November 5th, 2018 - updated 10/19 - trying to describe my MAV experience

I wrote this to help my parents & Ron (husband) understand my MAV - Hopefully this info will help someone out there, so I'm shar...

Archive for May 2015

May 19th 2015 Finding, noticing good moments is important

Life changes for many people in a variety of ways when they have invisible disorders.   Most of us have to deal at times with some degree of depression and/or anxiety.  I think this makes it even more important to still  find joy, purpose, ways to feel productive.  Being able to do basic daily living tasks is very good, but I don't think it's enough.  Ultimately, I believe there needs to be more.  Although what may feel like a huge goal may be different now, I DON'T mean that you have to set a whole bunch of huge goals for yourself.  The same can be said for what feels amazing - even if what qualifies to you as amazing may have changed, your days don't need to be filled with amazing things.  Achieving something really big is wonderful, but I mean that taking pleasure in small joys is important.  I mean that even a few minutes of something good everyday makes a difference.

I really do believe that everyone can find something.  I joined VEDA's Ambassador Board in order to help spread awareness, but there was a more selfish reason as well.  I was able to get connected to some terrific people - among them David Morrill, who does an outstanding job as the Chair of this Board.  He sends out Monthly updates, and I think does a fair amount of behind the scenes work, all of which I know is very meaningful for him.  My FB friend Kim, who is also on the Ambassadors Board, shares posts from her blog site, writing about hiking, and other little nuggets from her life.  My FB friend Fran does some writing which she posts in various groups (she doesn't have a blog), and puts together wonderful, creative miniature gardens.  She posts pictures of them on FB.  I know from messaging her that she really enjoys this creative outlet.    My FB friend Elizabeth is an Admin on Dizzy Daze, and posts all sorts of fun stuff in this group. 

Sometimes you have to get creative about how you do something, or who you do it with, but finding some things that fill you up inside is really important.  I've seen people post about gardening, and sharing special times with their family or friends.  I don't take walks with my dog by myself anymore unless I have to, and I'm up for the challenge, but I've gotten used to that.  Instead of it being alone time for me (which in my former lifestyle was more important), I have company with me now.  And my dog seems to know to behave when I DO go alone.  I'm able to watch movies on an older, small screen TV that we have.  My family knows that I'll need a break in the middle, and what spot I always sit in on our living room couch, because it's easier for me visually.  If the movie is longer than two hours, we watch it over the course of two nights.

I've talked a fair amount about music.  I've started posting music videos regularly on my FB timeline.  I make a point of watching all the way through whatever video I post.  There's SO much available online, no matter what your musical taste ....  you can watch a clip of your favorite artist or group, or an entire concert.  One of the benefits I've noticed about listening to music is that I get songs or melodies running through my head.  For me this is a good thing, because it's a good distraction.  I over-think things sometimes, or get into negative thinking about my situation.  I know that thinking positively is literally good for my health, and music helps me to get back to that. 

I don't play my flute for lengthy periods anymore, nor do I read a lot of sheet music.  Those are both things I'm working on improving, but in the meantime I love playing for a few minutes, a couple of times a day.  I honestly just love the sound of flute music.  And I've accepted that I play very simple melodies... simple can still be lovely.  I've recorded myself a few times on an old cassette recorder I have, just to be able to hear over the course of time, the progress I make.  I also still keep my Progress Log, which is really just a document on my computer.  I put the date, and a sentence or two - nothing lengthy - about something I did.  Sometimes I don't remember to note something, but I think even thinking about something, noticing something for a moment, is good.

A simple thing like wearing cheerful colors, especially on dreary days, can make you feel a bit better.  I recently saw a video clip of the author Elizabeth Gilbert saying that just being outside, and really noticing feeling the sun on her face qualified for her as a good moment.  Sharing a laugh with someone is always a good thing.  Sometimes "sharing" for me means a friends' post I see online, and sometimes it means enjoying something cute or funny that one of our pets does.  Or it could mean something one of my daughters says.  Some people keep gratitude journals, or positive moment journals - I don't do that myself, but if it's helpful for you, then it's a good thing.  I do try really hard to stay in the moment when something good is going on. 


When life presents extra challenging situations, I've learned that you really have to make a conscious effort not to stay stuck, dwelling on the difficult moments.  I don't ignore it, but then I make myself push past it.  I make myself focus on what I can find that's good, that lifts me up, instead of bringing me down.  And again, I really do mean "moment."  Just stopping and noticing something positive is worthwhile.  If I find myself thinking about the future, and worrying, I try to pull myself back to the present.  Everything is really so fleeting, and I truly don't want what ifs about the future to cloud a good moment in the present.  

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May 12th 2015 Anniversaries, and writing...

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. 




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May 5th 2015 When my challenges really began, and music

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.


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