Un-Disabled

Last night I watched Chicago Hope. It’s a medical drama, I think. This episode was about a hospital, and I assume they’re all about a hospital, so let’s go with calling it a medical drama. In this episode René Auberjonois, the actor who starred as Father Mulcahy on the TV show M*A*S*H, played a surgeon with Tourette Syndrome. The episode, named Oh What a Piece of Work Is Man was recommended on Facebook as a realistic and sympathetic portrayal of Tourette.

What do you know about René Auberjonois? I spent some time with him on Google, because other than his role playing a non-judgmental priest, I know nothing about him at all. In fact, when my Chicago Hope episode started, a man walked into the scene honking and doing a little skip-step tap dance thing and touching doorknobs three times, I thought “that isn’t Father Mulcahy, who’s this dude.” I didn’t recognize him without his clergy collar.

Here’s something most people don’t know about me. In addition to having Tourette Syndrome, I have a mildish case of Prosopagnosia (face blindness). I frequently can’t recognize people I already know, especially out of context. On Monday at work, Martha said “Hey Jeff, I saw you at the Christmas parade on Friday. I thought you looked right at me, but I guess you didn’t see me.”

I’m pretty sure I saw her. There was a moment during the night, standing outside of Sweeet, Gettysburg’s retro candy shop, scanning the crowd looking for my in-laws, I thought “Hmm, that woman over there looks familiar.” My very first post on this blog is a humor piece about Prosopagnosia 

The Prosopagnosia and the Tourette aren’t related. I’ve done countless internet searches on the two disorders, and I’ve never found a connection. But René Auberjonois, every single picture I see of him, I can’t conjure up Father Mulcahy.

FULL STOP

Oops, I was just looking at a picture of Father Mulcahy on Wikipedia, and I noticed that the actor’s name is William Christopher. René Auberjonois was in the movie M*A*S*H. Not the same guy. So in addition to Tourette Syndrome and Prosopagnosia, there’s clearly something else wrong with me.

Next topic: The point of all this is while watching René Auberjonois tic away with Tourette, fidgeting, poking, twisting, knocking and even screaming Bitch, Bitch, Bitch in a fancy restaurant, I started getting a weird feeling. Wow, this guy has Tourette. Suddenly, I felt like a fraud. Is it possible to be not disabled enough?

In the TV show House (another medical drama), Dr. House, who walks with a cane, finds his handicapped parking spot has been transferred to another doctor, one in a wheelchair. The subplot throughout the show is ‘who’s more disabled?’ Is it the guy who limps everywhere, clearly in pain, or the woman who can’t use a normal bathroom stall or walk with her colleagues to the next floor because of her wheelchair? This subplot was used for comic relief. Two adults arguing, trying to prove that their life is worse than the other’s.

I spend considerable time worrying about Tourette Syndrome. There are my hallmark Tourette tics, grunting, scratching, eye-rolling and a dozen other movements and sounds that come and go. All in all, they’re pretty innocuous. Many people swear they’ve never noticed them. But that doesn’t stop me from bumming out. Sitting in my office, I’ll realize I’m grunting, suddenly worried that Sara, four feet away on the other side of a wall, can hear me. Or while driving, repeatedly rolling my eyes, worried that maybe I’m not giving enough visual attention to the road. Every time I catch myself, it reminds me of my differences. And then I dwell on it.

There’s a medical buzzword in the Tourette community, comorbidity. Comorbid conditions are an extensive list of additional mental health conditions that frequently accompany Tourette Syndrome. OCD, anxiety, substance abuse, depression all make the list. If you read this blog, you’ve read about each of these here. When I write about Tourette Syndrome, I’m writing about the tics AND the obsessive thoughts AND social anxiety AND the years I wasted drinking AND the days I missed work depressed.

For whatever reason, all of this feels behind me right now. For the past two months (with a brief hiccup over Thanksgiving weekend) I haven’t felt mentally ill. Yes, I’m still ticcing, but less than normal, and I’ve already suggested that normal isn’t that bad. It’s my reaction to the tics that is the problem. The depression, anxiety and obsessions churn in a feedback loop with Tourette—fueling more tics, which fuels the comorbids. For the first time in a decade, I’m not feeling this.

Watching Chicago Hope reminded me that I don’t have it so bad. I don’t get ostracized because of my tics, thrown out of restaurants, kicked out of movie theaters, I don’t scream Bitch, Bitch, Bitch at a young family walking down the street. And now with my absent comorbid conditions, I’m feeling a little lost. Part of my identity is missing right now, the disabled part. It’s something I’ve grown accustomed to and I feel a little naked without it.

It seems a little scary at first, but I think I can get used to this.

15 thoughts on “Un-Disabled

  1. I’m going to focus on the word comorbidity. Who comes up with these words? I mean really. Who wins being worse: geriatric pregnancy or comorbidity?
    Enjoyed the post, all of it.
    Now what are you going to do with this new found you? That’s something else! 🥳Breathe easily. Take your time. Enjoy the moment.

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  2. Glad to hear your comorbid conditions are giving you a bit of a break. There’s a high rate of comorbid conditions with autism as well – ADHD, anxiety and depression I think are the big three. I am glad I know about comorbid conditions so I can keep a keen eye on the kids, focusing on the latter two. But like you, they seem to be feeling and doing well right now. I’ll take it.

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    • Well, I know that autism and tourette are comorbid with each other. How do they decide which is the primary condition? I guess the one that’s most disruptive in your life. I’m guessing that with autism, the comorbid conditions are rarely the biggest problem. With TS, based on chatter on the facebook page, they often are.

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  3. I totally relate to this. time’s where my TS isn’t making itself aggressively known are so rare that it’s almost hard to enjoy them correctly. If anything, this allows you to move into a different phase with the disorder though. A phase where you can reflect upon how many things were effected by those comorbid illnesses so in the case of a return, you are able to combat them with the knowledge that it isn’t you, it’s just what you have.

    Even when it isn’t bad, it’s still there for me. It still holds a place in my mind, and maybe it’s kind of for comfort because I have nothing else to fill it with. The practice of being honest about my TS has at least shifted that space to look a lot more positive than it did in the past.

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  4. I understand worrying about the loss of symptoms. We spend so much time focusing on them when they’re there that it’s an odd sense of loss when they’re gone. I have this habit of visualizing a “dream life” to help get me to sleep. Oddly I don’t visualize relationships (e.g. I’m not married to a hunky celebrity) but instead focus on jobs, houses, etc. However the Laura in these visuals hasn’t been in an accident so therefore she can hear. And last week when I was visualizing this dream Laura I realized she could hear and it didn’t feel right. How odd. I guess I’ve accepted my hearing loss and made it apart of me! Congratulations on feeling like you’ve got things manageable.

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    • I’m glad you validate this feeling. I was thinking I’m weird. Over time our personal story we tell ourselves includes the disabilities, and without them, we might feel great, but we also feel ‘off,’ I’ve been envisioning the future me for a long time. I suddenly realize that person is almost certainly going to have worse hearing than I already have. It has shaken up my vision significantly.

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  5. Kudos to your openness. You are a neurology wonder. There’s this children’s book called Wonder by RJ Palacio that I love, because it’s not weird, it’s a wonder. So glad the neurochemicals are settling these days.
    Comorbidity = the bag of labels that come with the first one. Doctors are such dweebs.

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    • At this point, my openness i complete. I’ve been blogging about this stuff for 6 years. It’s remarkable that I have anything left to say. Doctors make up five syllable words to make the rest of us feel stupid. Prosopagnosia – see? Another one.

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