Brain Surgeries and Breakthroughs: My interview with Jen Riday (Part One—The Preamble)

Photo by Josh Neubauer

Photo by Josh Neubauer

Buckle up: this one's personal.

I have a rare, incurable condition called Camurati-Engelmann Disease. I was diagnosed in June 2008 after a harrowing year: I had three brain surgeries, lost a good chunk of my eyesight, and nearly died. And that's just the shitty medical stuff. I've had two more brain surgeries since: one in 2012, and one in December 2015.

I don't talk about this much. Mostly because it doesn't come up organically in everyday conversation, but also because I'm fortunate that it doesn't affect my life on a daily basis—even the partial blindness is manageable. I'm way WAY luckier than most of the people who have my disease. They live in excruciating pain every single day. I know this because there's a tiny Facebook army of people with CED. We share our symptoms and give each other virtual high-fives just for making it through the day.

My friend Jen Riday interviewed me recently for her podcast. It's the first time I've ever spoken about my condition publicly. Actually, it's the first time I've ever been interviewed for anything other than a job, and I can report that the amount of armpit sweat I produced is about equivalent.

Her podcast is called Vibrant Happy Women. I very nearly backed out of the interview because I felt uncomfortable taking on that label. I felt uneasy presenting myself as someone who had anything meaningful to say about happiness (or vibrancy, for that matter), since parts of my life aren't unhappy, exactly, just...unresolved.

But then I remembered how I felt juuuuuust after I got back to Montreal from New York City in the summer of 2007, after I'd had emergency brain surgeries #1 and #2. I still had the surgical stitches in my scalp but I remember thinking, "WHY HAVEN'T I LEARNED ANYTHING YET? AREN'T I SUPPOSED TO GROW FROM THIS EXPERIENCE? I'VE FAILED AT HAVING A LIFE-THREATENING ILLNESS." Yep. That should give you an idea of the depths of my self-loathing back then.

Looking back to that time nine years ago, I realized how far I'd come. I also realized how much of that growth had been directly, specifically related to my illness. It's such a well-worn cliché, but I'm going all in: my illness has been my greatest teacher.

I also realized that the whole point of the podcast is to tell stories about women who have found happiness in spite of difficult, unexpected, life-changing circumstances. Stories about women who have found ways to be happy through loss, pain, and disappointment.

That's me.

 

You can listen to the episode here, or you can download it on iTunes (Episode 15).

 

Tomorrow: A deeper dive into some of the interview questions, and the story of my rock-bottom moment. Read Part 2 now.


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