Courage

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

As I reflect on the passage I’m posting today, I’m reminded of a white-water rafting trip we went on in Colorado this past summer.

The four of us were paired up in the same raft with a family who consisted of two grandparents, two parents, and a two-year-old boy.

I was surprised to see a two-year-old on the trip. I don’t know of too many two-year-olds who like to sit still for a couple of hours. Further, while the trip was going to be kid-friendly, there were bound to be rapids, and I wondered how a two-year-old would respond to this. Would he be scared?

Just a few minutes into our trip, the boy started crying, and he did not stop crying. For over 30 minutes. Our guide finally steered us over to the side of the river so that we could stretch our legs and regroup. My focus shifted from the crying boy to the grandfather when I realized that the man, after taking one step on the uneven ground, had fallen over, couldn’t get back up, and was having difficulty talking. I soon understood that this man was having a Parkinson’s freezing episode and that we would need to wait patiently for him to recover.

The grandmother was profusely apologetic. I met her gaze and said in a calm voice, “It’s okay.” Sure, our trip wasn’t what we had signed up for, yet it was what it was.

Even though this other family’s circumstances weren’t ideal for rafting, I understood the grandmother’s desire to do one more trip to Colorado with the whole family before her husband’s Parkinson’s interfered even more with their daily lives. And I empathized with the feeble grandfather who laid helplessly on the ground unable to communicate. I understood him more than anyone would have guessed.

__________ 

This excerpt is from Chapter 10: “A Day at Groves.” At this point in my illness, I had attended enough speech therapy sessions that I could talk without as much effort. That said, I had been living in fear for so long that my way of dealing with this feeling of overwhelm was to be selectively mute. So, when Ms. Engler, my teacher, asked me to read aloud in front of her and the other boys at the table, I was upset. I didn’t want be seen as any different than I already appeared, and I didn’t want to be told that I had to do something I didn’t want to do by one more adult.

“Megan,” Ms. Engler says, “it’s your turn.”

No. Why does today have to be any different than last week? And the week before that?

“Megan?”

No, you can’t make me do this. I’m acting like a child, and, in this moment, I don’t care.

“Megan, don’t make us wait any longer,” Ms. Engler prods.

But that’s exactly what I do, knowing full well that I can out-wait her. However, when the silence has gotten so long that Luke’s flitting eyes and even Mike’s hast-mast eyes are on me, I know. I know that I’ll finally succumb, because I don’t want to look stupid in front of these boys.

Fine, I think. I’ll do it, Ms. Engler. But, if this backfires and I end up looking dumb or weird or, or, I don’t know, then that’s it.

I make my way through the two pages, resenting every single word I have to say out loud before we finally get to return to our desks. When is the last time I said more than 100 words at the same time? Over a year ago? Longer? I can’t believe she made me do this. I decide right then and there that I’ll always hate the purplish-reddish color of her nail polish. I will never wear anything close to that color. Not ever.  

I sit at my desk for a couple of minutes and work at adopting Mike’s same checked-out expression. I’m the opposite of this right now though. I replay the two pages that I read aloud in my head. Did I read every word correctly? I think so. It certainly helps that we’re reading a stupid passage that must be written at the fifth-grade level. That, and I’ve been working at staring at words until they become sticky in my head. It’s so scary that reading is not a natural process anymore. But I hold on to a hope that, as long as my brain doesn’t hoard more metal, the junk that’s in my cells won’t get junkier and I’ll eventually learn how to read better. So, I check this worry off my list before going on to the next. Did I move my lips in a weird way? I wonder. No, I don’t think so. Or, at least if I did, my hair was covering my face when I read. Okay. Then what about the pace at which I read? Slow. But maybe not slow enough to draw too much attention?

I assume I’ve passed the test okay because there sit Mike and Luke, tearing tiny pieces of paper off their worksheets and forming them into spitballs. I stifle a smile. Here we are with only eight kids in our class, and they can do this without getting caught. If this is what junior high is about, I have a reason to be hopeful. I might just have time to catch up. If I work hard. Very hard.  

With this in mind, I pick up the electronic typewriter that rests at my feet. Last week I finally admitted that, yes, this could be helpful, that it would help me finish my assignments faster.  

I can’t get over how much the typewriter looks like an oversized turtle with a tough outer shell. I have to take off the cover to get to the keyboard, so that’s what I do.

My assignment today is to correct the grammatical mistakes on the worksheet. There are eight sentences, each with a couple of mistakes, and I just need to type the sentences correctly.

The therapy has helped in that I now can coordinate both sides of my body better. Because of this, I can hold the piece of paper in my right hand and twist the roller with my left hand at the same time. Sometimes my movements still aren’t super smooth, like this time, when the paper enters crookedly. But I do better on my second try.

I then look at the first sentence: “dont for get your snow boots said dad.”

It’s time to get to work.

__________ 

Juvenile Parkinson’s Disease is one of many diseases that my mom researched as a possible diagnosis for me before Dr. Snow landed on Hallervorden-Spatz Disease.

No matter how hard I tried, I just couldn’t get my body to do what I wanted it to do. I could no longer speak naturally. I could no longer move naturally. The frustration, embarrassment, and sense of helplessness I experienced are indescribable. All I wanted to do was hide – thus, the selective mutism.

That’s why, when I witnessed a family with a grandfather/dad who has Parkinson’s trying to pull off one more family trip, my immediate thought was, that takes courage.

That why, when I saw one of my favorite people at events, someone who was diagnosed with Parkinson’s a couple of years ago, I think, that takes courage.

And it leaves me wondering. What gives someone the courage to show up when their vulnerability is visible? What gives someone the courage to show up and share their vulnerability even if it’s not visible?