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I know I talk about my
two therapies - VT and FT - a lot. That
my rehab is important; in addition to my actual therapy sessions, I've never
clocked it, but I'm guessing I spend at least an hour a day on rehab exercises. I remind myself that this is good, that
there was a time when I couldn't do anything at home. Even so, doing rehab is not my entire life,
not what my daily living is all about.
So what is my daily
living filled with? I know in many ways,
I still run our household, and I don't want to sound like I'm whining - I'm
glad I can do mundane daily tasks. But
what else is there? Music is definitely
one piece. I will soon be in possession
of a John Denver songbook, and I've been letting go of the "working on
it" feeling when I play. Letting my
music just be. That's good, but as much
as I love playing my flute, I don't spend a great deal of time playing.
There's also my
writing. When I get really into it, when
I'm trying to figure out how to say what I really mean, that can be
energizing. I know I sometimes push
myself to try to get that one more thought articulated. "Is this really what I mean?". I felt like that writing this very piece -
"Am I making sense, will I be understood?". I'm hopeful that with my new songbook, I'll get
into the music as well, and be able to gradually increase my playing time.
Writing is a wonderful,
but solitary activity. Once upon a time music was social for me, but for now, it's
solitary as well. Listening
to articles, books etc. is a worthwhile activity, and I'm happy I can do
it. But again, it's something I do by
myself. So where does that leave
me? Sometimes it leaves me feeling very
frustrated. It occurred to me recently
that because of my limitations, when I try something, or have an idea, I REALLY
want it to work out. Given all the
things I can't do, the road blocks I run into, I don't want to be disappointed
when I try something. But what I also
realized is that it's precisely that situation - when it's difficult to figure
something out - that's when it's the most important to keep poking around. Keep trying.
I don't want to do
something just for the sake of doing something, because to me, in the end that
doesn't feel good. I want to care about
what I do; it's all part of that need to feel energized I wrote about in my piece
"Find energy, feel joy...".
Doing something JUST to do SOMETHING can be just as much of a downer as
inactivity.
I mentioned in an
earlier post this year that I became the liaison between the Membership Committee
for my congregation, and the Youth Education Committee for the Sunday School,
which overall has been good. I've had a
bit more interaction - by phone and online - with people, and I've contributed
ideas for programs, a couple of which actually came to fruition. I'm frustrated that some of my ideas may not
go anywhere, at least for now. But
having a couple programs go is a pretty good batting average, and I'll keep
contributing, because making contributions is important. Feeling useful is important.
Maybe I'll find a way to
get more involved with the Vestibular Disorders Association (VEDA) - I don't
know. What I DO know is that as far as
what doesn't work, I have to say "OK, keep thinking, keep looking
around," and maybe most
importantly, "stay open, don't over-think it." Limitations, and opportunity sometimes seem like
an oxymoron. But I have to believe that
if I keep searching, stay open, and try to be creative, an opportunity can
still exist.
I'm also opening this up
to my readers with invisible disorders - what do you fill your lives with that
gives you meaning? If social life is a
challenge for you, how do you handle it?
What do you do? I'm hoping some
people will share ideas, so we all can benefit.