Gifts from a debilitating disease
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Photo illustration: Axios Visuals. Photo: Carrick O'Reilly. Book cover: Courtesy of Jim O'Connell
No one wants to hear that a friend, colleague or loved one has a progressive, degenerative disease like Parkinson's.
- It was especially tough when we learned the disease affected Jim O'Connell — a fellow journalist known for his innovative ideas, sharp wit and gruff wisdom, Axios' Eileen Drage O'Reilly writes.
- When someone shares news like this, our job isn't to fix it. It's to be present, to listen and to support their priorities for living a great life, as Atul Gawande advises in his book "Being Mortal."
- It's not about you — it's about them. So, ignore the instinct to fix the disease, to assign meaning to everything, or to reach out with pity or forced cheer.
Zoom in: Diagnosed more than 18 years ago with early-onset Parkinson's, Jim took aggressive steps to slow the disease. He kept working at Bloomberg News until he decided he could no longer type fast enough for its lightning-quick demands.
- Jim has since endured brain surgery, multiple chest surgeries, Botox injections, toe surgery, bone-weary exhaustion, depression and worsening balance.
But Jim didn't retreat. He's become a bedrock for others newly diagnosed — and eventually put his experiences into words, publishing a book of intimate essays in "Incurable Gifts."
- It's a great collection of vignettes from Jim's life interspersed with nothing-held-back looks at how Parkinson's has changed his life, shares Axios Publisher Nicholas Johnston, who was edited by Jim years ago as a young congressional reporter at Bloomberg.
- And it perfectly captures Jim's witheringly blunt — and effective! — voice as an editor and mentor, Nick adds.
Case in point: Jim uses his Irish storytelling talents to great effect, Eileen writes.
- Those skills shine through in anecdotes about his spirited mother, who raised five kids with practical wisdom ("everybody keep one hand on the cart") and humor.
- When his sister, a flight attendant, invited her fellow crew members for dinner, their mom separated them into first class with fancy china and coach with mac and cheese on paper plates.
Zoom out: Parkinson's is the fastest-growing neurodegenerative disease in the world.
- Every six minutes, someone is diagnosed. More than 10 million people worldwide are living with it, according to the American Parkinson Disease Association.
The bottom line: At his recent book launch, Jim stressed that the story of his journey with Parkinson's isn't just on the "incurable" part. He also talks about the unexpected gifts he has gained.
- "Because Parkinson's slowed my walking, I began to learn patience. Because it frequently leaves me exhausted, I had to increase my determination. Because I live in almost constant pain, I am more empathetic," Jim writes.
- "So, thank you, Parkinson's, you bastard," he adds. "You've given me what everyone wants, a chance to step away from earning a living and just live. I'd offer a salute, but I can't lift my arms right now."
Learn more about "Incurable Gifts" and what to do if you're newly diagnosed.
