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Steven Tollis of Sunnyvale and Jim Ogden of Cupertino wake up each day thankful for another sunrise. They participate in the routine rituals of life. Tollis, a father, makes breakfast for his family. Ogden, a husband and educator, gears up for his day as a middle school physical education teacher and coach.
The two men don't know each other, but they share a critical link. They are two of about 20,000 Americans with the disease ALS, or amyotrophic lateral sclerosis, commonly known as Lou Gherig's disease for the New York Yankees baseball star who died from it in 1941.
A neurodegenerative disease that affects the nervous system, ALS causes a gradual loss of control over voluntary muscle movement. The causes are unknown, and there is no known cure. Those with the disease typically live only a few years from the time of diagnosis.
Ogden and Tollis are two men who are fighting to beat the disease.
Jim Ogden barks orders to his track and field team in the blazing June sun, his voice amplified and audible through a speaker near the head of his wheelchair. He is at home on the field, his deep laugh lines and sun-drenched skin a testimony to years of coaching and competing, his lanky body, reclined in his wheelchair, still that of a fighter and a winner.
Ogden is a popular physical education teacher and coach at Kennedy Middle School in Cupertino. He's been with the Cupertino Union School District since 1970 and at Kennedy for the past 28 years, with the exception of a short hiatus into the high-tech industry. He was diagnosed with ALS in May 2002 but stayed on to teach and coach throughout the 2003 school year. At first sight, doctors thought Ogden might have a brain tumor, but after extensive testing, he was diagnosed with ALS. "I held out hope until the second opinion," Ogden says. "I'd rather take my chances with a brain tumor than have this terrible disease."
Ogden says working allows him to take his mind off the disease, and he thrives off of the energy of his students. "They're smart, motivated, can-do kids," he says. He adds, "I get more from them than I can give," which is something his students and colleagues might dispute. "Mr. Ogden does his job and does it well," says Kennedy Middle School Principal Russ Ottey.
Recently Kennedy Middle School held "Jim Ogden Appreciation Day" to honor his years of service. Students presented him with a collection of heartfelt notes, photos and artwork as a token of their appreciation. The notes are displayed proudly in Jim and Joan's living room along with a large booklet containing some 200 letters students gave to him earlier in the year.
"Any students that had Jim as a teacher and coach can't help but love his love of life and be inspired by his humor and his wisdom. It's something they'll carry with them for the rest of their lives." Ottey says.
With the help of his wife, Joan Hlava, his son, Kyle, 28, his 83-year-old mother, and his students and colleagues, Jim remains positive.
Ogden has been married to Joan—a former Saratoga mayor and city council member—for just three years. The couple dated for nearly a decade before marrying.
Ogden says Joan is "everything" to him and takes good care of him. "I'm like a 215-pound baby," Ogden says. His words are sometimes difficult to understand. Joan, however, translates his mumbled words with ease.
"She's a lil' fiery thing," Ogden says.
Joan does just about everything for Ogden, including moving him from place to place. A petite 5 feet 3 inches, she finds it increasingly difficult to lift and maneuver Jim's 6-foot-5-inch frame. "The less he can do, the harder it is for me," Joan says. "It's frustrating because we always feel like we're behind the curve—just when we figure out his legs, his arms, then there's a new level of disability."
Ogden's mind is sharp, especially his keen sense of humor. "I'm a ham," he says. He jokingly refers to the device used to hoist him into bed as a "Jim piñata" because of the way he swings in the air while being lowered into bed.
He says, "I don't plan on dying. Logically I know there's an end, but I'm not looking forward to it. I still hold out hope that the worst has come. I continue to spit in the face of the disease, to fight my way out."
Steven Tollis has had a much different experience with ALS. He was finally diagnosed with ALS in 1997 after years of symptoms such as dragging his toes and stumbling. Ironically, he says, many of his prayers were answered when he came down with the disease.
"I was living the wrong way," Tollis says, recalling his days as an out-of-control alcoholic. "I actually thought that I would rather have a disease than continue living like that," he says. "Be careful what you wish for."
Tollis is a commanding presence. His blond hair pulled back into a ponytail, he resembles a biker. His beefy arms and shoulders are emphasized by his worn tank top; his skin is deeply tanned. He walks with a cane. His speech is slurred and difficult to understand, but these are the only obvious signs of his disease.
Though he is in his 14th year of ALS, Tollis' condition has been stable for the last five years, something that has confounded doctors. "They think I'm amazing," he says. Yet he knows that the disease could take a bad turn at any moment. He says he lives one day at a time.
He says he stays healthy by staying active, loving his family and placing his faith in God. "Everything I've prayed for, I've gotten," he says.
Tollis lives with his son, Jeremy, 30, and daughter, Amanda, 17, a junior at Fremont High School in Sunnyvale.
"My dad teaches me to be independent, how to take care of myself," Amanda says.
Like Ogden, Tollis says he couldn't make it without the support of his family, yet he remains fiercely independent, refusing help for tasks that may be difficult but possible for him to do.
Tollis and Jeremy share a special bond. Jeremy was born with a congenital hip problem and was in a body cast for the first six years of his life. When he was a child he developed an infection after an operation and was hospitalized for months. Tollis never left his son's side. Jeremy still lives with pain. Tollis cites Jeremy's strength as one of his main inspirations. "If he can do it, I can do it," Tollis says.
The father and son fish together locally, but once a year they go for a week in the Sierras and have a freezer full of trout to show for it.
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Photograph by Jacqueline Ramseyer
Steven Tollis works out in his garage gym every day. He is actively fighting the effects of ALS, the disease he's been living with for the past 13-plus years.
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Staying busy takes Steven's mind off the disease and keeps his body moving. He no longer works, but every morning he wakes up at 4:30 a.m., makes coffee for Jeremy, gets his daughter Amanda off to school, does the household chores and works out with weights. He still drives and often does the family shopping.
ALS can cause drastic mood swings. "It's taken a lot of patience and understanding to deal with what he's going through," Jeremy says. He says that his father is prone to both fits of laughing and crying.
Odgen and Tollis both credit organizations like the San Jose office of the Muscular Dystrophy Association and the Forbes Norris ALS Research Foundation at California Pacific Medical Center in San Francisco for providing assistance, guidance and equipment in their fight against ALS.
The Forbes Norris ALS Research Foundation has lent Ogden a custom van built specifically for someone with ALS.
Ogden says it's important to have good health insurance. Through his insurance, he has a social worker to help him with requests. His insurance paid for all but $180 of his $21,000 wheelchair.
Ogden says one of the hardest parts of having ALS is knowing that whatever he does, it may be his last time doing it. The last time he played golf, in October 2002, he hiked the whole 18 holes using two clubs as crutches.
"I know how precious life is," Tollis says. "If I'm gone, it's meant to be. If not, I'll stay ... and that sounds pretty good to me."
For more information on ALS or how to receive assistance, contact the San Jose Muscular Dystrophy Association at 408.244.1210 or visit http://www.mdausa.org; call the Forbes Norris ALS Research Foundation at 415.600.6000 or visit http://www.cpmc.org; or call the ALS Association at 818.880.9007 or visit http://www.alsa.org.
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