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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September 26th 2014 - My High Holidays Challenge

I went to a Rosh Hashanah morning service today. I attended the morning service last year as well. But this year, I did a reading with my husband Ron. Our rabbi e-mailed us about whether or not we would be interested, and at first I thought "no way!" But then I talked about it with my vision therapist, Ann, and she encouraged me to do it. So I said yes.
I was told I'd get the reading via e-mail ahead of time and could format it however I wanted to. When I got it, I told Ron that I wanted to go first, and I would do the smaller amount. He said OK to that. I practiced a total of three times, once sitting down, once standing up, and once with Ron. I had formatted the reading so that I didn't need my reading glasses - I didn't want to have to deal with that. I also decided ahead of time that I would not try to look at the audience while I read. Switching from the reading to the audience and back again was more visual work than I wanted to do.
When we got to the church where we rent space, I went to a fairly quiet room to have my snack before the service. Then we went into the sanctuary. Once the service started, Rabbi Adam named, to thank in advance, everyone who would be reading. That's when I got nervous. My heart started pounding. I tried to keep some level of calm. I've performed many times on my flute, both as a soloist and with anywhere from one other person to an entire group. I would get nervous right before I started, but once I'd played a few bars, I got into flow and was fine. But that was before I got sick. This was the first public anything I had done. It's one thing to be in a crowd and know that no one is really paying attention to you, even if you feel self-conscious. It's quite another to be standing behind a podium at a very large rock in a sanctuary filled with people.
I don't know if it was a coincidence, or if Rabbi Adam intentionally gave us a reading early in the service, but either way I was grateful. I'd do it and then I could relax and enjoy the music and service. I walked up the aisle ahead of Ron, and over to the podium. I looked at Rabbi Adam, who nodded just a bit as if to say "yes, it's your turn." Ron was now standing next to me. I smoothed out my piece of paper on the corduroy-like fabric and took a breath. I was grateful the podium was high enough that the paper was a comfortable distance for me visually. I was keenly aware of my pounding heart, but I told myself "you can do this" and started to read. I took my time. As I got to the end, I thought "You're doing it" and then "you did it." Then I looked up and took in the crowd a bit as Ron read his portion. I felt a rush of emotion, realizing that I'd done it. When we were done, we walked back to our seats.
My daughters asked me later what I was nervous about. Being in the sanctuary was a lot of stimulation for me. Even though I don't get full migraines much anymore, I still have sensory issues because of my migraine condition, and being in a room with lots of people is a challenge. There's voices and conversations happening all over the room. The sanctuary is also a very large space, which means that spatially, it's a challenge. When I was up on the level where the podium is - not a stage but a few steps higher than the main floor - it felt very different than being on the same level as everyone else. So I was nervous about getting dizzy, feeling a spin, or struggling with my balance. I'm very thankful none of that happened.
Back in our seats, I took in the rest of the service, and the music. There were some songs I particularly enjoyed, and I took special pleasure in noting that my older daughter was moving to the music, obviously enjoying herself singing in the choir. I was sitting in between Cara (who will probably be up singing with the choir next year), and Ron. When the service was over, I did a bit of socializing, and several people who know me and are somewhat aware of my vestibular conditions made a point of congratulating me that I'd done the reading. I thought that was very sweet that they made a point of telling me, and it made me feel very good. I'm glad I took the challenge, and did it. And I'm glad my daughters saw me carry through with something that made me really nervous.

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September 24th 2014 - Thinking About Music

With the writing that I'm doing now, I find myself wondering about writing about music.  The thing is when I play, part of the point of it is that I don't want to write, it's not about using words.  It's about expressing myself, using my musical voice instead of needing to find words.  Whether I'm playing to figure out a tune that I've remembered, sounding it out, or watching one of my pets and playing something that seems to me to match their mood or behavior, it's all about the music.  I don't want to get into the technicalities, or talk about whether or not I'm flat or sharp when I play.  The truth is, I don't really care.  As long as the tone sounds good to me, I don't worry about being off-pitch.  I think I play mostly on pitch because the dissonance would drive me nuts, but I'm just listening.   
If I'm trying to sound something out I get frustrated if I can't figure out my starting point, and then I wonder what key the music is in, but then I just play around some more....sometimes I find the notes and then I mix in stuff I'm just playing around with, because I don't want to get caught up in "getting it right."  I want to expand because I do sometimes get a bit bored, but I don't get bored very often.  I do, as I mentioned to Cara the other day, get "into the zone."  Those moments of feeling like the music is just there and I'm not working too hard.  It's just feeling really good to play, to express myself through music, even if I'm the only one really listening.  I wonder sometimes if whoever else is home feels what I'm feeling while I play, but I don't ask.  That's not the point. 
I guess I'm thinking about this partly because I used to play my flute before a service for the High Holidays.  I did that for two or three years.  I also sang in the choir.  My older daughter Leena is in the choir again this year.  As far as I know they don't have a new instrumentalist playing before the service.  I'll miss hearing Todd sing Kol Nidre this year - he's just so wonderful.  I wonder a bit what sort of public playing I'll do again, or if I'll play with another musician again.  I don't know the answer.  I do know that I'm grateful for the music I make, and I'm way ahead of where I was when I first started playing again.  And I will soak in the music that I hear at the morning service for Rosh Hashanah and later for Yom Kippur. 

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