Cara asked me recently why
I was writing a blog. I told her about a
conversation I'd had with Leena when we came up with the name. I told her how Leena wrote key words as we
talked, and that I plan to keep the note because it's a reminder to me of that
brainstorming conversation. In the end,
there are really two main reasons. I
love to write despite the challenges it now presents. Actually, I need to write, just like I need to
have music in my life. Whether I'm
writing about social issues I care about, or music, or an audio book that moves
me. The other reason is that I want to
add my voice to those already working to raise awareness and understanding about
invisible disorders. I believe very
strongly that each person can make a difference. I don't ever want to see myself become
silent, thinking "why bother, it doesn't matter. I'm only one person, who's going to listen?" There's always at least one person who will
listen.
Writing is really
something that has always been a part of my life, although not in a public
way. I've been writing ever since I was a teenager. A lot of it was private journaling, which I
still do, and I also wrote the occasional short story or poem. Some students hate writing papers, but that
was never me. I did loads of writing
when I was a student, and back then it was, of course, actual writing or typing
on paper. I still remember typing my
Masters Degree thesis. Writing, or
rather keyboarding is challenging for me now, though not because I need ideas
or inspiration. It takes time for me to write a blog because of how I need to
pace myself. But for the very reasons that
writing is challenging for me, it's also good for me. And I'm fascinated with the power of writing,
both for what it does for me to put thoughts, ideas and emotions into words on
paper (or computer), and with the ability to reach people.
Vision problems are fairly
common for people with vestibular disorders, since vision is a key element in
the whole system of balance. My vision
problems are not particularly common, based on information I've taken in about
people with vestibular disorders. Vision
disorder is a very broad term. Everyone
knows what the word vision means, though many don't know how complex the whole
visual system is. My problems, as I've
mentioned in other blogs, have nothing to do with eye health. My eyes are quite healthy. I don't wear glasses, or walk with a cane, or
in any way LOOK as if I have any vision problems. If you heard me ask Ron to read something to
me, or saw me listening to text on the computer through my headphones, you
might wonder what was going on. There
are many ways I am challenged throughout the day, despite the fact that I can
literally see quite clearly.
My vestibular disorder,
Migraine Associated Vertigo, is also sometimes called Vertiginous Migraines. When people think of migraines, they think of
someone in pain, and that part is true.
But migraines, which vary in severity, can also cause vertigo or
disequilibrium, which is why I don't like to just say I have a migraine
condition. The term vestibular disorder
is broad, because MAV is only one of many vestibular disorders, but more
accurate since vestibular (which refers to the inner ear) means my equilibrium
is affected. It's still not a perfect
term, since balance is really a whole system, not solely dependent on the inner
ear. But the words vestibular disorder
are definitely an improvement. There are
many names of disorders and conditions that are now commonly used and familiar,
and I want vestibular disorder to be like that.
There are situations when it's appropriate and necessary to tell someone
I have a vestibular disorder, and I don't want it to seem like I'm speaking in
a foreign language.
I believe people are often
afraid of being judged or stigmatized if they tell someone their medical
problem. That those with disorders will
be treated differently, as if they've somehow BECOME their disorder. No one IS their disorder, regardless of the
problem. You are still a person with a
personality. Using the phrase "I
have health issues" is not, in my opinion, an improvement. To me, this is a polite phrase that people
use, often when they are worried about saying what is really going on, or
because they don't think they will be understood. There are so many people living
with problems no one can see, and people don't think about that often enough,
instead judging others, presuming they know everything they need to know about a
situation or person. I feel very strongly that people need to stop and think,
realize there often is more to the story than meets the eye, and treat each
other with compassion and understanding.
Someone might see me at an event,
and not have the slightest idea that anything is wrong. In fact, I need to get my bearings regarding
the size of the room, the number of people, the noise level, the lighting,
etc. I'm fortunate that the congregation
I belong to is a wonderful, supportive community. Even so, no one really understands what it's
like for me on a day to day basis living with vestibular and vision
disorders. So my writing gives glimpses
or snapshots of my experiences. Those snapshots are important windows into my
life, as I live with invisible disorders.
Sharing my experiences can
be difficult, or make me uncomfortable, but that's not a bad thing. Sharing my writing makes my medical
challenges more real to me because I look at and think about my situation in a
different way. This process, and helping others with invisible disorders, is
all good. I don't personally believe
that my vision or vestibular disorders happened for a reason, or were meant to
be. I DO believe that learning and
growing from whatever I have to deal with is really important, and a much
better expenditure of my energy than anger or self-pity. To say that what I've
been going through, and working with hasn't changed me, had an impact on me and
my life would be ridiculous. Of course
it has, some good and some bad. But it's
still NOT who I am, not my identity.
I really enjoyed reading your blog, I also have a blog maybe we can get this info out there. I have autoimmune disease of the ear. I deal with all the vestibular problems that every one else does. I am almost to the point I need cochlear implants. www.kellysautoimmunesupportgroup.com I also started a support group. Would love to keep in touch. Kelly
ReplyDeleteHi Kelly - thank you! I took a look at your site, but I'll have to take it in later - a lot for me to look at! I'd love to keep in touch - I'm glad you commented! Tamar
DeleteYour writing is concise and clear and expresses what you have to say to us every day.
ReplyDeleteThank you!
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