‘Help Us Keep Hope Alive–Join Our Fight For Life’ 8/31/2003
David Oliver Relin
Fighting every day against crippling Lou Gehrig’s disease, Steven Bishop has a richer life thanks to the Muscular Dystrophy Association and the generosity of millions of Americans. But he needs you to help him help others.
By David Oliver Relin
In their first life together—their life before the disease—Steven and Jennifer Bishop focused on achieving their American Dream. By his early 30s, Steven was a successful data sales manager. And after four years of trying, Jennifer finally had given birth to their son, Christopher. Nestled in a luxurious home they’d designed and built in the Denver suburbs—with a Mercedes parked in the garage and savings parked in an investment portfolio—the Bishops seemed to have it all.
Then, during the summer of 1998, the overwhelming change the Bishops were about to undergo announced itself, as such things often do, without much fanfare. While building a deck on his new home, Steven was bothered by a pain in his right forearm that wouldn’t stop throbbing. Two years later, at a business meeting, he reached to shake a client’s hand, and his arm cramped up so badly that he doubled over in agony.
That incident scared Steven enough that he was referred to a neurologist. As the doctor examined him—testing how his muscles responded to stimuli—“he gulped like I’ve never seen a doctor gulp,” Steven says. Then he announced his conclusion: Steven had amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig’s disease. “Like most people, I’d always taken my good health for granted,” he says. “I’d golfed and skied and missed maybe a day or two of work in 10 years. Then my new life began.”
“Our New Dreams”
After a series of tests confirmed the diagnosis, the Bishops surfed the Web for information about ALS. Like most people, they knew next to nothing about the disease, except that the great Yankee first baseman Lou Gehrig died from it in 1941.
Steven and Jennifer learned that ALS is a degenerative disease of the neuromuscular system that most often strikes adults. Typically, as ALS progresses, patients lose fine motor control, then the ability to walk, talk and even swallow, often ending in complete paralysis. Some ALS patients, such as physicist Steven Hawking, have survived for decades with the assistance of a ventilator. But the stark reality was plain for the Bishops to see: Life expectancy after an ALS diagnosis is typically two to five years. “After our diagnosis,” Jennifer says, “our old lives and our old dreams needed to be laid to rest. And we had to decide what our new dreams would be.”
“I never asked, ‘Why me?’” Steven explains. “Instead I decided to ask, ‘What’s the most meaningful way we can spend whatever time I have left?’”
Together, the Bishops methodically tidied up their affairs. Steven could no longer drive and soon felt too fatigued to work. With the supplemental disability insurance they’d purchased when Jennifer became pregnant, they calculated that they could get by. The first thing to go was the symbol of the life they were leaving behind—their Mercedes. The man who bought it asked why the Bishops were selling such a new car. After Steven explained, the buyer pulled Jennifer aside anxiously and asked if Steven’s disease was contagious.
New Mission
When Jennifer heard that, “a light went off,” she says. “I knew we’d dedicate whatever time we have to raising awareness about ALS.” Since that day, Steven and Jennifer have teamed up to tackle their new mission. They helped establish a Muscular Dystrophy Association-sponsored support group in Denver for ALS patients. (There are about 30,000 cases nationwide.) They began to speak in public about the importance of preparing financially for the catastrophes that can strike anyone. And as co-chairpersons of the association’s ALS Division, they’ve brought America the message that the disease doesn’t have to mark the end of a meaningful life. With new drugs and treatments funded by the MDA, patients can live with hope while they wait for a cure. “Without hope, this disease is a killer,” Steven says. “But you can help us keep hope alive.”
Last year, the Bishops appeared on the MDA Telethon and told their story. Jerry Lewis phoned Steven a few days later. “I’ve been talking with some experts,” Lewis said, “and they tell me that the mind is the No. 1 enemy of the ALS patient. So I’m appointing myself your positive mental-health counselor.”
In his frequent calls since then, Lewis has urged the Bishops to take advantage of the MDA’s cutting-edge ALS resources, which include a network of 230 hospital-affiliated outpatient clinics and 30 MDA/ALS centers with access to the leading specialists doing the latest research. Lewis invited the Bishops to his home in Las Vegas and on his yacht in San Diego, where he taught Christopher, now 5, how to start the boat. “That relationship has been the biggest honor of my life,” Steven says. “To do so much for us with all the health problems he’s had, I can honestly say that Jerry Lewis has the biggest heart of anyone I’ve ever met.”
Every Day Is Saturday
But the most meaningful change in the Bishops’ lives hasn’t been jet-setting around the country. It has been the quality of their life at home. “We’ve spent more time with friends and family than many people do in a lifetime,” Jennifer says. “At our house, every day is Saturday. As long as Steven is with us, we don’t have time to have bad days.”
Today, physicians say Steven has one of the slowest-progressing cases of ALS they’ve seen. Still, he’s lost several pounds of muscle, he suffers persistent cramps, and he’s beginning to have trouble swallowing. What bothers him most is that he can’t play with Christopher for more than a few minutes.
Even so, Steven says, “I’ve honestly never been happier. We’ve never lived our lives this fully before.” He describes one recent summer evening. The Bishops had dinner in the backyard and watched the sun set over the Rockies. Then father and son lay on the grass, looking at the stars and talking about big topics like God and the future. “I told Christopher that I didn’t know how long I’d live,” Steven recalls. “But neither does anyone else, and that seemed like a pretty fair deal.
“You know,” Steven adds, “now I understand why Lou Gehrig gave his farewell speech at Yankee Stadium the way he did. I feel like the luckiest guy in the world too. I’ve been given a chance to truly appreciate my life while I’m still living it.”
‘Help Keep Our Spirits Up On The Road To A Cure’
Poet Mattie Stepanek was featured in PARADE’s 2002 Labor Day issue. Mattie has lived with mitochondrial myopathy since he was 2, but it has not deterred him from living his dreams. We caught up with the busy teen in his second year as MDA National Goodwill Ambassador.
In his short time on Earth, Mattie Stepanek has accomplished more than most people who reach a ripe old age. Despite living with a rare, life-threatening disease, he has made time to become a best-selling poet whose Heartsongs books have inspired millions. This July, Mattie celebrated his 13th birthday after spending much of the spring in a hospital. “Making it to my birthday was incredible,” Mattie says. “I was in intensive care for four months, and for a while I didn’t know if I’d live. Without my mom, my doctors and everyone out there praying for me, I never would have made it.”
Despite his fragile health, Mattie is working harder than ever. He helped 15-year-old singing star Billy Gilman, the MDA National Youth Chairman, adapt Mattie’s poems for Gilman’s album Music Through Heartsongs. With former President Jimmy Carter, Mattie has been interviewing great peacemakers around the world for a new book. And, as always, he is raising money and awareness for MDA and the more than 40 neuromuscular diseases covered by the association. This weekend, Mattie will appear on the MDA Telethon and encourages everyone to tune in. “This isn’t just a ‘boo-hoo, pity me’ story,” Mattie says. “Real kids like me are dying, and we need money for research so we can keep our spirits up on the road to a cure. I may not live to see a cure, but I want to help other kids live way past 13.”
— D.O.R.
[…] and marketing the product that he credits with saving his life. (See Steven and his family on the cover of Parade magazine below.) And, of course, there was the brilliant and dynamic seminar leader, Joel Roberts, who […]
God bless you, Steven and your family. I too have ALS and look forward to talking with you. You are in my thoughts and prayers…Annie Dorris..
GOD WILL CONTINUE TO CARRY YOU THROUGH YOUR JOURNEY,I WILL BE PRAYING FOR AND YOUR FAMILY…GOD BLESS…