The Perfect Bucket List: Finding Hope in a Hopeless Disease
It’s a 2-year-old story. A community rallies around a neighbor with amyotrophic lateral sclerosis (ALS), more commonly known as “Lou Gehrig’s Disease.” Six swimmers take on the English Channel to raise money and ALS awareness in his honor. One of those six is diagnosed with stage 2 breast cancer four months before that swim but completes the challenge, anyway. A world record is broken.
It’s a 2-year-old story. But its characters aren’t finished telling it.
In 2008, when doctors told Bob Schoeni, a research professor at the University of Michigan, that they were 99 percent sure he had ALS, the father of two sat defeated. He figured he had two or three years to live before the debilitating disease would take him from his wife of 18 years, Gretchen Spreitzer, and their 8- and 10-year-old daughters.
“Devastating,” Schoeni, now 50, recalls. “Just devastating.”
He realized he had some reassessing to do — how would he live his now certainly shorter life? What were his goals and aspirations? Would he and his wife go after a luxurious, world-wide bucket list? Would he try to pack decades of experiences into a shrinking timetable? At one point, the answer became clear to him: He loved the life he already had. That bucket list was being marked off by family dinners and fulfilling work and afternoons with his wife. If ALS’s aggressive symptoms were going to soon start taking their toll on him, he’d spend the remaining time living out his already perfect bucket list — researching and teaching, coaching his daughter’s youth field hockey team, and spending time with his family.
How would he live his now certainly shorter life? Exactly as he had been.
“I think it’s healthy, wonderful even, for us to think about how we might choose to live if our time here is shorter than expected,” Schoeni says now. “I was fortunate to already be living the life I wanted.”
“An important piece of all this is to feel like every day, what you’re doing brings joy and meaning in your life to those around you,” Spreitzer adds. “Bob certainly takes a lot more time these days to listen and make connections with people on a day-to-day basis.”
Schoeni and his family were already beloved in their neighborhood when they got the diagnosis. Proof of this were the neighbors who, less than six weeks later, approached them with an idea: they wanted to start a nonprofit — Ann Arbor Active Against ALS (A2A3)– to raise funds to find effective treatments and ultimately a cure for ALS.
“We’re actually not involved in the governance of the nonprofit. I think they did that on purpose, as if not to burden us with having to make decisions or investing too much time,” Spreitzer explains. “Sometimes we feel uneasy about it, that they’re devoting so much time of their lives into doing these activities for us. But I can’t tell you the number of times people have said genuinely, ‘We need this almost as much as you need it. It’s been a privilege to be a part of something bigger than ourselves.’”
From A2A3 is where that 2-year-old story began, really. Because one of its board members, Amanda Mercer, a former swimmer at Michigan State University, one day got it in her head to form a relay team and swim the English Channel to raise $100,000 for ALS research.
“We’d been thinking about doing the swim for a little bit, but no one was super excited about it,” Mercer, now 42, recalls. “Then it hit me. We needed to do this swim for Bob. It suddenly took on a whole different dimension that had so much more meaning.”
“I kind of thought she was joking at first,” Schoeni recalls. “Over time it became clear to me that when Amanda sets her mind to something, it gets done. This was going to happen.”
For a year, Mercer and five other swimmers trained. But in March 2012, four months away from the race, she found she was facing a larger, more terrifying challenge.
“That word — ‘cancer.’ You hear it, and it just scares you. The unknown scares you,” Mercer says. She was tempted to surrender to self-pity. Then, she stopped herself.
“I had to flip that perspective around because it wasn’t going to do me any good,” Mercer says. She went to her first doctor’s appointment with a calendar and a plan. She’d have a lumpectomy and begin her chemotherapy. She’d swim the Channel, come home and continue her radiation. Doctors told her they didn’t think she’d be able to make the swim — she’d be too tired from treatments. Mercer shook them off. “I was gonna swim that Channel,” she says.
When Speitzer found out about Mercer’s diagnosis, she called her neighbor up.
“I just can’t believe the timing in all of this,” Speitzer said, assuming Mercer would have to surrender her spot on the relay team. “It’s all so ironic.”
“Isn’t this actually the best timing?” Mercer replied. Speitzer was a little bit shocked.
“I was in the best shape of my life, and I had hope,” Mercer explains now. “I had hope that Bob didn’t have when he was diagnosed. And now I had this goal that I could focus on instead of my disease. If I was going to get cancer, that was the time to get it.”
On July 27, 2012, those six women swam the 42-mile English Channel in a world-record time of 18 hours and 55 minutes — a feat captured in the documentary below, “One Step Ahead.” They raised $120,000 for ALS research.
“When we initially broke the record, for some reason I wanted it to feel bigger,” Mercer recalls. “It wasn’t until weeks later that I realized it wasn’t about the record at all. It was about hopefully making a difference in Bob’s life and in the lives of people with ALS. It was about giving them hope.”
When Mercer returned home to finish her radiation, her eyes began to bother her. As a precaution, her optometrist sent her to an ophthalmic oncologist who suggested a cat scan, which later revealed the lining of an aneurism. They scheduled Mercer for a craniotomy, where they found that aneurism ready to burst. But they’d found and removed it just in time.
“In a strange twist of fate, breast cancer saved my life,” Mercer says. Today, she has a clean bill of health.
It’s been two years since that swim, but Schoeni uses its memory to remind him that he and his family will always have support. He’s lucky, he says, because his symptoms have progressed slower than doctors anticipated. He’s learn to accept help — something he found difficult when first diagnosed.
“I live a quote, unquote, normal life,” he says. “I certainly can’t do things that I used to be able to do, but I can do things and have developed abilities that weren’t there before, too.”
Schoeni will always tell his story to anyone who asks, but he’s hesitant to compare himself to others with ALS — he doesn’t want to be mistaken for the voice of the disease or to generalize the experience of having it.
“But I believe in openness,” he says. “If others can learn from my situation in some way, I see that as a good thing.”
“I guess we feel like if our story can help give others a sense of hope when they’re in difficult situations, then it’s worth sharing,” Spreitzer adds. “It’s empowering. It’s about facing challenges and helping others. That makes it worth telling.”
Watch “One Step Ahead” below. These 28 minutes are worth your time.
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