The Perfect Bucket List: Finding Hope in a Hopeless Disease

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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.

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Bob Schoeni & Gretchen Spreizter

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.

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Amanda Mercer, left, with the relay team who conquered the English Channel.

“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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Watch This Brave Kid Stand Up to His Entire Class and Demand to Be Seen

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It takes a lot of guts to stand up to bullies. It takes even more guts to stand up to your entire class. In the video below, Jake, a young man with autism, does just that.

“I don’t think you guys see me for me,” Jake says. “I want you guys to see me for me and really try to be my friend.”

The clip was filmed for The BULLY Project, a social anti-bullying campaign inspired by the 2011 documentary, “BULLY.” Since the movie aired, Jake, who’s now a junior in high school, told Upworthy that social life has improved for him — he’s even joined his high school football team.

He told Upworthy:

For other kids with autism, if you’re getting bullied, try and tell them to stop and not give a reaction — if that doesn’t work, go to an adult. It might seem hard cause we can’t handle stress as well as other kids, but you will get through it and you’ll be awesome — actually you already are!

Watch Jake stand up to his bullies:


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Mother’s Photos Capture What It’s Like to Live With Autism

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On the day Rosie Barnes’ 3-year-old son, Stanley, was diagnosed with autism, the mother of two sat in her living room with the lights off. In front of her, leaflets from the doctor’s office spewed information about the developmental disorder. Barnes began to weep as she read through statistics, facts and definitions. She couldn’t find comfort in what felt like pages of jargon-filled instructions. Of course, she wanted to learn about autism, but she wanted to go deeper than that. She wanted to understand what her child was feeling.

“I’ve always felt that for me, text books weren’t necessarily a good starting place… I could never actually find [Stanley] in the textbooks and I was left feeling confused and anxious,” Barnes, 48, told The Mighty in an email.

Barnes, a London-based photographer, had been composing pictures of Stanley since he was born; she was fascinated by her son’s point of view. But after his diagnosis, she realized she had actually been photographing autism’s point of view.

“Stanley was living in a world far more complex than I could ever imagine,” Barnes told The Mighty. She wanted to document that. Today, Stanley is 17 years old, and Barnes still captures his life in a photo book called, “Understanding Stanley,” where pictures are accompanied by statements from adults on the autism spectrum or from those who support individuals with autism.

Understanding Stanley swing

“Stanley needs a very clearly defined framework and fixed personal routines to keep him calm and happy.”
— Rosie Barnes

Understanding Stanley mural

 He sat there for a very long time, just staring at this kind of madness.”
— Rosie Barnes

Barnes wants her photographs to reach people at an emotional level, a far more important place to start, she says, when trying to understand autism.

“I want to make the invisible visible,” she told The Mighty, “and I suppose I want people to feel, not just to think.”

“It feels like I’m trapped in a world where everyone has their backs to me.” — Nita Jackson, on the autism spectrum

“We do things in different ways but we are of the same worth and value and we are not broken and do not need to be fixed or cured.”
— Jean-Paul Bovee, on the autism spectrum

As Barnes works to raise money for “Understanding Stanley” to be published, she continues to add to the project and spread a message close to her heart:

“I think it’s a realistic book. It’s not very negative, and it’s also not unrealistically positive. It just reflects what I think autism is: Not wrong, just a different way of experiencing life.”


UPDATE: “Understanding Stanley” reached its fundraising goal and is now available here.

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Couple's Love Story Chips Away at the Stigma Surrounding Down Syndrome

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What makes this marriage special is the fight, devotion and maternal love that led up to it.

When Jessica Smith was born with Down syndrome, a doctor told her mother, “This is a bummer, this child is a mongoloid.” When Austin Underwood was born with the same genetic condition, a doctor told his mother she didn’t have to take him home. Neither mom accepted those negative outlooks; when they met through a Down syndrome support group in Dallas, it only made sense that they would become fast friends. Their children, on the other hand, became fast soul mates.

This summer, Underwood and Smith, who’ve been inseparable since they were 4 years old, are getting married. They already live together independently and both have jobs. This marriage, their moms say, is one more major step in erasing the stigma surrounding Down syndrome.

Meet the couple and the moms who never let their kids be defined by their disabilities in the Today show segment below:

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This Teen Is Planning to Carry His Younger Brother on a 40-Mile Journey

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The word “extraordinary” is overused on the internet — but the bond between two brothers from Temperance, Mich., is truly extraordinary.

Hunter Gandee is just 14 years old, but he already knows what he wants to be when he grows up — a researcher, so he can help people with cerebral palsy, the neurological disorder his 7-year-old brother, Braden, lives with. In the meantime, he’s spreading CP awareness with a journey that’s making national headlines. In June, he’ll walk 40 miles over two days, from Bedford Junior High School to the University of Michigan — with Braden on his back.

“The walk demonstrates the physical and mental challenges faced every day by those affected by cerebral palsy,” Hunter’s Facebook page, “Cerebral Palsy Swagger,” reads. “But with support, assistance, and a good attitude, all goals are within reach.”

Hunter’s begun to get the word out and raise money by making “Cerebral Palsy Awareness” bracelets. He’s already earned $350, according to The Toledo Blade. On the day of the walk, while his parents drive alongside, he hopes to do more than raise money — he wants to grab the attention of  “up and coming leaders, doctors, engineers and entrepreneurs, and show them the face of cerebral palsy and the need for innovative ideas in mobility aides and medical procedures.”

“Braden is the world to me. He’s done so much for me. He inspires me, helps me fight through problems,” Hunter told Bedford Now. “People say I’m helping Braden out but sometimes it seems like he’s helped me more than I’ve helped him. I don’t know where I’d be without him.”

Braden must feel the same way.

If you’re interested in making a donation, head to the University of Michigan Physical Medicine and Rehabilitation Department’s Cerebral Palsy Research Fund.

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There's a Serious Problem in the Military. One Mom Is Going to Fix It.

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There was a time in her life when Wendy Kruse felt like she was in the only military family that had a child with a disability.

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One of her two daughters, Addie, has spastic quadriplegia cerebral palsy and nonverbal autism, among other developmental delays. In 2011, when Kruse’s husband, Kevin, a master chief petty officer in the navy, was deployed to Afghanistan, she was left in their Seattle home feeling isolated by the unique challenges her family faced. That aloneness persisted until the day she went to a meeting for military spouses and met a mom whose child has autism.

“We looked at each other and thought, ‘Oh gosh, we can’t be the only ones,’” Kruse recalls. She realized didn’t have to be alone.

A few weeks later, Kruse and that mother set up a meet-up for military dependents with special needs family members. Ten people showed up. They began meeting monthly. In time, that number became 200.

“We thought, ‘OK, we’ve got great support,’” Kruse recalls. “But what about the families in Alabama? What about the families in Japan?”

They decided to take their mission online and to a greater scale. Thus began the Military Special Needs Network‘s journey — one that grew quickly thanks largely to Facebook. Today, 3,600 families are a part of Kruse’s network. All 3,600 have her phone number. MSNN is about support, building relationships, educating and staying positive, Kruse says. Its members call each other in the middle of the night. No topic is too sensitive to discuss.

“We get the questions the professionals don’t,” Kruse says. “And if we don’t know the answers, we find them.”

Today, Kruse lives in San Diego and has her eye on making MSNN an official nonprofit. She and two fellow military spouses, Kelly Hafer and Miranda Fort, run its day-to-day operations — hosting weekly Q&A sessions on Facebook, putting together resources for military families, organizing events so members can meet each other, continuing outreach and working to fill gaps the military doesn’t supply for families with special needs.

“When there’s a party on a navy ship, we can’t go because there’s no wheelchair access,” Kruse explains. “If there’s a Christmas party with thousands of people there, a person with behavioral issues wouldn’t be comfortable. The military does an OK job at supporting us, but there’s more to be done.”

Kruse sees herself as the arms, legs and voice of her daughter, Addie. MSNN is a place to magnify that voice.

“It’s a fight, but it doesn’t have to be a negative fight,” Kruse says. “It doesn’t matter if you’re marching on congress or standing up to the PTA, it’s important that you’re your child’s best advocate. We’re just the information and support.”

“Every family is different,” she adds, “but together, we build one heck of a community.”

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