I’m Burning but Not Burnt

There is something magnetic and almost hypnotic about a bonfire, I thought, as the unexpected snap of a burning stick spooked us all. My small cluster of shadowy friends gathered this evening, one of the first cool fall nights in my sophomore year of college. The friends are shadowy and blurry in my memory not because of their nature or what they wore, but because that night was almost 10 years ago, slipping further and further into the past.

Two girls squealed with surprise at the loud CRACK from the fire and the ashes it sent into the air, then they laughed. This night in early fall, when the sun set earlier and the weather was chillier than it had been in months, was the perfect invitation to gather with a small group of friends. In my beanie and my jacket that I wore for the first time that season, I settled comfortably a foot away from the flames. I adjusted my position in my first wheelchair that was almost two years old; I was still getting used to requiring one almost always. I leaned back and enjoyed the fire’s peripheral warmth.

The night continued, beautiful and unremarkable. Nothing profound happened; it was just a night of college friends enjoying each other’s company.

This season reminds me of death. Maybe it’s the crackle of fire or the inbound chilliness of fall or the fading colors of tree leaves. Maybe it’s simply the color orange, so distinct, so ubiquitous this season. Perhaps it’s because I am melodramatic (OK, definitely because of that) or maybe it’s rooted in my attempt to live a fulfilled life with Friedreich’s ataxia. I think about death pretty often, so often that I’ve written about it blatantly once and subtly many times.

Funerals are sickeningly common in the FA community. Excess genetic repeats — the foundation of FA — vary in length for every affected person. The completely random number of repeats designates symptom severity: the more repeats, the more severe the symptoms. If someone is advanced in age or has relatively mild symptoms, their number of repeats is typically fewer than average.

I have almost 500 repeats on each gene. For FA, that seems about average, maybe on the lower end. Some cases of FA have over 1,000 repeats.

As a rule of thumb, the higher the number of repeats, the sooner the fire burns out. That is terrifying.

A great disservice is that I do sometimes forget the fatalistic aspect of FA. If I only write about the positive lessons FA has taught me — the little victories I’ve found — and ignore ugliness and death, I do a disservice to those suffering and gone from the progressive symptoms of my genetic disorder. It is horrible. It is sinister and fearful.

Even in the shadow of the greatest foe, a main character’s story goes on. Witnessing how he or she faces fear makes their story good.

I can’t pretend to have it all figured out, nor can I share a list of things you can do to make life perfect, especially with FA. I don’t think such a list exists. And if it does, it’s dishonest.

Maybe what we can do is ensure that we are remembered after the fire burns out, that we don’t assume the role of shadowy people easily replaced in people’s memory. We matter. As the leaves turn from green to fiery colors, may we not be forgotten.

For me, connecting to other people is the key to mattering. So, I am opening myself up to friends and strangers alike with this wonky column, plus fundraising and participating in events with others in the rare disease community. I’m even feebly riding my recumbent trike, hoping it matters.

I am not grateful for FA. But I am grateful that in a world reminding me of death, I am reminded to live.

As a junior in high school, I came across this poem that has rooted itself in my mind. It brings me a lot of comfort. I hope it does for you as well.

“I dreamed I called you on the telephone

to say: Be kinder to yourself

but you were sick and would not answer

The waste of my love goes on this way

trying to save you from yourself

I have always wondered about the left-over

energy, the way water goes rushing down a hill

long after the rains have stopped

or the fire you want to go to bed from

but cannot leave, burning-down but not burnt-down

the red coals more extreme, more curious

in their flashing and dying than you wish they were

sitting long after midnight”

“For the Dead,” by Adrienne Rich

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