Still a Kid

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

My friend Ann recently shared an excerpt from the website holocaustcenter.org. The excerpt is about Emeric Grosinger, who was deported to Auschwitz as a 12-year-old.

Emeric mentions that he really didn’t start talking about his experience in the detention camp until he, himself, had a boy who turned the same age that he was when he was deported. When his son still was saying, “…daddy this, daddy that, like a little kid” at the age of 12, the gravity of what he had endured and how young he was at the time hit him on a new level.

There is no way I’m going to make any comparisons between Emeric’s experience and mine. When I was 12-years-old, I was surrounded by my loving family, I was not a prisoner (other than to my own body), and I had a warm house (or hospital) to sleep in every night.

The only parallel I’m going to attempt to draw is between Emeric’s realization of how young he was when he experienced this atrocity and my recent awareness of how young I was when I got sick. Like Emeric, it took my having my own 11-year-old to understand, wait, you’re still a kid at this age.

My son still calls me mommy on occasion. He still wants me to help him put his socks on in the morning when he’s tired. He still wants me to sit by his bedside as he’s falling asleep.

I used to get upset with myself that I wasn’t somehow stronger for avoiding getting sick in the first place – or for not recovering sooner.

It turns out that that little girl didn’t have as much control over things as I once thought she did. Reading Emeric’s story helped me remember that you’re still a kid at the age of 11. You have big emotions that you are just beginning to understand.

_________

This is an excerpt from Chapter 8, “Betrayal.” This excerpt takes place at The Neurology Clinic.

It’s a Tuesday in late July after I’ve had back-to-back O.T. and P.T. appointments when I see Dr. Snow for my regular check-up. True to his word, my dad hasn’t missed an appointment since the day of my diagnosis, even if he’s rushing from somewhere afar to get there on time. Sure enough, just a few minutes before the top of the hour, he shows up, his suit coat hung over his shoulder and sweat marks beginning to form under his arms.  

Before we’re brought to the exam room, I get weighed in, just like I always do. I’m surprised I only weigh 56 pounds, up just four measly pounds from my low in January. Five feet tall and 56 pounds. I get that it’s hard to gain weight when you’re vomiting all the time. But I haven’t vomited in almost five months.

I’ve heard Dr. Snow and my parents stress out about 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,” The Doctor says, after he’s entered the room and reviewed my chart. “The good news is that the lysosomal inclusions are not getting denser.”  

Sometime after Tuesday, November 19, my parents had asked for a copy of the lab report that Dr. Snow had used to conclude 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.   

Pretty much every week I have a blood draw where I get poked multiple times. The first month or so that they did this, I would watch my blood as it was being drawn and as it entered these tubes with different colored tops. I used to wonder why in the world they needed to take so much blood, but, after the time when I fainted, I stopped watching — and then eventually I stopped wondering. 

But Dr. Snow’s statement has me wondering again. I bet one of those tubes has been tracking how much junk is in my cells. And I bet that, for some reason, the amount of junk hasn’t increased any more in the last two weeks. Humph. I sure don’t feel good, yet maybe this means that things won’t get worse? I almost feel like laughing sarcastically. How could things get worse than they already are?

The second I think this thought I’m sure I’ve jinxed myself. How could I be so stupid. Adults never say, “The good news is…” unless they have bad news to share, too.

I look at Dr. Snow. He’s sitting there on his stool with his lips pinched together, just waiting to say something else. I know it. I just know it. The IQ test I recently took makes me look stupid, but that doesn’t mean that I still can’t read social cues.

Sure enough, after an awkward pause, Dr. Snow continues. “The challenge right now,” he says, “is that Megan still isn’t gaining any weight. And, because of this…” The Doctor looks up at my parents before adding, “I think it’s time.”

Time for what? To my horror, my parents nod. 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? By myself?

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

I bite my lips hard enough that I draw blood. 

“It’s — it’s time,” The Doctor 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 keeps looking at the floor.

And at that moment, I know it’s a done deal. I feel betrayed. By The Doctor and by my parents. But perhaps most by my own body. 

_________

Remembering my 11-year-old self has me thinking about kids, especially those in middle school. This is a tough age, regardless. You’re in between, caught in the middle of two different worlds, but still such a kid with so many different competing emotions.

So, what holds you up when you’re feeling stuck in between or feeling sad or lonely?

In my early 30s, I was at a place where I was forced to look at what I went through under a magnifying lens (more on that in another entry). However, up until that point, I was pretty good at stuffing down my feelings, especially as they related to what I experienced when I was younger.

Because I was so bad at expressing myself as a kid (I was always fine!), I now am a huge advocate of teaching kids the importance of identifying their feelings and talking about them. Do they understand that they’re not alone in feeling the way they do? Do they have strategies in place for working through these big emotions?

I think we all need something that we can do where our inner critic is turned off and we can get in a flow state of mind. For my son, it’s building things. His favorite place to go is the hardware store. Watching him work on his next creation for hours on end brings both him (as the do-er) and me (as an observer) delight. I’ve gotten that much more comfortable with big messes in our house because I can see the degree to which building/tinkering puts him in a Zen mood.

Often, it’s after my son has had time to work on building one of his creations that we can do a deeper dive and discuss something that’s more difficult.

What’s your child’s thing? Maybe it’s listening to music. Maybe it’s losing all sense of time and space when s/he gets lost in a book. Or maybe it’s exercise.

It doesn’t matter what it is. What matters is that we’re helping these young people cultivate an awareness of their feelings and a way to channel their energy so they come out the other end feeling good about themselves and their unique contributions. That they still refer to us as mommy or daddy on occasion is a reminder that they need us to be there to help them work through their emotions.