Thursday, March 1, 2012

What's in a name?

A person with Tourette’s.



Tourette’s sufferer.


In my email this week was the weekly update from a Tourette’s forum I frequent (but don’t post on) and in the weekly update was a post about whether the term Touretter is offensive. And it really made me think. And then I read the post, and I was reminded why I don’t post on Tourette Syndrome forums.


I use this word a lot, to describe myself and what I live with. In my mind it does a decent job – I am a person with Tourette’s. A Touretter. Why would I find that offensive? I prefer the term Touretter much more than I do Tourette’s sufferer. Or Twitch. Ugh. Of course my Tourette’s makes me “suffer”, it’s a medical condition from which there is no end. Everyday I wake up and “suffer” from my condition, but that isn’t to say I am a Tourette’s sufferer. That implies to me that there is nothing I can do about it, that I am doomed to forever suffer because of my disability.

Some people were explaining that saying “Touretter” is putting the disability first. This is a concept we talk about all the time in the special education world; about not labeling the child. You say “a child with autism” instead of “autistic child”. You put the student first before their disability – to remind people that a person with a disability is still a person, their disability shouldn’t define who they are.

But isn’t that what Tourette’s does to a person? I am infinitely stronger than I would have been if I had never lived with Tourette’s. There are very few people in the world who can (honestly) say that they can walk into a crowded room and not give a whit what anybody there thinks of them, good bad or otherwise. Of course, I care what my friends and family think. But if I ran into you on the street and you wanted to stare blatantly or make rude, asinine comments, be my guest! I can’t promise that what you say and do wouldn’t be put up on my blog, but it really doesn’t bother me. The only reason I control tics out in public is to not harm myself; it isn’t because I might annoy somebody. Of course, there is a slight aspect of not getting thrown out of somewhere, but that is minimal compared to the prospect of pain. If ticcing caused me no pain, I would tic my heart out in public. It wouldn’t matter.

I am more empathetic about what other people may be living with in their lives; you can’t tell by looking at me I have a disability or am in chronic pain. So why should I judge anybody else based on external features? I am a better teacher for what I live with and I now I am better equipped to teach in the special education world because I “get” what it is like to be disabled in a non-disabled world.

And having Tourette’s really really lets you know who your “true” friends are. Trust me, it takes a true friend to be able to sit next to you at a restaurant when you continually throw your fork on the ground or head bang so badly that you can’t feed yourself, making the meal last twice as long. A good friend laughs when you tic into them and hit them, instead of getting up and moving away. In fact, I have friends who sit next to me in crowded places knowing they are in the “tic zone” so that I don’t have to worry about what I do. And these are the same friends who will laughingly contradict me when I tell them I didn’t tic because I was unaware of what I was doing.

And these are also the same friends who kick me out of work – and I do mean kick me out despite all my best protests – and would cover me so I could take a break when I needed it. (You know who you are). :)

My Tourette’s doesn’t dictate my life, it doesn’t run my life, and it doesn’t have any bearing on my hopes and dreams. But it does define who I am. I am not the same person today that I could have been if I had been neurotypical. And that’s okay with me; I like the person I am. I wouldn’t trade being neurotypical for being a good teacher or for being ashamed of who I am and worrying about what people think. So yes, I am a Touretter, and that’s okay with me.

The funny thing about the word Touretter though, is it is a word that only people with Tourette’s use. Tourette Syndrome is so grossly misrepresented and unheard of that if I call myself a “Touretter” out in public, odds are that nobody around me even knows what I’m talking about. Which leads me to why I don’t go to Tourette Syndrome forums.

When I was first diagnosed of course I went on the internet. In fact, I had done so much internet research I had diagnosed myself with Tourette Syndrome before I was in the neurologist’s office that first time. I knew I was experiencing tics, and it wasn’t a big reach to get to Tourette’s from there. The next logical step for me was to seek out forums where other Touretter’s were (this was before facebook got really big). I wanted to be able to talk with people who had survived this, people who were able to have jobs and relationships in spite of their Tourette’s. So I looked for support groups online. I didn’t even find any United States-based forums. I joined the Tourette Syndrome Foundation of Canada. Where I then discovered that there were virtually no adults with Tourette Syndrome there.

Oh, there were adults all right. But they didn’t have Tourette’s, they had children with Tourette’s. And they were using the forum to console each other on the hardship that had befallen their family. I get that Tourette’s sucks. It sucks to be diagnosed with and I can only imagine how it would feel to have a child diagnosed with Tourette’s. In my opinion though, it doesn’t help anybody to sit and post and wallow in self-pity. If you are a parent of a child with Tourette’s, let me explain something to you. Your child is the one with Tourette’s. It is their life; they are the ones who will be made fun of in school and who will have to deal with people staring at them. And I hope and pray that everyone in that situation is one of those lucky few who “grow out of it”. But that is something that doctors tell parents to make them feel better; the truth is that most individuals with Tourete’s get better at controlling it as they get older, but that they don't "grow out of it".

And I’m certainly not upset with those parents who are trying to actively find ways to help their children. More power to them. I’m talking about the ones who want to commiserate with each other about this horrible thing that has happened to their family and how will they ever deal with it? Newsflash. You don’t. Your child deals with it and it is your job to help them do that.

I couldn’t stand being one of the oldest people on the forum at 15-years-old so I hardly ever even visit and I never post. At 21 now, I would be sure to be among the oldest, and at 21-years-old I am a parent’s worst nightmare. I am the child who never “grew out of it”, so why would they want anything to do with me? I am a constant reminder of what it could be like for their children.  Forget the fact that I am successful; that I am going to graduate with honors in less than 3 months; that I am able to hold down two part-time jobs while going to school full time.  I am disabled.  To the point of needing a service dog to help mitigate the symptoms.  I will never "grow out of it".  This is what the rest of my life is going to be like; fighting for the right to have a job or to go somewhere, fighting for acceptance in a workplace and relationships, and fighting to have people see past a neurological disability to see me.  I am lucky that I am able to work and be successful, but it isn't by chance.  I have to work hard for everything I want in life.  It takes extreme physical and mental effort just to be able to sit in class.  I'm not even talking about learning anything; just the act of being physically present takes extreme effort.  If I want to actually learn, that takes more effort to pay attention and take notes.  And if I'm having any kind of a bad day; it becomes virtually impossible to sit still, to be quiet, and to be mentally present and aware enough to pay attention.  I end up re-teaching myself a lot of material outside of school and spending extra time on my weekends catching up on assignments.  I made a decision a long time ago to keep my grades up and to not let my disability dictate how I do in life.  But it's certainly not easy.  Learning used to be something that was second nature to me and now it is something I have to expend every ounce of effort to achieve; certainly not a future anybody wishes for their child.

Thank goodness for facebook though. There is a Tourette’s support page where adults(!) with Tourette’s post and share stories and discuss medication options. I am among some of the youngest people in the group. There is a wide range of experiences in the group; from people with mild tics to people who are more severe than I am and everything in between. Not that everything that is said in the group is positive, there is still a lot of “my tics are worse than your tics” stuff that goes on. But, it is a different vibe because even when it isn’t all positive, the majority of the people talking are people who “get” it.

And now that I’ve taken – what my master teacher calls – a bird walk, back to the thought that sparked this (oh so very long) post. Touretter. The only people who even know or use the term are those who live this life. So why are parents of Touretters discussing how “offensive” they find this word. What part of it is offensive? Somebody I don’t know calling me “twitchy” or a “Tourette’s sufferer”, or people watching me waiting for me to start swearing uncontrollably, now that is offensive. Calling me by what I am doesn’t offend me. I am a person living with Tourette’s, a Touretter; if you see something offensive in that statement then you probably aren’t comfortable with the words Tourette Syndrome or disability either.

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