Having a Body Is a Full-time Job
“One thing’s for sure,” I tell my dad. “This is going to make a great column.”
I’d been dreading this doctor’s appointment for days, and not just because of the hell that is commuting during the winter.
The last time I was at this clinic, a neurologist questioned whether I had spinal muscular atrophy (SMA). When I told him I most assuredly did have SMA, I was referred to a geneticist anyway — one of many frustrations that characterized my quest to obtain the treatment Evrysdi (risdiplam).
So, I was less than thrilled to receive several calls in a row from the clinic. Apparently, I needed to be seen before March in order to renew my Evrysdi prescription. My neurologist was booked solid, but could fit me in on Jan. 10 at 3 p.m. Given that my last neurology appointment was at the godawful time of 8:30 a.m., I took the slot without hesitation, only to realize I had an allergy appointment already scheduled for that day.
Folks with chronic illness know this dilemma all too well. I joke that being disabled is a full-time job, but it’s the truth. It’s not just scheduling doctor appointments, it’s also securing transportation and caregiving. It’s doing the math, because there’s traffic to consider, and parking, and the inaccessibility of a snowy city street. It’s preparing yourself, physically and emotionally, for an uptick in fatigue. It’s holding things lightly, because nothing ever goes according to plan.
Getting there, being there
You can leave on time. You can pack in advance and have Google on standby with directions to the clinic. In a moment of hubris, you can even tell your caregiver that you’re going to arrive a whole 15 minutes early.
It doesn’t matter. Either you’ll forget something, your phone will malfunction three times in 30 minutes, or you’ll get an email from the clinic around 2:30 saying your 3 p.m. appointment has been canceled. At this point, you’re already downtown, so you decide to go anyway, on the off chance the email was a glitch.
You get to the clinic. It’s 3 degrees outside — literally — so you sit in the waiting room in a frozen haze. A nurse checks you in, reassuring you all the while that your appointment wasn’t canceled, and then you wait.
For an hour.
“How long do you think we should wait?” you ask your caregiver, because you’re tired and cranky, and your neck is sore from a particularly dangerous pothole.
Your caregiver calls for the nurse, who is surprised. “No one’s seen you yet?” No, not yet. How strange.
You wait another 15 minutes. You hear people talking about you on the other side of the door. When your neurologist finally comes in, he has no explanation, only an apology. Your privilege is astounding — how many people see a neurologist on a regular basis and pay nothing but insurance fees? So, you laugh and shrug, and think how lucky you are. How lucky, indeed.
By the time you get home, you are cold to the bone. You relay the day’s events to your parents, who wrap you in blankets and remind you that everything will be OK.
You are lucky, you tell yourself. You are blessed.
More than a bad doctor’s appointment
I knew the title of this column before I started writing it. Having a body is a full-time job, especially when you’re sick. My neurology appointment was a disaster, but it’s more than the comically long list of things that went wrong.
It’s the mysterious rash that you’ve had for months — a rash that persists, despite two rounds of blatantly unpleasant antibiotics. A rash with an unknown cause that even dermatologists struggle to treat.
It’s the year-round allergies. The constant congestion. The vitamins you take, six in all, on top of your various prescription medications.
It’s the progression. The excitement of seeing improvements while taking Evrysdi, mixed with fear. Will insurance renew your prescription? Will you have to go through another monthslong battle just to reacquire this life-changing therapy?
It’s scheduling doctor’s appointments every day until you die. It’s having backups, and backups for the backups, and backups for the backup backups. It’s asking your dad if he can please drive you downtown for a very important checkup that absolutely cannot be rescheduled. It’s braving the bitter cold with nothing but a thin undershirt, because your muscles are weak, and jackets make it impossible to drive.
Having a body is a full-time job.
No wonder I’m so tired.
On Wednesday, Jan. 19, I’ll be chatting with my fellow #SMAMyWay contributors about blazing trails, specifically the metaphorical kind. We’ll talk about everything from finding your passion and chasing your dreams to putting yourself first and challenging the status quo. We’ll also be participating in a Q&A, so be sure to register in advance on SMAMyWay.com and submit your questions!
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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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