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...

February 1st 2017 Vision Therapy; how to progress...

I saw my Developmental Optometrist, Dr. Margolis, recently for what he calls Progress Reports.  He asked a lot of questions, and got a good sense of what was going on with me.  He is, I should add, a terrific doctor.  I wanted to share a few things that I got out of my consult.  Sometimes I think of my progress like a toddler learning to walk.  Stumbling sometimes, holding on when needed, but every little step matters.

Basic positive gains - Dr. M. said he thought I handled the actual exam better than in the past, which he thought was a positive, as do I.  I still needed breaks, but that's OK.  He also said my midline and body mapping were better. 

Motivation - I told him that home therapy can feel tedious, even though I completely understand how important it is to actually do.  We talked about ideas to help me feel motivated about my home therapy - make it feel more meaningful.  How to integrate it into my day, and said he'd talk with Ann (my VT) about this. 

Positions - Dr. M. and I talked about doing home therapy lying down - something Joyce (My OT who does Feldenkrais) has also talked about.  Lying down takes away the compensatory habits of sitting and standing.  I don't just mean conscious habits, but rather ingrained, neural muscular habits.   Lying down also means I'm not dealing with the element of balance/multi-tasking required for sitting or standing.  I'm thinking more about this, will talk with Ann and Joyce, and see where I go with it. 

Less is more - Dr. M. briefly used a yellow filter lens, and noted that it made a difference for a spatial activity, commenting that because I'm sensitive, even a small amount of something can make a difference.  I also realized that since a small amount can make a difference, AND allows me to pay more attention to what's happening, I actually sometimes get more out of doing less.  Obviously building up to doing more of something is a goal, but I think that part comes naturally.

Goals - he asked me what my goals were, and I said it was hard to choose, but that I'd go with being more social, and doing more with my flute.  My initial thought was "how on earth can I choose?".  But music and social life continue to be really, really important to me.  There are other things that I want - i.e. reading - but technology doesn't help with socializing or music as it does with reading.  So thinking back on what I said, those goals definitely top the list. 

Pacing - Dr. Margolis reminded me of the basic rule, which is that if I need to recover for a few minutes, that's acceptable.  In fact, I can expect that any home therapy will require SOME recovery time.  He didn't specifically say this, but I think if I need no recovery time, I'm not challenging myself. However, needing an extensive - say half an hour or more - recovery time is not good.  That means I've pushed too much, and probably feel lousy.  The strange thing is that for me at least, there isn't sort of in between - it's either "wow, I really over did it, and now I have to chill for way longer than I want and this sucks," or after a few minutes, I can move on. 


He commented that "if you change nothing, nothing changes." Simple but true.  Once I learn something through VT (or Feldenkrais - FT - for that matter), I want to stick with it.  It's hard to on purpose make myself feel uncomfortable, given that I still feel disequilibrium every day.  Making myself feel that way, or feel dizzy in order to make progress sucks.  But I understand that I have to tolerate some symptoms.  That is, unfortunately, the nature of my rehab.  So I have to make changes, because having nothing change isn't acceptable.

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January 14th 2016 "See Me" and "Me Before You" reviews...

Sometimes finding a good audio book to listen to is difficult, so I'm sharing a couple audio books in case any of you have the same problem. "See Me" is by Nicholas Sparks, whom some of you may know as a writer of love stories.  I've listened to a number of his books - some better than others.  "See Me" is his newest book - it came out last summer - and I'm telling you all about it because it touches on so many relevant issues, but is also very good story telling.  I think it's one of his best. 

It's a combo love story/suspense story.  He touches on sexual harassment in the workplace, mental illness, stalking, immigrants, and sexual orientation.  That may sound like a lot, but it ends up - I think - working well.  To my mind, there are many issues that real people deal with in their lives, so I like a book that deals with a number of issues - for me, it made it more interesting.  That said, none of this is heavy handed.  "See Me" is an enjoyable, engrossing story, I came to care about the characters, and it definitely got me out of my own life.  The core message of the book, I felt, was not just love, but friendship, loyalty, and having someone else's back. 

"Me Before You" is a very different book from "See Me."  Jojo Moyes found out about a 23 year old young man who was a rugby player, became a quadriplegic as a result of a rugby related accident, and couldn't get him out of her head.  There are a number of articles about him online, if you want to know his story.  So Moyes created a story based on the real life 23 year old.  She fleshes out her narrative with a love story, and various complications in the lives of the central characters.  But the main thrust of the story is about Will - the quad in her story - whose parents hire a caregiver named Louisa.  Will is a 35 year old who had an extraordinarily successful, full life prior to being injured.

There is a movie - which I've seen - based on the book.  The movie does a pretty good job, and actually some of the more tangential relationships are less fleshed out in the movie, which is better.  However, there's a lot to the book that makes it worth reading - or in my case listening to - as opposed to only taking in the movie.  There are some very serious quality of life issues which this book confronts - issues that I think many shy away from in real life. 

Moyes did her homework; she does a good job of laying out the various complications a quad deals with.  I learned a great deal.  Again, some of this comes through in the movie, but far more is in the book. MBY also made me think about my own situation.  My limitations, the changes in my life after I got sick, issues of dependence vs. independence, and quite simply what makes life worthwhile for each of us as an individual.  None of these answers are the same for anyone. 

MBY ended up being a somewhat heavier, more intense book than I'd anticipated, but I didn't find it depressing.  I think the overall message is one of hopefulness, the impact someone can have in your life, and choices.

If any of you have a book recommendation, please comment and let us all know - thanks!

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January 5th 2016 Flute video/recording - finally!

Yes, I finally recorded myself :-) ... it was a team effort.  My daughters, home on break, helped with the recording, and video production, then Ron uploaded to my computer, and my daughter Leena finished the job.  This video is actually from two separate sessions - no, I didn't change outfits in between recording LOL - but Leena edited everything together.  Scroll to bottom for link.

So what did I learn from the whole experience?

1) I needed a lot of help on the technical end (there were a number of pieces that I could not do myself), but it was interesting to see myself playing.

2) I was reminded that motivation - in this case, because of a project I was FINALLY doing - matters.  Making progress, especially when it's really difficult to MAKE progress, feels pretty meaningless unless you have a reason to do it.  Seems like the big "duh" but it's true.  There's a balance between making music for self-expression, and making music as a shared experience.

3) I need to find a simpler way to present recordings.  I need to find out about using a tripod for Ron's smart phone, on the theory that video production would be easier.  I want to do more recording, but I need a way to do it so that I'm not QUITE  so dependent on others. 

Despite the frustrations, I'm glad I did this.  This video is very different from the ones I used to post on my channel, and the inner critic in me feels sad about that.  On the other hand, this is a far cry from not being able to play at all.  So I took a deep breath, and decided to share a bit of my music, in addition to sharing my words. Just as for this one, I'm not going to worry about future videos looking or sounding like I recorded in a studio. The point is for me to have some fun. 

I hope you enjoy it, and thanks for watching!



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