the like.
I looked up the dictionary definitions of these words because I was curious. Curious if real life understanding of these words matches the dictionary. When you teach someone to play an instrument, you could be teaching a beginner, which means you are giving them brand new skills. They practice in order to learn them, and to be able to acquire more advanced skills. Or you could be teaching someone who is returning to an instrument. When I got back to playing about a year and a half ago, I was in that position, and was my own teacher. Playing still feels natural to me, there is a lot that came back and still floats up out of my memory, but it also feels different. I'm trying not to fall back into old bad habits, and some of this is conscious. Some of it is less so, and I've brought my flute occasionally to Feldenkrais so that Joyce can work with me.
So that brings me to rehab, but first some background. I had already worked with a physical therapist on hand problems when I got vertigo. It turned out she also did what's called vestibular rehab therapy (VRT), so I began working with her about two months after getting sick. For some people, this more standard (for lack of a better term) therapy works, but after about five or six months, I wasn't seeing any progress. I think there were two problems. One was that I only had a partial diagnosis - the BPPV I've mentioned before. I had a feeling there was more going on, but had no idea what, and wasn't getting any answers. Ultimately I got the diagnoses of MAV and visions disorders including BCI. Getting the right treatments can only happen when you get the right diagnosis. But the other problem, it turned out, was that VRT just wasn't right for me. Even WITH a correct diagnosis, you still have to find the right treatment. Feldenkrais was and continues to be the right kind of rehab for me. 
My rehab isn't just about the therapy I do. It's also about sensory exposure, which is one of the reasons I attend Kol Hadash events. I attend for other reasons as well, obviously, but going to a service, like Rabbi Adam's 10th Anniversary celebration last Friday, or the Sukkot service on Sunday are positive ways (as opposed to a doctor's appointment) that I can challenge myself. Whether it's listening to music, socializing with one or more friends, experiencing the difference between being outside vs inside, it's all exposure. Any time I do something that isn't part of my daily routine, I think it counts. It doesn't need to be a major event. Actually, if I tried to constantly expose myself to major stuff, I would pay the price. I've been told over and over that part of rehab is about little stuff that adds up over time, so it's all worth it. It's always, to pardon the pun, about balance.
Anyway, my rehab is not about practice. Before I got sick three years ago, I had as I said, done rehab. But it was worlds away from what I'm doing now. What I now understand much better is the many different kinds of rehab, depending on the problem. Going back to the definitions, I think the definition for "practice" is fairly accurate, even if you are a "return" student. I think that the definition for rehab is much too simplistic, but I also think that there cannot be a dictionary definition of rehab that is accurate. Rehab is a complicated process in the vestibular world. I don't mean because of tools that are used; my rehab is not a high tech business. It's complicated because of the process of the layers of learning that happen over time. It's complicated because there needs to be understanding on the part of Dr. Margolis, the Developmental Optometrist who supervises Ann, and Ann and Joyce (Feldenkrais), the therapists working with me. Understanding about brain retraining. About a sort of "rebuilding" to use Joyce's word. And it's a very individualized process, not at all "cookie cutter." It takes a long time, a very long time. Working with my nervous system, with habits that were, I think, neuromuscular messages within my autonomic system. Retraining messages that go to and from my brain is no simple matter. I don't claim to understand it all myself.
Rehab is very hard work. I really like Joyce and Ann, and Dr. Margolis. They are all extraordinarily good, caring, dedicated professionals who extend themselves and want their patients to improve. But I don't like what I do in vision therapy. Sometimes I like Feldenkrais, sometimes not. I get very tired from vision and Feldenkrais, the kind of tired that makes me not want to use my eyes for anything even remotely complex. It literally makes my brain feel tired, like I don't want to think. I always need a break in the early afternoon, but especially on days when I have therapy. I should also say that Dr. Glad, my psychologist, is also wonderful. I've told him - actually more like yelled - that frustration really wasn't a strong enough word for how I feel sometimes. He listens to me while I complain, rant and cry, helps me slog my way through the mess of emotions I deal with, and helps me figure out how to keep moving. As do Ann and Joyce, with whom I have also shed tears. They all understand that dealing with my crap affects all of me, my whole self, so listening to me is important. I've had my private emotional moments, and although Ron is not a therapist, he has held me numerous times while I cried out my anger, sadness, frustration.
If I could wake up one day and find my problems had vanished overnight as seemingly mysteriously as they appeared, I'd be beyond thrilled. I could take the lessons I've learned, and be done with the whole thing. But I know that's a fairy tale. I know that's not going to happen. So I do my therapies. I understand that I have to take the process, and see where the process takes me, day by day, one very small step at a time. There is an awareness of my body that I have now that to a degree is good, but I also need to learn when to put some trust in my body re-learning, see how far I can go. I need to appreciate very small change, and know that as long as the overall trend is to forward progress, I'm good. I have no idea where I'll end up, and I don't ask Ann or Joyce, or Dr. Margolis. They have goals for me, as do I, but I've never done this before, and they've never done it with me. They've done it with others, and so I trust them. To take me as far as we can go as a team.

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