“Tourette’s is a disorder that involves tics,” says 37-year-old Craig. “It’s embarrassing. It’s humiliating. It can be mobile, such as moving an arm, or shaking a head, shrugging a shoulder, to vocal tics. It’s all-consuming of someone’s life.”
Craig first noticed signs of Tourette’s around age 13. He began to make small grunts and coughs so minute he found them easy to hide. In his mid-20s one of his tics suddenly changed. He found that the volume of his voice would go up sharply mid-sentence. In his early 30s swear words began escaping his lips.
“My tic has been the F-word for many years and then just about a year ago switched to the N-word, and that’s when I decided that I needed to take control of it and treat it with medication. Some medications helped, but the side effects were so severe — headaches, nausea, dizziness, exhaustion — that I would almost rather tic.” As Craig explains, tics pepper his conversation.
Craig’s fiancée, Amy, lives with his disorder on a daily basis. “Even though Craig has Tourette syndrome, I had no hesitation about dating him,” she says. “I look at it like if you started dating someone with cancer, you wouldn’t leave them. It has nothing to do with who he is.”
“My fiancée, Amy, is the most compassionate person that I have ever met,” says Craig proudly.
Craig’s Tourette syndrome has reached a level where he says the N-word 100 to 200 times a day. It’s a word Amy believes Craig would never use in his life. “He is the most non-judgmental person,” she says.
Craig agrees. “That’s not the way I was raised. That’s not the way I think. That’s not the way I feel. I think one thing that’s misunderstood about Tourette syndrome is that people think that the person chooses the words they’re going to say. We have absolutely no control over what’s going to come out. Tourette’s picks that word and then you’re stuck with it.”
Over the last five years, Craig’s disorder has led to altercations. At a gas station, once, he said the F-word in front of a man and his children. “When I explained that I had Tourette’s, I don’t know if he knew what that was, but then he pulled my gas pump out of my car and swung at me with it — hit me a couple times.”
Recently, at Amy’s apartment, a neighbor overheard Craig while he was taking out the trash.
Craig recounts, “I was ticking, and then I saw a gentleman stick his head out. I didn’t know at that time that one of Amy’s neighbors was an African American, and he started yelling things at me. He started calling me ‘retard.’ She has now got to move because of the threats that were made.”
Craig avoids places that demand quiet, such as the movie theater, libraries, book stores and church.
“Simple things like going to the grocery store,” says Amy, “he’ll prefer to sit in the car instead of going in because he doesn’t want to offend someone.”
“It’s very important to me that people become more aware of a disorder like this and to show a little compassion and understand what people go through on a daily basis,” Craig says.
Dr. Phil acknowledges the difficulty Craig must have whenever he merges with society.
“When you get up in the morning and you think about going out and going through your day, what do you do to try to manage this?” asks Dr. Phil
“You know it’s going to be there,” says Craig. “It’s something you accept. You can’t stop it. You can’t become a recluse. You’ve got a life to live. So you just kind of move forward and hope for the best, you know? And that’s what I try and do every day.”
Dr. Phil asks Craig’s if certain situations aggravate his symptoms.
“Yeah, absolutely,” Craig confirms. “Stress is horrible. And the worst part about it is that the more stressed you get, then the tics become worse, and then when the tics become worse you, of course, are stressed out more about the tics, and it’s just this vicious cycle, and it’s worse and worse.”
“Amy, is it different for you when just the two of you are together versus when you’re out in public?” asks Dr. Phil.
“Sure,” says Amy. “When he gets nervous it’s more frequent. And when we’re at home it’s normally so frequent that I notice when it’s not. I notice the days or the times when he’s obviously so calm or — I don’t know what the little gift is to give us the time when he doesn’t, but I notice that space. And when we go places, I can tell when he gets nervous. When we got on the plane last night — he doesn’t normally fly — and that was pretty difficult. And I knew it was going to be difficult and so did he.”
“When you were on the plane, were you ticking at that point?” asks Dr. Phil.
“Yeah, I was, but I had forgotten how noisy planes are on the inside sometimes, and when there’s noise, I tend to tic less just because I know people can’t hear me, which relaxes me more and I just naturally don’t tic as much. So I like noisy places. Very noisy. They’re good.” They all chuckle at the idea. Dr. Phil turns to the audience and gestures for them to bring up their noise level.
“There’s a little heat here, to relax you some,” Dr. Phil jests. “And what are you doing to manage it now?”
Craig says he’s not currently taking any medications. “I’ve been taking medications for it probably seven, eight years off and on, but you know, you take a pill. Nobody knows what works for it so it’s a trial-and-error basis. You take a pill, it doesn’t work, you take another one, it doesn’t work, you take another one, and that just gets old after a while, especially with some of the side effects that come with those medications. I just recently finished college. I’ll be getting my degree in December, and I couldn’t focus — on those medications — on school, so I just stopped taking them for the meantime.”