Chapter One
Private Medical Practice
Silver Spring, Maryland
June 2017
I'M WAITING IN THE EXAMINATION ROOM. I've moved from the exam table to the plastic chair at its side. I feel like I have more fortitude here. It's a little more familiar and less lonely than being elevated and exposed on the exam table. My mom is still in the waiting room. I didn't really think it would best for her to be here. I mean, Jesus, dad only died a year and a half ago. But what if it's positive? I wouldn't be able to drive myself home after that. And I couldn't ask a friend. It's just ... too much. Too personal.
I also moved to the chair because every time I moved on the table, every fidget, every deep breath, caused that damn paper to crinkle, like a mocking echo of my nervousness. A refrain to my thoughts. I decided I could do without the added exclamation of the too-loud crinkle in the too-quiet room.
My thoughts circle around and around, only pausing when I wonder how much time has passed. I refuse the temptation to check my phone, but then lose the fight to keep my eyes off the clock on the wall. It's been three minutes. Goddamn, but the brain can think a helluva lot of thoughts in three minutes.
Happy birthday to me.
My name is Enya. I'm 18. Newly minted. Just a couple weeks ago, actually. To most kids, that means another degree of freedom. Moving out of the house, entering official adulthood, starting the rest of their lives, maybe beginning the independence of college. To me, it means I get to take a test.
A genetic test.
I've been waiting my entire life for this test. No, I've been waiting my entire life for the results of this test. And I can wait a little longer. I think of not looking at the clock and end up looking at the clock. Another minute has passed.
Are these my last minutes of freedom or the beginning of freedom? The shadow of a death sentence will either become real or dissipate.
My eyes drift to the clock again. Thirty-two seconds have ticked by.
I focus on benign facts. Did you know that about 300 million cells die every minute in our bodies?
And that we replace about 48 million cells a minute?
Or that every few years most of our body has recreated itself?
Or that most of our body is made up of stardust? Everything in our bodies originates from stardust, which is still falling and still recreating us. There’s something beautiful in the impermanence of us from the eternity of stars. I wish that thought could bring me the reassurance it usually does.
Did you know that I want to be a doctor? I know exactly the kind, too. I want to do Integrative Medicine. Yeah, all that kooky stuff. I love it. I really believe I've got my head screwed on a little tighter than my mom does since my dad died last year. I credit my getting acupuncture and homeopathy. People know it works, too. That's why it's so popular. I'm gonna be part of the movement that brings it to the forefront.
Despite waiting for it, the double rap on the door startles me, and Dr. Yee strides in before I can recover. I could have chosen a different doctor to tell me my fate. A genetic expert in a comfy conference room. But Dr. Yee is my family doctor who’s a special combination of straightforward and kind, and I trust her. She grabs the black wheeled stool and sits, leaning onto the examination table, facing me. There is a computer screen hiding my medical records beside us, but she doesn't log in. I want her to. In my mind — I've prepared by imagining this playing out, and I used our prior visits as fodder for my fantasy — she logs in. She shows me what it says. Sometimes it's printed out; in my fantasy that usually doesn't bode well.
She is staring at me now and I desperately, unreasonably, want her to show me the computer screen. I don't want her to tell me directly. Give me a buffer, let the windows to my soul have some privacy. But the only shutters to my eyes are my eyelids, and my face feels frozen, eyes wide.
I observe a part of my brain that is having its own conversation, that's analyzing all her mannerisms, like a poker fiend making bets. Is that normal? I've had this doctor for as long as I can remember, and she knows me. And I know her. And she seems extra doctor-y today. I cannot marshal my thoughts, and a group of them tangent off, ping-ponging into a future of preordained death. Other thoughts perseverate on the computer screen, while the background conversation of Dr-Yee-is-wearing-sunshine-yellow-today-what-does-that-mean distracts me from her words.
She leans even closer and paper crinkles. "Enya, I know you are prepared for any answer. You've had extensive counseling."
I've had, and I'm not. My dad had Huntington’s disease. It’s a fatal disease that’s passed on to your kids. His mother had it and he had a fifty percent chance of having it, just like I have a fifty percent chance. My dad decided not to get tested, but I want to know. So I had to go through a lot of counseling to get tested. Since there’s no cure. It’s not a pretty way to go, but I’d like to prepare if I can. But I’m not prepared for this like I thought I would be.
It's like when my mom gets her mammogram and then freaks out until the test results come. If there's cancer, it's been there. It didn't magically appear on the day of the mammogram. The test just brought the possibility front and center and she's out of her mind with worry until she gets the results. There's something in the knowing that makes fear manifest. Ignorance is bliss.
So I’m here, willingly giving up my bliss, and freaking out.
Because my dad started having symptoms on top of a midlife crisis and ended up killing himself.
Because the knowledge catches up to you. It would be better to prepare. Dr. Yee said I’m prepared.
"You are prepared for this," she repeats. The exam table paper crinkles sound their exclamation point, now like a cheerleading section, but I don't need an audience. She's staring, and I think she expects me to nod. I'm still frozen.
"Enya, it's positive."
Chapter 2
THE BOTTOM DROPS OUT and there's a roaring in my ears. I think I'm going to throw up and I don't care. I couldn't move if my life depended on it. What life? Oh my God. Oh my God.
She reaches out and grasps my hand, a tether keeping me from falling further into the abyss. She's modeling deep breaths and gently squeezing my hand and her eyes are trying to catch mine.
"This isn't the death sentence it used to be. We have great treatments for the symptoms."
OhmyGodOhmyGodOhmyGod. She's got to be wrong. Every test has its false positives, right? OHMYGODOHMYGODOHMYGOD!
"Enya, look at me." My body registers her words and follows her command without the compliance of my mind. Her kind brown eyes hold me steady. She hasn't moved, hasn't changed except to clasp my hand, since she first sat down. "Enya, take a deep breath in. And let it out." I siphon in air through stiff lips. I feel like a scarecrow, a mishmash of ill-fitting parts about to topple down. I'm shaking. My eyes are leaking. Deep breath, she is saying. My breath is a ragged and staccato in and out, like I'm learning how for the first time. I feel if I stop this breathing I will fall apart. I realize I am squeezing her hand when wetness plops on our grip. Deep breath. The echo of her words is resonating in my mind, like sounds heard under the ocean, registered but not received. Breath, breath, -athhh, -thhhhHH.
Eventually, in the quiet of this rhythmic space, I see her again. Her image blurs, I blink a tear free, and I see her again. She squeezes my hand once more.
"Enya, you are the same person you were when you walked in that door."
We've talked about this. She's repeating things we've talked about. Like my wooden body, a wooden automaton mind numbly clasps onto the concept and holds it close. I nod. The ocean spills from my eyes, a river down my face. But I'm granite now, my face, my limbs, heavy, frozen, immobile. Cold and detached. Only a small section of my mind is whirring, not enough to run this body, but enough to grasp onto each lifeline of thought she feeds me.
"There is no one hundred percent in medicine. We have best guesses. And our best guess is that you will be able to have a full and complete life. You can have a career and a family if you want." Yes, we have talked about this. I thought I was prepared. I thought I had taken it all to heart. But somewhere, some dark unconscious passage along the way, I skirted away from letting the possibility fully sink in, like thinking about it would tempt fate. I thought I was prepared, but this... this is riding out a hurricane on the makeshift raft of a door that is all that's left of the house you knew.
She goes on, but trivial thoughts of my college applications occupy my stupid mind. It’s deteriorated into a hamster on a wheel, scurrying round and round. What a waste of application fees. What a waste of time editing all the application essays. What a waste...
My brain sounds an alarm as it hears the word “anticipation.” This is medicalese for “it could get worse with each generation”. Such an ill-fitting, stupid word to take the place of “poor prognosis.” I remember talking about this too. It's because it was my father that had it, not my mother, that I might have it worse and symptoms might start earlier.
Wow, the measure of good now is like a ruler through bug eyeglasses, some fractured thing repeating and magnified in its power over me, mocking what I used to know and how things used to be.
She mentions my mother and I surface from the abyss of my thoughts. Do I want her to come in the room with me now? There is an appointment with the counselor to go to. We earmarked the time, but I'd hoped we wouldn't use it. It's strongly recommended I have a loved one with me. I fought it before, with all the hallmark independence of youth, but I see the sense now. I force my wooden head to nod.
Dr. Yee cracks the door open and talks to someone in the hall. She doesn't leave me, she doesn't let go of my hand. I feel like an invalid with her concerned vigilance. I will never know what it's like to be old, but maybe I am getting a glimpse now. What weird thoughts. I think I am losing my mind. Maybe this is like being old too. I guess I'll never know.
