Everything, Everything
Page 45
The morning after I realized the truth, Carla took samples of my blood to the SCID specialist, Dr. Chase. We’re in his office now, waiting to be called. And even though I know what he’ll say, I’m dreading the actual medical confirmation.
Who will I be if I’m not sick?
A nurse calls my name and I ask Carla to stay in the waiting room. For whatever reason, I want to hear this news alone.
Dr. Chase stands when I walk in. He looks just like the photos of him on the web—older white man with graying hair and bright black eyes.
He looks at me with a mixture of sympathy and curiosity.
He gestures for me to sit, and waits until I do to sit himself.
“Your case,” he begins, and then stops.
He’s nervous.
“It’s OK,” I say. “I already know.”
He opens a file on his desk, shakes his head like he’s still puzzled at the results. “I’ve gone over these results time and again. I had my colleagues check to be absolutely certain. You’re not sick, Ms. Whittier.”
He stops and waits for me to react.
I shake my head at him. “I already know,” I say again.
“Carla—Nurse Flores—filled me in on your background.” He studiously flips through a few more pages, trying to avoid saying what he says next. “As a doctor, your mother would’ve known that. Granted, SCID is a very rare disease and it comes in many forms, but you have none, absolutely none, of the telltale signs of the disease. If she did any research, any tests at all, she would’ve known that.”
The room falls away and I’m in a featureless white landscape dotted with open doors that lead nowhere.
He’s looking at me expectantly when I finally come back to my body. “I’m sorry, did you say something?” I ask.
“Yes. You must have some questions for me.”
“Why did I get sick in Hawaii?
“People get sick, Madeline. Normal healthy people get sick all the time.”
“But my heart stopped.”
“Yes. I suspect myocarditis. I spoke with the attending in Hawaii as well. She suspected the same thing. Basically at some point in your past you probably had a viral infection that weakened your heart. Had you been experiencing any chest pain or shortness of breath when you were in Hawaii?”
“Yes,” I say slowly, remembering the squeezing of my heart that I’d willfully ignored.
“Well, myocarditis seems like a likely candidate.”
I don’t have any other questions, not for him anyway. I stand. “Well, thank you very much, Dr. Chase.”
He stands, too, agitated and seeming even more nervous than before. “Before you go there’s one more thing.”
I sit back down. “Because of the circumstance of your upbringing, we’re not sure about the state of your immune system.”
“What does that mean?”
“We think it’s possible that it’s underdeveloped, like an infant’s.”
“An infant?”
“Your immune system hasn’t been exposed to a lifetime of common viruses and bacterial infections. It hasn’t had time to get experience with fighting these infections. It hasn’t had time to get strong.”
“So I’m still sick?”
He leans back in his chair. “I don’t have a good answer for you. We’re in uncharted territory here. I’ve never heard of a case like this. It may mean that you’ll get sick more often than people with healthy immune systems. Or it may mean that when you do get sick, you’ll get very severely sick.”
“How will I know?”
“I don’t think there’s any way to know. I recommend caution.”
We schedule weekly follow-up visits. He tells me that I should take it slowly as I start to see the world—no big crowds, no unfamiliar foods, no exhaustive physical activity.
“The world isn’t going anywhere,” he says as I leave.
After the Death of
I spend the next few days searching for more information, for anything that will explain what happened to me and what happened to my mother. I want a diary with her thoughts laid out in legible ink. I want her madness clearly delineated so that I can trace its history and my own. I want details and explanations. I want to know why and why and why. I need to know what happened, but she can’t tell me. She’s too damaged. And if she could? Would it make a difference? Would I understand? Would I understand the depth of grief and fear that could’ve led her to take my entire life away from me?
Dr. Chase tells me that he thinks she needs a therapist. He thinks it might be a long time before she’s able to tell me exactly what happened, if ever. He guesses that she suffered some sort of a breakdown after my dad and brother died.
Carla uses all her persuasive powers trying to convince me not to leave home. Not just for my mom’s sake, but for my own. My health is still an unknown.
I consider e-mailing Olly, but so much time has passed. I lied to him. He’s probably moved on. He’s probably found someone else. I’m not sure I can endure any more heartbreak. And what would I say? I’m almost not sick?
In the end Carla convinces me to stay with my mom. She says I am a better person than that. I’m not so sure. Whoever I was before I found out the truth has died.
One Week A.D.
I have my first weekly visit with Dr. Chase. He urges caution.
I install a lock on my bedroom door.
Two Weeks A.D.
Three Weeks A.D.
My mom tries to enter my room, but the door is locked with me in it.
She goes away.
I draft more e-mails to Olly that I don’t send.
Who will I be if I’m not sick?
A nurse calls my name and I ask Carla to stay in the waiting room. For whatever reason, I want to hear this news alone.
Dr. Chase stands when I walk in. He looks just like the photos of him on the web—older white man with graying hair and bright black eyes.
He looks at me with a mixture of sympathy and curiosity.
He gestures for me to sit, and waits until I do to sit himself.
“Your case,” he begins, and then stops.
He’s nervous.
“It’s OK,” I say. “I already know.”
He opens a file on his desk, shakes his head like he’s still puzzled at the results. “I’ve gone over these results time and again. I had my colleagues check to be absolutely certain. You’re not sick, Ms. Whittier.”
He stops and waits for me to react.
I shake my head at him. “I already know,” I say again.
“Carla—Nurse Flores—filled me in on your background.” He studiously flips through a few more pages, trying to avoid saying what he says next. “As a doctor, your mother would’ve known that. Granted, SCID is a very rare disease and it comes in many forms, but you have none, absolutely none, of the telltale signs of the disease. If she did any research, any tests at all, she would’ve known that.”
The room falls away and I’m in a featureless white landscape dotted with open doors that lead nowhere.
He’s looking at me expectantly when I finally come back to my body. “I’m sorry, did you say something?” I ask.
“Yes. You must have some questions for me.”
“Why did I get sick in Hawaii?
“People get sick, Madeline. Normal healthy people get sick all the time.”
“But my heart stopped.”
“Yes. I suspect myocarditis. I spoke with the attending in Hawaii as well. She suspected the same thing. Basically at some point in your past you probably had a viral infection that weakened your heart. Had you been experiencing any chest pain or shortness of breath when you were in Hawaii?”
“Yes,” I say slowly, remembering the squeezing of my heart that I’d willfully ignored.
“Well, myocarditis seems like a likely candidate.”
I don’t have any other questions, not for him anyway. I stand. “Well, thank you very much, Dr. Chase.”
He stands, too, agitated and seeming even more nervous than before. “Before you go there’s one more thing.”
I sit back down. “Because of the circumstance of your upbringing, we’re not sure about the state of your immune system.”
“What does that mean?”
“We think it’s possible that it’s underdeveloped, like an infant’s.”
“An infant?”
“Your immune system hasn’t been exposed to a lifetime of common viruses and bacterial infections. It hasn’t had time to get experience with fighting these infections. It hasn’t had time to get strong.”
“So I’m still sick?”
He leans back in his chair. “I don’t have a good answer for you. We’re in uncharted territory here. I’ve never heard of a case like this. It may mean that you’ll get sick more often than people with healthy immune systems. Or it may mean that when you do get sick, you’ll get very severely sick.”
“How will I know?”
“I don’t think there’s any way to know. I recommend caution.”
We schedule weekly follow-up visits. He tells me that I should take it slowly as I start to see the world—no big crowds, no unfamiliar foods, no exhaustive physical activity.
“The world isn’t going anywhere,” he says as I leave.
After the Death of
I spend the next few days searching for more information, for anything that will explain what happened to me and what happened to my mother. I want a diary with her thoughts laid out in legible ink. I want her madness clearly delineated so that I can trace its history and my own. I want details and explanations. I want to know why and why and why. I need to know what happened, but she can’t tell me. She’s too damaged. And if she could? Would it make a difference? Would I understand? Would I understand the depth of grief and fear that could’ve led her to take my entire life away from me?
Dr. Chase tells me that he thinks she needs a therapist. He thinks it might be a long time before she’s able to tell me exactly what happened, if ever. He guesses that she suffered some sort of a breakdown after my dad and brother died.
Carla uses all her persuasive powers trying to convince me not to leave home. Not just for my mom’s sake, but for my own. My health is still an unknown.
I consider e-mailing Olly, but so much time has passed. I lied to him. He’s probably moved on. He’s probably found someone else. I’m not sure I can endure any more heartbreak. And what would I say? I’m almost not sick?
In the end Carla convinces me to stay with my mom. She says I am a better person than that. I’m not so sure. Whoever I was before I found out the truth has died.
One Week A.D.
I have my first weekly visit with Dr. Chase. He urges caution.
I install a lock on my bedroom door.
Two Weeks A.D.
Three Weeks A.D.
My mom tries to enter my room, but the door is locked with me in it.
She goes away.
I draft more e-mails to Olly that I don’t send.
