In lives permanently changed by tragedy, we can still find meaning

I’ve been reading Wally Lamb’s latest novel, “The River Is Waiting,” and somewhere along the way I realized that this isn’t just another book I’m enjoying. It’s a reminder of why I keep coming back to Lamb’s work.

That realization sent me back to the first time I picked up one of his novels. Years ago, after finishing a hefty grad school exam, I wandered into my university’s bookstore feeling like I had earned a small reward. I was just browsing when a book caught my attention. The cover showed a hand holding a candle burning from both ends. I couldn’t explain it then, but something about that image stayed with me. Years later, it feels like the perfect symbol for the people who fill Lamb’s novels: ordinary folks who refuse to let extraordinary burdens extinguish their light.

That book was “The Hour I First Believed,” and it made me a fan of his.

I’ve reread that particular novel six or seven times, and every time I reach the final chapter, I cry. That’s unusual for me because I don’t usually cry while reading. By that point in the book, though, I’m no longer reflecting only on the characters’ struggles, I’m reflecting on my own as well.

Lamb has a way of taking ordinary people, placing an unbearable weight on their shoulders, and allowing us to watch them slowly discover that a meaningful life is still possible. Looking back, I think living with Friedreich’s ataxia has made me search for stories about people who face impossible circumstances without letting those circumstances become the whole story.

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Later, I read “I Know This Much Is True,” another novel that has stayed with me since. I also enjoyed the HBO adaptation of it starring Mark Ruffalo. I’ve had more than a few people tell me over the years that Ruffalo looks a little like me, so I can’t say I minded that casting choice.

“The Hour I First Believed” explores lives shattered by the Columbine High School shooting, while “I Know This Much Is True” follows a man caring for his identical twin brother who lives with schizophrenia. Different stories, same question: What do you do when life hands you something that cannot simply be fixed?

Lamb doesn’t write about superheroes. He writes about people whose lives are permanently changed by tragedy, grief, illness, or circumstances they never asked for. Their problems aren’t neatly solved, and they rarely return to the people they once were. Instead, they discover that life can still hold meaning after the impossible has happened.

For a long time, I thought perseverance meant overcoming the impossible. I hoped for breakthrough treatments and clinical trials, and imagined the day that life would finally become what I had pictured. I still hope for those things. Hope has carried me through difficult seasons.

But somewhere along the way, I’ve started to appreciate a different kind of perseverance: the kind that refuses to put life on hold. It’s learning to build a meaningful life while carrying something you never would have chosen. It’s finding purpose in relationships, work, faith, and little victories without waiting for every burden to disappear. The burden may still be there, but it no longer gets the final word.

That’s what I admire most about Lamb’s characters. They remind me that courage isn’t always dramatic. More often, it looks like waking up, carrying what feels futile, and choosing to love, laugh, and keep moving forward anyway.

As I work my way through “The River Is Waiting,” I realize I’m not simply enjoying another Lamb novel. I’m finally understanding why that first book cover caught my attention years ago. The candle burning from both ends no longer reminds me only of exhaustion. It reminds me of ordinary people who continue giving light even after life has asked more of them than seems possible.

If Lamb ever decides to write a novel about a guy from South Louisiana living with Friedreich’s ataxia, I have only one request. Years ago, people used to tell me I looked like David Boreanaz, so I wouldn’t object if he got the starring role in the screen adaptation. After all, every good story deserves the right cast.

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.