Life Forward & Backward

My mother couldn’t ride a bike. She tried. I have one memory of her mounting a red road bike and pedaling around the block. For the rest of her life, the bike sat in our laundry room collecting dust.

I relate deeply to the scene in Steel Magnolias where M’Lynn, grieving her daughter’s death from juvenile diabetes, laments: “I’m fine! I can jog all the way to Texas and back, but my daughter can’t! She never could!”

I have always felt that scene in my whole body –– bones, blood, muscles, tears. Everything opening to M’Lynn’s words, unleashing a rock hard truth living at my core. My mother was sick. I was healthy. She died. I survived. I will not be sick.

For my whole adult life, I’ve been healthier than my mother, more alive than her, proof I’m promised a different fate. And I’ve had to prove this every single day. I’m not a marathoner or triathlete. That is too normal, too organized, too legit. My exercise habits have been secretive and ritualistic and irrational.

On some days, I have walked 40,000 steps, and felt like that wasn’t enough. I have run seven miles in 90-degree heat, then hiked the day away in the Blue Ridge Mountains and dehydrated myself. Right now, I have had the same bruise on my right toe for six years, and only recently realized it came from running in the wrong shoes.

I love the euphoria of a good run, but I’m not addicted to it. I’m addicted to proving I won’t die young like my mother. I will not be 48 and bound to a wheelchair. I can run or bike or swim or weight-lift or kayak. I can downward dog and stand on one foot for ten seconds. See? I’m fine.

Last summer, it became clear that I was not fine. I couldn’t get out of bed. I gained 16 pounds, despite not changing a single thing about my diet. The most exercise I could do amounted to numbingly slow walks in a park near my house. Then a rash appeared on my legs. It looked at first like small mosquito bites, then looked like pinprick clusters of dried blood when I looked closer. I’d never seen anything like it. The next day, I laid down on a doctor’s examination table.

It took six months, many blood tests, and an ultrasound to discover I had an autoimmune disease, not the disease that killed my mother, but an illness that, like hers, affects my endocrine system and binds me to her in a strange and familiar way.

My mother’s type-1 diabetes caused her immune system to destroy her pancreas. My Hashimoto’s thyroiditis is causing my immune system to destroy my thyroid, the seat of my energy and metabolism.

When I was diagnosed in December, I only told a few trusted people. I didn’t want to be different, sick, defined by an illness, have anything “wrong” with me. I didn’t want to be like my mother in this way, the worst way.

I tend to be an over sharer, but this is the first time I’ve blogged about Hashimoto’s, yet not the first time I’ve written about the disease. This September, Hippocampus Magazine will publish a micro essay about my diagnosis that I finished in February. The essay braids an experience of discovering my mother’s disease with the pivotal experience of discovering my own illness, which is undeniably linked to hers. Like all creative nonfiction, the essay is about more than the situation it describes. It’s about a larger story of how the past and future can flow into one another, how we can be there and here at the same time, and how we can long for a different life than the one we are living.

This week, while I was finishing another essay set in the years immediately following my mother’s death, a time that still feels excruciating to peer back into, my friend Lisa told me to keep writing. Then she sent me this quote from Soren Kierkegaard: “Life can be understood backwards; but it must be lived forward.”

How I loved receiving those words, the wisdom and hope that they carried, and the truth that unfolds through them. Still, when I look forward to my own future, I see more uncertainty than I’m comfortable facing. Sometimes I see nothing at all. Sometimes I see a flight of possibilities.

My diagnosis changes the story I tell about myself and shadows what I thought would be true for my life. When I look backward, I see my mother’s dignity and courage and strength; I see my own fear running parallel to her death for too many years. I see that  if we live long enough, we will all have experiences of our bodies becoming different and incapable of holding us the way they once did. I see a story I never expected, a story I don’t know.

I wrote that Kierkegaard quote on an index card and taped it to my desk, next to my mother’s laminated cremation certificate and a shrine of stones I keep beside it. In the morning, the stones catch the sun and glitter for a moment, reminding me the future can be uncertain and hopeful at the same time, defiant and sparkling with light.

 

 

 

 

 

 

 

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