I'VE READ MANY more books than you. It doesn't matter how many you've read. I've read more. Believe me. I've had the time.
In my white room, against my white walls, on my glistening white bookshelves, book spines provide the only color. The books are all brand-new hardcovers—no germy secondhand softcovers for me. They come to me from Outside, decontaminated and vacuum-sealed in plastic wrap. I would like to see the machine that does this. I imagine each book traveling on a white conveyor belt toward rectangular white stations where robotic white arms dust, scrape, spray, and otherwise sterilize it until it's finally deemed clean enough to come to me. When a new book arrives, my first task is to remove the wrapping, a process that involves scissors and more than one broken nail. My second task is to write my name on the inside front cover.
PROPERTY OF: Madeline Whittier
I don’t know why I do this. There’s no one else here except my mother, who never reads, and my nurse, Carla, who has no time to read because she spends all her time watching me breathe. I rarely have visitors, and so there’s no one to lend my books to. There’s no one who needs reminding that the forgotten book on his or her shelf belongs to me.
REWARD IF FOUND (Check all that apply):
This is the section that takes me the longest time, and I vary it with each book. Sometimes the rewards are fanciful:
• Picnic with me (Madeline) in a pollen-filled field of poppies, Lilies, and endless man-in-the-moon marigolds under a clear blue summer sky.
• Drink tea with me (Madeline) in a lighthouse in the middle of the Atlantic Ocean in the middle of a hurricane.
• Snorkel with me (Madeline) off Molokini to spot the Hawaiian state fish—the humuhumunukunukuapuaa.
Sometimes the rewards are not so fanciful:
• A visit with me (Madeline) to a used bookstore.
• A walk outside with me (Madeline), just down the block and back.
• A short conversation with me (Madeline), discussing anything you want, on my white couch, in my white bedroom.
Sometimes the reward is just:
• Me (Madeline).
MY DISEASE IS as rare as it is famous. It’s a form of Severe Combined Immunodeficiency, but you know it as “bubble baby disease.”
Basically, I’m allergic to the world. Anything can trigger a bout of sickness. It could be the chemicals in the cleaner used to wipe the table that I just touched. It could be someone’s perfume. It could be the exotic spice in the food I just ate. It could be one, or all, or none of these things, or something else entirely. No one knows the triggers, but everyone knows the consequences. According to my mom I almost died as an infant. And so I stay on SCID row. I don’t leave my house, have not left my house in seventeen years.