T-E-R-M-I-N-A-L

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

Just last week I finished reformatting my manuscript. For those of you who have been reading my weekly posts, you’ll recall that I had received feedback from Amy Quale at Wise Ink to consider telling my story from the perspective of an adult who’s trying to process childhood trauma. I believe this was a wise suggestion from the standpoint that understanding post-trauma and the way in which it can interfere in your daily life is relatable to more readers.

This restructuring has been difficult, partly because flashbacks don’t follow a neat trajectory. So what you, as the reader, learn about my childhood illness comes in fragmented pieces that don’t follow the chronology. For example, the flashback that is included in this particular passage is now part of my new chapter 13 and what used to be my old chapter 1.

I will need time away from the manuscript – and the assistance of other people’s eyes – to know if I’ve planted enough clues along the way so that the reader is tracking what the essence of my illness was like as it unfolds through the lens of flashbacks.

__________  

This passage follows the last and is from the second half of the chapter “I’ve Met My Match.” (It takes up after I’ve had a flashback of my appointment with Dr. Pierce while I’m driving home from work.)

Now, even though I was aware I was in my car, I was in a new place. A place I hadn’t been before. A place where I could no longer pretend as though I didn’t see the past.

I hated the idea of asking for help with my class. After feeling helpless for years and years and relying on countless therapists, I had vowed to myself that I would be the one offering help to others from here on out. Not the other way around.

But I also saw no way out of this situation without looking beyond myself. Especially when I discovered to my dismay that the version of Roger that showed up on Monday would reappear the next day. 

As I said, I would have gone to Ms. Sweeney had she been available. Although I’ve got to admit that the couple of times I had seen her briefly since the start of the school year had left me wondering if she had anything left to give. She looked exhausted and unapproachable. And yet. The stakes had been upped in my classroom as soon as Roger had started throwing chairs. My other students could very well get injured – or Roger could injure himself – if I didn’t have a plan in place. But who? Who could help?

On Tuesday, within 30 minutes of his arrival, Roger was back to throwing chairs. Again. And, if possible, he was throwing them at an even faster velocity. I knew I needed to act and act fast. Similar to yesterday, I escorted 22 of my 23 students to the hallway before running to the classroom of Anne, the lead special ed teacher. And I asked for help.

Anne got another teacher to cover for her class, and I had my students sit down in the hallway before I ran and got books from the library. I didn’t know what else to do but read to them until gym time.

After the longest 15 minutes of my entire life, I finally brought the students to gym class and went back to my classroom. Even though I had experienced the unimaginable on Monday, I still wasn’t prepared for what I saw then. My room was even more of a war zone than it had been the day before. More chairs had been thrown. More books and papers covered the floor. More bins had been upended. 

And there was Roger, standing on my desk, not yet removed from my room by Anne. As I watched him surveying the damage from his perch above us, I realized with a shudder that I almost didn’t recognize him anymore. His face had turned into the color of his red hair, the blacks of his eyes had overtaken any color, and the snarl on his face revealed his teeth.

I looked over at Anne, at where she stood, in the corner of the room, and I took in her exasperated expression and the sweat marks dotting the front of her shirt. 

I could only imagine the cat-and-mouse game they had been playing while I was gone. A sense of fear gripped me. I felt a tremendous accountability to my students and their families. I had to get Roger out of the classroom, get my classroom cleaned, reprint my lesson plans, pick up my kids from gym class. And then continue teaching like nothing had happened. These kids deserved nothing less than that.

But. But I couldn’t do any of this unless we were able to get Roger out of the room.

“I guess,” Anne said. “I guess I’m going to have to use the basket hold.”

I had never heard of this before. I watched Anne closely, not knowing whether or not this was going to be something that would be expected of me too. However, while I watched Anne, a 6-foot-tall woman who weighed close to 200 pounds, approach Roger with her arms outstretched, all I wanted to do was look away. But I forced myself to look and not turn away. And while I watched Anne and Roger duel it out for another ten minutes, this is the memory that played in my mind:

It’s Tuesday, November 19, 1985. All of my friends are in school except for me. Actually, they’re not really my friends anymore. How can they be my friends when I don’t talk to them anymore?

I’m at The Neurology Clinic to see Dr. Snow. Again. Today it’s just my mom and me at the clinic. Usually my dad comes too. Just a few days ago, my dad checked in with Dr. Snow to see if there would be any new news this week. When Dr. Snow said, “No, nothing new,” my dad booked his flight for his business trip.

My mom and I wait on the blue couch that’s in the waiting room. She’s on one cushion, and I’m on the other. When all three of us – my dad, mom, and I – are waiting, I sit in between my parents, on the crack.

After a couple of minutes, my regular nurse calls me back and checks my vitals before bringing my mom and me to a room that has buzzing fluorescent lights. The sound is so annoying.

We wait another few minutes before Dr. Snow makes his usual knock, knock at the door and walks in. After saying a curt hello, Dr. Snow sits on his stool, scoots over to me, and does the same exam that I’ve already done ten different times now. I don’t know why he keeps having me do the same thing over and over again. One thing that I notice that is different today is that Dr. Snow has a red tie that pokes out from under his white coat. Not the usual blue. Why red today? I wonder.

After the exam is completed, Dr. Snow scoots back, and I move ever so slightly on the table. When I do so, the crinkly paper that covers the table tears just the tiniest bit. I hate that this has happened. I don’t know why I think this is a big deal. It’s just paper. Paper they’re going to throw away. But being sick has made me into a superstitious person.

“So,” Dr. Snow says, “John’s traveling?”

“He mentioned you spoke briefly a couple of days ago. My mom uncrosses her legs, and as she does so, I notice that the pleat has been squashed. “You said there wasn’t any new news.”

“Well,” he says. “A test came back this morning.” Dr. Snow grabs his clipboard from the table and places it in his lap. The metallic clip that holds his papers catches the gleam from the fluorescent lights on the ceiling. “The lysosomal test. It came back earlier than expected.” Dr. Snow pauses again. “Megan’s lysosomes are not functioning properly, which means that one of her enzymes is defective.”

My mom works at the ring on her left finger, twisting it back and forth. “What do you mean?”

“This news, combined with the brain imaging showing basal ganglia calcification, means I have a diagnosis.”

“Without John?”  My mom’s voice shakes. I look again at the empty chair where my dad usually sits. You’re not remembering your promise is all I can think. 

But that doesn’t stop Dr. Snow from grabbing his business card that had been clipped to the clipboard, flipping it over, and reaching his arm toward my mom. It’s at this moment that I notice that there’s writing on the card. Could it be the diagnosis? My mom sits on the edge of her chair, not budging. We’ve been praying for an answer for six months. But I’ve got a really bad feeling about this. This might not be the answer we want.

After an awkward stare down, my mom shakes her head and frowns before finally taking the card.

“Megan,” Dr. Snow says, “has Hallervorden-Spatz Disease.”

What? Who’s ever heard of that? What an ugly-sounding name, with way too many letters.

I lean forward to see the word t-e-r-m-i-n-a-l written in smaller letters underneath the name of the disease. I know I’ve heard of that word before, but I can’t remember what it means. My mom’s face says it all though. T-e-r-m-i-n-a-l is bad. Really bad.  

“Megan has some classic symptoms of this disease. Involuntary muscle spasms, difficulty coordinating her movements, weakness. And her CT scan is consistent with iron accumulation on the brain. All of this combined with the lysosome –”

“Megan?” I heard Anne say as she headed for the door with Roger encased in her muscular arms. “Megan, did you hear me?”

I shook my head to dismiss the image of Dr. Snow. “Yes,” I replied. “Yes, we’ll debrief at the end of the day.” I paused before adding, “Thank you. Thank you so much.”

And, with the five minutes I had left before picking up my students, I heaped all the evidence of Roger’s destruction in a corner, got my kids, and taught the next lesson, all the while pretending that everything was fine, just fine.

__________  

I am thrilled (and terrified) to announce that I recently got a proposal from Wise Ink, a Minneapolis-based independent press I’ve been consulting with the last several months.

I’ll start with the thrilled part. All along it has been my (lofty) hope that, by sharing my story, I potentially could help people. But how could I make this a reality? I do think the restructuring of my book around the theme of what it’s like to process childhood trauma as an adult will better lend itself to this reality. Further, I also feel thrilled because, now that a reputable agency has offered me a proposal, I’m left feeling that there is literary merit in what I’ve written.

Okay, now for the terrified part. I’m terrified because this is a story that I’ve kept close to my heart for most of my life. How comfortable do I really feel about sharing this with people outside of my little bubble? What if these other people don’t like it? What if they don’t understand what my true intention is? Well, when I shared these concerns with Amy Quale, she reminded me that these aren’t my people then. End of story. And the reality is that, by going with an independent press, I can be part of the publishing process from start to finish and work my best in conjunction with the Wise Ink team to make sure that my books get in the hands of those who can benefit the most from my story. After all, it’s not about how many books I sell, but the number of people I impact. Thanks, Amy, for believing in me and my story. I am grateful.