day 24/40: #40shoutouts40days

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Now that my corporate years are accounted for, I’d like to briefly thank some of my outstanding health care practitioners. These are some random categories, I know. It may get more bizarre as the end of Lent draws near. You be the judge.

For tonight, let me acknowledge the saint who diagnosed my epilepsy. I have never formally written about my condition so allow me to set the stage and provide some context. Again, my memory rebels against me so hang on to these details lightly.

The first episode happened at Subway. I had just finished working around the clock on a catering gig and was operating on little rest. I stopped to buy lunch on my way to an all-day tech rehearsal before a dance recital. My exhausted brain shouted at the sandwich artist but my mouth held audible words hostage. It was so embarrassing. I eventually managed to speak, slurring half my order and spitting the rest like watermelon seeds.

The second episode had me flat on my face at my dance rehearsal later that afternoon. I collapsed abruptly as I made my journey from stage left to stage right. I have no memory of falling but I know my ballet shoes were not to blame. I fell once more in the wings before the day was through with me.

Things persisted, though not aggressively. As a barista working the morning shift, I was notorious for dropping pastries, sending them swiftly to the floor, often six in one go, and nearly always oat fudge bars. This was a mild tragedy for both my manager and our customers. Eventually I had to quit because the 4:30am mornings were destroying me.

I jumbled words. I shattered dishes. I dropped heavy bags. Slowly a patterned emerged: I didn’t cope well without consistent sleep. I figured perhaps it was my body’s way of telling me to take things easy after pushing myself to the brink in high school.

This mysterious behaviour carried on for roughly two years, bizarre moments of haphazard speech and involuntary moments. For the most part, my oddities flew under most people’s radar. I appeared to be hiccuping and I was otherwise completely healthy. But when faced with a bad night’s sleep, things got ugly. I had no idea I was living with a form of epilepsy.

When something isn’t right, the first thing one can hope for is answers. In the medical community, sometimes answers are complicated and elusive. Sometimes a diagnosis is out of reach. Occasionally doctors miss asking pertinent questions and patients don’t offer valuable information. Other times patients communicate poorly. It’s not all black and white.

But in my case, it should have been black and white.

Over the course of several months, my mother and I met with three neurologists, all men in their fifties if I recall correctly. Each sat beneath their framed degrees, disconnected and disengaged. They each asked the same questions.

“Yes, I had a fever-induced seizure as a child…No, nothing since then…I get a weird feeling behind my eyes…These strange things happen after I stay up late or wake unreasonably early or miss a meal by accident.”

Every single diagnosis was the same: nothing.  No answers. “If it hurts when you lift your arm, don’t lift your arm.” I always felt like the men belittled me as I left. “Silly little thing. Typical teen. Don’t stay out late, honey. Don’t skip meals.” But most teenage girls don’t routinely jab themselves in the nose with their mascara wands in the morning after a night out. Something wasn’t right. My mother nearly gave up in frustration.

And then finally one day we walked into the office of a fresh-faced neurologist named Colleen Murphy. She had impeccable posture and porcelain skin. She wore her mousy hair neatly tied back, nothing fancy. She hardly wore make-up. She spoke with the authority that comes when one is confident in one’s field but unlike the others, she was very kind, very empathetic.

She asked all the same questions; my mother and I presented the same case. She politely excused herself and left the room. In a matter of minutes she reemerged, lowered herself into her chair, folded her hands on the desk, and leaned forward. She offered me an answer: epilepsy.

The word rattled in my head. It knocked me hard in the chest. I fought back tears of disbelief and confusion. She explained the need to run multiple tests but she was confident based on my medical history. Sure enough, I was a textbook case of a young woman living with Juvenile Myoclonic Epilepsy. It wasn’t the answer I wanted but it was an answer.

Colleen, thank you for treating me with empathetic care from day one. Thank you for taking me seriously. Your professionalism and kindness won me over in minutes and though I was terrified of the unknown, your sensitivity and insight soothed my anxiety. You didn’t let me down as we navigated my epilepsy’s course over eight years. I was incredibly nervous when it came time for us to move to Scotland because I knew you were irreplaceable but thankfully, God put me in good hands with the NHS.

Truthfully, I long for the day when I no longer require a neurologist’s care but for the time being, I’m happy I know where to find you when we return to Vancouver.

Sincerely,

E

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