July 4, 2019 Enjoyed my morning, ready to keep moving

I enjoyed walking around, looking at booths for our Annual Deerfield Family Days with Ron & both my daughters :-) I handled the ...

Archive for January 2016

January 31st 2016 Neurological change - do the work, let it unfold....

To listen: Cut and paste into Google Translate, click on the "speaker" icon.

Change.  That word conjures up so many emotions in me.  I thought about this the other day when I was standing in my kitchen waiting for my teapot to boil.  Waiting and change go hand in hand, and I think it's safe to say that no one likes to wait.  If you're waiting for something good to happen, you want to hurry up to get to it, and then you want the good thing to last.  For things that you're not looking forward to, you might feel the opposite.  Thinking about change and waiting made me think about rehab; the VT and FT I do.


My life changed when I got sick in 2011.  Since then I've been working, first to find out what was wrong with me, then to get the right treatment, and then - and still - to improve as much as possible.  Change of any kind can be hard, but I think working for emotional or neurological change probably tops the difficulty scale. Doing rehab is a way of trying to exert some control, trying to make change happen that you actually want.  It's safe to say that anyone - not just me - who does neurological rehab learns a lot about change in (I think) a rather unique experiential way.  The rehab itself may not be scary, but the unknown of where you/I will end up can feel that way.  Doing rehab feels very challenging, and puts me in unchartered territory, which feels uncomfortable.  Working on neurological change - brain retraining - and waiting for the positive changes, the results, to make themselves known is very hard. 



I'd like my life to be easier; who really chooses a difficult path?  I want to improve, but the unknowns of the road I'm traveling make me uncomfortable.  Then I thought about what it would be like if rehab changes DID happen quickly.  I realized that - certainly for me, and I suspect for others as well - my system would get overwhelmed.  My brain has to have time to absorb new info, and reorganize.  If there was too much, too fast, instead of reorganization, I'd end up with a mess.  So I need to treat myself gently, extend the same kindness and compassion towards this one body I have, that I would to someone else.


My mother e-mailed me recently that she thought I was brave.  I was touched, but I don't think of myself as brave.  But it occurred to me that people who are brave aren't behaving bravely because they say to themselves "I'm going to be brave."  Most real bravery isn't something people think about; it's simple action.  It means doing things - often involving change - because you feel no other choice is acceptable.  It may be something as simple as getting up, and facing your day.  It may mean moving through and dealing with difficult challenges, even if part of you really doesn't want to.   


Years ago, when I was first learning how to play the flute, I remember when I finally was able to play Edelweiss, a song I love.  I don't remember all these years later, all the practicing.  I just remember being able to play the song - and since then I've played it probably hundreds of times.  To put it in really basic terms, babies don't suddenly stand up one day and walk into toddler-hood.  I want the changes that *I* choose to make happen, to happen in the way, and with the speed that I want.  Not in such incremental bits that the changes are hard to even notice.  But just like with learning to play Edelweiss, I have to believe that just because the changes are incremental, sometimes barely detectable, doesn't mean good change isn't happening. 

Vestibular info - Vestibular Disorders Association - www.vestibular.org
Functional Vision Problems - College of Vision Development - www.covd.org


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January 15th 2016 Some thoughts I try to hold onto, and live by....

NOTE: Please copy and paste into Google Translate to listen if needed.

With one daughter in college, and my younger one going next Fall, it's hard to express how much I wish my progress wasn't so gradual, so slow.  If I could go faster, I'd have a better sense of where I'd be in the Fall, and that my life would be more full.  But what I do now, one day at a time, is all I know and have control over.  In light of that, I've thought about some words, concepts, and what they really mean to me.  Here's a handful that are simple, but important nuggets, that I find as time goes on I try to hold on to.
 
Never give up... ever...
Saying these words is easy, sometimes living them is not.  Giving up is really the same thing to me as giving in, saying "OK, I'm done."  It's saying "I've had enough, I quit."  There are times when I feel that way.  I'm just tired to death of how hard it is, how frustrating, slow, etc. But staying put with what I'm dealing with feels worse, so I can't give up.  It's that simple.   I've talked a lot about taking one day at a time, and I DO believe in trying to do that.  But taking one day at a time doesn't preclude trying to keep some forward motion.

Never stop trying...
This ties into never giving up, but to me is taking it to the next level.  If I'm never going to give up, that means I have to keep trying.  No matter how hard it is, I have to keep trying.  No matter how many re-dos or "let's try that again"  times there are.  Trying is about effort.

Effort - that's the next thing...
Effort matters.  Always.  Even if I feel like something took a lot more work than I would like, if I can say "well, I did it, so I get an "A" for effort," that counts for a lot.  I hate when I feel depleted from something I did, but the point is that I put out the effort.  There ARE times when I decide that the work, the effort involved in doing something would be too much.  Sometimes there are just too many pieces to figure out, so then I have to concentrate on where I AM putting out effort.

Figure it out...
I've thought about this a lot.  If there's something I really, really want to be able to do - teaching flute comes to mind - then the question becomes "how?".  If something didn't work before, or isn't working now, how can I break it down enough so that it will eventually work?  I need to figure that out, no matter how basic a level it may be. 

Baby steps...
My friend Michele replied to a pm of mine recently with those words, and it was a good reminder.  Baby steps matter.  There are small things I've had to reintegrate - and some I'm still working on - and those baby steps are crucial building blocks. 

Don't take anything for granted...
Sometimes when I'm in the kitchen, or doing laundry or some other ordinary task, I have to remember that it's good that I can do it. 

When it comes to pacing, it's all relative...
The piece I wrote back in September about pacing has been read more than any other.  When I spoke recently to Dr. Margolis (my doctor who supervises my VT), he said he hears about this a lot, regardless of the age of the patient.  And that it's very individual.  It's hard to express in words how much I wish, at times, that my pacing was what I guess I'd call in the "normal, healthy" range.  But it's not.  There are still moments when the "abnormal" of it hits me - when I take a break at home, and my daughter or husband keep going about their business.  I've come to realize I have to just let those moments be.  But then I try to remind myself "OK, everyone has to pace themselves to a degree." 

Give myself credit....
Along the lines of "it's all relative," I need to give myself credit for what I do accomplish.  Step outside myself and say "hey, look at what you DID do."  I have a feeling I'm not alone in being too self-critical.  If what once was easy no longer is, then I've got to give myself credit where I can.  Period.



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January 6th 2016 Reflecting on my writing as the new year begins....

NOTE: Please copy and paste into Google Translate to listen if needed.

I promised myself that I'd write something every day.  To be clear, this doesn't mean I'll post a new piece of writing each day.  But it does mean I'll sit down, gather my thoughts, and do some writing.  I've been thinking I might also sometimes do some actual hand writing (besides little "to do" reminder notes). Handwriting is a very different - and challenging - visual exercise, and I have a feeling it would be a good exercise for my brain. 

Anyway, back to my writing.  The first thing I did with the beginning of the new year, was to take a look at the bits and pieces of writing I started but never finished, and so never posted.  Even without listening to everything, it made for an interesting reflection; ideas that floated into my brain at some point, and out of my fingers.   I feel that everything I write - whether I post or not - is all part of my journey, all part of putting together pieces of my life with my invisible disorders.  I don't think I need to understand everything about my visual system, my brain  - and not being a neuroscientist I probably couldn't even if I wanted to - but the basic understanding I've gleaned is good.  And there's a couple of pieces I may eventually finish.

I've also been thinking about this thing we call the new year - this human construct of measuring time.  I believe we need to frame our lives - it gives us some sense of control over what can feel like the haphazardness of life.  And I find myself in a reflective mood, which is something that comes fairly easily to me anyway.  When I listen to John Denver's songs, I'm struck by how timeless many of them are.  How so many of them resonate years after they were written.  I wonder if he knew, if he had any sense that that would be the case?  I also find myself thinking that if even one piece of my writing resonates a few years after I've written it, that would be pretty cool.  A little piece of immortality doesn't hurt.

Someone asked, in response to a recent VEDA post about Ambassadors, if those of us speaking out can tell the truth about the difficulties of living with these invisible disorders.  It's a fair question. My sense was that she was concerned that she'd have to present a sort of false face, and sound more upbeat than she felt.  I thought about this, and thought about my writing.  I save some of my venting for private writing that never gets published, or for messaging a friend, or sharing with Ron.

I want to be honest, but I also want to be heard; I write my blog pieces for myself, to help myself figure things out,  but I also hope to be a voice for others with invisible disorders.  I hope that sometimes my words reach people who will gain more understanding and awareness from reading what I have to say.   So I ended up replying to this person, who may be thinking about becoming an Ambassador, that I want to be truthful, but I also want to be informative and hopeful.  People will, I believe, tune me out if I do nothing but complain.  And I believe that information is powerful, so I realized it's important that I am heard.   


I also find myself wondering where else my writing will take me, what else I may find myself writing about... I'm not sure.  This is all part of my thinking, wondering about what I'm doing with my life now that gives it purpose, that makes me feel like I'm contributing even as I move through my rehab.  Because I can't just have tunnel vision, focusing on years down the road.  I wrote recently that I really want to take things one day at a time, so that means there needs to be meaning in what I do NOW.

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