‘What did I do to deserve this?’ Editor Matt Rocheleau on his journey with ALS. |
At left, Matt Rocheleau stands at Boston’s Fenway Park before throwing out a ceremonial first pitch alongside Boston Globe colleagues after they won the 2021 Pulitzer Prize for Investigative Reporting. At right: Rocheleau stands at Citi Field in Queens as one of several people with ALS recognized during Lou Gehrig Day in June 2025.
Editor’s note: Since 2021, Matt Rocheleau has served as an editor on data and investigative projects for the Times Union and Hearst Connecticut Media Group. In that time, he has worked on award-winning journalism exploring harmful “restraint and seclusion” techniques in schools and the causes and human costs of police collisions, among other topics. For more than three years, he has done that work while dealing with the onset of ALS.
I was in my mid-30s and enjoying a charmed life beyond my wildest dreams: My wife and I were madly in love, our careers had taken off, and we had just moved to New York City, a place we had for years longed to call home. I felt like the luckiest person in the world.
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Then, in the spring of 2023, doctors told me I had an incurable, debilitating, terminal disease.
They said muscles throughout my body would steadily weaken — in my legs, arms, hands and core until I’m completely paralyzed; in my face, neck, mouth and throat until I’m unable to speak or swallow; and in my lungs until I’m unable to breathe.
The rare condition — called amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND) — typically kills people within two to five years.
And since my diagnosis, I’ve wondered incessantly: What did I do to deserve this?
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But I don’t mean the disease or the myriad physical and mental challenges it brings.
Instead, I’ve marveled at how my progressing disabilities have given me a front-row view of constant acts of human kindness and compassion. Even minor gestures have profoundly impacted me.
A common stereotype about New York City is that everyone is too focused on themselves, in too much........