Chapter Two: Camp Twitch and Shout

Part One

“You know what is fun? Physical injury!!”- said no one, ever (besides the stupid people on Youtube maybe).

Tucker and I representing our cabin colors and getting ready for a camp-wide battle to the death for first place in the lunch line. Photo by Joe Sindoni

Yet for some reason, amidst the fabulous time I’ve had with Tucker’s boob-grabbing, head-punching, face-destroying, and vagina-whacking tics (again, if you’re skipping to this chapter, you will be very confused- try Chapter One ) , I decided it was a good idea to spend a week this past summer volunteering as a camp counselor for Tourette’s camp. Yes that is correct, a Tourette’s-only camp called Camp Twitch and Shout, which I find to be an exceedingly fitting name.

For those of you jumping to this chapter, Tucker, my 6 foot tall, 240 pound, extremely pubescent teddy bear of a 15-year-old brother, has one of the most severe cases of Tourette Syndrome the world-renown neurologists we frequent have ever seen.

The neurological disorder cause those who have it to feel an overwhelming urge to “tic” by making a sound or moving their body a certain way. The actions resulting from these urges are completely involuntary and outside of the person’s control, and sometimes take the form of curse words, or Coprolalia, which is extremely rare and generally is very mild for those who do have it.

Tucker, of course, is the exception to both of these facts, which ultimately makes the entire situation infinitely more hilarious and also really difficult.

Mom, who along with dad, has always been there for my siblings and I believes our unique situation has made our family stronger.

“We may be dysfunctional, but it’s the good kind,” she says. “I can’t imagine a more ridiculous way to bond as a family, and even though it’s hard, I’m grateful for the strength it has added to our relationships.”

Tucker’s tics cater to everyone, and are strongly influenced by what he sees. If you are fat, he thinks it, registers the fact that that would be the most applicably offensive word to say, tries not to say it, tries not to say it, tries not to say it… until it can’t physically be subdued any longer.

“Think of it as a ‘word sneeze’ if you will,” says Annetta Hewko, president of the National Tourette Syndrome Association. “You might be able to stop it the first time or the second, but if your body needs to do it, it will ultimately force its way through.”

Except for the fact that instead of “Achoo!” it’s “FUCK YOU!”- which kind of rhymes, so that counts, right?

Our lovely police escort duo for our oh-so-lovely airport adventure. Tucker is in his wheelchair since he was having a lot of “falling down tics” that day (Tucker tic-ed and punched me in the face about a millisecond after this photo was taken, which I assume is the reason he is grinning mischievously). Photo by Rebecca Sawyer

We as a family have decided that if you don’t laugh along with it, then you’ll cry. We much prefer the first option, so when Tucker comes up with a particularly interesting tic (trust me, they get weird), we sometimes respond.

One of my all-time favorites is the day we were eating sandwiches outside of our town’s shopping center- we rarely sit inside because it just makes it a whole lot more difficult for the innocent bystanders around us to eat their soup in peace when some random kid keeps telling you that he can see your nipples through your shirt. By the way, by “keeps telling” I actually mean “screams ‘your nipples are crooked!’ eight times in the span of three minutes. I can’t make this stuff up, people.

Anyways, Tucker’s tics are not only verbal, but also physical, which doesn’t sound so bad until you’re the one he spits a mouthful of partially-chewed ham and pickles onto.

So that happened, no need to explain how spitting works.

The thing is that Tucker is 15, he’s in his first year of high school with an absurdly embarrassing disorder that makes his body do things he has absolutely no control over and is forced to tell people every single thought that enters his mind. Just think about that last one for a second.

Most kids his age, and if we are being totally honest, everyone is insecure to at least some degree and walking around like you’re on truth serum in a high school does not help that situation. Tucker is weird and he knows it. Kids are mean, and they tease him, sometimes even intentionally triggering his tics. If you think about it, it would be pretty hard for anyone to avoid a low self-esteem in that kind of situation.

So my family and I do what we can to make him feel like less of a “freak,” as he calls it. How, you ask?

Remember when I said we prefer to laugh than cry and so we sometimes respond to his tics? Let’s just say I did that. Find out what “that” is in the next post.

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Chapter Two, Part Two

After the initial shock (and fiercely painful burning sensation) of being suddenly covered in jalapeño sandwich spit, I gave Tucker the evil eye. Tucker, who had been giggling in between saying sorry went dead silent, afraid what his big sister would do for revenge.

Everyone around us is staring in disgust, and I can see him instantly feel judged. Well, you only live once, and how he feels about himself is so much more important than something so trivial and petty as maintaining composure and societal norms.

So what does my 19-year-old brain decide is a good idea for me to do in the middle of a restaurant? Spit back, of course.

From the corner of my mouth, Tucker could see my mischievous grin just quick enough to know what was about to happen, but too late to form an escape plan. Covered in sandwich bits, we both burst out laughing, clean up and head out before we can have episode two and three with the drink and chips.

Being silly with Tucker is our way of letting him know that it’s okay to feel at ease even if others don’t, and that he should embrace the quirks that make him my little brother.

He once yelled at me, “You’re a duck!”

So my sister and I ran around the church lobby quacking and flapping our wings as I’m sure all level-headed humans do.

My very snazzy camp counselor shirt. Photo by Rebecca Sawyer

Of course, that makes people think that the rest of my family is nuts too, which is probably a pretty spot-on assumption now that I’m thinking about it.

So with mental images of sandwich spit and flailing ducks, I invite you to now join my summer memories of Tourette’s Camp, and find out what happens when 200 people with Tourette’s eat sandwiches, instead of just one.

Chapter Two, Part Three coming soon…

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Chapter Two, Part Three

You know you belong on a reality TV show when you can walk in public, have everyone (and I do mean everyone) staring at you, and don’t even bat an eye.

Walking through the airport this time around, we were trained professionals keeping our eyes on the prize. Tucker’s falling tics started up, so he’d move about three inches, collapse like a noodle to the ground, bounce back up, walk half a step more, and then come crashing down all over again.

Needless to say, we were going to miss our plane, and probably Christmas, if we kept going at this pace, so our TSA police escorts graciously hooked us up with a super-cool wheelchair. As soon-to-be Tourettes Camp counselor, I began to push Tucker, and we were finally moving at a human pace.

Of course, the wheelchair fix would have made things a little too easy, and God knows we were craving a challenge, so naturally Tucker starts grunting.

One of my favorite spots at Camp Twitch and Shout, which is deceivingly peaceful-looking. Photo by Cambria Sawyer

For those of you who have not met Tucker, you’re probably wondering why it matters that he’s grunting.

Tucker starts punching when he grunts. That’s why.

I should have some serious ninja skills when it comes to dodging projectiles at this point, but I did not react in time to the grunting- should have known. Tucker swings his mammoth-sized fist up and over his head right into mine in a nasty uppercut, and I can feel my jaw throbbing. I don’t know what’s wrong with us, but at this point we usually just giggle at our own physical pain.

So, one hand rubbing my sore face, and the other pushing the wheelchair, we made our way to the gate, briefed the captain, briefed the crew, pre-boarded- you know, the usual. Oh yeah, and the whole time I am literally dodging bullets as Tucker tic-punches up behind his head over and over (again, here is where we cue the very confused bystanders trying to figure out what the hell is going on in our dysfunctional corner of the universe).

Fortunately for us, we are so used to it that it takes quite an outstanding amount of weirdness to make us uncomfortable or embarrassed. I have worn a sleeping bag as an outfit in public, people.

The n-word still makes us cringe, though. One, because we know that it still hurts people’s feelings, and two, because it puts us in danger.

I don’t blame people for initially being upset when they hear that word come out of Tucker’s mouth- any other reaction would be slightly questionable. We do expect however, that people be tolerant and understanding once we have explained the situation to them, and it’s when someone occasionally fails to do so that we run into some trouble. And that’s exactly what happened next.

“People who aren’t nice to me or other people with disabilities forget what a “disability” is,” Tucker says sometimes. “It’s something you don’t choose- you think I like doing this all the time? I don’t get why everyone is so kind to people with cancer, but when it’s my medical problem, I get yelled at.”

This is from a 15-year-old kid, people.

Another of my favorite spots at Camp Twitch and Shout by the lake- if we could actually make it through the airport to get there… Photo by Cambria Sawyer

The beautiful city of Atlanta is revered for its rich African American history, social justice movements, and human rights activism against segregation. It was home to Dr. Martin Luther King Jr., one of our nation’s greatest advocates for racial equality- and then there is Tucker, who screams the n-word every 30 seconds so long as there are black people nearby.

Unless you’re cheating and reading this chapter before the first one (boo), you should understand at this point why Tucker is yelling the n-word at people in these scenarios. With the recent tensions however, I feel the need to make myself overwhelmingly clear as I write this that again, my family embraces diversity. We, as do the majority of ethical and level-headed humans, solely judge people by how they treat others and certainly do not discount an individual because of something as irrelevant as physical appearance. Contrary to the beliefs of countless individuals who have lectured us for our immorality because they were offended by my brother’s disability, we are as far from racist as it gets.

Now that we’ve re-established that, let’s revisit our current scenario in which we are making the Tourette’s camp pilgrimage through one of the most historically African American areas of the country with my brother who is screaming the most racially offensive word, once again, in the country. Woohoo.

Shockingly, we had actually made it almost all the way to the rental car facility in Atlanta without a hitch, but that’s a little too easy.

Coming up: read about my almost-first fist fight in Part Four of Chapter Two

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Chapter Two, Part Four

We deplane in the Atlanta airport and make our way to baggage claim, cringing as we go. As I push Tucker through the terminal on his new wheelchair, I issue apologetic glances at people we pass.

Almost constantly, Tucker is tic-ing the n-word, one right after the other, for every single black African American person he sees- and there were a lot.

If there was a way to make a profit off of raised eyebrows, we’d be loaded.

Each time he says it we cringe, issue our standard “Sorry, he’s got Tourette’s,” and hurry on- and then we got stuck on the train.

What happened next isn’t terribly common, but still happens much more often than we’d care to deal with, and still appalls me that people can be this way.

En-route to the rental car facility on the airport’s monorail, we finally began to relax after a very long day (although if we’re being honest, it had actually been kind of enjoyable compared to previous travels). WRONG.

Tucker and I finally in our post-airport happy place at camp, selfie-style. Photo by Cambria Sawyer

There is one African American woman on the train. And it begins.

“Ni-, niggah, nig, nigger, nigger, nigger…” Over and over and over again.

We make sure she’s looking us in the eyes as we explain why he’s saying those things, and how Tourette’s works and that we’re sorry.

“Yeah, whatever,” she says.

Okay, so not one of the greatest responses we’ve ever gotten, but certainly not one of the worst (remember, we’ve been literally chased out of Walmart for that word before- another super fun story I’ll have to tell you sometime). Usually if people choose to not believe us but just prefer to ignore it, we let it be. No need to stir things up when they’re relatively calm.

So, while not completely satisfied that she understood what we were trying to say, we let it go and continued riding the train with our sleep-deprived eyes half-open. Tucker keeps going. In fact, it’s getting worse. And then she leans over to the man standing next to her and whispers, “that’s bullshit.”

I woke up a little, then.

Mom, Weatherly, and Tucker had not seemed to notice the little exchange, and she wasn’t seeming to be going on the offense just yet, so I just kept it to myself in hopes that everything could remain in-tact until we were all free to go our separate ways. Nope.

The guy she’s whispering to wants nothing to do with this conflict, and by shrugging and trying his damnedest to remain impartial, she’s becoming more infuriated that no one is siding with her. And then her head snapped up, she took a big breath and I could see the fiery lecture in her eyes before I ever heard it come out of her mouth.

I thought if maybe a pre-emptive strike would diffuse the situation. Also nope. Before she could say a word. I reached out my hand and said, “Please don’t. We’ve been told we are wrong by so many people I can’t even count any more. He doesn’t enjoy hurting people’s feelings, and talking about it will only make things worse.”

She was not pleased. Also, she was very, very loud.

“Are you shitting me?!” she screamed (and I do mean screamed). “You expect me to stand here and be degraded, and not only that, but you want me to take a lesson from you?”

She left no room for answer, and as she turned to scream at my mother, one of the most accepting, patient and loving people on this good earth, Tucker’s tics exploded.

“Is this your mess?” she yells at mom, motioning spastically with her finger at the three of us. “You need to clean this shit (my mother’s children) up. You should be ashamed of yourself for raising such horrendous people and you know what? I feel sorry for them! They don’t even stand a chance at being decent human beings when they are stuck with some racist-ass bitch like you.”

My claws came out.

More to come in Part Five.

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Chapter Two, Part Five

Everyone on the train was staring, and I didn’t give a shit.

“Ma’am,” I said, which judging by her huff also pissed her off- I was starting to get the feeling that nothing made this woman happy, “we’ve apologized to you. We’ve explained what is going on. He’s not going to stop, if that’s what you’re wanting, it’s part of the disorder. We have medical documents signed by some of the top neurologists in the country explaining what you’re seeing right now and certifying that he has Tourette’s. Would you like to see them?”

She laughed at me as if I had just made a joke.

Motioning to the papers, which mom had begun to dig out of her bag, she screamed, “Get that trash out of my face, you bitch!”

It’s like that scene in Dirty Dancing- no one calls mom a bitch.

She looked like she was about ready to punch mom, and I was afraid she may actually try it.

The camp counselor squad touring Twitch and Shout before our campers arrive. Photo by Janel Semonasky

“If you can’t bring your ignorant self to understand the bigger picture of what is going on here, than you just need to keep your mouth shut,” I said sternly as I moved in between her and mom. We were standing face to face, nostrils flaring, each beside ourselves with the other’s stupidity.

That poor guy in the middle was getting real freaked out at this point, and tried to suggest that we just cool it until the train arrived (longest train ride ever, by the way).

This woman, who may very be one of the most ignorant human beings on the planet, began to lecture us on tolerance, and not the cute PG way they do in elementary school.

Like they say, I literally couldn’t even. She was a lost cause. I told her that she was free to keep talking, but no one would listen because the disabled child she was working very hard to make feel like a piece of dirt did not deserve such abuse.

She screamed at me as I backed against the other wall, never breaking eye contact with her. She finished her lecture, I didn’t finish my stare.

She didn’t know what to do about my silence, so she just huffed in place until those blessed doors finally opened.

I was anchored to the ground, absolutely motionless, and still staring her down as she angrily stomped out of the car. As she looked over her shoulder at us with disgust, I just waved, with a tiny smile on my face.

I promise I do love him, even if he does have teenage boy cooties. Needless to say, Tucker was very excited that I would be joining him at camp. Photo by Eli Haynie

Don’t misunderstand me, I was not happy. In fact, I was really fucking mad, and in hindsight probably should have not done the little sarcastic move there at the end. But I was at my wits end with that woman.

Cue massive Facebook rant…

Today we deserved understanding, yet received none. There is a theory that suggests we would be better off to “let ten guilty people go free than to wrongly hold one innocent person accountable,”- in other words, be kind and give people the benefit of the doubt before you judge them. I could not agree more.

My 14-year-old brother, Tucker, has a severe form of Tourette Syndrome, an absurdly complex neurological disorder that causes a person to make sounds or movements out of their control- in extremely rare cases it can cause a person to involuntarily say vulgar things including curse words, and Tucker just happens to have it. He struggles with kids making fun of him every single day because they don’t understand the difference between “freak” and “unique”. It upsets me to see him come home feeling isolated and hurt so consistently, but I find myself speechless when fully grown people (who are supposed to set an example for younger generations by demonstrating what kindness, tolerance, and understanding look like) try to degrade him and our family for a disability that is no more under our control than a child does with Down syndrome or in a wheelchair.

Among the many profanities that Tucker (again, completely involuntarily) says, is the n-word. Our family embraces all forms of diversity, and believes that the value of a person is determined solely by how they treat others and the kindness that they have in their heart (certainly nothing so arbitrary as skin color, religion, education, political affiliation, sexual preference, etc.) It’s just part of the disease- when he sees an overweight person, he says fat. When we go to the airport, he says “I have a bomb”- the single most unwelcome thing you could say in a situation is what you think about, and so it’s what comes out. So when he sees someone with darker skin, the n-word comes out. We realize it’s a shock and initially offensive to people, and we always do our best to immediately explain the situation and give our apologies to make sure that people are not hurt. Usually people are so understanding, but every so often, as we did today, we come across someone who almost seems determined to misunderstand- almost as if they prefer to demean someone than to encourage.

We unfortunately got stuck on a train with a woman today who became irate when she heard Tucker say the n-word. As always, we immediately apologized and explained the situation, but instead of listening she began to lecture my mother for being a shameful excuse for a human being. She blamed us for teaching and defending my brother’s “racial hatred”, and when we tried to show her the signed doctor’s notes explaining Tucker’s disorder by some of the top neurologists in the country, she refused to look and called us trash. She then made fun of us when we asked that she please try to be tolerant of something she clearly did not fully understand, and at least respect our efforts to make peace with her.

I know such a emotionally-charged word can be extremely hurtful, but Tucker is 14, he tells his story so that people will learn instead of judge, and he deserves to be respected too (so do we, for that matter). I am so thankful to have such a strong and supportive family that has been unfailingly loyal and loving in all that they do. We can’t guarantee that everyone will see eye-to-eye with us on everything in life, but I just ask that even if you cannot possibly understand the situation of another human being- that you extend that olive branch, and take into account that they may just be telling the truth. Bottom line, be kind- because you can only judge someone if you know the full story. And the only full story that you know is your own.

127 likes, 6 shares, and 33 comments later, I started to feel like I had begun to right a wrong. After dealing with such unbelievable ignorance, it was very reassuring to see the rush of social media support.

Friends, family and people I have never really even spoken to poured out their support to us, saying that they would pray for us and promising that they personally would always show people kindness.

Believe it or not, this is not the only time something like this had happened to us, but it had been a while. For once, we were a bit shaken up, but began to calm down as we finally reached our rental car.

Of course, we couldn’t fit all of our luggage into the trunk, so some of us rode with suitcases in our laps- which is fine, as long as you don’t really have to pee, which I did.

But as I sat there, dodging Tucker’s fists from the seat behind me, trying to breathe with 50 pounds of crap pressing on my very full bladder, and trying to figure out where the hell we were going at 2 a.m. in another city- I smiled, because these were good problems to have.

They meant that I was with family, standing up for what we know is right, on our way to help other kids dealing with the same kind of issues as we had experienced all day long, and of course, going on an adventure.

And Tourette’s camp, which was finally going to begin that next morning, is definitely an adventure.

Check back in soon for the rest of Chapter Two!