Springtime, and the month of May in particular, is full
of markers for me. My birthday, my
wedding anniversary, and Mother's Day. I
can't take much credit for being born, but I feel good about challenges I've
met, and I don't ever consider myself to be done growing as a person. I've learned a lot along the road of 23 years
of marriage, and I learn from my two teenage daughters every day.
There are additional anniversaries for me now. I began Feldenkrais therapy in May of 2012,
and I began vision therapy in May of 2013.
While I never could have imagined how much effort rehab would be, I am
extraordinarily grateful to work with, and have the support of my medical
team. Joyce (Feldenkrais), Ann, and Dr.
Margolis (who supervises my vision therapy) clearly want me to make as much
progress as possible. I feel it whenever
I'm with them, in how they work with me, and encourage me.
Realizing, as I did in my last post, how long I've been
doing rehab (and that I'm definitely not done) is a bit hard for me to wrap my
head around sometimes. But rehab is
about both the present - daily management and coping, and the future -
improving my quality of life. I know
that it's not unusual to be doing this kind of rehab over a period of
years. Ann recently pointed out to me
how much better I did doing a vision exercise now, compared to how I'd done it in
the very beginning, how far I've come. I
know I'm doing much more with Joyce as well.
I have two more anniversaries - at least to me, both
count as an anniversary. I looked at my
Facebook timeline, and saw two important changes from a year ago. One is that I hardly looked at anything on
FB, and seldom posted anything. I still
definitely have limitations, but I am now able to do both. Just as important, I certainly wasn't private
messaging with anyone, and now I am able to, which means I feel more connected. I have FB friendships with people in far flung
places whom I've never met. I realize
this isn't unusual in our internet age, but since my live, in person social
activities are limited, online connections are very important to me. So to
be able to use Facebook more is a huge accomplishment for me.
I also saw when looking at my FB timeline, that my first
somewhat lengthier post of my own writing - interestingly about music - was back
in April of 2014. I didn't have this new
blog (Visible Person, Invisible Problem), so the post was from my old Journey
blog. The in-between step I took prior
to starting my VPIP blog site was to write non-music related posts separately,
and share them on FB. Then one day my FB
friend David, Chair of VEDA's newly formed Ambassador Board invited me to join the
Ambassadors, and I had an e-mail exchange with David and Cynthia Ryan, the E.D.
of VEDA. I ended up joining the
Ambassadors, and that ultimately led me to start my VPIP blog, with technical
help from my daughters Leena and Cara.
Thinking in particular about my writing anniversary got
me thinking about what motivates me to write.
There are a number of reasons, but two I really want to share here. The first reason is that even when I have
doubts about whether or not to share a piece I've written, I'm always glad in
the end that I did, because I always end up hearing from at least one
person. There's always at least one
person who felt my words spoke to them, could relate to what I said, or felt helped
and encouraged. And one person per post
adds up! That feels incredible.
The other reason is that I want to help create change
regarding issues I've written about (such as stigma), and to speak out about
what it's like to live with invisible disorders. I also want to continue to hopefully give a
voice to those who are still suffering, who still need answers so they can find
the right treatment, which means they need the medical community to pay
attention. I know I'm not reaching
everyone - some would say I'm "preaching to the choir" - but if I -
and others - don't speak out, then we won't reach anyone.
Looking back on all my anniversaries, I don't know how
long my journey will be, or exactly where I'll end up. I believe that some of my journey will be
ongoing, because it's my life, my experiences.
I also believe I've come far enough to know that rather than focusing on
my challenges and frustrations, I need to acknowledge my progress, and I have
to remember my own words. I need to make
the choice to be hopeful, and optimistic.
