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...

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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June 4th 2016 About cognitive processing, and mental energy...

Why is cognitive processing difficult when you have a vestibular or vision disorder, or a combo of the two?  The short answer is that I (or anyone with one or both of these disorders) am not doing certain things as automatically as I should be.   Neural fatigue is a factor in  large part because I'm using up more energy to do some things than I should be. 

There's a ton of info that your brain processes all the time.  Some of it you're aware of: thinking about a problem, trying to explain something to someone, listening to and understanding directions.   But there's processing that happens that many people are not aware of:  Where am I in space?  How far is it from here (where I'm standing) to there?  What image do I need to have in my mind when I think about this or that? 

The "where am I in space?" is a big question that actually involves a lot of pieces: Am I sitting or standing? Am I moving a part of my body? Is there hand/eye coordination involved? Am I moving my eyes independently of my head, or is my head moving as well?  If my head is moving, is it moving from side to side, or up and down?  Is my eye gaze switching from close up to far away and then back again?

I don't exactly think consciously about all of these things, all the time.  However, I do think about at least some of these things, and that takes energy.  Because I'm using more energy to process various more basic info, I have less energy sometimes for other more complex processing.  Or I get tired more quickly, because I'm using up my energy more quickly, in order to process it all.  When I have a conversation with someone, part of my brain is, for example, figuring out spatial stuff. 

In terms of my basement project this summer, I'm using mental energy to figure out a lot of new stuff; how to pack things away, where to put things, what I need to bring to the hotel to make it workable for me, to name a few.  I always have things to think about, but there's more right now than is typical, and all the pieces really add up.  I have to work harder with all of this new info.

A major goal with the brain retraining therapies I do is for the processing of all this info to become more automatic, more the way it used to be for me before I got sick.  There has been improvement since I began, but I've definitely still got work to do.  So that when I'm having, as I mentioned, a conversation with someone, all I have to do is concentrate on the conversation, and nothing else.  Or thinking about a big new project doesn't feel quite as overwhelming.

The other goal of therapy, as I see it, is for my brain to do various tasks automatically without so much effort.  This would mean that taking a walk, being in new surroundings (not just a hotel, but any social setting I'm not familiar with), or any number of multitasking activities could be done more easily.  My brain wouldn't have to put so much effort into all the pieces.  This would mean less neural fatigue.  I wouldn't feel like processing more info was more effort than I could muster.


Writing this down felt like a challenging mental exercise, but I felt it was a good opportunity to try to explain a little bit about the cognitive processing issue.  It's a big deal for anyone with the kinds of invisible disorders I have, and I'm pretty sure it's hard for people to understand.  And what's perhaps MOST important is to believe anyone who is dealing with these issues, that they are not being lazy, or stupid.  We all are working harder than we should have to, whether it's obvious to the casual observer, or not.  A little understanding and empathy can go a long way.

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