Thursday, January 19, 2012

Tourette's is...

Tourette Syndrome is not swearing uncontrollably.
Swearing as a tic is called coprolalia.  This affects approximately 10-15% of people living with Tourette Syndrome.  I have lived with coprolalia and I promise you there is nothing funny about saying "f***" uncontrollably in possibly inappropriate situations.  I thought I wouldn't be able to be a teacher; thankfully for me, it has been over 2 years since my last coprolalic outburst and I do not consider myself to be coprolalic anymore.

Tourette Syndrome is not funny.
Yes, I look funny at times.  Yes, I find my tics mildly humorous at times.  Yes, people with Tourette's often have a very good sense of humor.  How can you not when you make a spectacle of yourself on a daily basis, doing and saying socially awkward and inappropriate things.  However, this doesn't mean it is okay for you to laugh at my tics.  This doesn't mean that I'm okay with people making fun of me behind my back.  Yes, I have a good attitude about living with Tourettes; but there are many many days where I am in chronic pain because of my tics.  And there are even more days when I wish I had a little bit more control over my tics so I could go out to a restaurant without dropping food or a utensil on the floor or so I could be in a crowded movie theater without worrying that I would make a large noise or hit the person sitting next to me.  Losing control over your body and your words is not funny; I don't find humor in the fact that I can't walk down a flight of stairs without worrying that I could fall.  Tourette's is a disability - think about the last time you laughed at somebody with a guide dog or somebody in a wheel chair.  Laughing at a person with Tourette's is the same thing.  

Tourette Syndrome is not something you "grow out of".
Granted, there are a small minority of children who are diagnosed very young and who do "grow out of" their Tourette's when they get older.  That isn't to say though, that every person with Tourette's will get better when they get older.  Tourette's isn't something that only children have.  It is a very real neurological disorder that many adults live with.  I still curse the day that the first neurologist told my parents that there was a chance I would be less symptomatic and maybe even not tic at all as I got older.  My parents hung onto this chance like it was their last hope, and it has taken 6 years for them to come to terms with the fact that for me this is a forever disability.  The Diagnostic and Statistical Manual of Mental Disorders (DSM) IV says that you cannot have a diagnosis of Tourette Syndrome unless you were symptomatic before the age of 18.  However, there are instances of adult-onset Tourette's and even more cases where people simply are not diagnosed until they are much older.

Tourette Syndrome is not curable.
I will live with my Tourette's every day for the rest of my life.  There is no cure.  There is not even a known cause (though there are many theories).  There are medications to try, cognitive behavioral therapy, and even brain surgery, but there is no one thing that works for everybody.  And then in cases like me, sometimes even all of those things do not help.  (I have tried medication and cognitive behavioral therapy techniques, but I am vehemently opposed to brain surgery.  Maybe one day if they discover what actually causes Tourette's and they can pinpoint where it occurs in the brain, I would consider it, but now it is predominately guess work with very few people undergoing brain surgery for Tourette's and even fewer having diminished tics as a result.  No thank you.)

Tourette Syndrome is not controllable.
This isn't something I can control.  I have unvoluntary tics which means I have some degree of control over when I tic and when I don't.  This doesn't mean that I tic because I want to.  This doesn't mean I can decide not to tic one day and make it happen.  This does mean that I am lucky because instead of living on disability because I have no control over my body, I can work.  I can drive.  I can be functional.  But saying you are functional is very different than saying I can control Tourette's.

Tourette Syndrome is a disability.
My condition is covered under the Americans with Disabilities Act (ADA).  This means I can't be kicked out of a movie theater or a restaurant because I am disruptive.  This means that I can't be denied housing because I have a disability (or a service dog) and that I cannot be kicked out of housing if my tics bother those around me.  I have to adapt my life and schedule every day to make myself successful in a world that is not made for people with disabilities.  People with Tourette's are not weak, they have a disability they cannot control.  I cannot be denied a job on the basis of my disability or because I require different accommodations than most people.  The unfortunate reality is that many people living with Tourette's who ask for accommodations in the work place lose their jobs.  It is a sad world when a smoker can get 15 minute smoking breaks, but when a person with a disability asks for small breaks throughout the work day to better control their disability (and thereby increasing their work productivity) they can lose their job.

Tourette Syndrome is something that has made me stronger.
I would not give up my life as a Touretter and the tough times I have had for anything.  I am a different person today than I would have been had I not lived with a disability.  I am infinitely stronger for everything I have experienced.  I may not like to be in a store and have everybody's eyes on me, but I don't care what anybody thinks.  I don't care that I'm the center of attention and that people are staring at me.  I don't care anymore if people in my class laugh when I make loud noises or throw pens.  I can walk into a room with people I don't know and tic without minding what anybody thinks.  Of course I still try and suppress as much as I can, but that is more about protecting myself and not injuring myself, than about making people around me feel more comfortable.

Tourette Syndrome is something that teaches patience and empathy.
I have empathy; much more than I would have ever had had I not had Tourette's.  I am a better person and a better teacher for it.  I am not as quick to judge people; I don't like to be judged at first glance, so why shouldn't I afford others the same courtesy?  I know that I don't know everything that is going on in a stranger's life, and it isn't my right to know.  I know that when people are snippy that there may be something else going on in their life affecting the way they are acting and so instead of jumping to the conclusion that they are rude, I am patient because I hope that people will afford me the same luxury if the situations were reversed.  I have also had to learn to be patient with myself.  It may take me over an hour to eat a meal because I can't control a spoon the way I want to or because my head is moving too much to eat.  It may take me a long time to walk through a grocery store because only one of my legs is working in the manner I want it too.  I may hold up the line at airport security because my hands won't work long enough to pack up my computer and zip my bag.  All of these things have taught me patience; I have had to learn that it is okay to slow down some times and take longer to work things through, not because I enjoy being lazy or taking a particularly long time to do a task, but because that is the way my body is working at the moment, and I have to be okay with that.

Tourette Syndrome is what makes me the teacher I am today.
I am a better teacher for what I have lived through.  I know what it is like to not fit in and I know what it is like to not do well in class because of things outside of my control.  I know what it is like to be bullied.  I can empathize with students with Attention Deficit Disorder (ADD) and Attention Deficit Hyperactivity Disorder (ADHD) because I understand what it means to not be able to sit still in a class.  I get what it's like to not be able to attend to a lecture because your mind is thinking of 100 things at once.  I may not understand what it is like to live their lives or live with their disability, but living with Tourette's has taught me much more about empathizing and being sympathetic to individual student needs.

Tourette's is not something I would wish on anybody.  It is a battle every day to do simple tasks like type an assignment, read a book, or feed myself.  However, it is not something I would give up tomorrow if I could (though there are a few tics I would like rid of).  It is a constant reminder to be humble and to be empathetic in my life and my job.  I know who true friends are because they are the ones who don't mind going out with you to a restaurant when you throw utensils on the floor.  They are the ones who don't care that you hit them if you sit next to them somewhere.  They are the ones who could care less what noises I make when we're having a conversation.  And the people who don't do these things?  Well... I didn't need them in my life anyway.

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