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
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.