Throughout grade school I hid my tics as much as I could. I would shake or blink when I was alone, or when someone’s back was turned. Of course there were times when someone would see me and say something. I used my sense of humor as a shield. I’d either make them laugh or quickly steer the conversation in another direction.
Most got the hint that I didn’t want to talk about it.
Most.
Several times a classmate saw me sharply nodding my head forward in rapid succession and pointed and laughed. He said I needed “Nic-O-Nod,” a medication he made up.
I didn’t get any medications when I was a child. My parents did the best they could. But for some reason they were certain my problem was an emotional one. I saw several psychiatrists as a young boy. I played in dark-paneled rooms with darts and balls and board games, all designed to make me comfortable enough to open up to straightlaced strangers in dark suits. Most of the questions were of the “Are you having trouble in school?” or “Do you hate your parents?” variety. It didn’t matter how many times I said no. They just kept asking.
Eventually my parents gave up on therapists and let me settle into my own pattern. They didn’t have much choice. No one could tell them what was wrong with me.
That made my father crazy. Night after night he would call me into his room and try to find the problem. A smart man who was valedictorian of his high school class and went on to earn a PhD, he desperately wanted to fix me.
“What’s bothering you, Jim?” he’d plead. And I would cry. I hated the pain in his eyes. I just wanted to stop so that he could stop.
I couldn’t. So as a boy—and as an adult—I did the only thing I really knew how to do. Day by day, I simply survived.
8
My Search for Relief
SURVIVE? THERE ARE plenty of people who’ve known me for years who won’t understand that. What does he have to survive?
But then they only know half of me—the part that’s in excellent health. Truth is, I’m in excellent health and in agony at the same time. And for most of my life I’ve been pretty good at hiding the agony part.
It’s a confusing way to live. A medical form once asked me to rate my health as excellent, good, fair, or poor. I honestly didn’t know what to put. Susan suggested I split the difference and check “good.” But that’s not how I feel. I’m naturally positive, hopeful, and in many ways very healthy. I don’t smoke, I don’t drink, and I’ve never done drugs. I eat fresh fruits and vegetables, and exercise regularly by lifting weights, shooting baskets, riding my bike, and taking my cockapoo, Snickers, for five-mile walks. My favorite breakfast is a bowl of oatmeal with two tablespoons of milled flaxseed, banana slices, English walnuts, raisins, and skim milk. I take two baby aspirins a day, along with two multivitamin pills with special cholesterol-fighting ingredients, and six fish oil tablets. During winter I get fewer cold and flu viruses than my wife or kids. I never get headaches, I have an excellent sense of humor, and feel pretty happy most of the time.
On the other hand, when it comes to my Tourette’s, I’m falling apart. I’m severely sleep deprived, have a constant pain in my neck and my brain, and sometimes feel dizzy or worry that one day I’m just going to fall down or die.
But then I’ll have a day where I am inexplicably happy. I can’t help it. That’s just how I am. Hence my dilemma. Am I the sickest healthy person you’ll ever meet, or the healthiest sick person? I’m both. And that’s why it’s so hard for anyone to understand me.
As my age increased, so did my pain and my determination to find relief.
Many people have asked me why I never drank or took drugs to dull the pain. The answer is simple. I’m not an idiot. Self-medicating is not dealing with your pain, it’s masking it. Plus drugs are illegal, and alcohol tastes like tooth medicine. Over the years my search for legal relief has involved many things, including:
Pillows
While I don’t know the reason, sometime in my midforties sleeping in a bed grew increasingly uncomfortable. I began sleeping on the living room floor. Initially I blamed it on my pillow. Maybe after years of trauma, I thought, my neck needed different support.
I bought new pillows in stores and online. I bought them from shopping channels and late-night infomercials. I bought down pillows, memory foam pillows, pillows recommended by celebrities, and pillows that supposedly changed people’s lives.
Deep down I knew they wouldn’t work. But when you’re desperate, you cling to hope like a life preserver. Susan turned the channel if she saw a pillow ad. She knew I’d buy it. She also knew it wouldn’t work. Reluctantly, I came to believe her. It wasn’t all bad, though. I had a great time with the pillows. One of my happiest memories is building a pillow wall with my daughter. One day when Allison was seven I stacked pillows in our bedroom doorway until they formed a giant wall. Then I invited Allie to run through them. For years this was our favorite game. After picking out her favorite pillows, she would take several steps into the hallway and get ready to run through the giant wall.
“Are you ready?” I’d ask. She’d smile and nod her head excitedly.
“One, two, three … GO!”
Allie would run as fast as she could, her blonde hair bobbing behind her, and crash through the wall like a superhero. She’d tumble into our bedroom and giggle until her face was red.
“Again!” she’d shout. And I didn’t care how much pain I was in. I would build that pillow wall as many times as she wanted. I’ll never forget the first time we did it.
“I love you, Daddy!” she said afterward, running up to me. A tear ran down my face as my little girl hugged me around my aching neck.
“I love you too, princess,” I said.
When we were through she skipped away the happiest girl in the world. And at that moment I didn’t care how much I spent on those pillows. The look in her eyes was worth every penny.
Mattresses
When pillows did not bring me relief, I settled on a new villain: our mattress. Susan and I had slept on same one for twenty years. After buying a new king-size, I slept pain-free for the first time in years. I knew it. I wasn’t getting worse. It was just the mattress!
Except it wasn’t. The second night I tossed and turned. By the end of the week I was sleeping on the floor.
Still, I was convinced the mattress was the problem.
One day I thought I found the answer in a local furniture store. As my wife shopped for new bedroom furniture for Allie, I stretched out on an adjustable bed. I fell asleep raising and lowering my head and my legs, then woke up to the sound of a salesman.
“Comfortable model, isn’t it?” he said.
“Uh, sure is,” I said, wiping my mouth as I sat up, hoping I hadn’t drooled on the pillow.
“Relax,” he said. “That’s what it’s there for. Just let me know if I can help you take one home.”
He handed me his card and left. I got up to check the price.
Six thousand dollars!
My heart sank, but I couldn’t stop thinking about it. At work I gushed about the bed to my oldest friend at the paper, the Star’s national correspondent, Rick Montgomery. Rick had a theory. The up-and-down bed worked because instead of fighting my tics, I was finally giving them what they wanted—movement.
Maybe he was right. But $6,000?
After some research I bought one online for less than $5,000. I was excited when it arrived. But over the next week I tried to make it work like the one in the store, but could never repeat the feeling. Back it went.
Massages and Hot Tubs
Massages help me more than anything. Problem is, they’re expensive, and the benefit lasts only several hours. For years I had a massage every week. The treatments were partially paid for by insurance. As great as they felt, the long-term cost—in both money and time—was still too much. I worked out a compromise with my insurance company. I would stop getting massages if they would pay for half the cost of a whirlpool. After many meetings they agreed, and I pu
t the spa in my basement. For years it has been one of my most reliable forms of relief.
Mötley Crüe
When nothing else helps and I absolutely cannot stand the pain, I can always use my secret weapon to distract me from the pain for a few minutes. I sit at my computer, put on my headphones, and listen to rock songs at ear-splitting levels. Over the years many songs have helped me. My current favorite is “Kickstart My Heart” by Mötley Crüe. I listen to it over and over. I can’t explain why it helps. There’s just something about the driving rock beat—the tone and the tempo throbbing through my Sennheiser headphones straight into my brain—that takes away my pain.
It’s wonderful! I also think there’s something marvelously appropriate about the name of the album the song comes from: Dr. Feelgood.
Couldn’t have said it better myself.
Aquamassage
During a family vacation, as we were strolling around Branson Landing on the Missouri waterfront, we walked past a booth featuring an Aquamassage machine. The large contraption was about ten feet long, featured a bright blue acrylic top, and opened like a coffin. Aquamassage? I wondered. I didn’t want to get wet.
Actually, the operator said, since the water jets would massage me through a thin plastic barrier, I wouldn’t—and I could keep my clothes on.
“Do it, Daddy!” Allison said.
It wasn’t expensive. And I was hurting.
Fine. I rolled in on my stomach and put my face in the soft, supportive, open pad—the same kind used by massage therapists. Then, using a controller, the operator slowly closed the lid and fired her up. The great beast roared to life and began to fire powerful water jets at me. The water was warm. It started on my feet, moved up my legs, onto my back, and up to my neck. Then it began to pulsate, slow at first, then incredibly fast and powerful. I had a button to stop the movement wherever I wanted.
I stopped it on my neck—and left it there.
Oh… My… God!
I had never felt anything as relaxing. The power and warmth of the pulsating jets stunned my Tourette’s and obliterated the pain and tightness in my neck. After ten minutes, when my session was over, the operator almost had to wake me up. Incredibly, I was pain free. Driving back to our room, I turned to my family—and actually got mad.
“This is how you feel?” I asked. “All the time?”
My poor wife didn’t know what to say.
“THIS IS HOW YOU FEEL?” I said. “No pain at all? Completely relaxed? LIKE THIS?”
It suddenly dawned on me. “Why the hell should I do anything for you when you feel like this all the time? You go to work full-time! You rake the leaves and mow the lawn!” I stared straight ahead with pursed lips and angry eyes as the slightest bit of pain slowly began to creep back into the side of my neck.
I later apologized. It’s just that when you live with pain every second it’s hard to get a glimpse of what it would be like to live without it—especially when you know it’s not going to last. That’s when I had a crazy thought.
Maybe it could last? What if I bought an Aquamassage machine for my house?
When I got home I got online and started pricing a machine. Turns out they only cost … thirty thousand dollars?
I couldn’t give up. I wouldn’t! I found a used one online for $6,500. I had it shipped to my home and put in my basement. The first week it brought relief for a half a day or more. But the more I used it, the more my Tourette’s adapted to it. I can’t explain it, but Tourette’s is a chameleon. After something gives me relief, my tics often “fight back” as if they know I’m trying to reduce them.
The machine still relieved my pain, but the relief dropped to an hour. It was still worth it. And it continued to help me for months afterward—until it started to leak.
I got bad news from the company. Kansas City had no Aquamassage repairmen. I would have to fix it myself. I ordered a new moisture seal from the company and, with a little coaching from the service techs, managed to disassemble it and install the new seal. The challenge: getting it back together.
Not easy. The machine sat broken in my basement for more than a year. Finally, I called several local spa and pool companies. None had heard of an Aquamassage. And only one—Pool & Patio—had someone willing to take a shot at fixing it. The next day a technician named Troy Falder came to my house. I didn’t think he’d be able to fix it, but to my surprise, he did. In less than an hour he had it reassembled and working!
I couldn’t believe it! I was so happy I gave him a $200 tip.
So, yes, the machine is working again. And it helps. Unfortunately, the more I use it, the more my Tourette’s adapts to it. The pain relief now is pretty much limited to when I am in the machine.
Even More Relief
The pillows, mattresses, massages, whirlpool, and Aquamassage are only a small fraction of the things I’ve done to get relief. I’ve also gone to doctors, seen therapists, and bought massagers, head scratchers, neck squeezers, roller balls, and a gravity inversion table. I’ve had acupuncture and practiced tai chi and Qui Gong meditation. Occasionally I wear a towel around my shoulder to cushion the blow of my shakes, and stretch strong elastic workout bands around my neck to ease the pain. I’ve taken Haldol, Klonopin, Catapress, Pimozide, Zanaflex, Valium, Vicodin, high doses of fish oil, and used every over-the-counter pain-relieving tablet or rub on the market.
Special diets? Check.
Allergy shots. Yup.
Watching TV helps, but I can’t watch twenty-four hours a day. Listening to loud music helps, but if I listen as loudly as I want I’ll be deaf by sixty. I listen to the Rolling Stones sing “19th Nervous Breakdown” and think, Yeah, that’s about right.
After trying almost everything, I figured there wasn’t anything left to try.
I was wrong.
Sealtech
One day I discovered a product I never knew existed: a thigh-sized blood pressure cuff. Then it hit me. That might feel amazing on my head! It could equalize pressure, even take away pain. And while a regular cuff wouldn’t fit my head, a thigh-sized one certainly would. Excited, I bought one and inflated one around my head. The pressure eliminated my pain. The problem: it covered my eyes and smashed my nose.
I called several companies to ask them if they could make a headband-shaped inflation device. One by one they told me they didn’t do such things. Finally, one company said it would—for $4,000.
Finally I called Sealtech in Athens, Tennessee, and talked to a man named James Winder.
Please, Lord, I prayed. Let him understand my pain.
James had a Southern accent, a kind voice, and a respectful way about him. And to my surprise he didn’t tell me custom-making a device was impossible, or shoo me off like all the others.
“Listen,” I said. “I know companies don’t usually work like this. It’s not your job to care about the needs of one person.”
“Sometimes it is,” he said. “We’re all our brother’s keeper.”
It was one of the kindest things anyone ever said to me. James said he’d check with his engineers. When he called back, shortly before Christmas, he told me the good news.
“I’m going to do something for you,” he said, describing an inflatable headband his company could make that sounded like the answer to my prayers.
He then apologized.
“I wanted to be able to give this to you for free,” he said. “Would … $200 be too much?
Two hundred dollars? I could have hugged him through the phone. It was a Christmas miracle!
It was on that day that James Winder became one of my personal heroes, and Sealtech one of my favorite companies. The product arrived several weeks before Christmas. When I put it on my head and pumped it up, it temporarily relieved the pressure in my head. That night I said a prayer of thanks for James and his coworkers.
Some say corporations are evil. That’s not what I found at Sealtech—just decent people who cared enough to help someone they’d never met. These are people
who should be proud to look themselves in the mirror at night. They didn’t take away my tics, but they did make them easier to endure. And for that I will never be able to say thank you enough.
It isn’t perfect, though. Nothing ever is with Tourette Syndrome.
I still have pain and stress. I still have frustration and sadness. And there are days that are so hard, so horrible, so filled with desperation and loneliness that sometimes I just feel like giving up.
9
I’d Rather Have Cancer
THIS MIGHT SOUND crazy, but some days I’d rather have cancer than Tourette Syndrome. I’m not talking about the really horrible kind that destroys lives and tears families apart; I mean the kind doctors have a shot at curing.
I don’t mean to be insensitive. I have friends with cancer. I’ve seen people die from cancer. So why make that statement?
I’m just jealous of the attention and understanding. People don’t understand the suffering involved with serious, lifelong Tourette Syndrome. Not even my own family understands.
Not really.
But I hear you. You don’t know the first thing about how frightening cancer is! And why would you ever want to trade Tourette’s for cancer? Tourette’s is not fatal!
True. But then, some days, that’s the problem. It gets awfully lonely in this body. I’ve endured the tics, the pain, and the embarrassment of Tourette’s for half a century. If I want any understanding at all, I have to tell people how much I’m suffering, which isn’t cool.
When you have cancer, everyone understands immediately that you’re really sick. You might have to have radiation or chemotherapy. Your hair might fall out. You might gain weight, lose weight, or your personality might change. Then there’s the little fact that your condition may just kill you. Who doesn’t understand that?
And so you get immediate attention. People with Oh-my-God faces come to talk to you. They bring food to your house and take up collections, because—for God’s sake—you’ve got cancer!
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