It's mid-September. I
know that by this time, eight years ago, I'd gotten sick. I find myself thinking
about what happened to me, and what's happened since then - this whole journey
I've been on. And continue to travel. Then I end up thinking about all the
therapies I do - Feldenkrais, vision, and cognitive behavioral. I wonder - again
- where I'm going with my treatment, my journey.
I've checked out what I
can think of on my own about volunteering, and I'm going to an orientation in
three weeks for the Department of rehabilitative services - DORS.
I have to attend the orientation in order to be assigned to caseworker.
I don't know if anything will come of meeting with a caseworker, but it feels -
for now at least, like the last idea to pursue.
I'm reaching out more,
by phone, to connect with friends. I feel good about that. And I tried
something recently that I haven't for nearly eight years - I took a book off of
one of our bookshelves. This might seem like a small action, but the last time
- about a month into my illness - I took a book down, and attempted reading, it
went very badly. That experience ended up compounding the PTSD I had developed
from the night I got sick.
This time I know what
book I took down. One of the Laura Ingalls Wilder Little House books. I've got
the complete series, which means not just having the little house books, but
also On the Way Home, West from Home, and A Little House Sampler. These last
three books are diary entries, reminiscences, and letters to her husband,
Almanzo. All three were written before the Little House series.
I looked through On the
Way Home, looking at the photos, reading a few captions. Very difficult because
the font is so small. Frustrated, I took out the last series book, The First
Four Years, and - surprise - the font is larger, the lines of text space
further apart. It's the only book in the series with this font and spacing. My
first reaction after looking at On the Way Home was "reading's just not
ever going to be in the cards for me!". But then I thought, "well, what
about the First Four Years? - is that within my reach?".
I took The First Four
Years with me to vision therapy. Ann and I talked about the many components of
reading - font size, color of paper, size of page, color of print, ability to
literally see, knowing basic words on sight (the, it, that, she, etc.),
comprehension, vocabulary. I'm probably
leaving something out.
Ann showed me how to
break the reading down into very small bites, blocking some of the text. Ann
said breaking any reading task down into really small, manageable bits is
really important because she sees me tighten, tense up when my PTSD is
triggered. Ann was excited that I brought the book in, with what's happening in
my treatment, and doesn't want my PTSD to take over. The purple post-it note is my book mark, combining what I read in vision therapy, and what I read today.
I'm pretty sure that
skills I work on to help with this whole complex thing called reading, impact
other areas as well. It's SO frustrating, dealing with the impact of my
illness, but what happened to me happened. I can't change what happened. So
I've GOT to make the choice to take whatever baby steps I can.
I told Ann I'd listened
to an article about syntonic light therapy, and what it said about standard
treatment. I also told her that I
remembered Dr. Margolis had said, that the plus side of my sensitivity is that
a little bit of treatment can have a big impact on me. So I asked her if I should pay attention to
what it said in the article, regarding standard treatment, in terms of my own
treatment. She said "no, that's irrelevant, you're not a cookbook."
There's no exact recipe
for my treatment plan. I need to find what works for me, and see where that
takes me. But I can't get so lost, or preoccupied, in that looking, that I stop
noticing where I am, and what's good about that place, that space that I'm in.
