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...

June 28th 2017 Summer Update...

Two months ago, I had a major setback... this was due to a number of factors, one of them being too much computer time... I continue my recovery, refocus my energies on my rehab, enjoy my daughters home for the summer from college, and rethink elements of my lifestyle... 

I remain committed to the issues of invisible disorders, but need to think about how I will use this space to write/share info about them, and my story... in the meantime, I invite you to follow me on FB at Visible Person, Invisible Problem for music vids, health related info and status updates... Thank you!!

Leave a comment

April 26th 2017 My life right now...

Focusing on things other than my disorders is helpful; I get enough reminders throughout my day of my disorders. I wrote about my big music goal, which is just that - a goal, not a guarantee.  In my day to day life, there's only so much I can do on any given day that moves me towards this goal.  In the meantime, there's this thing called my life.  My life right now.

I had a session with a potential new mental health therapist recently, and surprised myself at how emotional I got.  My tears flowed, talking about everything that's happened to me in recent years.  In part, I think I felt comfortable enough to share, but it also made me realize that I'm not done processing what happened to me.  How much my life has changed.  There is power in the spoken word, and though I'm used to telling people my diagnoses, I'm not in the habit of telling them what happened to me.  Giving voice to that in a safe place, is powerful, and hopefully will be healing.  I finished the session saying "I guess I'm trying to rebuild my life."  In truth, this is about more than music.  It's about social life, about DOING things, beyond the internet.

I don't, fortunately, suffer from migraines every day.  That's not, however, by accident.  It's because of how I live my life.  Avoiding my multiple food triggers, noisy places, bright lights, and pacing myself make a big difference.  This means my life has very distinct limitations.  I live with these limitations because I HATE migraines.  I cannot tolerate them.  Migraines are not regular headaches.  For me, they are a unique, debilitating kind of pain that makes it so that processing anything - thinking - becomes incredibly difficult. 

There are all kinds of visual issues for me as well, so I don't go to movies, and rarely go to restaurants.  Venues or events with a lot of people are challenging for me.  Ron (my husband) deals with all kinds of paper work tasks because of my vision disorder.  I am working hard in vision therapy, and have made progress.  I know that.  But this recovery of mine, in a sense of my self -  my life - is not an easy journey.

So, as I think about music, I also think about the overall picture of my life.  What I fill it with NOW.  With the exception of writing, my creative outlets are only a few minutes out of my day.  Meaningful, and important, yes.  Preferable to focusing on my disorders?  Definitely.  But social life, life beyond the internet, that's really the other significant piece I want.  I am very grateful for all the positives the internet offers me, and for technology like audio on Google Translate for listening, and Dragon Naturally Speaking for using my computer.  It is not, however, enough.  I need to be able to go out more. 

Social connections have lots of well-researched health benefits, but honestly I don't think the research is entirely necessary.  To me, it's obvious.  Going out can be really challenging; my system has to work much harder, especially in new surroundings.  Currently, I can't do more than one outing in a day, going out in the morning the day after an evening out isn't something I do unless I REALLY have to, and going out four days in a row (even if the outings are in the morning) is difficult.  I need to talk to Joyce and Ann about this, because MY thinking is that somehow building up stamina (difficult to do) is one of the keys to increasing my social activity.

My overall frustration with all of this is that none of it happens quickly.  It all takes effort.  Time.  Which means that in the meantime, I try to do my home therapy mindfully, in the present, so my brain learns.  My body, my self.  I go about my days, and remember what I wrote a while back, about appreciating good things, positive moments, even if small.  Like snuggling my cat or dog, hugging Ron.  Noticing the beautiful Spring flowers. Listening to beautiful music.  Our family belonging to a wonderful congregation, which is actually not a small thing. I've got to mindfully focus on the positive.



Leave a comment

April 23rd 2017 Part 1 - Daring to have a big goal...

I bounce around emotionally about the concept of making goals.  I don't want to look back and think to myself "well, that didn't work, did it?".  I don't want to fail.  I know failing because you didn't study enough, or whatever, is different than what I'm talking about, but it still doesn't feel good.  Not succeeding at something really important.  I don't want to find out that a goal turned out to be too difficult in some way, too challenging.  I want to believe that achieving a goal I set for myself is a matter of figuring out how to make something work, how to break something down so that I can work on it, make that thing happen.  That it's a matter of time, effort and creativity. 

But I don't always believe that.  Sometimes I feel like there's something lurking, waiting to surprise me in a bad way.  For me, this isn't totally strange or irrational - getting sick felt like a surprise, freaked me out.  Waking up to a spinning world.  Looking back, did I miss any signals?  I don't know for sure, but honestly I'm not convinced that I did.  To borrow Oprah's phrase, what I DO know for sure is that none of us can predict the future.  I don't have complete control. 

What I also know for sure is that I can't live my life waiting for that next bad thing to happen.  I understand a lot more medically than I used to.  I am a much better self-advocate than I used to be.  I also know that there are some things that I DO have control over, like my attitude, my effort.  I know that setting goals feels necessary.  I need something to work towards.  If I don't set goals, I feel like I'm giving in to these disorders of mine, and that feels bad.  If I set a goal and it doesn't work, I guess the questions would be not only "why?", but "did I learn anything?", and then "what comes next?". 

I've been thinking about all of this because I've been working on a piece about being able to read sheet music again, and asked myself why I was hesitant to finish it, to post it.  Music is important to me.  The loss of the role of music in my life - being in a band, playing duets with others, teaching flute lessons - is very painful.  If I try again to work towards a goal that puts me closer to rebuilding my life musically, and it doesn't work, I don't want to have to deal with that.  So I put it off. 

But in the end putting off trying is giving up.  Settling.  I don't want that.  I cannot deal with the pain of the loss of saying that what I have right now musically is what I'm going to be left with.  So, I have to try.  I have to dare to set myself a goal.  And maybe I have to make myself believe that I can make it happen.  If something DOES happen that makes that unlikely, I'll have to face it, I'll have to see what possibilities exist for me.  But I can't let go of the music dream yet.  It may sound like a cheesy cliche, but in avoiding the possibility of failure, I prevent the possibility of success. 
**see Part 2


Leave a comment
© 2014 - 2019 Tamar Schwartz, Visible Person Invisible Problem (VPIP). Powered by Blogger.

Search

Swedish Greys - a WordPress theme from Nordic Themepark. Converted by LiteThemes.com.