Wednesday, March 28, 2012


Last night I was quite shocked and truthfully offended by an offhand comment made on NCIS. In my opinion, it was completely unnecessary for CBS to have chosen to make a joke about Tourette’s during the show and unless you are keyed in to listen for things like that you would not have even noticed it. Here is the link to last night’s episode; the remark happens right around 1:50.

And here was my reaction.

My email to CBS: “On tonight’s NCIS episode, a character made an offhand remark about Tourette’s in the opening scene. As a person living with Tourette Syndrome, I was offended by the callous nature of the comment. I know most people don’t even realize that something like that can be offensive, but it is. It is socially unacceptable to make fun of a person in a wheelchair or somebody who is blind, but society views making fun of somebody like me as acceptable. I am a person with a disability; I will have a disability for the rest of my life. And every day of my life I am faced with the challenges that other people with disabilities face, and the some. Tourette’s does not mean I run my mouth all the time and say every thought that pops into my head; it means I do and say repetitive things, over and over again. Tourette Syndrome means I lose control of my body; it is excruciatingly humiliating and painful. Every day of my life. Just because I have Tourette’s doesn’t mean I am, or give me an excuse to be, rude. And every day I am forced to face the stereotypes and misconceptions held by the public due to offhand ignorant comments made on television and in movies. In doing so, you are doing a sector of the disabled population a disservice, because when the media pokes fun at a neurological disability, suddenly it is okay for everyone else to do it too. And by perpetrating things that are not true about Tourette’s and by presenting it in the wrong light, the media continues to fuel the ignorance surrounding Tourette’s and the multitude of challenges that we face daily that are not helped by ignorant comments and jokes.”

Now truthfully, was I really all that offended last night? Not really. Was I super upset? No. I was however shocked and frustrated; there is a reason I face stereotyping and discrimination on the basis of my disability and last night was a perfect example. So what made last night different than other shows that I’ve posted on my facebook page in humor? The nature of the remark. Let’s look at the Big Bang Theory for a minute. In this clip (which I find hysterical) one of the characters makes a joke about Tourette Syndrome.

Clearly someone has done their homework. A lot of my tics sound like that. :) And it’s humor that isn’t used in a way to exploit a disability, to misrepresent a disability. I thought a lot about this last night; why this clip doesn’t offend me in the slightest, and why I was moved to complain to CBS last night. It could come down to the fact that the characters who have made Tourette’s references on Big Bang Theory should be classified themselves as being on the Autism spectrum. But truthfully, what I think it is, is that when they joke about Tourette’s on the Big Bang Theory, what they are saying is 100% truthful.

And what CBS decided to joke about was not.

I am not somebody who gets offended easily; you really have to work hard if you want to upset me. I have a very thick skin, due mostly to all of the nasty ignorant things that have been said to me or about me over the last 6+ years. You learn how to develop a thick skin, or you don’t go out in public at all. I have a good sense of humor about what I live with; I have to. My life would be miserable if I let every little thing anybody said upset me or if I let every tic I had that made my life difficult, reduce me to tears.

Not to say that there aren’t days where that happens; I have been known to scream and cry and stomp my feet and throw things that are close to me when I have bad bad days. But those are few and far between. But if I got frustrated every time I cleared my throat unintentionally or every time I struggled feeding myself because my head and hands would not cooperate with my brain, I would spend every minute of every day frustrated. And I have chosen not to live that way.

Does that mean I’m okay if people laugh at me? Not at all. Why don’t I take the one thing that you are humiliated and embarrassed about and poke fun at it. Not so fun all of a sudden. But, if I am laughing or if I realize that the situation is so absurd that there is no appropriate reaction but to laugh, I’m okay with it. My friends understand that there are times it’s okay to laugh and times where it’s not (and typically my facial expressions are a good indicator of this!).

What happened last night upset me for two reasons. First, it was unnecessary. There was no comedic value to be gained by throwing the word “Tourette’s” out there. There was no reason related to the plot of last night’s show and as soon as it was said, the show moved on. Why then, make an unfunny offensive joke? It simply wasn’t warranted or needed.

Secondly, and more importantly, the joke was WRONG. That joke is the reason that people don’t understand Tourette Syndrome. The reason that people think it is okay to make fun of something they don’t understand. Tourette’s doesn’t make me run my mouth; I don’t have tics that make me say whatever I’m thinking. The verbal tics I do have are repetitive. I cannot say that loud enough. A tic is something that happens over and over and over. I have palalia, which in truth (unless I’m really really agitated) sounds like a stutter. I REPEAT words or syllables that I was already planning on saying. Sometimes if I’m really upset over something and I’m not paying attention, I get stuck on a phrase. So yes, with palalia it’s never the same words twice, but it’s a repetitive stutter. I don’t say something once and then move on.

With coprolalia, it was the same swear word over and over again. It is NOT saying something rude that in the situation is appropriate and then moving on. (Which on a completely unrelated note is why I hate those damn “Tourette’s Guy” videos so much.)

Just because I have Tourette’s doesn’t give me a “Get out of Jail Free” card when I’m rude. It explains some behaviors I have; if I’m not paying attention to you, I promise I’m not trying to be rude. It’s because I’m having a battle between my brain and my body and I don’t have enough concentration to spend on a conversation. When I hit people, and I do, it’s because of an errant tic; not on purpose. I would be horrified if somebody ever caught me blaming something on my Tourette’s that I was in control of. So last night, when they decided to blame a character’s excessive talking and off-topic comments on Tourette’s, I think it’s easy to see why I was prompted to act.

Did it really offend me? No, not really. Do I think it’s doing Tourette’s awareness a disservice? HECK YES. If things like that are okay to see on primetime television and in movies, then what is to stop anybody in public for making jokes about themselves or a friend having Tourette’s when they do or say something stupid and inappropriate or from making fun of somebody who is truly living with Tourette Syndrome. Now me? I have a thick hide. The worst thing anybody ever said about me was that I used my disability as an excuse to not work, and that I really wasn’t that disabled. My reaction when this got back to me through the grapevine (this was in a work setting) was – truthfully – that I had wished he had the balls to say it to my face, because I would have had him written up or fired for harassment. Did I go home and cry about it? No… Did I tell all my friends I worked with? You better believe it. We all had a good laugh about it that night.

But what happens when a kid, maybe even who has just been diagnosed, hears things like that? When they are made fun of or bullied in school? When they are made to feel ashamed of something they have no way of controlling? I can handle it now; the first time I caught somebody imitating me behind my back in high school I did go home and cry about it. It blows my mind that we can have come so far in some respects with acceptance, but that kids still throw around the words “retarded” and “gay” with callous disrespect for what it actually means to be those things. We know that it is socially unacceptable to make fun of somebody who is in a wheelchair or who uses a guide dog. We don’t make fun of individuals who are developmentally disabled; heck, even my 3rd graders know that. Why then is it okay to joke about what I live with? To make fun of me? I am just as disabled as any other disabled person; the Americans with Disabilities Act defines a disability by its impact on your life, not the diagnosis. Jokes about Tourette Syndrome are just as offensive and ignorant as jokes about any other minority group; but, because we don’t know much about it – as a society – it’s okay.

And yes, I will scream until I’m blue in the face. Until I talk everybody’s ears off. Because I truly believe that if I send enough emails and reach enough people, that maybe I can start making waves. And maybe, just maybe, this could be something that changes in my lifetime. After all, that’s how the R-word movement got started.

Friday, March 23, 2012

Access Denied.

In living with Tourette’s, I have never – knock on wood – been kicked out of anywhere, or even had anybody attempt to kick me out of a public space. The thing about “right to refuse service” is that some people view it as a way to discriminate and kick anybody out that they don’t want in their business. That isn’t the way it works though; a women-only gym has the right to refuse service to men because they are refusing service to every single man on the basis of their business. A restaurant has the right to refuse service to someone who is drunk and disorderly. They cannot however refuse service to me because I am disorderly as a direct result of my tics; you cannot discriminate on the basis of a disability. Even if it’s in the movie The Artist, legally, I can tic to my heart’s content and be as loud and disruptive as my tics dictate because I cannot be refused service on the basis of a disability.

That being said, I don’t put myself in situations where I know I will cause disturbances. While I will fight for my right to be somewhere, it isn’t conducive to me enjoying myself out somewhere or anybody else enjoying themselves anywhere if I can’t stop ticcing. Discriminating against somebody on the basis of a disability is illegal; whether that means a person is seated somewhere away from the rest of the clientele, whether they are given slow service in the hopes they give up and leave, or if they are refused access at the door altogether. Because the nature of my disability is to be loud and disruptive, I cannot be denied access because of that (there are a few very limited exceptions, for example places of worship do not fall under the Americans with Disabilities Act). However, I recognize the impact of my disability. I recognize that because of the nature of my disability that I can be disruptive and that it isn’t always right for me to go places. Not really so much because I worry about disrupting other people, but more because I dislike being in situations where I lose control of my body. It is painful and exhausting to tic, so I rarely will knowingly put myself into situations where that will happen.

As a person with a disability, access challenges are something I worry about. Because I am careful where I go, when I go there, and who I am with, it isn’t something that I truly worry about a lot. When I have a service dog though, access challenges are something I anticipate facing much more often. I have been diligently researching the laws regarding service dogs in public, trying to educate myself so that (even if it is my first time ever in a grocery store or going to a restaurant with my dog by myself) I can sound confident and educated about my rights. For example, I have learned that although it is common courtesy to vest your dog out in public, having a vest or harness or any other identifying feature on my dog is not required by law. My dog will be wearing a mobility harness, so that is a moot point – but, if I were ever without it I wouldn’t need identifying things on my dog. Not to say that life wouldn’t be a little easier if I adhere to the common courtesy and vest my dog. :) There is no form of identification I need to carry in order to have access somewhere; there is no national registry for service dogs, and in my opinion there shouldn’t be. I shouldn’t have to register features of myself and my future dog with a registry in order to go somewhere. If an able-bodied person doesn’t have to prove their right to go somewhere, then neither should I.

I also know that a business can ask me two questions. One, is this a trained service dog for a disability? And two, what tasks does it perform? They cannot ask me what my disability is. I do not have to disclose. Ever. Not even in a work environment (though work environment rules about service dogs are a little different, they still do not need to know the my disability, just the extent to which it affects me and the reasons for a service dog). All I have to say in public is “this is a service dog trained to mitigate symptoms of my disability; it provides mobility support .” Truthfully, that is all I should have to say, but for good measure I can always throw in, “And, under the ADA, you have to allow me and my dog access.” That’s it – they don’t get to pry anymore than that and if I say those things and I have a dog that is well-behaved, I cannot be refused anywhere.

Not that I think those will be the magic words everywhere I go. Walmart had a class-action lawsuit recently due to the gross number of service dog access challenges (and denied access claims) nationwide that led to the change of Walmart policies regarding service animals. The only person in a Walmart who is allowed to ask you about your dog now is the greeter.

I have said before that what I live with is an invisible disability. The truth is though, that it’s a little bit of both; invisible and visible. I look normal, up until the point I stop looking “normal” and start ticcing. People who know me really really well can tell a little bit before the ticcing starts, but there are no outward symptoms or characteristics that alert anybody to the fact I have a disability. For a good majority of the day I am in control of my body; I do not look disabled. If I met you on the street and we had a brief conversation, you wouldn’t even realize I had Tourette’s. Because I am able to appear neurotypcial for short periods of time, I anticipate having – as many people with invisible disabilities and service dogs do – a fair amount of access challenges, or at least people questioning me about my right to have a service dog.

And I have mixed feelings about that. As an educator and somebody who is trying to increase awareness about Tourette Syndrome, I would say that of course I would take the time to educate every person about Tourette’s and my service dog and all the amazing things they can train service dogs to do. As a person with a disability who is sick and tired of being stared at and talked about all the time and just wants a chance to go grocery shopping late at night by herself or go to the movies without worrying about ticcing, I say that it isn’t my job to educate store and restaurant owners. They should be educated on the law and I have a right to go out into public without being harassed about my (future) service dog or the nature of my disability. Now, whenever I am in situations where people question me, ask if I’m okay, or do the blatant from half-way across the room stare, it is because my Tourette’s is “showing.” Those are days where I am so out of control that I am ticcing big enough that people can see, but some circumstance has dictated that I go somewhere – I most likely don’t want to be – out in public for a period of time. Those are days when I haven’t slept, or I have migraines, or I am in excruciating pain. And let me tell you, I am not nice those days. Not to my friends or family and certainly not to nosy strangers. So I don’t really take the time to educate or even explain anything. I glare people down, snap at them that I’m fine, and ignore people. Not really good practices for increasing invisible disability awareness.

People tend to think that because you have a disability or because you have a service dog (or a wheelchair, or a cane, or any other manner of assistive equipment) that it is your job to educate and inform people about your life. Truth be told though, a random stranger asking me personal details about my life with a disability is the same thing as me turning around and asking about their sex life or the date and results of their last physical. Totally rude and inappropriate, right? When you go out to run an errand or you go out with friends, you aren’t expected to disclose such personal information to everyone you encounter. So why am I? Why do people feel like because I am different, the rules of social etiquette shouldn’t apply to me?

There are days out in public I feel like I am an exhibit in a museum for people to stare and ask questions of me. It is different when I give presentations or when I post on my blog because that is me choosing to disclose personal information, and I always have the final say in how much I disclose. I can mentally prepare myself to divulge information in those situations, and sometimes it still leaves me emotionally drained to have been so personal with people I don’t know. Simply because I live a different life than most people, doesn’t give them the right to pry into my life, or give me the obligation to explain my life to everyone I encounter.

So you can see, why I am in a conundrum about how and what to disclose to people in public once I have my service dog. What it boils down to is, of course, I will answer the two mandatory questions – by law I am required to. Odds are though, I won’t tell much more, if anything, than that. Not because I feel the need for privacy, life with Tourette’s has removed me of any thread of modesty about personal information. But because if I start giving away personal information, gatekeepers will assume they can bully the next service dog team that comes by for the same information. Which is against the law.

On top of all of all of that, Tourette Syndrome really isn’t accepted as a disability (assuming people even know what it is). If somebody asks me what my disability is and I tell them, they won’t know or understand why I’m disabled and what the dog does for me (unless of course they read my blog, haha). I’d get into more trouble saying “Tourette Syndrome” than I would simply stating that I have a neurological disorder because Tourette’s is so misunderstood. In doing the best thing for me in avoiding access challenges and disputes, I inadvertently do Tourette’s awareness a disservice. If I choose to make Tourette’s awareness my ultimate goal, I will face a lot more access challenges simply due to the stereotypes and ignorance surrounding Tourette Syndrome.

Legally, it is not my job to educate anybody. Legally, if a business refuses me service it is within my right to leave and file a complaint with the Department of Justice. To the best of my understanding, the first time a business denies access to a service dog team and a complaint is filed they can face a fine up to $10,000; if it can be proved that they have denied access before or if they have face multiple offenses, that fine goes up. Recently, there was a restaurant manager who was arrested and is facing jail time of 6 months in addition to a fine for telling a man his service dog had to stay up front by the doors while he ate, therefore refusing them access. (Her case wasn’t helped much by admitting on the news that she had refused service dog teams access before and that – even after the reporter explained explicitly that was breaking the law – she would do it again without question.) Legally, if somebody refuses me access and it becomes a situation where they are going to refuse no matter what I say, I’m within my rights to call the police. Legally, I don’t have to do or prove anything aside from those two questions to gain access somewhere.

Not to say I won’t. The members of the Dogster service-dog forum talk about making up flyers or business cards with an information about their dog and the ADA on them to give out to people who are curious. I plan to carry an ADA card with me that states the federal laws that require a business to provide me access. But those are for circumstances where simply explaining the laws doesn’t get my point across. I’m not going to be one of those people who purchases a “membership” with a service dog registry to get a snazzy ID card when in reality those are scams set in place for “fakers” (a term which describes a person who calls their pet a service animal in order to bring them into public with them). I don’t need an identification card, and I’m certainly not paying money (typically upwards of $200) to get one. Of course, I would rather educate somebody about my rights rather than get into a fight over it and end up making complaints about a business.

The funny thing is that I almost look forward to access challenges with a service dog. When a person with a disability has a service dog, people look at the service dog instead of the disability. Sure, I anticipate more questions out in public regarding my right to have a service dog and my right to gain access out in public. But they will be questions regarding my service dog, not my just my disability. They won’t just be the “what’s wrong with you” questions, they won’t just be questions based on my physical and verbal tics that are noticeable, they will be about a service dog that I am choosing to take with me somewhere. The access challenges I face with a service dog have a clear-cut ending; legally, I am allowed to go anywhere any other neurotypical person is allowed to go. End story. With Tourette Syndrome, as much as I know I’m legally allowed somewhere, it’s difficult to explain to somebody with no knowledge on the matter why I’m doing what I’m doing. It looks abnormal. And even when I say I can’t control what I’m doing or that it is because of a disability, what it boils down to is that I look completely normal. And the tics I have look like I have control over them, even when I don’t. So when I begin ticcing, it’s hard to gain understanding over the unpredictability and uncontrollable nature of my Tourette’s and it is difficult to explain how a person who looks totally normal has no control over their actions or words and should still be allowed to stay somewhere, even if they are being disruptive. With the dog in tow, at least my access challenges and questions from nosy strangers will be focused on the dog and my reason for having it, as opposed to all the “strange” things I do.

Saturday, March 10, 2012

Migraine Scavenger Hunt

A few weeks ago I wrote about how I was taking my teacher certification exams, it was snowing, and I spent the weekend crafting because I wasn't feeling well.  That weekend was the gift that keeps on giving.

I won't find out for another two weeks how I did on my certification exams, and while I have no doubt that I could pass them, I am a little concerned about how my Tourette's affected my ability to perform well on the test.  They sent us to the testing rooms at 8:00 in the morning, but didn't give us the tests to begin until around 8:30; that was 30 minutes in a chair in a dead-silent room, trying to not make too big a scene.  I bounced around in my chair, shook my hair barrette out and surreptitiously tried to put it away, and cleared my throat ad infinitum.  By the time I finally got my test and was able to begin, I had already  used up all of my "sitting still" time.  I really tried to focus on the test, but by the end of the 120-questions (all of which had a paragraph or so of writing to go with them to provide the scenario for the question) I was finding that I was re-reading the questions 3 or 4 times each, trying to make my brain pay attention.  I think I was done in 45-minutes and I booked it out of there.

Part of taking the test is ensuring that you have a valid photo-ID and that it is out and present at all times.  Because I am pretty prone to misplace things, I always make sure that my license goes right back in my wallet where it came from.  Every time.  This time though, I didn't feel well; I had a migraine, both of my arms were tingly and in pain from pinched nerves, and I couldn't get out of the quiet room fast enough.  So I grabbed my ID and stuck it in my coat pocket and left.  When I got home, I took a nap, worked on some afghans, and didn't go anywhere for the rest of the weekend.

I didn't go anywhere last weekend.

Which brings me to this weekend.  In which, while cleaning out my wallet, I realized my license wasn't there.  If I were a person whose brain didn't take vacations once in a while, it might be easy to find.  I know it wasn't stolen; namely because my wallet is attached to my keys and it hasn't been out of my sight in weeks, nor have I been anywhere that would have given it the opportunity to be taken.  So I'm left, trying to retrace the steps of migraine-Katherine; a totally different entity than Katherine.  Migraine-brain does weird things to me; even when I have no pain symptoms or light sensitivity (or any of the other lovely things my migraines cause) I can tell when I have a migraine because I have what I have dubbed "migraine-brain".  My thoughts become jumbled up, I experience aphasia, and I do things that don't make sense, except to migraine-Katherine.  Want proof?  See the previous post in which I thought it was a good idea to take my all of my regular medications and go to sleep after experiencing a concussion.  Concussion-brain and migraine-brain are not so different.

I have looked in all the logical places; and the illogical ones.  I have spent the day crawling around on the floor with a flashlight and moving furniture on the hunch that my cat found it and batted it around until it lodged under something.  And now I'm icing my bad arm because it couldn't handle the pressure from leaning on it all morning.  Truthfully, that day I was so checked out that, as my mother helpfully suggested, I could have put it into the freezer and thought that was a logical place for safe-keeping.

To complicate matters, I live in Washington but have a California's driver's license because that is where my parents live and I am still a dependent at school.  And of course California requires that you go in person to replace a lost license.  So I'm going to keep looking this weekend, hoping and praying that my license decides to show up.  Otherwise I'm going to be calling the California DMV this week hoping I get somebody sympathetic on the phone who can find a way to keep me driving legally until I return to California in a month.

Any good kismet you can send this way would be greatly appreciated.

Somebody must have been sending some seriously good kismet this way.  :)  I did not find my license, but I had what has to have been the most pleasant conversation with a DMV employee ever; they are going to mail a temporary license to my apartment and when I go back to California I have to go get my license replaced.  Yay!  And I found out tonight I passed my teacher certification exams which means I am officially done with exams and ready for certification in May!

All in all a good day.

Tuesday, March 6, 2012

Medication Exploration

One of the many many perks of living with Tourette Syndrome is the copious amounts of medications that doctors want you to try. I have severe reactions to medications, if there is a side effect listed I will get it. Oh? Only 5% of people on this medication get that random, totally unheard of side effect? Don’t worry, I’ll get it. I have tried many medications, all to no avail.

When I was originally diagnosed – with Chronic Tic Disorder – they put me on Tenex, which is a anti-hypertensive (blood pressure medication). They did this because I was also on anti-anxiety medication at the time and anything else they prescribed me would interfere with the medication. I stayed on Tenex for a few months, no bad side effects, but no improvements and so the next time I went to the doctor they sent me to a psychiatrist to try and work around the anti-anxiety medications and find a solution for my tics.

There is a reason I dislike and distrust doctors, and that man was the catalyst. He completely blew off anything the doctors had said about my Tourette’s, decided my tics were a manifestation of severe anxiety and instructed me to double the dose of anti-anxiety meds I was on. In addition to that, every time I saw him I had to get on a scale so he could “document how the medication was affecting me”. Um… the pills are making me fat… do you really need documentation of that? In 6 months of anti-anxiety pills I gained 50 pounds.

As if that weren’t enough to send me running for the hills, every time I saw him we had the following conversation:

          Doctor: “So, do you have a boyfriend?”
          Me: “No.”
          Doctor: “Have you ever had a boyfriend?”
          Me: “No.”
          Doctor: “Why do you think that is?”
          Me: “…”

I saw him a total of three times.

After I got myself off of the anti-anxiety meds it opened a whole new world of poisons medications to try. They put me on Clonidine next, another anti-hypertensive, this time in a snazzy patch-form. I told nosy people that I was trying to quit smoking. That lasted a month or so until my next visit when the tech became very alarmed at all of the red spots on my shoulders and chest from where I had put the patches. Oops. It took weeks after getting off the medication for the spots to all completely fade and months until I could go out in the sun without getting white spots all over from where the patches had been.

Next, we tried some anti-psychotics. Orap did nothing except make me gain more weight and Risperdal knocked me out on the couch for 48-hours with the worst migraine I have ever had. The Risperdal was the last straw. I think I took 2 pills total (maybe totaling a milligram of the medication) before I refused to take anything else. They continued bouncing me around to some other doctors before put my foot down and refused to talk to doctors as well.

Until this past year.

Somebody asked me in a recent presentation I gave, what made me decide to pursue receiving a service dog. It was the same thing that prompted me to get under a doctor’s care again for the first time in four years. Plain and simple, I hurt myself. Badly. In June 2011, I had a monstrous tic attack that wouldn’t have been so bad, had I not bashed my head into an end table near the couch. I saw stars, literally. I live by myself (for a lot of Tourette’s-related reasons) and the only person staying in Spokane over the summer that I would have felt comfortable calling up at 10:30 at night to take me to the ER was out of town that week. I had a complete hysterical meltdown for about an hour, looked up concussion symptoms on the internet, took a shower (and all of my medication) and passed out. Not the smartest move.

Now, of course I can admit that what I did was stupid and dangerous. I had a full-blown concussion; my only-saving grace was that I didn’t lose consciousness. Dilated pupils? Check. Dizziness? Check. Nausea? Check. Confusion? Check. Splitting head-ache? Check. Like I said, probably not the best move for me to self-medicate and go to sleep. I had concussion-like symptoms for probably a month after; severe aphasia (inability to recall words), general confusion (stuff like putting my keys or cell phone somewhere and then promptly forgetting where they were), a chronic, month-long migraine coupled with severe light-sensitivity, and dizziness that endured about a week after the concussion.

Once I had a brain that was somewhat functional again I was scared. And rightly so. Not only had I acted completely idiotically in regards to my own health, but there was a good chance of that happening again. And there was a good chance it could happen somewhere in public. And what was I supposed to do when I suddenly began head-banging so bad I couldn’t walk straight making me look intoxicated, when I knocked myself to the ground at school and concussed myself, or when I started smashing my fists into my forehead for no apparent reason. I’d be in serious trouble if I did that in public. I’ve heard stories of people being forcibly removed from places for tics less drastic than that and I was scared that if I hurt myself in public I wouldn’t have the ability to explain that I needed help. Or that tics that aren’t that severe might look really bad and I would end up in a situation trying to convince somebody I was fine and didn’t need medical help (some of my tics look like – to somebody without much experience in neurological disorders – that I am about to seize, or am having a seizure).

The dog will assist in these situations, but I was also curious what a doctor who specialized in Tourette Syndrome might have to say about medication options that could decrease the likelihood of instances like I just described happening.

Enter Topamax. A anti-convulsant; a medication for seizures. Also affectionally called Dopeymax. Which causes a side-effect that my neurologist referred to as a “Topa-dopa” or the “Topa-coma”. Kinda starts sending up red flags. But I tried it. The neurologist assured me that only about 5% of people get that side effect. Two-weeks into taking the medication I began to forget things, where I had put my cell phone, errands I needed to run, etc. After 3-weeks, not only was I experiencing aphasia, I began to substitute similar words in for words I had suddenly forgotten. I was calling a “horse” a “dog”.  I was calling my students by the wrong names and couldn't carry on a simple conversation without getting my words jumbled up.  I was making mistakes at work, forgetting words and phrases I need to use while tutoring. And then I began dropping syllables out of words; 3-syllable words became 2-syllable words. I’d start a word and never finish it while talking. I was stupid.

I stopped talking the pills within a month and on my next visit to the neurologist he suggested I try Keppra, another anti-convulsant. This one he said, showed promise in studies that one doctor had done. Once he started telling me about the studies though, I was a little skeptical; there were only two studies done on this medication in use for tic disorders – one study was not so successful, one kind of was – and there were less than 40 participants in both studies combined. The medication was so new for trying to treat Tourette Syndrome, that there were no dosage recommendations. Just to take the same dose an adult with epilepsy would take. It’s well tolerated though, the neurologist told me. A week on Keppra and I was so dizzy I would almost be falling over while walking and I was so nauseous I didn’t want to eat. Every time I increased the dosage, trying to get to 1000mg, I would feel sick for a week. When I got to 750mg though, that never-ending nausea didn’t go away. I was so tired that I would hit snooze for an hour some mornings trying to wake up. I couldn’t do it anymore; and the fact that my tics were as present as ever didn’t really help matters. I got off the medication about a month ago and I am finally, as late as this past week, feeling close to my old self.

I cleaned my apartment this weekend after having multiple weekends in a row where just going to the grocery store or to dinner with a friend would wipe me out. I cooked – something I love to do, but haven’t in a while – a lot of meals to get me through the week and I really got busy crocheting. A month after stopping medication I finally feel like it is completely out of my system. My head feels less fuzzy and I am able to wake up in the mornings somewhat rested, as opposed to passing out at 9 o’clock at night, waking up at 7, and feeling like I didn’t get any sleep.

I’ve always cautioned my family that I would rather tic and be clear headed than be on medication that made me fuzzy and drowsy, even if it helped my tics. Thankfully, I have never been in a situation where I have had to choose between the two. People who aren’t really on board with the service dog (or service dogs for anybody for that matter) ask things like, why don’t you just take medication to fix it?  Or why don’t people with mobility problems just use a cane instead of a dog? Even if they told me that medication xyz would “fix” my Tourette’s; I would be hesitant to try it. There is a medication that is used to treat Huntington’s Chorea that is currently being explored with uses in tic disorders caused by other medications and Tourette Syndrome. I am not going to try it though – the medication decreases production of seratonin and dopamine in the brain and has a very high rate of depression and suicide on the medication. I know what it is like to be depressed; and I am not willing to risk causing depression on the chance that this medication would work. It isn’t worth it to me.  Continuing to put medication after medication into my body and subjecting myself to months worth of side effects isn't worth it.

The problem with our society is that we view disabilities as something that needs “fixing”. That because you don’t fit the societal definition of “normal” you need to adapt to fit in. I’m not saying that everybody has to change their way of doing things to fit mine; or even that people should do anything to make life easier for me. But you do have to accept me; disability and all. You don’t get to discriminate against me because I have a disability and you don’t. I have a right to the same things as any other able-bodied person. Just because I’m disruptive in a restaurant, doesn’t mean I can be seated away from the rest of the customers. I don’t have to sit in handicapped seating at a movie theater; I have a right to sit with everybody else and tic. Legally, they have to accommodate my future service dog on an airplane, even though it’s going to be a big dog. That isn’t getting special treatment; that’s adapting the way things are done so I can do the same things a neurotypical person can do. If you don’t have to change your life to fit everyone else’s simply because you had the good fortune of being born with a brain and body that worked, then I shouldn’t have to either. A service dog is not a last resort. I am within my right to decline anymore medical treatment in lieu of a service dog. That would have been my right 5 medications ago. The only medical condition in which a doctor has to approve a service dog (which is very different than an Emotional Support animal) is visual impairment; there is a degree to which you need to be affected after medical treatment to qualify you for a service dog. It is the only disability that you have to have already turned to medical treatment to fix before qualifying for a service dog.  Thankfully, the way the laws are written now, nobody can tell me it isn't within my right to get a dog because I'm not "disabled enough" or because I should have exhausted all medication options and surgeries first.  Nobody can tell me to put anymore medication in my body, and my right to go out into public ticcing and with a service dog is not contingent upon my medications. 

I don’t need "fixing" anymore than you do.

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.