Given that I’ve had a disability my entire life, you’d think that I’d be fully-immersed in all medical-related things. But, that’s just not true. For example, despite my love for WebMD and Wikipedia, I’m not familiar with every pharmaceutical brand on the market. I don’t know the best medication for type 2 diabetes or psoriatic arthritis. But, from the commercials that I’ve seen on television, each of the available medications have potential side effects that include temporary blindness, liver damage, suicidal thoughts and/or heart failure. It’s an uplifting assortment of options.
Anyway, while I do know a lot about stuff related to Spinal Muscular Atrophy (SMA), there’s a lot of other things that I don’t know. Stuff that, as an outsider, you’d think would be an everyday part of my life.
Like physical therapy.
This statement might come as a bit of a surprise. You might be thinking, “You mean the crippled girl doesn’t go to physical therapy every day? What a slacker! How does she expect to get better if she doesn’t do that??”
Here’s the thing: until I began Spinraza treatments last year, the expectation that I could maintain or improve my strength was pretty much a non-starter. An impossibility. A don’t-even-dream-about-it kind of thing. You know, like thinking that Kanye West will ever not be super weird?
This isn’t to say my physical therapists in the 1980s didn’t try their damndest to make this not be so. Defying the laws and biology of SMA, my childhood therapist pushed and shoved me into standing boxes to straighten my curving back. They placed heavy, painful weights on my legs and hips to try to reverse my irreversible muscle contractures. They tried to push my body into doing things that it just simply couldn’t do. They weren’t intending to be cruel, but their understanding of SMA at this time just wasn’t very advanced. They pushed more than they should have. They expected more from me than I could physically deliver. They were doing what they thought was best, though. But, these good intentions didn’t mean that this period of my life still wasn’t an utter hell on earth.
My confidence took a beating at this time, as well. It was hard not to feel that way when my inability to continue to participate in these physical therapy sessions was seen as a result of my laziness– and not the natural progression of my disability. The fault was with my motivation and my drive. Not the fact that it was an excruciating torment to endure… with no progress to show for it. In fact, the opposite happened. I progressed anyway. As all of us with SMA have done. It’s biology. Not laziness.
It’s perhaps not surprising that I eventually became withdrawn during these physical therapy sessions… and then increasingly uncooperative. Finally, it got to the point where during designated therapy time, I would hide in corners of the elementary school so the therapist couldn’t find me.
It was the biggest act of rebellion I had ever pursued up until that point. And it was also a moment in my life when I felt the most unheard.
Those gut-clenching moments remain with me to this day. I’ll always be that anxious little girl in the school physical therapy room, even though it was over twenty years ago.
So, it is with the baggage of those memories that I’ve recently reentered the world of physical therapy. My revolutionary Spinraza treatments have led to some small improvements in my strength and stamina. Which, given the progressiveness of SMA, is fucking awesome.
As I’ve written here before, I’ve been doing some informal exercises at home since beginning treatment. And it’s been very helpful. But, my Stanford medical team advised me that it was time to take it up a notch. So, I was referred to a local physical therapist to develop a custom exercise plan.
Yesterday was my very first consultation. I’m not gonna pretend that I wasn’t nervous. That I wasn’t worried that the physical therapist was going to push me too far beyond my ability because he didn’t have an understanding of SMA (like my old therapist all those years ago). Or, that I wasn’t dreading the whole experience… the way Trump dreads a wind tunnel.
So, what did I do? I did what any self-respecting Type A person like myself would do. I obsessively prepared for my appointment by typing up an information sheet for the therapist about me, about SMA, and why I was there in the first place. I also harassed the receptionist with warning calls that I would perhaps be a high-maintenance patient. Not like the everyday car accident victims and torn rotator cuff patients that they saw everyday. I would be a whole bundle of crippleness. The person that, when presented with a new patient form, would circle the ENTIRE BODY as an indicator of where I’m having trouble.
I’m sure my neuroses were quite evident in my voice on the phone. And I’m certain that this left an impression on the poor receptionist because when I rolled into the office, she instantly called me by my first name— despite the fact we had never met.
I filled out more medical history forms. And I had to resist adding smart-ass remarks in the margins. How could I not answer the question “How long have you had this issue?” with a sarcastic reference to the Reagan Administration?
I only have so much willpower, after all.
When the physical therapist, Robbie, came over a few minutes later, though, he was remarkably calm. And, despite my fears, he didn’t look like a deer in the headlights when faced with probably the most disabled patient he had ever encountered.
I wasn’t a truck driver with a case of whiplash. I was a whole-lotta-weird with muscles that behaved in ways you wouldn’t expect. (Come to think of it, also kinda like Kanye West.)
Robbie quickly admitted that he had never encountered SMA before. (Most medical professionals actually haven’t– this is not unusual.) But, that fact didn’t stop a gleam of excitement from entering behind his eyes. I recognized the same look in his gaze that I would get back in 1990 when I got a brand new set of Legos. The look that Ina Garten still gets when you flop a freshly-caught, raw sea bass on her kitchen table.
The look that says: “Oh, boy! This is way more fun than a hip replacement!”
I’m happy to report that he asked all the right questions… he was engaged and interested. And incredibly collaborative. It was just the experience that I had been hoping it would be.
I was being heard.
And, for that, I was so very grateful.
For the time being, I’ll be heading to physical therapy once a week, so stay tuned for more updates on my progress. I can’t believe I’m saying this, but I’m strangely looking forward to it!
I do wish there was a way that I could have told that to my ten-year-old self, though. That the experience didn’t have to be the way I endured it… and that it could have been much, much better.
Maybe then I wouldn’t have had a reason to hide.