An Opportunity

This is an archived post that was originally published at beyond-terminal.com

Included in the excerpt below is one of the more traumatic memories I have from the time that I was sick. At this appointment, I was treated like a specimen. Something to be scrutinized. Something sub-human.

Dr. Snow, my neurologist, invited his cadre of interns to this particular appointment. It was a complete surprise. To add insult to injury, Dr. Snow stated that one of these interns was going to record me using a video camera while I underwent the exam. There was no thought about how an 11-year-old would react to this.

I was traumatized by this appointment. How could Dr. Snow have acted so callously? Did he think I wouldn’t be alive much longer so the scientific advancements gained from studying me far outweighed any emotional toll I experienced?

How do we see and treat others, especially those with physical or cognitive limitations?

__________

Below is an excerpt from Chapter 2, “An Opportunity.” Note that my parents and I are just leaving the neuro-ophthalmology clinic where I had my eyes dilated for some tests.

As my parents and I walk down the white hallways to the neurology clinic, I find myself hoping that no one is sitting on the blue couch in the waiting room. There’s nothing really special about this couch. It’s old and even has a couple of stains on it. But it’s where I sit pretty much every time. Nine out of ten times. There’s not much that I can count on these days, and I want to know that I can count on this one thing. That this space will be open. When we reach the waiting room and I see that no one is sitting at the couch, I decide that today will be a good day. Or at least a day without more bad news.

I sit down on the crack with my parents on either side of me, just the way I like it. While my parents talk about the timing of Peter’s basketball game later that night, I stare at the cover of the magazine that’s on the coffee table and start to panic. Why is everything so blurry? What’s going on? Is this because of those eye drops? Or is this something more permanent? My palms start getting moist. Then they start sweating. Like really sweating. I didn’t know that palms could even sweat like this. I place my hands palms-down on my jeans and hope the denim will absorb some of the sweat. And then I find myself hoping that the denim is dark enough that the sweat marks won’t be noticeable when Blue Nurse calls us back.  

We usually don’t have to sit for long before Blue Nurse or one of her look-alikes brings me back for my vitals. My anxiety shifts from my hands to the time as the minutes pass. What time is it? Why isn’t Blue Nurse here? We’ve been sitting here for over five minutes, the other patients have been called back, this is different than normal, this is different. What’s going on? It’s then that I hear footsteps — lots of them — coming down the tiled hallway. My breath catches in my throat. This isn’t good.

I look up to see Dr. Snow with four young-looking doctors, all in white coats, standing around him. Where’s Blue Nurse? I want her back. Please bring her back.     

“Nancy, John. And Megan,” The Doctor says, nodding at us as he says our names. “I have some interns with me. I thought we’d have your appointment in the waiting room today so they can observe Megan.”

My dad places his hands on his knees and leans forward. “What do you mean?” he asks.

“These doctors haven’t seen someone with Hallervorden-Spatz before. I thought it’d be helpful for them to see Megan in person.”

These last six months I’ve learned to beware of everything around me and to listen carefully. It’s true that, for the most part, I’m afraid to know what’s wrong with me. But then there are other times when I think, just tell me and don’t lie. Since my diagnosis, I’ve found out that only one to two people out of a million are diagnosed with Hallervorden-Spatz and that most die in childhood or early adulthood. As for the dying part, I heard my mom say this over the phone to a friend when she thought I was asleep. By being a good listener, I’ve also learned that The Doctor has never seen someone diagnosed with this disease this late in life. When I first heard this, I started to wonder how much time I have left. A couple years? Months? Just weeks? Whenever I find myself thinking about this, I distract myself with numbers. I’ve gotten really good at skip counting and can keep doing this until the anxiety gets better. Or I get tired.

“You didn’t think to tell us about this before the appointment?” My dad stands up and puts his hands up in the air.

“John, you know this is a teaching hospital,” Dr. Snow reminds him before adding, “We have a video camera for recording our session with Megan. I assume that’s okay?”

No, none of this is okay. Not the diagnosis. Not the other people dressed in white coats watching me. Not the videotaping. I look to my parents and hope that the look on my face tells them what I’m thinking.

I can tell that my mom does, because she nods at me, stands up, and crosses her arms. “I don’t understand how this is helpful for Megan.”

“By videotaping Megan, other doctors will have a chance to learn more about Hallervorden-Spatz,” Dr. Snow says. 

I don’t know what I’m going to be asked to do yet, but I know it will be embarrassing. My body doesn’t act normal anymore. Before I got sick, I just went about my day doing things without thinking about them. Like, when I wanted to eat some cereal, I just grabbed a bowl from the cabinet, poured the Cheerios into the bowl, and ate. It was that easy. Now things are totally different. I have to remind my body to put one foot in front of the other in order to walk over to the cabinet. I need to tell my hands what to do so I can open the box of Cheerios. And on and on and on. It’s like I need to have a list of instructions in my head for everything I do, I need to constantly remind myself what’s on this list, and then I have to wait for my body to respond once I’ve told it what to do. To think that anyone could watch a videotape of me thinking through everything before I do it? It makes me want to throw up. I don’t say a single word to fill the awkward silence though.

“Well,” Dr. Snow continues. “I guess the opportunity arose to do this.”

Opportunity? I’m now an opportunity? I swallow down the Cheerios I had for breakfast. I can’t vomit now. I can’t.

My parents shake their heads. It appears as though they feel stuck though.

“So,” Dr. Snow says again. “Should we get started?”

The Doctor walks over to me, and I look up at him with no expression on my face. Turn your lips up, I remind myself. Don’t frown. Don’t look angry. 

“All right, Megan, we’ll just do some of the tests we normally do, okay?” The Doctor says.

I nod. I still don’t like any of this, but at least I now know that I’m not going to be asked to do anything out of the ordinary.

It’s at this point that Dr. Snow tells one of the white coats that he can start videotaping. White Coat #1 picks up the big video camera, places it on his shoulder, and peers at me through a little lens. He’s so lucky that he can hide behind that big thing.

The Doctor then sits on the blue couch next to me. That’s where my dad is supposed to sit, not you, I want to shout at the top of my lungs.  But I just hold my breath, desperate to get this moment over with.

“Why don’t we start with the finger tap test?”  Dr. Snow pauses when he sees me staring ahead. “Megan?”

I’m so upset about so many things right now I don’t even know where to begin. But all these eyes are on me, and I don’t see any way of getting out of this except by doing what The Doctor asks me to do. So I grit my teeth and do the stupid finger test that I usually do behind a closed door: Thumb to pointer finger — tap, tap, tap — all the way to my pinky finger and back again.  

I look up in between tests to see the other three white coats watching me, one peering over his glasses. Could this get any more humiliating? A year ago I would’ve laughed if someone had asked me to do these silly exercises. I could’ve done them in my sleep.  

Once I do a few more of the regular tests, Dr. Snow asks me to move to one of the chairs by the table. Why does he want me to do this? This seems different. He promised that we would just do the normal stuff. What if I just sit here and pretend like I didn’t hear him? I think.

“Megan?” Dr. Snow says again.

Guess not. I hold back my sigh and then run through the instructions in my head for how to get up and walk the ten paces over to the chair. Left foot, right foot, left foot, right.  

“I know this isn’t something we usually do,” The Doctor says once I’ve sat down. “But since we have the camera, I’d like you to write your name.”  

Please not that. Anything but that. Writing has probably become the most difficult thing of all. I don’t know why. Maybe because there are so many steps to it. The instructions that I’ve come up with are much longer than they are for eating a bowl of Cheerios or walking, for example.

Dr. Snow takes a pen from the pocket of his white coat and a piece of paper from his clipboard and puts them on the table. For a moment I’m more curious than nervous. Was the business card, the one with the name of my disease written on it, attached to that same clipboard? If that’s the case, I don’t want to touch the paper. I don’t want to touch anything that’s touched that clipboard. I don’t want to be a part of any of this. I want Blue Nurse back. Now.

“Megan?” The Doctor pauses. “Megan? Did you hear me?”

I look up, my eyes wide.  

“I’d like you to write your name, right here,” The Doctor bends over and taps the paper.

I look at the pen that’s lying diagonally on the sheet of paper and grit my teeth. I just need to get this over with. I bring up the set of instructions in my head for writing and remind myself that it’s easiest to pick up a pen if it’s lined up parallel to my body with the tip facing to the right. I know that sounds strange, but I’ve found out ways to do things so I don’t have to coordinate both sides of my body, only the right side. Once I’ve lined up the pen in this weird way, I pinch the pen close to the tip and twist my wrist in a clockwise motion. It’s a slow process, but the pen ends up resting in my hand the way it’s supposed to. I then shake my head so that my hair becomes untucked from behind my ear and tilt my head to the right. I know already that this is going to be hard, and I want to hide behind my hair as much as I can.

I begin by making a shaky downward stroke. I know this is the first step in making the letter “M.” I got it.  Next, I lift up the pen just a little bit and try to line up the tip of the pen with the top point of the line I’ve drawn. I remind myself that I need to make the pen go down diagonally halfway, up diagonally halfway, and then all the way down to make the whole letter. I can think all these thoughts just fine. It’s just that, sometimes, my body gets stuck, like it’s frozen, before it completes the step. It’s pretty painful. Not that it hurts. It’s that it takes so much effort and energy.

Three minutes later, after I finally finish writing the five letters in my first name, I glance up with a look that I hope communicates, Please no more writing. Please no more.

But The Doctor either doesn’t care to read my expression or is too excited about making a recording of me, because he responds by saying, “You’re doing just fine. Now write the numbers one to ten.” 

I want to be strong. I want to be tough. But, instead, I start to cry. You broke another promise, I want to yell. You said we’d do just the normal tests. There was no mention of writing.

“You can do it.”  Dr. Snow nods.

“Enough! Enough! Turn off that damn thing!” My dad’s voice can be heard by everyone in the clinic.

__________

As a result of being treated poorly by my doctor, I am fiercely protective of people who are not treated with the dignity that they deserve. From my perspective, you can never know for certain the degree to which someone who is cognitively impaired can comprehend what you’re saying.

Today I’m thinking specifically of my friend’s mom who has Alzheimer’s. I visited with my friend’s mom — let’s call her Beth — the other week when my friend was in town.

I recognize that Alzheimer’s is a progressive, neurodegenerative disease and that there are significant cognitive repercussions. I also believe that it’s possible that those with Alzheimer’s can have moments of lucidity. Because of this, I will always err on the side of believing that Beth and others with brain injuries or degenerative brain disorders understand every single word I’m saying.

Just because we may not be as capable as we once were does not mean that we’re not still processing things in our environment and feeling emotions.

I urge all of us, regardless of our profession, to be human-centered first and foremost.