My
therapist said something to me the other week that really resonated with
me. (And you would have a
therapist too if you had everything I have going on inside your brain, so I
don’t care who knows this about me.)
He was talking about scar tissue.
In the metaphorical sense.
But as I’ve been thinking about it, my scar tissue isn’t just
metaphorical. It isn’t just
psychological. It’s physical too.
All
you have to do is take a look at my x-rays (which if I ever get a hold of, I’m
putting them up as permanent proof for anybody who wants to disagree with the
severity of my Tourette’s). I have
some serious “scar tissue”. Maybe
not literal scar tissue, but things that I have caused through my Tourette’s
that will never heal. Let’s start at the top, shall we? My neck curves the wrong way. Everybody’s neck curves one way, but
mine is ornery and curves the other way.
And maybe that’s genetic more than tic-related, I don’t have pre-TS
x-rays to compare it to. But I’m
pretty sure that my C-1, -2, and -3 vertebrae problems are tic related. (For those of you playing along at
home, those are the top three vertebrae in your spine that connect to the base
of the skull.) See, these
vertebrae aren’t curved like they are supposed to be, not even in the wrong
direction. They are straight, one
right on top of the other. And
they aren’t supposed to do that.
Everything
in my neck is compressed together.
I couldn’t tell you what it’s called, but on my x-rays
there’s a lot of white spots (and no,
it isn’t bone). Stuff on the bone
that alludes to constant degeneration and wear. There’s also a point a little lower down in my neck where the
vertebrae are pinching a nerve.
Constantly. Now, that’s not
to say I’m in constant pain from this pinched nerve. But even now, I can feel the stiffness in my arm and I can
sense that one good tic will send it over the edge. I’m always one good tic away from mind-numbing pain from
that nerve. Good times.
If
we move a little lower down my spine we reach my shoulder blades where my body,
in an act of defiance, has attempted to take matters into its own hands. And failed miserably, I might add. There are four vertebrae in my upper-back
that are locked together by bone spurs.
Most people know about bone spurs in your ankle, they’re relatively
common there. The only explanation
my chiropractor could come up with was that over time, the bone spurs developed
as a way to stabilize my spine as I ticced. Which I guess, if it’s kept me from serious spinal damage is
a good thing. But I’ll tell you
what, there is constant restriction of movement and stiffness and most of the
times pain from those bone spurs.
(And I have proof these are due to tics because I do have pre-TS x-rays
of this part of my spine).
And
then, the tailbone. I don’t know
what exactly is wrong, only that every week when I go to the chiropractor I
have one short leg that he attempts to remedy by messing with the vertebrae in
my lower back. And it hurts. I do know for damn certain that the
vertebrae aren’t where they are supposed to be, because if they were I
certainly would not have been able to pinch my sciatica nerve the other night
simply lying in bed.
Last
but not least, the coup de grace. The icing on the cake. As if my body hadn’t wrecked itself
enough. My entire spine is
literally (literally… I always think
of this scene in the Big Bang Theory when I use that word… and now I’m wondering if my constant
use of the Big Bang Theory is alluding to my inner geek…) being tugged towards
the right. It’s on a gradual
slant. And I’m not talking about
scoliosis, because I have that too, I’m talking about the fact that I tic so much stronger on the right side of my
body that those muscles have strengthened incorrectly so much so that my spine is no longer centered. Which, I can now blame any poor posture
on.
That’s
the physical stuff. The bruises
fade away. The concussions and
migraines dissipate over time.
This spine stuff? I’m going
to be a permanent chiropractic patient.
It is the only relief I have ever gotten. But unless and until my body decides to take a break from
the constant ticcing, the chiropractor can only relieve immediate
symptoms. They can’t affect much
change on my body. And I’m pretty
sure I’ve outlined before why I would be remiss to wish the tics gone for a
short amount of time.
The emotional scar tissue is pretty gnarly too though. It’s the reason I don’t trust people I don’t know well and the reason that I’m hesitant to do things. The reason that I dislike telling employers I have Tourette Syndrome and the reason that I’d rather suffer through a class rather than talk to a professor I don’t know about something deeply personal to me. Scar tissue is a funny thing. Because every time that wound gets reopened again, the scar tissue is more prominent. It takes up more room, be it on your body or in your psyche. I may not be offended by the things that are said to me, but every remark picks at that old scab. The one that is from years and years ago when I caught a kid in a class imitating what I was doing to the delight of all of his friends. Yeah, it’s healed over. I could probably meet him today and not feel the need to scream and yell. But I do remember his name. I remember how it felt. So no matter what I feel now about those types of comments, the fact remains that once upon a time somebody seriously wounded me. So much so, that event ended up being the catalyst towards me transferring schools that year. And every time I hear something or see something to the same effect, it still resonates with that experience and years ago.
There’s
an activity we use in the schools to talk about this feeling. And for those of you who aren’t
teachers, I’ll outline it for you.
Every student receives a piece of brand new notebook paper. They’re all the same, and all without
flaw or blemish. The teacher then
instructs the students to crunch the paper, stomp it, scribble on it, and
basically destroy it. After a
little time and everybody’s papers are thoroughly ruined, the teacher tells
their students to now put the paper back how it was. Of course, this is an impossible task. Even if all you did was make one crease
in that paper, there is no way you can return it to it’s unblemished
state. The teacher then leads the
discussion on how bullying and mean things that we say even if we don’t mean
them, are like crunching up the paper.
No matter how sorry we are afterwards or how much we try to fix what
happened, we couldn’t make it like it never occurred. We can’t take away what was said or done. And the more times we crunch the paper
or say something mean to a classmate, the harder it becomes to take away what
was said and make it look like it did before. It’s a pretty powerful activity that can resonate strongly
with kids; and one that I will use if I ever find myself in a situation needing
it.
I
had surgery a few years ago, for something completely non-Tourette’s related
(but it fits in, so go with me for a minute). I was born with a wacky sinus condition that was fixed when
I was about 2 years old. Luckily,
the doctor I saw was able to remedy it to the point that I went 15 years
without considering another surgery (about 50% of people who have what I did
need repeated surgeries throughout their life). When I did eventually consider surgery as a viable option (I
couldn’t breathe whatsoever), I found another surgeon, suffered through CAT
scans and scheduled surgery. When
they removed the gauze a week later and he showed me the scans from the
surgery, he remarked about how much scar tissue had previously been in my
sinuses and “look!” how clear they are now.
I
was able to take one lungful of air in through my nose after the surgery before
my sinuses stopped working again.
After
I was off the Vicodin I thought about what he had said and it really made me
upset. I still couldn’t breathe –
and still can’t – and in my stubborn opinion, it is actually
worse than it was before the second surgery. Trying to remove the scar tissue didn’t work, just like
trying to smooth out the piece of paper doesn’t work. Because every time you try to fix it, the scar tissue comes
back worse.
Emotional
scar tissue is the same way. I
have trust issues because in the years before my parents were supportive of my
disability (the years when they pretended I was “normal”), I couldn’t trust
them with what I was living with.
I couldn’t trust the reaction I would get, so I didn’t open myself up to
them. I kept things to myself
because it was safer. And that’s
spilled into other relationships too.
It’s still hard for me sometimes to open up to people and say the words,
“I have Tourette’s Syndrome.”
Because that scar tissue is still there. It's getting easier; it's a lot easier to say "I have Tourette Syndrome," or "I am a person with a disability," than it was 5 years ago or even a year ago. It takes time. That years-old wound formed from Tourette’s being taboo in my house, still twinges when I’m in a new
situation where I have to tell people.
Those looks I get when I tell people what I have and they don’t
understand or believe in the validity of my statement, all reopen that old
wound. The professors who give me
a look and then ask simply, “So are you going to swear in my class?” all make
it harder to heal that wound.
No comments:
Post a Comment