Powering Up

I’m not going to pretend that I didn’t go into the neurology appointment I had last Thursday with a clear goal and unrealistically high hopes that I’d achieve it.

Given the level of anticipatory anxiety I usually experience before most encounters with medical professionals (no matter how kind and understanding said professional may be), and given how much I had emotionally riding on the outcome of this meeting in particular, I remained remarkably cool and collected as the date approached. My seizure frequency has markedly improved since the last time I saw this doctor, and I’ve become much better at self-talking myself into a state of calm in situations that I used to instinctively catastrophize almost as if by default. It seems that more consistently fine health and less-awful coping skills are the recipe for a not-shaking-with-nerves me.

Indeed, en route to the hospital, my overriding emotion was excitement. My husband, on the other hand, felt it important to help me see the danger in setting myself up for a real letdown.

“No matter what happens,” he said, “you’ll at least have guidelines so you know what you need to work toward.”

He was, of course, right, and it was wise of him to encourage me to hedge my bets. Although my heart was set on leaving the epilepsy clinic with a letter clearing me for an electric wheelchair tucked in my purse, there was no guarantee I’d obtain one. I took his lead and readjusted my expectations accordingly, telling myself that I’d be totally fine either way. And I almost believed this delusion, too.

As I probably mentioned in a previous post, one of my top accessibility-related dreams is to transition to an electric wheelchair. I have way more independence than I once did: I spend chunks of time alone, for example, and now that I have that handy automatic door opener, I can hang out in the lobby of our building without having to ask for assistance. However, due to safety issues related to operating a manual wheelchair on very bumpy city streets, I’m fully reliant on the benevolence of my husband and of friends when I want to venture out into the community. This has been an endless source of frustration. Indeed, I fantasize about gaining the freedom to buy myself an overpriced coffee at a neighbourhood café in the soothing cocoon of my own company. Solo. Alone. Is that really too much to ask? (Yes, apparently.)

So when the idea that I might be eligible for an electric wheelchair came up during a recent OT visit, I clung to it for dear, independent life.

As always, there was a catch: approval for a power chair was contingent on a neurologist providing the aforementioned letter attesting that it’s safe for me to have one. This policy makes sense, and I support its existence—I wouldn’t want me having a seizure while driving a motor vehicle down the sidewalk—but was nonetheless an annoying roadblock.

I’ll spare you a play by play and cut right to the chase. Near the end of Thursday’s very positive appointment, I gave my doctor the rundown and departed with a letter in my lap and a foolish grin spread across my face.

I took advantage of the three minutes I spent waiting to book a follow-up to write to my OT informing her that I’d secured the required documentation and was eager to get the wheelchair-acquisition process started. When my husband arrived to pick me up, I turned to him to relay the good news.

He knew before I opened my big ol’ mouth.

“I saw the email over your shoulder,” he said. “Congratulations.”

I haven’t spoken to my OT yet (we have a phone appointment today—eeeee!!!), but that hasn’t stopped me from researching chair options and endlessly daydreaming about how I’ll take advantage of this new means of both transport and self-determination. Afternoons at the library, reading in the park, patio dates with friends. It’s not the “what” that matters as much as it is the “how”: by myself, when I want, and from the comfort of a new and shiny set of motorized wheels.

What power. What drive.