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(3) Knowledge is Power

The hall is silent as I slowly shut the door behind me, careful not to wake up my roommate. Though she is as much a stranger now as she was on move-in day, we coexist well. Double-checking that I have my key, I turn around and sling my backpack up onto my shoulders, hoping it will protect me from the day.

As I step outside I can smell the first hints of fall, though the temperature is still relatively warm and the humidity is a constant companion. I pass through my building’s parking lot as I walk to my bike— a less than glamorous form of transportation but appreciated all the same. Almost six weeks into classes now, I’ve become accustomed to not having a car and can bike to just about anywhere in less than ten minutes.

Besides, I like biking— it makes me feel strong.

Today’s ride is to the Duke Neurological Disorders Clinic about 15 minutes away. It irks me that the clinic is so close to the center of campus, I feel as though it should be miles away and sealed off with a warning “Caution: For damaged people only”. Its proximity suffocates me.

I can’t get away.

My heart feels heavy, and suddenly every rotation of the pedals requires extra effort.

I think back to my first appointment, a visit I would never have made if Carley had not practically dragged me there. The building was cold and sterile, offering little comfort and no answers. It seems ridiculous that such a clinical setting is necessary to determine my fate.

I still think this is all just a dream. After my aunt and uncle broke the news of my mom’s Huntington’s disease diagnosis, I spent the summer in a haze, unwilling to address the implications of this new information.

After that first day of obsessively researching the disease, I figured out just about everything I needed to know. 1) If my mom had it, I have a 50% chance of also having it; 2) there is currently no treatment or cure; and 3) it has been described as a combination of Alzheimer’s, Parkinson’s, and Schizophrenia. To sweeten then news even further, since I am still under 21, if I am diagnosed it will be classified as ‘Juvenile Huntington’s Disease’, which typically progresses more quickly and unpredictably.

That was when I tried to shut it all out, blatantly ignoring my aunt, uncle, and Carley as they tried to convince me to get the genetic test or at the very least talk to someone. I just wanted to pretend nothing had happened. That nothing had changed.

But everything has changed, and I can’t go back now.

That first appointment broke the dam I had built to contain my fears and questions, now I need to know— do I have the gene? How bad is this going to get? Will I even be me anymore? Am I destined to die before I’ve really lived?

I stop my bike outside of Carley’s building. The genetic counselor I spoke to during my first trip to the clinic told me that they highly recommend I bring someone with me to all of my appointments, usually a family member or close friend. Carley offered before I could ask. She also wanted to call my aunt and uncle and update them so that they could be here for me. I refused. I can’t trust them anymore, not after all the years of secrecy.

Carley is bundled up in a peacoat, boots, and scarf, not having adapted to a climate with real seasons quite yet. She takes the stairs two at a time, every breath forming a tiny puff of condensation in front of her. How does she always have so much energy?

I suspect she is trying to stay upbeat for my sake, I’m certainly doing a poor job of it.

She gives me a bubbly “Good morning!” as she unlocks her bike and rides over to meet me. A quick kiss on the cheek is followed with the usual ”How are you doing today?”

This small, seemingly benign question means much more than it suggests. Underneath those 5 words are a host of hidden fears. “How has your temperament been?” “Have you felt any more muscle stiffness?” “Have you had any chorea?” “Are you dying?”

I try for a cheerful “I’m good”, but can tell from the look on her face that I failed to mask my mood. I wish I could hide some of the fear, if only to make her feel better.

Trying to move past the moment, I suggest we get going, claiming that I don’t want to be late. Getting through the genetic testing process is the only way either of us has to cope, so I’m trying to be a model patient.

As we bike along, I ask Carley about her night.

“Oh, it was good. I spent most of it after you left working on that terrible essay for 18th century literature. I honestly don’t know why I thought this class was a good idea.”

“You’re becoming cultured remember?” I tease.

Culture-schmulture, if anything, I’m becoming dumber. All we talk about are dead white guys’ writing. Where the heck is the other 50% of the world? And what about a country outside of Europe and North America? Are you seriously telling me that the only substantial work to come out of an entire century was from like 15% of the world’s population?”

Unable to resist, I laugh at her rant. Not because she is wrong, but because it feels good to laugh.

She throws me a look that says ‘not funny’, but the smile afterwards tells me that she knows exactly what I’m thinking. Amazing really, seeing as I hardly ever know what I’m feeling or thinking anymore.

We arrive at the clinic and our laughter evaporates like a morning mist, the dread of what this appointment could mean settling in. Today is my neurological exam, during which I will be prodded and tested in order to determine if I am showing symptoms of HD.

It’s a little weird that they would put this exam before the actual genetic one, like some cruel preview of my fate. Either I get to live a normal life, or I’m receiving a death sentence. There is no third door to choose from.

I turn to Carley, “What if this goes badly?”

”If you’re showing symptoms you mean?”

“Yeah, what the heck else would I mean? That’s what we’re here for.”

Carley flinches. My brief and irrational frustration fades.

“I’m sorry. That was unfair.”

“It’s okay, I’m worried too,” she grabs my hand and suddenly I am calm.

“Thank you”, I smile gratefully, “well, if I’m symptomatic that means I’m gene positive. And… and… I don’t know if this is how I want to find out. But I do have to find out eventually. I just— I’m afraid.”

She pulls me in for a hug, “This is terrifying, and I’m not going to tell you that you shouldn’t be afraid because I know I am. But I’m here no matter what happens. I love you.”

“I love you too” I hold the embrace for another moment before letting go and looking towards the door.

“Alright let’s go in.”


I fidget in my seat waiting for the doctor to arrive, staring at a poster titled “Caring For Your Loved One”. It features an attractive middle-aged white couple; the husband seated with his wife embracing him from behind, both gently smiling.

Cool, I think, hugs are key, thanks for the advice.

The door opens and I’m surprised to see an older woman greet me with a smile, her eyes wrinkling the same way they had surely done thousands of times before.

“Hello, I’m Dr. Miller, you’re neurologist”, focusing in on me immediately, even though we have never met before.

“Hi, I’m Michelle. This is Carley,“ I introduce us, purposely leaving out any details about our relationship. This woman seems kind, but I’m not in the mood for any judgment today.

“It is very nice to meet you both, thank you for coming in as well, Carley”, looking at her now.

“Oh, yeah, of course,” Carley responds, surprised at the sudden attention.

“I suppose we should get started. But first I’d like to tell you a little bit about myself. It seems unfair that I get to know so much about you but you don’t know anything about me,” Dr. Miller explains.

“Um, okay, thanks,” I respond unsurely.

“Alrighty then, so my first name is Patricia, and I’m part of the team of neurologists, counselors, physical therapists, and nurses we have here, all of whom specialize in movement and memory disorders. I’ve been married for almost 20 years to my second husband, and I have two sons from my first. My eldest is 25 and my youngest is graduating from college this year. I did my undergrad at Pomona College and went to medical school at Johns Hopkins. I have two dogs that I dote on and I love to knit. Mmmm, those are the basics. Is there anything more you would like to know?” she asks us both.

“Uh no, no I’m okay. Thanks for, um, sharing,” I mutter.

“Of course! Like I said, you deserve to know who I am. Please let me know what I can do to make you feel more comfortable going through this process. So, when did you meet with the genetic counselor?” she asks, diving in abruptly.

“I met with him about a month ago, on the 31st”, I respond.

“And how did that go?”

“Well I guess it went fine, but to be honest it was mostly information I had already figured out”, I confess.

“That makes perfect sense. With the Internet nowadays, I’m sure you’ve done a lot of research already” she predicts.

“I mean yeah, I guess I have. I needed to know”, I reply.

“Yes, of course you did. So what are you expecting today?” she asks.

“Um, well I read that you’ll do some tests to check my neurological function and see if I am displaying symptoms yet. The counselor sort of told me the same, and also that if I have symptoms I can decide to stop the testing,” I answer.

“Right, that’s just about all of it. One other thing that is important for you to know is that if at any point you don’t want to know or do something— for example the test and results of today, or the blood test later on, you can always say no. Please don’t feel obligated to continue or find out something you don’t want to know. We want to make sure that you are completely comfortable with your decisions in this process” Dr. Miller expands, looking at me carefully.

“Alright, but if I’m showing symptoms that means I’m positive right?” I ask.

“Most likely yes” Dr. Miller responds.

“Okay, well let’s just do this. I want to know. It’s my body, and I want to know,” I say emphatically, Dr. Miller not the only one in the room I am trying to convince.

“Okay then, if you’re sure?” she probes.

“Yes I’m sure” I retort.

“Okay, then to begin we’ll do a simple motor test. It works like this, please hold up both of your hands and copy me,” she says as she raises her own palms to face me.

Quickly, I glance over at Carley; she smiles and nods but I can see concern in the way her smile does not quite reach her eyes. I smile back in an attempt to reassure her before turning back to face Dr. Miller’s upraised hands.

I feel like I’m confessing to a crime I didn’t commit as Dr. Miller touches her forefinger to her pinkie and nods for me to do the same.

 

 

 

 

 

 

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