There's another medical piece to my story, the part that actually
started before I got sick, and ultimately got my diagnoses of MAV and CI. Back on Dec. 10th 2010, after going to bed on
the 9th with a slightly sore (just in one spot) left wrist, I woke up with my
left wrist so badly swollen I couldn't move my hand. I was beyond freaked out! I was terrified. Not only could I not play my flute, I
couldn't use my hand. What I learned about
a week and a half later, after visiting a hand specialist, was that I had Pseudogout
in my left wrist. I was given a
cortisone shot in my wrist, and all was supposed to be well in a couple
weeks. Instead, I eventually ended up
with a blocked nerve. Despite physical
therapy, I also developed Bilateral (both hands) Carpal Tunnel Syndrome, and
both hands required surgery.
I had surgery on my left hand in May of 2011 (about two
weeks before my younger daughters' Bat Mitzvah!) and my right hand in the Fall
of 2011 - about two months after I'd gotten sick. I've mentioned a voice recognition software
program called Dragon Naturally Speaking, and I used this program to start
writing. I created a site called My
Journey Back to Music, which I started with the help of my daughter Leena. Leena and I had picked the site name because
I was working at getting back to playing my flute. The earliest posts on this current site -
Visible Person, Invisible Problem - were taken from my old Journey site.
Hands are very important, not only for regular tasks, but
also obviously personally so that I can play my flute. It was horrible not being able to use my hands. As grateful as I was to have Dragon, I hated
always having to talk to my computer. Due to my vision disorder, I still use Dragon,
both as a backup if I occasionally don't want to type, so that I can make
jumps in documents from beginning to end, eliminating the need to scroll, and for a good deal of mouse clicking. The physical rehab I did for my hands was
challenging. But getting sick, and being
diagnosed with MAV and BCI, presented even bigger challenges. Getting sick, and then being diagnosed with
invisible disorders made my goal of playing my flute again seem more like a
pipe dream. I've realized that in some ways I'm still on the same journey. Except now I wouldn't call it my journey BACK
to music; it's now turned into my journey WITH music.
I listened to a ton of music when I first started having
trouble with my hands, and my goal was always to be able to play again, pain
free. I was now dealing with dizziness
and disequilibrium. I talked to Joyce (I
began Feldenkrais before vision therapy) about my music, about playing and
teaching flute. She understood early on
how important music was for me, what an integral part of my life it was, that
it was and is part of who I am. I made
it clear how vital it was to me to be able to play without dizziness, without
balance problems. Not necessarily for
lengthy periods, but initially just to be able to play again. Once I started my vision therapy, I also
spoke quite a bit with Ann about my music.
She also understands how
important music, and playing my flute, is to me. We've talked about the various visual
challenges, especially reading sheet music.
I've mentioned my hormone changes in previous posts. I don't
know if my illness was also in any way triggered by the neurological problems
in my hands. My guess is that if I asked
a couple of neurologists, I'd get different opinions; one might say absolutely
not, the other might say everything is connected, and once your body is
stressed, it's more likely that something else will happen. I DO think that how music is taught, how we
treat our bodies, needs to change. There
are far too many musicians, and I'll venture to say people in general, who
ignore or deny discomfort until their bodies scream at them to PAY
ATTENTION! I have now learned to warm up,
loosen up my body, prior to playing my flute.
I pay much more attention to how I am breathing, and what moves when I
breathe. I am learning to listen to my
body, when I'm making music, AND simply moving through my day.
Instruments have never been, unfortunately, designed with
the optimal functioning of the human body in mind. Musical instruments are designed to make
beautiful music, sometimes seemingly at the expense of the person using the
instrument. But I firmly believe now
that beautiful music does NOT have to come with the price of pain and
injury. I've seen occasional articles
about this online, and I think things are starting to change. There's much more info about the benefits of
music and the brain, and why music matters for everyone, whether you're a
professional, an amateur, or somewhere in between. When
people listen to music, and especially when we use our bodies to make music, so
much of ourselves - both motor skills and brain activity - is involved. Everything is connected, and music should never
cause trauma. It should only be for self
expression, shared experiences, healing, and learning.
I've never brought my flute to a vision therapy session,
but I've shown Ann sheet music. We talk
about how to work through different challenges, such as using my reading glasses. Sometimes I bring my flute to my Feldenkrais
sessions, and Joyce works with me while I play for a few minutes. We talk about body position and
breathing. I know I'll be having more
conversations with both of them about my flute.
I'm committed to keeping my flute
in my life, to keep on making music, without compromising my health in any way.
I've met some other adults on Facebook who have vision
disorders, as well as who have MAV, but each of us has something unique to our
story, our journey. Because I don't
know anyone who has gone through exactly what I'm going through, I learn as I
go. I never would have imagined when I
woke up with a severely swollen left hand, all the twists and turns that lay
ahead. I had no idea I was going to get
sick. But as I begin my third year of
vision therapy, and my fourth year of Feldenkrais therapy, I DO know that music
is, and will remain an integral part of my journey.
