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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.
Can I get a photo of you and a small paragraph of what you have and how it makes you feel, we are doing a nother awareness video. It does not have to be fancy, but more important how it makes you feel, let me know Kelly
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Sure, Kelly, I'd be happy to - when do you need it by?
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