I smile and nod, and he smiles back. It’s like watching the image I’ve created inside my mind of this young man, built out of bits and pieces of stories and interviews and writings and photos, come magically to life. It is easy to like him, and I do like him, right away. Suddenly, the once invisible patient who has no voice lifts his hands to speak.
Whitney points to me with his index finger, then curls it down to meet his thumb creating an O that he crosses with his left index finger creating a Q.
“Question?” I ask. He nods.
With pleading eyes he shows how desperate he is for me to understand, for others to understand, what it’s like for him lying in his bedroom day after day, year after year, sometimes lacking enough energy to lift a finger to press the button by the side of his bed to call for help. Growing agitated, he reaches out and grasps invisible bars in both his fists and pounds them into place evenly spaced two-by-two around his bed. “Your life is a prison?” I ask. He nods. His head flops back, his eyes roll up in his head, and his mouth drops open. “You’re like a corpse?” He nods. For many, many hours of many, many days. He pinches his white skin. He’s not invisible. He’s all too real.
“What do you do while you’re lying in your room? Do you meditate?” I ask. He shakes his head no. He doesn’t have energy to meditate. He spends most of each day using what bits of energy he has to control the pain of digesting the liquid food that gets pumped into his body traveling through his digestive system thick and slow like cement. He sleeps very little. He has frostbite on his belly from the ice packs that manage the crippling pain through most of the day and into the night. He touches the skin on his arm again and grimaces. It hurts to be touched? He nods, then spells out A L O N E, writing on one of the soft brown blankets that traveled with him in the ambulance from home. Our eyes glisten with tears. He plasters his face with a mask of fear, his mouth frozen in a silent scream, then spells out another word on the blanket, P A N I C, and my breath catches as I feel a fist of panic punch into my own gut.
Whitney touches the gray in his beard and shakes his head. He has lost so much time. He’s missed so much. Rock bands that he might have loved. Photographs he could have taken. Stories he could have told. Elections he might have campaigned for. He’s missed the deaths of loved ones, and their births. He’s missed romances, and marriage, and children. He missed his sister’s wedding day. His hopes lie with his dad. He nods as he spells it out on the blanket: D A D. Then he spells out: H E R O. His dad will figure it out. He draws a line across his throat and shakes his head. No suicide. It’s not an option. He’s living for the many others out there sick like him. If he can continue on as sick as he is, other ME/CFS patients will too. Suicide is far too common within his community, and he wants to help stop that.
“You can’t talk, you can’t eat, you can’t listen to music,” I say, sympathizing. At the mention of music, his beautiful face crumples into creases, rivers of grief. A sob escapes his mother.
But then he recovers yet again, and he continues on. This is just part of his story. It’s important the rest of the story gets told too. Yes, Whitney has lived through years of hell trapped inside his broken body, but his life wasn’t always like this. He was an adventurer and an artist. He had girlfriends and a favorite dog and loved ice cream. He never felt anxious or panicked before he got sick. He shakes his head. He starts to explain. In his cupped hands he holds the sphere of an invisible Earth.
“You traveled the world,” I say. He nods.
I tell him I know of his travels. I know that he visited Jamaica and India, Ecuador and Guatemala, that he campaigned for Barack Obama during his presidential campaign, and that he won photography awards. That he loved hiking and nature and tending his flower gardens. I tell him that I will write about his adventures. There would be gaps in the story, but I’d work to create snapshots of his past life as best I could with words. The desperation in his face changes to some semblance of relief. And he smiles, the same crooked smile his dad sometimes has, his eyes bright.
He draws circles in the air with his finger. A bicycle? His head shakes no. A moped? No. A motorcycle? Yes, he nods vigorously and grins. “They told me you rode a motorcycle through the Himalayan mountains.” His eyes crinkle into a smile. You see? I don’t want to be here, his face says. I want to be far away.
Excerpted from The Puzzle Solver: A Scientist's Desperate Quest to Cure the Illness that Stole His Son by Tracie White with Ronald W. Davis, PhD. Copyright © 2021. Available from Hachette Books, an imprint of Hachette Book Group, Inc.