To listen: copy & paste into Google Translate- this
also translates to other languages - and click the "speaker" icon.
Replies to blog comments - pls check back for replies - I
do try to respond!
I've been thinking about this piece for a while, and
decided it was time to put it out there.
These thoughts, like a lot of things, are a work in progress. This past Fall has brought changes, and
frustration, and finally, contemplation. I've been adjusting to my daughters
being in college. I'm proud of them, but
it's also meant thinking about my limitations, which is frustrating. Anyone who knows me knows that I'm concerned
about the general election we just had in the U.S. However, there's a limit to what I can do, how
involved I can be politically. I'm also
part of a group that worked on a WHO petition for vestibular patients, but
again, there's a limit to how much I can participate in this project.
I've talked about the importance of using Facebook, but
my disorders impact my activity. I'm
very limited re my reading. Really reading - meaning not copying and
pasting text into Google Translate so I can also listen - is a big
challenge. It's one thing to see words -
almost like an image, but quite another to actually process the meaning. If I try to read too many headlines, or
comments on FB, without copying and pasting into Google Translate, I get
overloaded. Combining the two systems -
auditory and visual - makes comprehension easier, but copying and pasting
headlines into GT is very impractical.
Re comments, or articles for that matter, if I copy and paste too much
into GT, there's too much eye gaze switching, too much convergence on small
targets, and I get overloaded.
Sensory overload doesn't feel good, and if I don't pay
attention, can lead to migraine-like symptoms.
On the plus side, I usually can tell when I'm heading towards
overload. So, I have to back off. I have to pace myself. Taking a few minutes here and there
throughout my day is, I remind myself, better than feeling lousy and needing to
chill out and do basically nothing for maybe an hour, while my system gets
reorganized. Yes, backing off means I
feel better in terms of symptoms, but also somewhat less connected. Then it's time to do writing that doesn't necessarily
get published, or post on the Vestibular Support Group simply to get something
off my chest. I remind myself that I'm
grateful for what I AM able to do online, and then find a good audio book that
gets me out of my own head, and life.
All of this also means I've been thinking about what it
means to accept my situation, without feeling like I'm giving up. I need to continue to communicate with my
therapists - my OT and VT - so they understand exactly what my struggles are,
and can work with me. But I also think I
need to sit back and say "OK, this is my life, these disorders are part of
me.". I have a migraine condition
that I mainly experience as light and sound sensitivity. I have a vision disorder that impacts my
life, realistically, in myriad ways. I
don't think they define who I am, but I DO think accepting that I have these
disorders, rather than fighting that concept, is actually healthier for
me.
Acceptance won't come all of a sudden, and it doesn't
mean I'll never feel angry, or sad, or whatever. This process is far from linear. But acceptance can, I believe, allow me to
find a sense of peace about my situation.
Acceptance doesn't mean I'm going to stop putting effort into my
rehab. But it DOES mean it's time for me
to say "that's right, you can't do (fill-in-the-blank)... this
happened....". The whys and
wherefores don't really matter anymore. Thinking
about whether or not I'm "too young" for something like this is
irrelevant, and I know I'm not the youngest person to be dealing with these
kinds of disorders. Thinking that
someone else with a different disorder somehow is better off, has it easier
than me - feeling jealous of others, what they can do - is normal and
understandable, I know, but not helpful for me in the long run. What matters is to pace myself, take care of
myself, and recognize the value of what I CAN do, the person I am, even WITH my
disorders.
