Since I’ve begun my Spinraza journey, I undergo periodic assessments that measure my muscle and respiratory function. These assessments are quite exhaustive and make even the SATs look easy— you know, like one of those “personality quizzes” that you find online? The ones that tell you whether your personality resembles a baked potato or a goat cheese flatbread?
Anyway, these assessments can be brutal. Every tiniest movement and tiniest muscle is measured. And then measured again. This thoroughness isn’t just meant to drive a person loony (which it can), it’s for scientific purposes. Mainly to see how this crazy-expensive treatment is actually working.
I’ve seen measurable improvements since beginning treatment, that’s indisputable. This is amazing given the progressive nature of Spinal Muscular Atrophy. After all, merely slowing or halting progression is also a substantial goal. So, seeing an improvement is a bonus.
But, with the need for these assessments comes a unintended side effect for the patient— stress, worry and anxiety. When you’ve fought long and hard to receive the drug (while many wait all around the world to have access to it), you’re terribly frightened of having it taken away. There’s an unspoken need to prove yourself during these assessments. To prove that you are worth this expensive treatment. To prove that all of us with SMA are worth it. That’s a lot of pressure. Especially to a person like me that is already competitive. A person like me that breaks out into hives if they aren’t scoring in the 90th percentile.
My outstanding medical team has attempted to calm these fears and anxieties. They’ve told me to not put pressure on myself. But, I know that the data from assessments, like mine, are being compiled into a study that will be used to potentially help (or hinder) adults with SMA around the world in their fight for treatment. So, I know it does matter. Despite how much they may try to allay my anxieties.
Recently, I headed to Stanford for another assessment. Like a prizefighter, I had been prepping for weeks beforehand. There were a few tasks that I had been unable to perform in my prior assessments that I was determined to master this time around. Mainly, tearing a folded piece of paper and opening a small plastic container with a snug lid.
The looming nature of those tasks were swimming around in my mind in the waiting room as I nibbled on my turkey sandwich.
Please let me tear that fucking piece of paper. I’m gonna be so pissed if I can’t do it.
What if I get performance anxiety? There’s no Viagra for paper-tearing.
Ugh, what if I can’t open that container, either?? Dude, if that happens I’m gonna run over the damn thing with my wheelchair. Just see if I won’t.
This internal dialogue continued in my mind until, thankfully, the physical therapist came to take me for my first assessment. In the PT room, all the assorted gizmos were laid out on a table. At the sight of the tiny weights, containers and charts, my heart started to beat faster— making me exceedingly glad that I had taken a tiny Xanax thirty minutes before (in between bites of my aforementioned turkey sandwich).
But, before the therapist could give the first instruction, I blurted out: “I’m really nervous about this. I even took a Xanax a few minutes ago. I’ve been practicing opening a container and tearing a folded piece of paper at home. I really, really want points for those tasks.”
The therapist arched an amused eyebrow, “Oh, I definitely remember how you feel about getting points.”
During my last assessment, I nearly held her hostage until she allowed me one more chance to earn the one point I was determined to get. It wasn’t my proudest moment. There might have even been tears (not sure if they were hers or mine, though). It’s a good thing she has a good sense of humor. Otherwise, I think I would have seemed pathetic.
“It’s going to be fine. You really shouldn’t worry—”
I interrupted her, “I brought with me a stack of paper that I’ve already torn at home as evidence that I can actually do it. It’s in my backpack if you’d like to see it.”
Laughter pulled at the corner of her mouth, “Uhm… yeah…” She paused and looked at me as if she was suddenly REALLY glad that I did take that Xanax, after all. “I’ll just pretend you didn’t say that.”
“Are you sure? I mean, I can totally show you—”
“No, no. Let’s just not.”
And so, the assessment began. My range of motion was checked. I was asked to squeeze and poke various technical devices— each measuring the strength in various muscles of my arms and hands. I was asked to lift coins and weights of various sizes. I was asked to pull a rabbit out of a hat. (Okay, I might have made that last one up.)
Things were going really smoothly when she grabbed the dreaded plastic container. “Okay, now it’s time for this,” she waved it in front of me as if the motion could magically stop the sweat from collecting in my palms.
I grabbed it. Yanked. Pulled. Strained.
And nothing happened. I began to panic—the litany of anxiety returning to pound into my head like the clanging of a 1950s typewriter.
Sensing my emotions, the therapist took the container and set it on the table in front of me, “How about we come back to that?”
She then folded a piece of paper and handed it to me to tear in half. My attention was still so focused on the plastic container that I had the paper torn halfway down the middle before I realized that I had actually done it.
My heart raced in joy as I finished tearing the paper. Then, I slammed the two halves down on the table like Rocky Balboa.
“Ha!” My cry was loud and victorious. Sylvester Stallone could kiss my butt. (Actually… Eww, no. Maybe not. He’s old and he’s taken way too many steroids over the years.)
Feeling more confident, I demanded, “Give me that container back so I can try again!”
And you know what?
Nothing fucking happened.
I still couldn’t open it. My mood plummeted as I watched the physical therapist write a “0” on the assessment for the task of opening the container.
My inner soul cried, “NOOOOOOOOO!”
I hadn’t been this upset since the original DuckTales animated series was cancelled back in 1990. I was despondent. Even though I had torn the paper, it wasn’t enough. I wanted that container. I needed that container.
The assessment was over. As the physical therapist walked away briefly, I glanced once more time at that damn piece of plastic. With my sorrow, I felt all the muscles in my body relax.
I was defeated. With a sigh, I absently grabbed the container. And, before I knew it, I had removed the lid.
My mouth dropped open in shock. I had done it.
But, the physical therapist was on the other side of the large therapy room. She didn’t see me do it. It was like scoring a perfect 10. Only not at the Olympics where it truly mattered.
I sputtered, “OH MY GOD, GET OVER HERE NOW! LOOK AT THIS!”
When the therapist returned, I quickly did it again. I was suddenly a Ziploc Plastic Container Opening Machine.
“I’m going to get points for this, right? Right?” I knew I sounded frantic, but I didn’t really care.
She chuckled, “Yes, you will.”
I wasn’t fully satisfied. Not after all I had put myself through. “While I’m not saying that I don’t trust you, I’d really like to see you write it down. Right here in front of my face where I can see you do it.”
“If it will make you feel better?”
“Oh, it will. I promise you.”
She grabbed her pen and changed the “0” to a “1.” It was the most beautiful number I had ever seen.
“Ha!” My cry was loud and victorious.
Maybe Rocky could kiss my ass, after all.