Thanking my teenage self for never giving up on me
I imagine a conversation with my newly diagnosed, 14-year-old self
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Sometimes when I think my own little victory is simply about existing, I imagine myself answering questions that my 14-year-old self would’ve loved to have asked if he could see me now.
I’m talking about the kid who was just beginning to understand Friedreich’s ataxia (FA) after reading about his diagnosis for the first time.
His questions wouldn’t be about job promotions or participating in a clinical trial. He’d want to know about life, since the future was so hard for him to imagine.
So I imagine my 14-year-old self, still able to walk. Sure, he was wobblier than most people his age, but I hope he treasured the ability.
I picture him giving me that shy, uncomfortable smile that he never really grew out of.
“I guess we do end up in a wheelchair,” he’d say after seeing me in my chair, “but do we use the chair 100% of the time?”
I’d nod and he’d frown. “But life doesn’t stop because you sit down,” I’d say. “It changes. Some things become harder, and others become impossible. But life keeps moving forward.”
“Life’s not over after that?”
This would be hard for him to ask, and I’d recognize his red eyes and how he yawned a lot. He’d been up most nights reading about the diagnosis, worrying, praying, and fretting, rarely with dry eyes. No one but he and I would know that, and his secret is safe with me.
“Not even close, buddy,” I’d reply.
The next question would make me laugh because it’s exactly what I’d expect from my teenage self.
“Do we get married?”
“No,” I’d say.
He’d frown again, although I really don’t want to discourage my younger self.
“The right person just hasn’t come along yet,” I’d explain. “Maybe she still will, and maybe she won’t. But I’ve learned that a meaningful life isn’t something another person gives you. It’s something you build, and we’ve built a pretty good one.”
That answer would surprise him.
“So, are we a writer?”
“Not really, but I write a column every month, and I wrote a children’s book,” I’d say, which would get his attention. “The book isn’t a bestseller, but I’m proud of it, because it helps kids living with FA feel less alone.”
He’d nod and look down at the familiar navy blue cross on his school uniform and ask, “Where is God in all of this?”
To that, I’d pause for a beat and acknowledge, “I don’t know. We prayed for healing for a long time, and it didn’t arrive. So I can’t say that faith occupies the same place in my life that it once did.”
I’d want him to hold on to hope, though, so I’d add, “Our faith got us through a lot of our lowest points. I’m grateful for it. It turns out, the things we loved most about God never left us: mercy, compassion, looking out for people who are hurting, standing with the underdog, and loving people without expecting something in return. If there is a God, and if those things matter to him, then we’re still definitely on his side.”
He’d take all of this seriously, then look away and ask one final thing.
“Does it matter?”
It’d be the simplest question of the afternoon, but one that would carry the most weight.
The question wouldn’t be about wheelchairs, careers, relationships, or faith. I know myself well enough to understand what he’d mean. He wouldn’t be asking if FA mattered; he’d be asking whether the struggle mattered, whether the effort mattered, whether he mattered.
I’d think about the readers who’d written to me after a particular column and the families who’d said my book helped them make sense of their own story. I’d think about the friendships that grew from shared struggles and the career I wouldn’t have had otherwise. It’s a life that looks nothing like the one I’d imagined at 14, yet somehow it matters more than I’d expected.
“Yes,” I’d respond, “it does. Not because we became famous or got everything we wanted. Not because life unfolded according to plan. It matters because we loved people, because we showed up, and because some people hurt a little less because we were here. I think that’s the point, at least for us — not to get everything we’d hoped for, but to leave people a little less alone than they were before we found them.”
For the first time, I’d see him smile.
“There’s one more thing I need to tell you,” I’d say. “Thank you.”
He’d look confused. “For what?”
“For never giving up on me.”
Note: 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. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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