Tag Archives: tourette syndrome

Look out!

As I’ve probably mentioned before, I am a caregiver for adults with disabilities on my breaks from school. I love my job more than anything! But I have to say, I have some of the craziest experiences at my job, and most of the time it’s got nothing to do with my individual, but rather ignorant members of society.

Case in point: the other day I was grocery shopping with my individual, and it was the most fun I’ve ever had grocery shopping in my entire life! As we’re wheeling through the deli aisle, we see two young kids, (maybe 6 and 4?) running around. As we approach, one of them says “look out, a wheelchair! Don’t let it hit you!” They run around, “dodging the wheelchair” and making exploding sounds.

I was taken aback, and certainly appalled. I looked to their mother, who was yakking on the phone and clearly not interested in educating her children on people with disabilities.

I didn’t say anything. My job is to be a caregiver, and when someone is rude or ignorant, the last thing I want to do is call them out on it and make a scene while I’m with my individual. My job is to redirect and hope that someone else (the parents, maybe?) will stand up and be an advocate. Sometimes it sucks because I want to advocate the hell out of people, but can’t.

Instead, I found myself rationalizing their response by thinking how cool it was that we were a major part of whatever imaginative plot the kids were making up.

“As we were sitting, wondering how we were going to escape the evil three headed deli monster, a wheelchair zoomed by, ridden by an awesome person and driven by her caregiver. ‘Look out!’ I said. ‘Don’t let it hit you!’

But I had no reason to fear. As they zoomed by, they swooped up my brother and I, saving us from the clutches of the three headed deli meat monster. ‘To the chopper!’ They exclaimed, as we rode off into the sunset.”

Hey, it’s all in a days work 🙂

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12 days of my life since I last blogged

Wow! With all the craziness of the holidays and finals I realized it’s been a while since I updated everyone on the mundane details of my daily life!

Well, today’s your lucky day. You will receive those updates. And you will receive them in the words of a song:

On the 12 days since I last blogged my life has brought to me:

12 crazy (but awesome)
relatives
11 last minute assignments
10 daily coffees
9 all nighters
8 fits of laughter
7 fits of tics
6 fits in general
5 DOCTORS APPOINTMENTSSSS
4 hours of sleep a night
3 weeks without laundry (oops)
2 hospital visits
AND A SINGLE 4.0!!!!

Wait what? A 4.0? Is it voodoo or is my disgusting amount of hard work paying off?

Voodoo.

Ps: I know it’s been like 47 billion Days since I last blogged but that wouldn’t fit with the song. Soooooo

Owwwww

One thing that many people don’t know about Tourettes is that it doesn’t just “stop” when the tics start to become painful. Surprisingly, that’s a common misconception.

In fact, it’s quite the opposite. A lot of times you have to keep ticcing until it hurts enough, or feels “just right.” None of this is a conscious thought, but the tic won’t stop until that happens. Most of the time, I can’t tell you what “just right” is. My brain calls the shots on that one!

Anyways, the other day I was having a really bad “tic fit” and ended up with a concussion. Owwww. I was out for the count for about a week but am on the mend.

But here’s the thing I’m ashamed about. Whenever someone asked how I got a concussion, I lied.

“I walked into a wall.”

“You know, just doing that sports thing.” HAHA

“I got into a fight with an elephant.”

I couldn’t tell people. I couldn’t say “I hit myself in the head 47 times.” I was ashamed. I was embarrassed. And I was afraid that I’d hear “but doesn’t it just stop before you hurt yourself?”

So for future reference, it never stops. Literally never.

ALSO: I went to the dr on campus and when I told him I had Tourettes, he said “you’re born with that, right?”

….no. I got bitten by a radioactive spider and BAM- TOURETTES! 😛

I think he got his medical degree at Walmart…

A strongly worded letter

The past few months, as many of you know, i’ve experienced an upswing in symptoms.

Simultaneously, I’ve been harping on my apartment complex to come look at some scary looking who knows what in my bathroom vent.

Well, four days ago my friend came by and saw the scary looking stuff. He recognized it as black mold and the probable cause of many of my symptoms.

So, I submitted another maintenance request.

Nothing.

I told my dad about my frustrations, and he said he’d try and figure out something.

Fast forward to yesterday. At 9 am I get a knock at my door. It’s maintenance along with the manager of my apartment complex! FINALLY! What prompted you to come?

Oh? A strongly worded email from my father sent 20 minutes ago, including the words “seizure” “liability” and “health department?”

Sometimes that’s all it takes. Although next time, dad, I’d appreciate it if you don’t send the email at 8:30 in the morning!

When things get worse

The third week of school is approaching . Typically, at the beginning of school , my tics increase, and then start to decrease after I get into the swing of things.

Well, I’ve certainly gotten into the swing of things, but my tics have not gotten better. In fact, they’ve gotten steadily worse .

It’s not easy having tics , especially ones that are visible. As I walk to class, I can feel people staring at me. I want to tell them “I’m not actually weird! I’m actually a really nice person !” But nobody wants to make friends with the girl who screams “HAGRIDS buttcrack” every few seconds.

I fear that someone will confront me after I have my middle finger tic. I fear that the college won’t want me any more because I’m too much of a distraction. I fear that, even though my friends are soooo nice and supportive, they will tire of my tics quickly. I fear that people will think I’m faking, or just doing it for attention, since tics get better and worse and sometimes even go away for short periods of time.

I fear that people won’t understand that anything your body can do or say can be a tic, including SEEMINGLY purposeful movements and sounds , such as saying “the other day I went to the mall.” Even though it seems like a conversation starter, it’s actually a tic.

I know these fears are probably not valid. But thanks to OCD and anxiety, they’re not gonna go away. But a girl can dream, right?

Trials and errors, errors, and more errors

Do to you hate it when you think you’ve got everything out, but you don’t? (Profound, I know.)

I recently moved into a 1 bedroom apartment by myself to avoid the noise of having to live with others. My roommates last year were spectacular, but I wanted to try out living alone.

What could go wrong?

“Oh, our mistake. We had you down for a 4 bedroom again.”

“You can try to apply for a 1 bedroom again, we might have an opening.”

“Look, we have a 1 bed top floor open! Oh wait, we cleaned and prepped the wrong one. You’ll have to live underneath a bunch of stomping dinosaurs while you wait.”

“Yes, the unit is infested with black mold and puke stains, but at least there are no bugs…. Yet”

“Mail keys are overrated. Who needs mail anyways.”

“All our laundry card dispensers are broken. Ask your roommate if they have one. Oh, you don’t have a roommate? Too bad. Guess you’re gonna smell.”

NONE of this was a deal breaker, despite the obnoxiousness of it all. However, I moved into a top floor 1 bedroom to avoid noise since I have sensory processing issues. I wouldn’t mind that they built my apartment above the stairs if they had made the walls out of something other than cardboard and maybe, ya know, insulated it?

But they didn’t. And I can hear every footstep going up each of those three flights of laminate stairs. And I can hear every door open and close. And I can hear every thing you say to your roommate and your mom on the phone. And I have an ear infection from wearing earplugs and headphones 24/7.

UGH! RANT OVER