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...

March 27th 2016 Meaningful activities, and a social life....

To listen: copy and paste into Google Translate and click "speaker" icon.

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.


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