Feb. 2005: Day One
At 7 a.m. on the day our drug trial begins, a bus takes 15 research subjects from the opulent Westin Grand Bohemian to the functional Orlando Clinical Research Center, a trip of 10 minutes. Along with two women, I miss the bus by three minutes. Bad start.
Roger, the drug company’s ambassador, puts us in a cab and tells us not to worry.
We have flown here from 10 states, including Iowa, Maryland and Wisconsin. Three sisters came from Texas; a brother and sister, from Minnesota. Otherwise we are strangers with just three things in common: our nationality, our white skin, and the pockets of fluid that grow on our kidneys.
Each of us has inherited polycystic kidney disease, or PKD. A dominant gene caused cysts to form in and on our kidneys while we were in our mothers’ wombs. Those cysts grew larger. New ones sprouted. Sometime in our forties or fifties, the cysts will finally overburden our kidneys, causing them to fail. In order to stay alive we will have to submit to the thrice-weekly miseries of dialysis, unless we can find a new kidney from a generous loved one or an unrelated cadaver. Older relatives have shown us that transplants are risky, and immunosuppressant drugs are a drag.
We’ll spend nine days here, testing a drug that may spare us all that.
During my physical the doctor looks at my magazine and smiles. “Oh, we’ll remember you,” she says. “You’re definitely the only person for miles who’s reading The New Yorker.”
“Is that right?” I say. “I guess that explains the way you guys vote.”
“Whoa!” she says, sounding hurt. “We like the way we vote.”
I grimace. I’m reading that the U.S. secretly deports suspected terrorists to Egypt and Syria, in order to ensure that the suspects are tortured. The friendly doctor will never read that article. Neither will anyone she knows. All that is necessary for the triumph of evil is for good people to read nothing.
I meet two of my four roommates. They seem nice. All the men are in one room, a barrack with eight beds and a large TV. I change into our uniform: aquamarine scrubs. I wonder if I look like a doctor.
Next door, I attach my computer to one of three high-speed cables. A man whose gray hair is flecked with white talks to me. His study is ending today. He tells me that he needs to go back to school and finish his engineering degree.
“The trouble is,” he says, “I hate engineering!” He’s agitated, rocking on the balls of his feet. “But I’ve got to do it,” he says. “These experiments—this is no way to live.”
I wonder how many experiments he’s done. I don’t ask.
He says, “Well, I’m sure you know a lot of people who hustle, right?”
I’m not sure what he means, but I don’t want to seem like a snob. “Some,” I say.
It’s enough for him. He nods. “One of these days,” he says, “I have to get a job.”
“Me, too,” I say.
Using a loudspeaker in the hall, a staffer calls us to the treatment room. They take our blood pressure and give us EKGs. We have lunch. It’s chicken salad. We don’t like it.
As lunch ends we wonder when dinner will start. Four women begin to walk the halls for exercise. A circuit takes less than a minute. The rest of us read or talk on the phone. We can go outside once a day, but we don’t know when. I feel both lost and trapped.
For days we have avoided alcohol; caffeine, which means chocolate; medication, including aspirin; orange and grapefruit juice. I accepted all that. But I hadn’t planned on being stuck inside, where metal grills block the view.
I go to my room and am glad to find no one there. I lay down for a nap.
At 4:30 pm I hear voices outside the door. The people in my study may be going outside.
I get up and go into the hall. It’s empty.
Is that it? Did I miss my chance?
Images from a Ray Bradbury short story flash in my brain: “All Summer in a Day.” On Venus, it rains every day of the year but one. The story begins just before the sun comes out. Grade-school kids prank a classmate, putting him in a closet. Later the teacher takes the students outside. The clouds part. The kids play ecstatically. Then one remembers the boy in the closet. They run to get him. It’s too late. He won’t see the sun for another year. The rain falls again.
I hurry through the halls, looking for someone to help me. An African-American woman in the kitchen smiles at my anxiety, and leads me outside.
Most of my peers are playing a game: Two truths and a lie. You say two true things and one lie, and everyone tries to guess the lie. Ignoring the game, I pace the concrete courtyard. I can take no more than 15 steps in any direction. High walls block my view. A woman tells me, “You look like a caged lion.” I slow down, but can’t stop.
“Come on, Frank,” says the game leader to the man who led us outside. “Two truths and a lie.”
“Okay,” says Frank, his face deadly serious. “I’m a Marine Corps medic, I’ve worked here for two years, and … we’re going to keep staying out here.”
We laugh. He takes us inside.
We start taking the drug tomorrow.
[I always meant to continue this story, but Slate showed no interest and then I got busy and stopped pitching. If you’d like to hear more, please let me know.]