Comorbid, Mor-problems

There are strong correlations between instances of Tourette Syndrome, OCD, and ADHD. They are common comorbidities, to use the technical term. I always kind of figured I had TS with a dash of OCD and a sprinkle of ADHD. I’d say waffley things like “some ADHD-like traits.” I went through a journey toward the end of college of pursuing an ADHD diagnosis and basically just had pills thrown at me. I spent the years since wondering whether I truly had ADHD.

Tonight I am convinced that I do.

I started a class this week, my first as a student in a year and a half – long enough for me to forget how unpleasant the whole “homework” process is for me. Right now, as bedtime approaches, and tomorrow’s assignment is only halfway done, what am I doing…?

ADHD is so much more than just procrastination. And people whose brains don’t work like this don’t get it. I want to work. I want to get this done. I want to print it off and go to bed. I want to do those things more than anything.

But when I open up my textbook?

I can’t. I can’t focus on the words on the page. I run my eyes over them repeatedly and no meaning reaches my brain. I reread the essay prompt to apply it to the text and can’t focus on the academic language.

I’m lucky enough to have functional coping skills. My brain will turn on once I reach the “last minute” (I do not have control of when ADHD decides that may be). Once that happens, I can crank work out quickly. It feels like a sloppy, last-ditch effort, but lucky again, I always do well. (The fact that this strategy has never backfired makes it impossible to combat. ADHD says, “see, this system works great. Why change it?”)

My ADHD looks like procrastination but it’s not willful. If you want to hang out with me and I’m holed up writing a paper that’s due tomorrow, please believe that I tried to write it earlier. Please believe that it isn’t personal – neither a personal affront to you, nor a testament to any personal lack of character on my end. I tried to write it and I couldn’t focus on the words on the page, the words on the screen, the words in my brain. None of them turned into ideas. None of them meant anything.

Please don’t judge my character based on my disability*. I’m not a lazy or careless person. How often have I tried so hard to write that big paper in advance, to start the project ahead of time, to otherwise free up my schedule near the due date? The nights I spend trying to type up a little essay, so humiliated and defeated that I can’t accomplish the simple task, and end up crying in self-loathing because I wasted hours and accomplished nothing – those are some of my darkest times. If there was a way to make them go away**, don’t you believe that I would?

And I have it pretty good, as far as ADHD goes. I’ve always earned good grades. My disability is not obvious to other people. Yet it teases and tortures me through every class assignment, every IEP I write, every strategy I research, every book I read, every extra little thing that comes up.

This post is longer than what’s left to do on my current assignment. Isn’t that a pleasant little irony? I figure if my brain’s not ready to do that yet, may as well type this up in the moment. Give an authentic little taste.

Do you struggle with focus or attention? What are your coping mechanisms? Have you tried natural remedies? What do you recommend?

*That’s ableism. Discrimination.
**I’ll chat about my medication journey another time. Spoiler alert: it was not a positive experience.

(And, a disclaimer, of course, that this is my personal experience. I can’t speak for anyone else.)

Troubling

I was at a bar with friends tonight (a married couple) and this extremely intoxicated man would not leave us alone. He was being “friendly,” sure, but his flavor of friendliness included incessant touching (toward the whole party), yelling (in general), pickup lines (mostly directed at me), and inappropriate questions (ditto). I repeatedly shied away and said “no” and “that’s none of your business,” squirming, wishing my friends would make him go away. He made me extremely uncomfortable. He wandered through the bar but kept wandering back. When he sneaked up behind me and reached for my shoulder, I thundered in my sternest teacher voice,

Don’t touch me. I’m serious. Leave me alone.

He gaped, heads turned, and he left us alone from there (we also left soon thereafter). At first I felt proud that I’d effectively gotten rid of the creep, but the more I sit with it, the sadder I become. I shouldn’t have to yell at somebody to respect my personal space and desire to not be creepily hit on. And I shouldn’t be seen as rude, extreme, or uptight when I do have to assert my lack of consent.

It’s hard being single and…educated about consent? Not a lot of humans seem to understand the concept. But I don’t like being touched; in order to touch me, you need an enthusiastic yes. Consent means an enthusiastic yes. It’s not that I need to lighten up. It’s that I need to 1) have control of what happens to my body, and 2) trust that you won’t rape me.

#yesallwomen

Perception

In psychology class we learn that humans are generally unreliable witnesses. We don’t remember the details and our brains connect the dots, and we don’t realize when this happens. It’s easy to “remember” childhood events that never happened. Etc.

I never thought of this sort of fabrication as occurring in real time.

Today I was driving home on the interstate. I was in the leftmost of three lanes. I saw a vehicle a couple cars ahead of me abruptly turn and cut across, presumably to take a last-minute exit. This was not a merging motion; the whole vehicle turned and it moved fast. I vaguely judged the driver and didn’t think about it any more until the vehicle was suddenly coming toward me, in my lane, coming toward me, in my lane. As the cars ahead of me slammed on the brakes I instinctively swerved, (thank God no one was there,) drove for an instant longer, and pulled over, debating whether to call 911 and stick around the scene as a witness. I was an emotional wreck about the multi-vehicle, high-speed wreck I’d just witnessed (and very nearly played a part in).

As I sat there I noticed a few things. I couldn’t see anything behind me (I’d driven a little ways past, so I wasn’t sure if I’d be able to see it or not). I hadn’t heard the crash (I’ve been in a couple and you can’t mistake the sound). And traffic was moving at a normal rate in all three lanes. I decided I couldn’t quite wrap my head around what happened well enough to have anything useful to say, so I continued on my way.

I got ahold of my parents and panickedly told my mother about the massive accident I’d just seen. She noticed the details not adding up and I said I must be in shock. She asked, “so did you SEE an accident?” I was insulted. Yes, this car was coming straight at me and I had room to get out of the way but the car ahead of me did not, of course there was an accident.

I spent some time scanning the traffic reports when I got home.

Nothing.

After a not-unreal period of concern that I’d hallucinated the whole thing – oddly enough, I was reassured by the sight of the contents of my lunchbox strewn across the car floor, evidence that I’d slammed and swerved – I had to admit that I guess there wasn’t a collision after all. Apparently. I can’t even say it with certainty.

I don’t know how there wasn’t a wreck.

I really could have sworn that I saw it happen, I just don’t remember the details.

My only reaction when it happened was, oh my god, I just witnessed a huge accident.

I’m concerned that my brain so instantly filled in the blanks here with what it thought made sense, and that Logic hasn’t made the false trail evaporate. i.e., there is no evidence that an accident occurred, I know this on a rational level, yet I still “remember” that it did.

Have you ever noticed your brain interpreting small facts into full-blown stories? Was it a memory from your past, or something in real time? I spent hours tonight afraid that I can’t trust the way my brain perceives the world around it, and I haven’t quite shaken the feeling.

Topography – motor tics

What it looks like, I can tell you. What it feels like – this is where I’ve always been a little stumped about my disability.

When I was a little girl, my neurologist assigned me homework. My parents bought me a golf counter that I wore on a red ribbon around my neck. I was supposed to click it every time I had a tic.

Here’s my ticker, 20 years later and minus a couple of knobs.

I experienced a huge amount of anxiety, fear, and shame about my ticker, because of a unique attribute: 90% of the time, I don’t know when I am ticking. (Unique as far as I can tell, at least. I read a lot about TS and most people seems to experience regular premonitory urges and be aware of what they’re doing.)

My main motor tic can look like a variety of arm movements:
–In my “about” page you’ll find a photo of my most fundamental involuntary movement – my arms held in front of me, rotating wildly at the wrists, fingers flying all over the place, with my tongue tucked in front of my lower teeth and my eyes glazed over. Nowadays, as far as I can tell, I only do this when I am alone and feel fairly safe.
-A few minutes ago, I caught myself shaking my arm from the elbow and snapping my wrist very violently – ouch! I can have bigger and varied arm movements like this when I am agitated, cranky, stressed, worried, etc.
-In public, I interlock my fingers with my hands in my lap and shake shake shake shake shake those fingers. Even doing it intentionally for the purpose of writing about it feels soooo good.

I also bounce my legs pretty constantly and uncontrollably. And once in a while I just kinda rock back and forth side-to-side, because, gosh, does it feel amazing.

So how does it feel to do my motor tics? When I am aware of my tics, usually those smaller ones, it feels like – shoot, it feels like taking off an uncomfortable item of clothing that you’ve had on way too long – absolute, immediate relief.

And the tics are, amirite? (Err, triple-checking my spelling of “tic” there, that could be awkward.)

The majority of the time when I am having a large motor tic I am completely out of my body. I do not know that I am doing it, unless something happens to “snap me out of it” abruptly (with my wrist-snapping earlier, it was physical pain that alerted me to what I was doing). I don’t know that I have conscious thoughts at all when I am engaged in a tic that occupies that much of my body. I’m always very startled when I notice what I’m doing.

Keep in mind that this is normal to me; I don’t know any brain other than my own.

All that to say, with my ticker, I’d just click it a bunch and tell my parents the made-up number every night. As a professional to whom data is very important, I look back on that and grimace; but what else did I know? My doctor wanted numbers, so I had to find some way to provide them. I was 7 or 8. My parents sure weren’t thrilled when I admitted this a few years back. Oops.

Autism Awareness

April is Autism Awareness Month, and tomorrow* is “Light it up blue day” for autism awareness. I had planned to write a scathing post about the problems with the prominent organization Autism Speaks.

You know what? I’d rather share love.

I got Google Fiber installed this afternoon (yay!). The technician and I were talking about the weather, and I mentioned how nice it was to go outside to recess. He asked what grade I teach, and I gave my standard answer of “middle schoolers with autism.” He stopped fiddling with the Google box and turned to look at me. “Can I ask you a question?”

He proceeded to tell me about his preschool-age son, and the boy’s tendency to–“well, sometimes when he plays with his toys, he just lines them up.” He told me about how difficult changes in routines are, and that his son stays glued to him rather than exhibiting a typical sense of curiosity – although “give him a minute and he snaps out of it!” He uttered the phrase “traits of autism” like it took every ounce of courage to admit it. The boy he sees is his son, who is particular with his toys and maybe shy. He doesn’t see a disability.

He asked me what he should do.

I tried to explain that autism is a spectrum, and every person with autism is different. I gave a certainly-confusing description of Asperger’s, “which your doctor won’t mention because it was combined with autism in the psychological description.” I suggested that if he’s not seeing problems at home, don’t stress about obtaining a diagnosis. I advised that getting a diagnosis will enable his son to access services, if needed. I told him I’m so sorry, I can’t imagine how scary it must be to not know how best to help your child.

What I did most helpfully was listen.

What are the odds? I’m glad this man is the person who came to help with the internet (he didn’t even judge me too hard on my network name!).

What would you have said differently? The parents I work with now are many years past the initial shock. It’s not something in the forefront of my consciousness.

I hope something I said helped him.

P.S. My wifi is named “Butts II.” (My network from my previous provider was “Butts,” duh.)

*I published this on April 1; I had not yet figured out the timezone settings on this thing, so that’s why the date is wrong!

Tics & Tricks

My Tourette’s can be classified as mild.  I have, for the most part, trained myself not to do anything “weird” in front of other people.  One tic that gets by, however, is bouncing my legs.  It’s not that abnormal.  Lots of people fidget when they’re just sitting around…right?

When I was a teenager, my dad would gently nudge me during church to quell my Thumper-like tendencies.  These days, I don’t spend that much time in formal…sitting…situations?  Is that a thing?  But take this morning at a fancy district breakfast.  I became a little antsy as the time came for my principal to introduce me to the group.  In between speakers she playfully chided, “now stop that!” and I realized my legs were bouncing out of control. I spent the next two teacher introductions very consciously willing my legs to be still while pressing my hands firmly into my lap.

Another time this tic was noticed was on a first date.  I muttered, “oh, I’m just a little fidgety.”  My companion replied, “yeah, I fidget a lot, too – although I usually use my hands on a date.”

And he winked.

Noooo!

Coming out

I have a lot of attributes.

I have an unhealthy love of puns. I have a love/hate relationship with my naturally curly hair. I have the appetite of a teenage boy. I have the entirety of Wayne’s World memorized. I have ridiculously high arches in my feet. I have an impeccable memory for numbers and dates. I have mild Tourette Syndrome.

Growing up I never thought of my identity as separate from my disability. TS was just another interesting character trait. As a child, I had a somewhat misguided perception of the disorder, and I was actually pretty proud of the fact that I had TS and was nonetheless a smart cookie. I didn’t mind telling people about it. I’ve never been good at keeping my own secrets. What’s more, especially given the non-disruptive nature of my tics, I thought it was fascinating, and I thought other people would, too.

Fast forward to college. You know, the freshman seminar class that’s all about feelings and bonding and teaching you how to write? An early icebreaker was Two Truths and a Lie – simple enough premise, share three facts about yourself, one made up, and everyone else guesses what’s true. I dropped my disclosure bomb as one of my truths. I expected the reaction would be “oh how interesting.” Instead there was uncomfortable silence.

That’s when I learned to be embarrassed about my disability.

Up to this point, a few close friends and family members know about it, and they all know I don’t like to talk about it. I’ve experienced a couple torturous betrayals of this zinger of a secret. I’ve told a couple of my bosses, nearly bursting into tears when disclosing the awful, gnawing truth to a friend when she became my supervisor. I lied to a student who asked me why my legs were bouncing.

But I’m sick of the shame. I want my whole identity back.

Until next time,
Tracy