Against Medical Advice (7 page)
Read Against Medical Advice Online
Authors: James Patterson
THIS IS HEAVEN for me.
My dad and I are out so far on the lake that I wonder if we can ever find our way back. We’ve definitely been going for more than a half hour. The sun has set, and the golden sky is the only thing lighting up the water. If we wait too much longer, we’ll be riding in the dark.
I’m the one who has taken us out this far from shore; my father is just following me. I can tell he’s nervous about being in such deep water. Even I have to admit this water is very weird. It feels alive with things moving and wriggling under the surface like huge fish. The strangest thing is that although there are strong waves, there’s no wind at all.
The surface swells have valleys in between that sometimes take us out of sight of each other until we rise again. When I get caught halfway up the side of a swell, it feels like the Jet Ski is going to tip over.
My father must be feeling it worse than I am. He keeps staring at the sky and his watch — although when I look back at him, he waves at me as if he’s happy to be here.
Soon the sky is so dark that even I can feel a sense of danger approaching. My father motions to me, and I drive over to where he is. The water has now become almost motionless. We gently bob up and down with the sides of our skis touching.
“We have to go back now.”
I nod in agreement.
The current catches hold of our Jet Skis for a moment. It gently turns us side by side until we’re both looking out into the horizon, now only a thin slice of orange through the trees. In the stillness of a world that belongs only to us, I feel endlessly grateful toward my father. I don’t know any other fathers who would have done so much to make this dream happen, or put up with me day after day.
“Thanks for doing this, Dad.”
“I love you, Cory.”
Then we slowly head back.
Ups and Downs
OF COURSE, for every good time, another bad one isn’t far off. That seems to be Cory’s Law or something.
We’re driving to one of the best hospitals in the country for people who can’t control their body movements. Suddenly I don’t feel so alone.
I can’t believe there’s an entire hospital for people whose bodies move in unusual ways. I wonder what the other patients are like, and if there is anyone there who does stranger things than I do. I doubt it very much.
I’m coming here because in recent months middle school has become overwhelming, and I’ve started missing whole days at a time. I’ve even stopped playing baseball.
Risperdal has become my doctor’s main weapon in the battle against my mind. It’s calming me down and has stopped a lot of my wild behavior, but I’m paying a price.
At one and a half pills, I developed a new tic of head twisting and foot tapping in sequence. My weight had already gone up about forty pounds.
At two and a half pills, the foot thing stopped, but my tics became wilder and more unpredictable than ever.
Then came three pills. And four.
Suddenly I’ve become afraid of everything I used to like. I’ve always loved the ocean — the bigger the waves, the better. Lifeguards have had to order me out of the water after everyone else has left because of undertow or rip currents. With the increase in Risperdal, I’ve become afraid to go into even the calmest water. I’ve also started to suffer from vertigo and was so terrified of taking the ferry to Martha’s Vineyard that I almost ruined our family vacation. I heard Dad saying to my mother that Risperdal took away my courage.
Still, in the hope that Risperdal would eventually help, we got up to six pills a day, a dose that would make most people catatonic. One time my father accidentally took a single pill thinking it was something else, and he slept almost all day.
The high dose calmed me down enough to stop me from bouncing off the walls, but I began to shake my head so hard I was sure I’d damaged my brain. The increased dosage also shot me up to nearly 230 pounds, a lot for somebody who’s five foot seven. I was afraid of doing anything that had the potential to hurt or scare me. And that’s when enough became enough.
The decision to start taking me
off
Risperdal was harder than the one to put me on it. Internet chat rooms are full of horror stories about the physical pain of withdrawal from this drug, even when it’s taken away a little at a time. And the accounts are all true. There were days when I screamed, and cried, and just wanted to die. My depression deepened, and I began to believe that the only purpose of my life was to be in pain.
Given how bad the withdrawal was and the fact that Risperdal had at least helped my behavior, I
had
to start back on some of it again. We also tried it in combination with old and new drugs such as Orap — which made me totally wild — and Zoloft and Klonopin. So many that I can’t remember them all. And nothing helped.
During this period, out of desperation, my parents found a chiropractor two hours away in Connecticut who said he could help my movement disorder by snapping a part of my upper spine. My father was worried about that and asked the chiropractor to demonstrate it on him. It was such a violent snap that my father said he actually saw stars, and he decided it was too risky for me.
After that, we found an unusual environmental allergist in the southern part of our state. He believed that my problems were caused by ingesting the wrong foods or chemicals, and that if he could figure out what they were, he could fix me. He may have been right, but I’ll never know. He wanted me to go on a diet that was too strict to even try. With Risperdal making me hungry all the time, and with eating now an obsession, the thought of losing my favorite foods was unbearable.
The most extreme thing we almost tried came up while we were on vacation in Florida. A social worker by the pool noticed my movements and introduced herself. She said that I should try
swimming with dolphins
because they had healing powers that could take away my Tourette’s. It sounded crazy, but she seemed pretty smart. My mother tried to set it up, but all the time slots were filled. Otherwise I would have gone for the swimming-with-dolphins treatment.
Which explains why I’m here today, turning onto the side street that leads to the Stringer Clinic for Neurological Movement Disorders.
It sure sounds like my kind of place.
Hope Against Hope
AS MY PARENTS and I travel up the elevator to the third floor to see the doctors, my tics get the message and shift into high gear. The doors open onto a long, narrow waiting area with a single wooden bench that runs along one wall.
It’s before nine a.m., so the glass door that leads to the inner office is still locked. We’re always early for these appointments. I guess that’s because we’re always so hopeful.
We sit and wait in silence. My father is thumbing through old magazines; my mother is trying to look optimistic, as usual planning to spend her whole day with me. Since my head started shaking all those years ago, she’s given up her own business, writing, and any thought of a career.
The next time the elevator arrives at our floor, a teenage boy comes out with a condition no one would believe unless they saw it for themselves. My first thought is that he must have dropped something and is trying to pick it up.
But as he leaves the elevator, he doesn’t stand. Instead, he moves forward like an animal. He places both hands ahead of his body on the ground and keeps them there until his legs catch up. This allows him to take another stride. Amazing as it seems, this must be how he moves all the time and why he’s here. This is his movement disorder, as big an understatement as there has ever been.
After three steps, he jumps up on the bench and swings his legs around to face forward. He does this so effortlessly it’s clear he must have done it a thousand times.
Once he’s settled on the bench, he looks straight ahead without checking our reactions. That’s something I totally understand. I’ve learned how
not
to see people staring at me, too.
Not wanting to embarrass him, I study him out of the corner of my eye. Sitting, he appears to be completely calm and normal. He’s older than I am by five or six years, which would make him about eighteen. He’s good-looking, with intelligent eyes.
His mother is showing a lot of self-control, too. My heart goes out to both of them. I can’t imagine what it’s like to get up every morning knowing that some power you can’t control will force you to move around like a gorilla. All he probably wants to do is just stand up straight. How cheated he must feel, how he must hurt inside. I wonder if he ever runs into anyone worse off than himself, like I just have. I don’t think I could survive what he has, but I guess I’d find a way.
I’ve thought about what a place that treats movement disorders would look like. I pictured the laboratory in
Frankenstein.
In reality, the building is like a large city hospital, all cement and windows. The closest parking is a few blocks away, so by the time I hopped, skipped, and jumped to the front door, I was tired out, and the day hadn’t even started yet.
My mother has told me that the Stringer Clinic is one of the best hospitals in the world for research into unusual body movements, especially Parkinson’s disease. Since I’m beginning to believe that any cure for what I have will eventually have to come from me, I’m mainly here to please my parents.
Our appointment with the well-known Dr. Holmes has been a great accomplishment for my mother. At first they told Mom that the doctor was too busy to see me, but when Mom described how severe my movements were and started to cry, they agreed to make room in the doctor’s busy day.
This is a truly depressing thought. Being able to attract the attention of someone this famous only clues me in to how extreme my case must be.
DR. HOLMES SEEMS TO BE involved more in research than in the actual treatment of patients. Her biography on the Internet is very impressive.
In a short time, I’ll wish that I’d never heard of her or her hospital. I’m about to learn the meaning of the phrase
living hell.
In theory the hospital’s advanced research and treatments for Parkinson’s disease are important for me because that illness also causes involuntary movements. Like Tourette’s, Parkinson’s has something to do with two chemicals the brain produces, dopamine and serotonin. We’ve been told that Dr. Holmes has had great success treating Tourette’s patients, too.
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.
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.