Monday, November 19, 2012

Giving Thanks

In the spirit of this week, I wanted to spend some time focusing on what I am thankful for.  It is so easy when living with a disability, to get bogged down in the day-to-day doldrums.  To give in and let the disability win.  And I hate that part of this life; I hate that sometimes the Tourette's wins and dictates how I feel about my life.  Don't get me wrong; this sucks.  I wouldn't give it to anybody.  But, I am thankful that I can see (with contacts), that I can hear and talk and walk. 

Even when the tics make these things hard; I am still capable of doing them.  Could I conceivably perceive a time when I might have to resort to adaptive equipment to walk? Sure.  If my tics tried to take my legs away again, and it was beyond the scope of Owen's help, I would (begrudgingly) use adaptive equipment.  Even when my tics make my eyes squint shut or make me blink so rapidly that I can't see straight, I am still capable of sight.  Eventually the tics will subside and I will be able to see. 

And yes, my tics have even taken away my ability to speak.  I stutter due to the palalia and I have chronic aphasia that varies in severity.  Some days I speak perfectly fine, and other times the words get so jumbled up in my brain that they come out in the wrong order or I use the wrong words.  Or I lose vocabulary... It's good fun.  But even when that happens, I can still write.  I get teased about being too verbose on my blog, but it's because no matter what my brain is making me do with regards to verbal communication, I can always type and my thoughts come out just the way I want them.  Now if only I had a computer that could keep up with my typing instead of eating the things I write due to hard-drive malfunctions...

I am unbelievably thankful for all of the people who donated to help me get Owen.  Without your help, I wouldn't be about to embark on this amazing and incredible journey.  I still can't fathom the generosity of perfect strangers.  I am a cynic by nature; a pessimist if you will.  I've seen the worst side of humanity due to my disability.  I am slow to trust people and quick to end a relationship if I think I can't trust somebody anymore.  I am cautious in public because I don't trust how anybody is going to react to me.  And yet, because of my disability, I have seen the very best of people.  I have had people I had no relationship to, no friends in common with, nothing, donate to help me get Owen.  There was a family in contact with Heeling Allies about getting a dog for their disabled adult son and when Heeling Allies told them they didn't feel like they were the right fit, this family donated $250 to help me get my dog.  Even though they were going to have to hire a private trainer where they lived to train a service dog for their son, they still donated to help me.

There have been people my mother knows through online forums who we have never met in person who have donated, collectively, hundreds of dollars.

There have been complete strangers who we don't know donate.

Teachers, with very little money themselves, have donated to help me get Owen.

I was hesitant a year ago to fundraise and ask for money; I didn't like having to ask for something, especially in so public a manner.  But by doing so, I truly have seen the very best that humanity has to offer.

I am so thankful for my friends.  I don't think you could understand what it means to be the friend of a Touretter unless you are one.  It isn't easy.

Me?  I'm used to the stares in public and the comments and everything that comes with having Tourette's.  But somebody who is healthy having to deal with it too?  That's asking a lot.

My friends could care less when people stare at me out in public or when people laugh or snicker or say something.  They indignantly tell me that I should hit the person that is standing too close to me in line because I shouldn't have to struggle to mask my tics just because somebody has no concept of personal space.  They don't mind when I make loud noises in a quiet place.

My friends position themselves on the right side of my body when walking or sitting somewhere.  They do so, fully aware of the fact that by sitting or standing there, they will get hit.  They do this so that I don't have to worry about hitting a stranger.

They ask me where I want to sit when we go to a movie theater.  Sometimes this means sitting next to the asshole who won't stop talking the whole movie so that I can sit in the aisle.

They laughingly tell me that yes I did hit them when we were out somewhere and that is why they make sure to sit next to me.

They hear me bitch about the stuff I have to deal with, and even though they have no context for understanding my disability, they listen.

They stand up for me when somebody says something about me that they think is rude.

They look out for me; my friends have vehemently argued with me that I need to take a break, even when I am adamant that I am fine.  They have covered for me at work so that I could take breaks when I needed them, even when it meant giving up some time off of their own break.

They help me keep track of my schedule when my brain refuses to remember what day it is.  They laugh when I argue with them about what day my brain thinks it is, and text me reminders if I have to do something that is out of my normal schedule.  They remind me when assignments are due and keep a lookout for me when my brain decides to check out for a few days.

They pick me up when they want to go out at night, because they know I won't drive if I'm tired.  They drop me off at home without once expecting anything in return.  And they do this without even asking.

They laugh and move things out of my way that I might knock over.  They ignore the beeps and squeaks and snorts in a conversation.  They don't see the tremors and eye rolling and head shaking.  They accept it as part of who I am, and they don't hear or see the tics.

They never say that they are frustrated with me or embarrassed to be out with me.  They simply don't see it anymore.  They do what I wish everyone would; acknowledge that I have Tourette's, and move on.

And of course, I am unendingly thankful for Heeling Allies.   I don't know if they will ever realize what it meant to me, a year and a half ago, to search "service dogs for Tourette Syndrome" and stumble upon their website.  They have given me my hope back; hope for a normal life.  Hope to be free of this chronic exhaustion and pain and fear of being in public. 

Through Heeling Allies, I have met some amazing people who have received, or are about to recieve, a Heeling Allies dog.  People who I know, beyond a shadow of a doubt, I will remain in contact with for years to come.  (If you want to read about somebody who has been partnered with their Heeling Allies dog for a few months now, check out With Ben).

I am thankful for the opportunity I have been given.  I have been given the chance to walk with a service dog, to hold my head up high and once again feel confident and safe with my body.  I have met some amazing people throughout this journey, and I know I will meet a lot more.  I have found my voice with regards to Tourette Syndrome awareness; a few years ago I was ashamed to admit what I have.  Now I literally have the awareness ribbon tattooed on my body.  It will always be a part of who I am.  I am confident when speaking to groups of people about my life, and I sincerely hope that by doing so I am helping to change somebody's perspective on Tourette's.

And I hope that in a year from now I can be writing about how I am thankful for Owen; thankful for the new life he has given me; and maybe even thankful that I have a "big-girl" job.

Friday, November 9, 2012

A Week in the life of a Touretter

I imposed an interesting experiment on myself this past week.  I didn't go to any Tourette's forums, facebook pages, or groups.  I didn't have anything to do with the online community that encompasses the people dealing with Tourette Syndrome.  It had become such a quick thing that when I checked my email, I would check my facebook and do a fast cruise through all the groups and whatnot I'm a member of.  Sometimes frequenting each group more than once a day.

I very rarely posted anything unless I saw a post that I felt I had a good answer to, or something that had gone unanswered for a little while.  But I did read everything.

And I got sick of reading stuff from parents.  I got tired of reading how they were embarrassed when their child was saying obscenities out in public and people were looking at them like they were a bad parent.  I didn't want to read anymore stories about educators failing kids with Tourette's or parents not knowing what to do or ask for.  And I'm especially tired of having other people's parents give me medical advice.

Newsflash; I already have two parents.

When I post things on the groups about myself, I'm looking for support or ideas from other Touretters on how they deal with something similar.  I'm not looking for a bunch of moms to urge me to go to a doctor or to seek medical treatment.  And I think I've written enough here about why medical interventions are not an option I'm willing to consider right now.

But that's what happens when you post in these groups.  The average age of people with Tourette's is high school aged, but the majority of members are moms of children with Tourette Syndrome and the occasional significant other of a Touretter.  And that's not the group I'm looking for advice from.  I make a go of it on my own for the most part, but every now and again it's nice to bounce ideas off of another adult who is living through what you are.  To say, has anybody else ever had to deal with this?  I don't want pity or sympathy, and I'm certainly not going to give anybody pity or sympathy.

I can't stand reading these parents freaking out because there was a glitch and all of their friends saw what they posted about having a child with Tourette's and up until now it was a "secret".  I think you all know my thoughts on keeping something like this a secret.

It is not something to be ashamed about and I refuse to let anybody make me feel like it is.  And I think parents who don't embrace this attitude will end up doing their children a disservice.

And while I would never say anything, because I try to be nice online, I can't stand reading posts from mild Touretters about how hard their lives are and I especially can't stand it when they all start talking about their waning periods (when their tics get better).

When I give presentations (typically in education classes at my university) I start out with giving the clinical definition of Tourette's and I always say:

To be diagnosed with Tourette Syndrome you have to have motor and vocal tics for more than 12 months.  You can never go 4 weeks without ticcing.  To put that in perspective, since I was diagnosed I have never gone 4 weeks without ticcing... I have never gone 4 days without ticcing. I'm doubtful I have gone 4 waking hours without ticcing. And there are some days where I don't go 4 minutes without my brain trying to make some part of my body tic.

Trust me, I don't want to hear about how you haven't ticced all week.

I realized the other day that while all of my posts are about living with Tourette Syndrome, in an effort to remain upbeat about my disability, I forewent actually talking about my day to day life with Tourette's.  So here it is; a short glimpse into my life with Tourette's.

The other night I posted this on facebook.

"Ugh. One of the worst feelings in the world is your brain desperately sending tic messages to your body, but knowing if you tic it will cause severe pain (on top of the pain you are already in). For you neurotypical people that would be like having poison ivy somewhere on your body but not being allowed to scratch it. I can't wait to have 85 pounds of Labrador laying on top of me forcing my body to chill out."

And I got a lot of likes and positive comments and it surprised me because in that moment I was fighting my brain for control over my body and over my anxiety.  That wasn't meant to be a happy post; it was me griping about my night.  I was literally lying on the couch in tears because I was in so much pain (from my tics) that I couldn't stand the thought of ticcing anymore but my brain was trying its damnedest to make me tic.  And yeah, I was able to stop the tics from happening, but at what cost?  My anxiety went completely out of control as I was trying to stop myself from ticcing because I was anxious about the pain that would be caused if I did tic.  My anxiety is already running high because of everything that is going to happen in the next month (literally, in a month, I will be done with the semester... yikes).  When my anxiety is up, it doesn't take much to push it over the edge.

I have been rocking the double-wrist splint since I got back from Arizona due to the carpal tunnel syndrome symptoms in both hands.  The braces help the numbness and tingling, and also force my hands to not tic so I can't make the problem worse.

I've been clicking my tongue everywhere I go.

My knees buckle without warning when I'm walking, making me stumble.

I wrenched my back so hard in class earlier this week that it still hurts.

I head bang pretty much throughout the entire day, especially in class, which is doing wonders for my already poor balance.

I have to walk around with one arm outstretched to keep me balanced and even then I stumble and trip.  When I'm standing still I wobble back and forth, making it look like I'm about to fall over.  So basically, I walk around looking intoxicated all day.  Awesome.

And in Safeway tonight, I had an anxiety surge as I got boxed in by other people and carts trying to check out because I was petrified my brain would win and I would tic into somebody or something.

This is what the life of a Touretter is like, and that's barely the tip of the iceberg.  This is what I haven't been putting on my blog for fear that it makes me seem whiny or ungrateful.  But there it is, a small window into my life with Tourette's.

So what did I learn from my experiment? That I'm much happier without frequenting these groups.  I don't need the added stress from dozens of other people's lives; I have plenty of my own.  So for now, I'm staying off the facebook groups.

I can only anticipate that my anxiety will get worse until Darcie and Owen arrive (hopefully soon!), but hopefully I can keep it as low as possible in the interim.  Right now, I'm pretending like I'm not getting on an airplane next weekend; because by now you all know how much I hate flying. : )

Saturday, November 3, 2012

Offensive 2.0

If you've been hanging out here for a while, you may recall an incident a few months ago (March 27 to be exact) in which I was shocked to see one of my favorite characters on one of my favorite television shows make fun of my disability.

I emailed CBS.

And I waited... and waited.  And...


They couldn't even be bothered to send a generic, "I'm sorry you were offended," apology.  Because that would have required someone somewhere to admit to guilt.  To admit that they had participated in the exploitation of a disability for a few cheap laughs.

Apparently they have not gotten the message.  Because this week on Elementary, a show I have been following and liking up until now, they did it again.

Made fun of Tourette Syndrome for absolutely no reason.

And I'm sick of it.  Sick of being the brunt of somebody else's joke.  Sick of being exploited because of a disability.

Tourette Syndrome does not give me an excuse to be, nor does it make me, rude.  And for some reason, CBS is convinced that having Tourette's means that I'm rude and cannot control what comes out of my mouth.  And again, I would like to point out that Tourette Syndrome means I have uncontrollable tics; it does not mean that I lack a verbal filter or am rude.  And I am tired of seeing this misinformation portrayed on my television for a quick joke.

I want you to try something the next time you hear somebody making fun of Tourette's either on the television, in a movie, in person, whatever.  Swap out the word "Tourette's" with any other minority group.  Swap in a disability if you want.  Does it sound okay if instead the butt of the joke is Autism, Down Syndrome, or hearing impairment. Does it sound okay to make fun of somebody who can't see, hear, or walk?  Somebody who has different religious beliefs than you do or whose skin is a different color?  Somebody whose brain, like mine, doesn't work quite right?

Oh.  It doesn't.  Just checking.

What I have is NOT funny.  It is not a joke.  And I dare anybody who thinks it is to live a day in my shoes.  I'll gladly trade for a day.

As I said about 8 months ago, these things do not hurt my feelings.  I could really care less; my day isn't going to be affected because one asshole writer thinks it's funny to make a joke about living with Tourette Syndrome.  Whatever.  What comes around goes around.

But they do make my life harder to live.  They make it acceptable to make fun of a neurological disability (I've done it now... dropped the "D-Word").  Jokes like this make it okay for the general public to make jokes about it too.  And that is what I do not find okay.  That a television show is - without any regard for the people who their jokes are affecting - influencing a group of people.  That they are perpetrating the untrue notion that it is okay to make fun of a disability group.

Because that is what I am.  A person with a disability.  And when you make a joke about Tourette Syndrome, you are making a joke about a disability.  Something that I, and many others, have to fight with every day just to be "normal".  Just to be accepted by everyone else.  And for every presentation I give, I reach 20 people.  I don't even want to think of how many people watched Elementary this week.

I have to be direct and forceful when I give presentations.  I took off my wrist braces this week in a class so that they could see how far back my wrists bend when I tic.  And I saw a few of them attempting to twist their hands like mine, and then wincing.  They winced again when I described how I wake up in the middle of the night to endless charlie horses in my legs.  How I have pinched nerves.  When I demonstrated how I walk on my toe joints and how I turn my ankle inside and walk on the outside of my foot.

I don't do these things to be mean or to garner pity.  I do these things to counteract what the media has done.  I do these things to put a picture with the phrase "Tourette Syndrome".  I am brutally honest and open about my life; I want people to realize that this is not a laughing matter.  I want them to realize that everyday of my life is a struggle that the majority of the population will never know.  I want them to have a small glimpse into the everyday struggle I go through, so that the next time they hear the phrase "Tourette's", they think of me instead of some senseless joke.

And if that isn't enough to convince you, think about the 6- and 7-year-olds who are just finding out what Tourette Syndrome is and what it means to live this life.  Think about how you would feel if somebody made fun of the one thing you were ashamed about on television.  Now imagine you are in middle or high school and this happens to you.

Why do we need to make fun of a disability?  Are the writers at CBS that strapped for comedic material?  Or am I supposed to feel thankful because they linked my disability with a very intelligent, albiet wacky, character?  I will not be as quiet this time.  I am sick of this senseless attitude continuing and I will see a stop to it in my lifetime.

~ ~ ~ ~ ~

UPDATED to include my letter to CBS:

On this week's episode of Elementary, there was a joke made in regards to the character Sherlock Holmes having a "form of Tourette's".

As a person with severe Tourette Syndrome, I am once again, shocked that this network is exploiting a disability group for a few quick laughs.

In case you are unaware of what Tourette Syndrome is; allow me to explain it.  It is a neurological disability in which my brain cannot control my motor movement or vocalizations.  I have repetitive tics that occur at all hours of the day and in every situation.  They have destroyed my body and cause severe, chronic, pain.  I have to fight everyday to be accepted by the general public; trust me, a grown woman who looks "normal" is not accepted when she starts hitting herself, squawking, limping, or any of the other dozes of things my brain tells my body to do.

Jokes, like the one on this show, continue to perpetrate the notion that Tourette Syndrome is something funny.  Something that it is okay to joke about.  Just because I have Tourette Syndrome does not make me, nor give me an excuse to be, rude.  By perpetrating this idea, you are making the everyday lives of people living with this misunderstood disorder more difficult.

I look forward to your response; however, I am not holding my breath.

I contacted CBS about this exact same problem in March of this year, regarding NCIS.

You can read more about my thoughts on both incidences at my blog,

And here: