Why I’ve Given Up On Being Healthy

Why I’ve Given Up On Being Healthy
My mitochondrial disease has no treatment or cure. But after years of focusing on what I can’t do because of my disability, I finally see what I can do — and how I can do it.
By Jody Allard
Jan 24 2017
https://www.buzzfeed.com/jodyrallard/im-not-lazy-im-disabled

“Why did you leave your last full-time position?” the interviewer asked. It was a drizzly morning last February, and we were sitting in a small room with glass walls, in the corporate office of a large online retailer. I paused, thrown off by the question I’d been expecting but still hoping to avoid, and stared at the French bulldog on her sweater.

“I wanted to spend more time with my kids,” I said, using the excuse I had rehearsed with my friends. “I’ve been freelancing ever since. Now that my kids are all in school, it’s the right time to go back to work.”

My interviewer smiled. The lie made sense to her. More than that, it built a sense of connection between us. But it snaked its way down my throat and into my chest, squeezing me until I felt breathless.

She moved on to the next question, but I watched as she googled my name to pull up some of my recent work. If she kept scrolling, she would see the truth. She would know that I left work when my health collapsed from mitochondrial disease five years ago, and that even I had no idea whether I could handle the physical demands of going back to work. But as I watched her click on the first result, my lie slowly eased its way out of my chest and into my stomach.

My mother tells me that, as an infant, I reached for things with my fingerless right hand and screamed when I couldn’t grasp them, the way any baby would. But those are her memories, not mine. From the time I was capable of understanding my differences, they’ve been burned into my consciousness. Being different quickly became as much a part of me as my missing fingers.

It didn’t take long to discover that I could do anything anyone else could. I learned to walk with casts on my arm and leg, and they didn’t slow me down. But I also learned that doing was never the problem; no matter how much I could do, I was still different. I did my best to blend in, but my hand and my droopy eyelid always gave me away.

The doctors told my parents that my missing fingers were a fluke; a random accident of genetics and fate, disconnected from any known syndromes or disorders. But that wasn’t my only health problem. My childhood was pocked with barium enemas, upper-GI tests, colon cleanouts, and kidney function tests. My kidneys were scarred, and no one knew why; I was only 8 years old when the technicians told me to pee on a table so they could watch the urine progress through my system, lit up in technicolor by the contrast dye they’d given me. Whether from physical inability or humiliation, I just couldn’t do it.

My medical problems were strange and disconnected, scattered like confetti through every organ and system in my body. It was easy to dismiss me when the tests turned up nothing. Each symptom was treated as a new and separate health condition, and eventually I came to believe I was simply unlucky. As I got older, I didn’t question why I sometimes had to be homeschooled for entire semesters, or why I couldn’t do PE at school. When my parents told me not to be lazy, I vowed to try harder.

I was so focused on trying harder that I was into my thirties — with three marriages, seven kids (including three pairs of twins), and two different careers already behind me — before I realized that the feeling I called “laziness” was actually bone-crushing exhaustion. I’d spent my whole life thinking that’s what everyone else felt. It was only when my “laziness” progressed to drooping eyelids and numb, tingling limbs that I began to suspect something was really wrong. Wrong enough that something had to give.

The first thing I gave up was law school. I was taking classes in the evenings after work as a technical editor for a software company, and I loved it, but law school made for long days and didn’t pay the bills. I applied for a medical leave of absence, but I was sure I would go back and finish my degree. In the meantime, I consoled myself with my job.

[snip]

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