Control

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

I have expectations for my kids (as I should). They are expected to do their summer reading before they get screen time. They’re expected to at least try what I’ve made for dinner, even if it’s not their favorite. Also, Dan and I have the expectation that, once we’ve signed our kids up for an activity/sport that they have expressed interest in, they follow through and complete the class/season, even if they find that they don’t like it. (However, we don’t have the expectation that they sign up for it again.)

I try to see things through my kids’ lens, and I get why some of these expectations would seem “unfair” and make them feel like they don’t have control. Because of this, I try to offer choices within the confines of my expectations and/or open the conversation to more dialogue: Which of these books would you like to read? What would make this meal better? Which of these activities would you like to sign up for? Why do you think it’s important to follow through with a commitment?

In the passage that follows below, you’ll discover that I needed to be hospitalized because my weight was dangerously low. As an adult, I can see why this measure was necessary. And this experience also made me aware how hard it is on a child when the people around you are making all the choices for you. After all, for normal development to occur, kids need to have some say in the things that impact them.

__________  

This passage follows the last and is from the chapter “Betrayal.” My conversation with Ms. Sweeney left me feeling betrayed. As I walked out of her office, a memory of when I had been betrayed by Dr. Snow surfaced.

I could tell you the exact date when I had been betrayed by Dr. Snow. The exact date when my life could be divided into pre-betrayal and post-betrayal.

It’s July of 1986, eight months after my diagnosis, and I have my weekly appointment with Dr. Snow. As we make our way to The Neurology Clinic, my parents walk along my side, supporting me as I shuffle along. My parents occasionally carry me because I’m so slow and weak, but today I insist on walking. It’s a matter of dignity.

Within minutes of our arrival, my regular nurse calls me back to take my vitals and weigh me, just like she always does. I’m surprised I only weigh 56 pounds, up just four pounds from my low in January. I pause and think, Five feet, one inch tall and 56 pounds at the age of 12. That’s not great, especially considering that the average weight according to my nurse for my age and height is around 90 pounds. This disease, whatever it is, seems to be eating away at me. Then again, that bone marrow biopsy and spinal tap that were done six months ago sure did a number on my body. These procedures left my already weak body even weaker. 

I heard Dr. Snow and my parents stress out about all of this, saying things like, If she doesn’t gain weight, we’re going to need to look at different options. I’ve never bothered myself with what these options might be. But based on the look my parents give each other when they hear the nurse say “56,” I think, Wait, what was that look all about? They know something that I don’t know. How could I have let my guard down? It makes my blood boil to think that there are all these conversations taking place about me behind my back. The nerve.

“Well,” Dr. Snow says after he’s entered the room and reviewed my chart. “The good news is that the lysosomal inclusions are not getting denser.”  

Shortly after Tuesday, November 19, my parents had asked for a copy of the lab report that Dr. Snow had used to confirm that I must have Hallervorden-Spatz. For the longest time my mom had a copy of this “Blood Cytopathology and Electron Microscopy Report” pinned to the corkboard above her desk. In the “Diagnosis” section, it was written, “Abnormal ultrastructural examination of circulating peripheral lymphocytes with storage material identified along with disruption of the mitochondria for unknown reasons.” This made absolutely no sense to me. It still doesn’t. However, since that first appointment, I’ve pieced together enough that I’ve come to understand that, basically, there’s junk floating around in my cells that isn’t being cleaned up the way it’s supposed to. (And then there’s all this metal accumulation on my brain that’s making it difficult for me to move as well.) 

Dr. Snow’s announcement makes me think that the good news is that the amount of junk in my cells hasn’t increased more in the last week. I sure don’t feel good, yet maybe this means that things won’t get worse? I almost feel like laughing in disbelief. How could things get worse than they already are?

Dr. Snow scoots closer to me on his chair. I instinctively lean back, even though there’s no place I can escape to. I’m back to being on my guard because, if I’ve learned anything in the last year, I’ve learned that adults don’t say, “The good news is…” unless they have bad news to share, too. While the IQ test I recently took makes me look stupid, I still can read social cues. Really well.

Sure enough, I watch Dr. Snow pinch his lips together as I hover on the edge of the exam table. “The challenge right now is that Megan still isn’t gaining any weight. And, because of this…” Dr. Snow looks up at my parents before adding, “I think it’s time.”       

Time for what? To my horror, my parents nod, proving that my senses are dead right. They knew this, whatever it is, was coming. They knew, and never thought to tell me. Anger burns in my stomach.

Dr. Snow turns his gaze to me. “Megan, we’re worried about your weight. And because of this, we think it’s time to hospitalize you and start you on a feeding tube.”

We, we, we. I’m caught up on all the we’s before my fear kicks in. Hospitalize? Like staying overnight at The Hospital?

“We were worried this might be coming,” my mom says.

I bite down hard enough on my lips that I draw blood. 

“It’s — it’s time,” Dr. Snow repeats.

I look over at my dad, waiting for him to say something, do something, to speak up for me, say that we can wait just a little bit longer, even a few more days, wait for my body to kick in, to remember how to gain weight. I look and I look, and even though I know he must feel my eyes, he has to, he keeps looking at the floor.

And at that moment, I know it’s a done deal. I feel betrayed. By Dr. Snow and by my parents. But especially by my own body.

As I sat outside the school, I inhaled the cold air into my lungs. I wanted to give Ms. Sweeney the benefit of the doubt. She had her own family emergency and didn’t have anything left to give to anyone else. And yet. I craved just a little warmth, a little empathy, almost more so than strategies. With a heavy sigh, I pushed myself up from the curb and walked into the building, the feeling of coldness following me inside.

__________  

Being hospitalized and therefore not being able to seek refuge at home at the end of a hard day was traumatic. No doubt it saved my life, as I finally started to see the scale nudge upward – but it also left emotional scars. There was not one decision during the day that was mine to make.

I was given hundreds and hundreds of calories through my feeding tube at night. When the feeding tube was removed in the morning, I was ushered to occupational, physical, and speech therapy. Intermixed throughout the day were my meals: breakfast, lunch, and dinner. Why was I forced to eat during the day when I was already full from being fed calories throughout the night? The doctors thought I needed to overload my body with food, with the hope that my metabolization would finally kick in. Further, the therapists thought I couldn’t afford not to keep working on the small-motor skills that were needed for eating, with the thinking being, if you don’t use it, you lose it. And I had already lost so much.

As I write this, I’m reminded that, perhaps, there actually was one choice that was left up to me at the end of the day – whether to turn the tv on or keep it off. I had a button on my bed that controlled this. However, I believe I usually kept the tv off, because I was too emotionally drained and physically exhausted at the end of the day.

So, control? Don’t forget that our kids need some.