Sitting at my computer in my room, I barely noticed that everything had gotten dimmer. It wasn’t until I looked up that I noticed that one of the four bulbs on my ceiling fan was smoky gray and lifeless.
I rolled my eyes at the slight inconvenience, then resumed my work as a moderator on the Friedreich’s Ataxia News Forums. Well, mostly. My aggravating vice, Facebook, was open in another tab on my browser and seduced me into perusing it to see what my friends and family were up to.
A status update shook me to my core. Next to the profile picture of an online acquaintance from England, someone I’d never personally met but who is a fellow FAer, was a message typed by his sister. She let his Facebook friends know that her brother had died on March 4.
I don’t think I’d ever personally chatted with this guy. We were both members of several online community groups for people with FA, so it almost feels hollow for me to admit that his death affected me. And I feel a little voyeuristic as I scan his personal page to see the touching tributes his friends posted. He was 37. I am 33. I cringe that it’s because of narcissism — because I see myself in his passing — that I am here.
“Does that surprise you?” my shadowy companion whispers to me, a faint presence, like a pessimistic thought. “Of course you are thinking of yourself. His fate is your future.”
In the aftershock of my diagnosis, I fretted about every aspect of the disorder. From age 12-14, I was little more than a squeaky-voiced knot of angst and melodrama. I read FA’s prognosis with gaping eyes. One website said it would cause death in a patient’s early 30s.
I’ve since learned that this number is worthless: An FA diagnosis is random in every way. Which symptoms occur and when are a random roll of the dice. Acknowledging FA’s unpredictability actually gave me some sense of peace. Maybe I was just a passive victim of my biology, but my death was no more determined than anyone else’s. Death was just a shadow on the periphery of my life. It is the elephant always in the room. I try not to focus on it — not out of fear, although I am scared of dying early from FA.
The truth is that focusing only on dying makes life less productive. It’s hard to be productive, and even harder to be happy, if looming death is my focus.
But I’ve begun to notice something. Even if I only hold death to the periphery of my thoughts, it’s still there. Always.
I don’t think awareness of the shadowy threat is necessarily a bad thing. But to focus constantly on it would be unproductive, would lead me down a nihilistic path, and would make me a bum.
If there is a trick or a formula for living a good life, I don’t know it. But as I browsed my Facebook friend’s page, I think he might have had an idea.
Many tributes to him that I was drawn to, like a moth to the flame, mentioned how he was a great friend, a confidant who people turned to for consolation and a laugh.
I think this is more lasting, more perfect than the pessimistic foreshadowing of death. Though it’s always there, I’ll try to quiet it if it gets too loud.
Maybe the fate of my Facebook friend is what awaits me. But that is no excuse. I will always try to live well.
Jonathan, you seemed to have a knack for that. Although you lived far away in England, I wish I would have gotten to know you better. Thank you for the lesson on how to live, even with death as a constant companion.
RIP Jonathan Popham, 1981-2019.
Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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