When we’re finally admitted inside, we’re directed to a larger waiting room that before long fills up with other patients. There are many doctors working in this area of the hospital.
There seems to be a special bond among patients in places like this because everyone has the same kinds of problems. Most of the patients here are older, and a few have come with family members.
The man who takes a seat next to us is probably in his seventies and doesn’t look well. He’s bent over and his skin is pasty white, like pie dough. Soon he strikes up a conversation with my mother. He’s a doctor himself, researching treatments for Parkinson’s disease, which he suffers from. In his case, the sickness has progressed to its later stages. He has only a short time left, he admits as a matter of fact, and wants to survive long enough to finish his research, which could help with a possible cure for Parkinson’s. He says that Dr. Holmes is the best in this field, and he hopes she can give him a few extra months to finish his work.
When his name is called, he turns to me with eyes that have seen a lot of suffering and says, “Good luck to you.” I know I’ll never see him again, and it makes me feel sad.
Chapter 29
DR. HOLMES’S ASSISTANT is a young, soft-spoken but very intense man who takes my medical history. He spends most of the time on my past medicines and their exact doses.
My mother has brought her precise daily notes on my meds and their effects on me, which she has kept since the beginning.
A door I hadn’t noticed opens, and Dr. Holmes enters, surrounded by three other doctors in long white coats who look more like scientists. Two of them have clipboards, and no one speaks but Holmes, a tall and strict-looking woman with round glasses, maybe in her mid-fifties. She ignores me completely at first, choosing to skim over the notes her assistant has taken. When she’s done, she looks up at me without even so much as a smile. She’s all business.
“What are your present symptoms?” she asks as though she’s dealing with a grown-up patient.
I don’t know where to start. “I do a lot of things,” I tell her, scrunching up my face. “Twist my neck, make sounds . . . different things at different times. Right now I’m hopping a lot.”
For some reason, the hopping gets her attention.
“Would you show me?”
I’m surprised and uncomfortable at this request. No doctor has ever asked me to perform my tics, maybe because they are so obvious, they don’t have to. With all these new doctors staring at me, my eyes are twitching continuously, and when I stand, my body bends at the waist and I bob up and down a few times as if I’m doing a warm-up exercise. I haven’t done this one in a while.
Dr. Holmes directs me to walk to the end of the hall, a distance of about thirty feet. Almost immediately, my legs get a freeze-up feeling, and I have to take a few hops to relieve the tension.
Three or four quick hops in place, some more walking, then three or four more.
The first set of hops is mild compared to the second, which almost trips me up. When I look back to check Dr. Holmes’s reaction, I notice that one of her assistants has been videotaping me. Suddenly I’m embarrassed and angry. No one has asked if they could take my picture. I don’t know who they’re going to show this to.
The general feeling I’ve had since I came into this office is that I’m not a person; I’m a specimen on display.
I turn back to the far wall and try not to think about it. I tell myself that they’ve seen so many other lab rats they’ve forgotten rats have feelings, too.
It’s another fifteen feet to the end of the corridor, and because I’m extra tense, I hop every few steps until I get there. At the end of the last jump, I lose my balance and fall forward. Only my outstretched hands stop me from crashing into the wall, maybe smashing a few teeth.
After the videotaping, the men in the white coats leave and I go back to my chair with several more hops, none as extreme as the one that almost made me fall.
“We understand that you’ve treated Tourette’s cases,” my father says to Dr. Holmes, getting right to it, as usual.
“Yes, a large number of them,” she answers.
“How many have you helped . . . I mean . . . well, as a percentage?” my father asks, trying to pin Holmes down. He’s as suspicious as I am and is never afraid to be direct.
“About eighty percent,” Holmes says without hesitation.
None of us is expecting a number that exact or that high. It’s too good to believe, even though I want to. The last thing I need is another false hope, but it means a lot when a woman of her stature makes such a specific claim. She’s instantly put a chink in my armor.
“From what I’ve seen so far, I’m fairly certain my treatment will work for your son,” she adds without much emotion, as if this life-changing, lifesaving promise is everyday small talk. She’s all about facts and research.
“The treatment is simple,” she goes on to say. “We use tetrabenazine. Most of our patients respond well to it. The dosage has to be monitored closely, however.”
My rising hopes are suddenly smashed. After all the buildup, Dr. Holmes is only talking about another medicine. One more to add to the long list.
In a few minutes, the meeting ends abruptly when the doctor just gets up and walks out of the room, cutting off any more discussion. Not even a good-bye.
After another meeting with Dr. Holmes’s assistant, we stop off at a reception desk and are given a form to sign that lets us get the tetrabenazine, which, it turns out, isn’t usually legal to prescribe in the United States, except through a few special licenses, one of which Dr. Holmes has.
During the ride home we all sit in silence. Even with the name of yet another drug ringing in our ears, there is an air of subdued excitement, as there has been every single time we’ve gotten a new medicine or a new piece of advice. A faint ray of hope. Not much of one, as far as I’m concerned, but better than nothing.
Or maybe not.
Taking the Cure
Chapter 30
IT TAKES more than a week to get tetraben-azine, or TBZ, because we have to get it from Canada. Dr. Holmes made me think that it was an experimental drug, but a Web site I check says it’s been used in countries outside the United States since 1960.
It turns out it’s an antipsychotic created to treat schizophrenia, just like Risperdal.
Here we go again.
Mom calls Dr. Pressler to check on her experience with TBZ but gets her answering machine. By now, Dr. Pressler has moved too far away for us to see her in person, but she’s always there, returning our calls quickly, sharing results of medicines she’s prescribed for her thousands of Tourette’s patients, and telling us about new medicines.
The first night, I take my prescribed dose and fall asleep with an uncomfortable new feeling. My body is restless almost immediately, and I toss and turn continuously to find more comfortable positions. My tics are worse, too, but the high level of agitation is the bigger problem.
The next day, after we report my symptoms to Dr. Holmes’s assistant, he tells us to raise the dose.
That night, the restless feeling increases so much that my whole body starts bouncing around the bed, kind of like the girl in The Exorcist. As the agitation gets worse, I plead with my mother to make it go away. She tells me to try to wait it out, and I curse at her because she won’t help me. I curse at my mother? There’s another person inside of me, taking over.
She gives me a second dose of Benadryl to help me sleep, but two hours later I’m still jerking and twisting and bouncing up and down. I’m exhausted from the meds, but it feels like there are a thousand fire ants in my bloodstream. I want to jump out of my skin.
Another hour passes, and it seems like forever. I take a third dose of Benadryl and some extra Risperdal. Between the heavy sedation and all the energy I’ve used, I gratefully pass out at around three thirty.
As strong as I usually am, I don’t think I can take much more of this.
I am offici
ally in hell.
Chapter 31
THE NEXT MORNING, Dr. Holmes’s assistant casually tells us that my reaction is a well-known condition called akathisia. His advice is to wait it out until my body adjusts — otherwise we’ll never know if TBZ is what we’ve been looking for. How many times have I heard that about a new medicine? As a possible solution, he orders another increase in the dosage, saying that this will help me adjust more quickly. I don’t get why taking more of a bad thing can help, but he’s the doctor. And this is his advice.
The following day, Dr. Pressler calls back and tells us that she hasn’t prescribed tetrabenazine for me because it hasn’t worked for any of her other patients. She’s not sure of Dr. Holmes and her success in treating Tourette’s syndrome with TBZ, but she says that since everyone’s chemistry is different, there’s always a chance it could help.
Over the next few days, the medicine takes me to another level. During the daytime, when it wears off a bit, my agitation changes into a heavily drugged feeling, as if I’m living in slow motion. I sit in place for long periods, my eyes glazed over and my mouth hanging open. I actually drool.
I don’t know where I am in time and space, and I’m so limp that some of my tics go away. But something really bad is happening with my worst leg tic.
As I get up from my computer, I hop in place as I have before, but this time I hop on my heels. This makes it easy to lose my balance, and I fall backward, crashing into the French doors behind me and hitting my head on the floor.
My parents come running at the noise and find me unhurt. But I just lie there with no idea of what happened. I have a silly, embarrassed smile on my face because I feel so stoned. In my hazy state, I tell them I’m all right and apologize for falling. They help me up, but as soon as I’m standing, I hop and fall backward again. This time my father catches me before I hit the ground.
The doctor at the Stringer Clinic has the same answer to this as he had before: we have to stay with the program. We’ve gone too far to give up on TBZ. Unbelievably, he hikes the dose of the medicine again.
That night the akathisia goes beyond my ability to handle it. I writhe in bed, literally trying to scratch my skin off, screaming for my mother to please kill me. I can’t wear any clothes because they hurt my skin. I beg for more and more Benadryl, but even that doesn’t help until doses of other drugs I’m taking are added.
The daytime pattern continues, especially the feeling of being in the ozone layer. I go through the motions of living, moving slowly from place to place, trying to respond to things happening around me. But I’m in a total zombie daze. It’s like watching the world from a thousand miles away, from another level of reality, from someone else’s body.
One afternoon my father takes me to my favorite Chinese restaurant, and when the waiter places my meal in front of me, I just stare ahead with a long string of drool hanging down from my mouth. I imagine I’ll never forget the sad look on my father’s face as he watches me try to eat, to function on the most basic level.
I’m not living the life everyone else is living. I’m not here anymore.
That night I’m like one of those screaming patients you see in old movies, the ones getting electro-shock therapy in insane asylums. I tell my mother I want to die, I want her to kill me, and she’s frantic. Somehow I get through the night with more drugs.
When we report in to the doctors at Stringer, they finally agree that the treatment isn’t working. The tetrabenazine is decreased gradually so I don’t have more dangerous side effects.
In a day or two, the akathisia begins to go away, too. My vision clears, and slowly I become part of the world again. And my tics go right back to where they were.
Dr. Pressler isn’t surprised that the medicine hasn’t helped, but she is surprised to learn how high the doses were, even the first, which is probably why my body reacted so badly.
“Falling over backward is a classic symptom of overdose from drugs used to treat Parkinson’s disease,” she tells us.
The worst part is that there may have been no need for the painful hours I spent with akathisia.
“It could have been stopped quickly with Cogentin,” she says. “It’s a well-known antidote for Parkinson’s patients who overdose on tetrabenazine.”
Dr. Pressler has no idea why our new doctors didn’t tell us that. Her reaction makes me wonder whether they let my trial go on longer than it should have because they really believed it would work or because they were actually using me for research.
Whatever the answer, I was in a dangerous place because of this drug. When the akathisia was at its worst, I wasn’t in my right mind. I wanted to kill myself. If you had handed me a gun, I would have used it.
When it was all over, I was consumed by obsessive thoughts of getting even with the famous doctor and her hospital for what they put me through. I wanted to go back and tell them what they did to me, and to sue them and give the proceeds to the Tourette Syndrome Association. Of course, I had no idea if their actions justified a lawsuit. I just wanted to do something.
Yet, in the end, our family didn’t do anything. That’s the problem with having a condition as hard to treat as mine: there are only a few doctors who have a chance to help, so you can’t make them angry or burn bridges no matter what they do to you.
And that’s why when I talk about the famous Dr. Holmes, I don’t use her real name. As bad as her advice turned out to be, I never know when I might have to go back to her with another desperate cry for help.
Holding On, but Just Barely
Chapter 32
I CAN TELL by how quietly my mother and father are talking downstairs that they don’t want me to hear them, so they’re probably discussing me. They’re doing this more and more lately, especially after a bad day like today.
This afternoon I noticed my mother lying down next to our golden retriever, River. Mom’s head was pressed tightly into the dog’s chest, and she stayed that way for a long time. River always seems to understand what’s going on in our family. Once, when he heard my mother crying, he started to howl softly with her.
Today when my father walked in the door, Mom told him what had happened at school. He often comes home from long workdays to bad news about me.
I had seriously disturbed the class again, and one of the other parents had called the teacher to complain. My mother had to go to a conference after school to talk about what to do with me. My father got mad when he heard about it. He gets angry at the people who make things harder for me. I hope he’s not mad at me now.
Sometimes I think my problems will get to be too much for my mother and father to take, and that maybe they’ll become so unhappy they won’t stay together. I know this can happen, because it did to a few of my friends’ parents who didn’t have nearly as many problems as we do.
I’m also worried that Jessie doesn’t love me as much as she used to. She complains to my parents all the time now that they pay more attention to me than to her, especially when she’s having a hard time. Today Jessie’s best friend ditched her for no reason at all, and when she came home, she had to hear about my bad day before she could tell them about hers.
I think Jessie is having a harder time with me now than when we were younger because she has conflicting feelings about me. She still wants to protect me from anyone who makes fun of me, and a lot of times she tells off kids who are bigger than she is. But she’s also mad at me because I make it difficult for her to have friends and a normal life. I guess that’s what a lot of our fights are really about. It must be hard loving a brother who makes your life worse. Even so, most of the time she’s great to me.
I’m still awake, and after my parents have talked for a long time, I get worried and tiptoe down the stairs.
At the landing, I peek around the banister and see my father standing with his back to me. He has his arms around my mother, and he’s hugging her tight, and it makes me feel so good and warm to see them that way.
Then, when he lets
her go, I can she that she’s been crying. She wipes her eyes when she sees me and tries to make her face look like it’s smiling, but it isn’t. She takes me back to bed, saying there’s nothing to worry about. Mom tells me a joke and kisses me on the forehead, and I feel okay again.
One good thing, I guess, is that all of us have been living this kind of life for a long time. Even though bad things happen, we get over them somehow. We laugh and we cry and we fight and then we make up and tell one another I love you. A lot of sorrys and hugging and kissing and chasing River around the dining room table.
That’s my family.
Tsunami
Chapter 33
I’VE BEEN IN FRONT OF my computer for more than twenty hours now and I’m not even getting tired. I’ve studied courses on Internet marketing for up to a day and a half straight. Being compulsive has its advantages — sometimes, anyway.
Tonight, though, there’s something new building inside of me. It’s a feeling I’ve had before, but now it’s stronger and wants to bust loose. It’s like knowing you’re going to be sick and throw up: it’s just a matter of when.
It’s hard to believe, but I’m actually getting through middle school, even though I’m missing a lot of classes. This is mainly because of homeschooling and my ability to remember just about everything I hear in class.
The torture of tetrabenazine has finally worn off, but different parts of my body are still cutting loose at any given moment. At this point there’s a huge list of drugs that are in my bloodstream.