It was a bright and sunny day in San Diego. Steve Bell and his best friend, Jackie Willemsen, heard the welcoming sound of their race chips beeping at the starting line. Then 30 seconds into Bell's first marathon, he took off. Willemsen was fighting an ankle injury and didn't want to slow him down. "I'll see you at the finish line," she told him.
With that, Bell took off and Willemsen expected to see him 26 miles later at the finish line.
But 10 miles later, Willemsen unexpectedly saw him coming out of a portable toilet. "Seeing him at a distance was the instant energy I needed for a Mile 11 pick-me-up," she said.
As she got closer, Willemsen realized something was wrong. "I'd never seen Steve in this state before," she said. "It wasn't different because his face was covered with white salt crystals. It wasn't different because he was somewhat limping from his leg cramps, it was different because I was seeing the feeling of pain and doubt on his face for the first time in our six years of friendship."
She asked Bell how he was doing. "Not well. Don't think I did the right nutrition," he replied. Trying to remain positive, but fearful of the situation, Willemsen asked if he wanted to stop at a first aid station. "No. I'm fine," Bell muttered.
Bell was not fine, but he insisted they continue. "We started running stride-for-stride," Willemsen said. Bell running at her pace was an immediate red flag. After another mile passed, they neared a first aid station. This time Bell stopped for help.
Long before they stopped in the first aid tent, Bell's body was shutting down. "My legs are cramping due to dehydration," he told the medical assistants. Then, as if he didn't want them to hear what he was about to say, Bell whispered that he had Cystic Fibrosis.
On Dec. 17, 1983, Sally and Gene Bell welcomed their son Steve into the world. Three months later he was diagnosed with Cystic Fibrosis, a fatal genetic disease that causes difficulty in breathing due to mucus build-up in the lungs and excessive loss of salt and sweat. In those days, the diagnosis was far from promising, and Bell's life expectancy was not much more than 18 years. Despite the odds, from day one Bell met them head on. "His slogan in life has been to live each day to the fullest, and he does," Gene said.
Every morning, usually well before dawn, Bell’s alarm sounds. He quietly gets out of the bed in his tiny one bedroom apartment, just across the river from New York City in Hoboken, N.J. He tiptoes out of the room, down the hall and into the kitchen, mindful not to wake his girlfriend, Meg.
Guided only by the light in the refrigerator and the intimate familiarity of his daily routine brought on by having Cystic Fibrosis, Bell removes vial after vial of medicine and places them on the counter. After preparing his morning dosages, he straps on a vest -- a life jacket like contraption that plugs into the wall -- and is designed to break up the mucus in his lungs.
Bell turns on another machine, a nebulizer with a mouthpiece on one end, and his greatest ally in life on the other; a mucus destroying concoction of medicine and mist designed to open up his airways and kill bacteria.
Every morning, and then again each night, Bell endures this routine. He sits in his chair, quietly reading up to two hours a day, waiting for his lungs to clear. The shaking of the vest is a constant reminder of his Cystic Fibrosis, but it also provides comfort. Without it, Bell may not be here today.
As legend has it, at the age of 6, he advised his doctor that he was going to join the swim team. Dr. Gorvoy agreed, but suggested that Bell not try butterfly because it would be too difficult on his breathing. At the end of that season, he returned for a check-up, dropped a third place state medal on the examination table and said to the doctor, "Don't ever tell me I can't do something."
Despite Bell's efforts to meet the disease head on, he was not growing. At age 13 he stood only five feet tall and weighed a mere 75 pounds. Not getting the necessary caloric intake needed for growth was a constant battle between Bell and his parents.
"We had many fights at the dinner table getting Steve to eat," his mother, Sally, said. Ultimately, the decision was made for Bell to have a feeding tube inserted in his stomach to ensure he received the calories necessary for his physical growth and development. Because he did not have the fat or pancreatic enzymes to breakdown and digest food properly, Bell had to find another delivery system to get the additional 2,000 plus calories a day into his fragile body.
"I'd take my calories in at night," said Bell, who no longer uses a feeding tube but instead takes 50-75 pills per day to help with his calorie intake and digestion. Several times he'd wake up lying in his liquid meal because his feeding tube was jerked out in his sleep. "I just remember waking up at 3 a.m. and my room would smell like an old lady's burp from drinking Ensure."
A sense of humor plays an important and large role in Bell's life. It has to. During the past 20 years, he has been hospitalized nearly 40 times with each stay lasting 7-10 days. At the age of 24, he was diagnosed with Cystic Fibrosis-related diabetes.
Upon hearing the news, he says, he began laughing.
"After I was finished laughing, which I think threw the doctor off, I researched the issues and moved on,” he said.
Bell was not laughing because of another serious diagnosis, he was laughing because as he puts it, "What else am I supposed to do?"
Undeterred by all that life threw at him at an early age, Bell used his doubters and disease as motivation. In Morris Hills High School in New Jersey, he was a three-year starter on the varsity soccer team, and had every intention of playing in college. He wanted to play at Ithaca College, but there wasn’t a pre-season spot available. Instead, Bell was offered an opportunity to walk on the soccer team, and after seeing him the first day, "I knew he was going to start," said the school's coach Andy Byrne, who had encouraged him to think about Ithaca in the first place.
Four games into his season Bell did start, and he started every game thereafter for the rest of his college career. He was named captain his senior year and one of the top ten defenders in the Ithaca men's soccer program in the past 30 years. Mirroring his life, Bell's college soccer career was not without setbacks.
During his freshman season, his team made the NCAA Division III playoffs. Their reward was a first-round game further upstate in New York, mere miles from the Canadian border, on the campus of St. Lawrence University. Deep into the subzero temperatures, with a wind chill factor daring anyone to go outside, the game was to be played. If there was ever an Ice Bowl in soccer, this was it.
It was a cold so intense, no one could escape it; laboring for every breath as though the wind had been knocked out of them. Running and jumping in attempt to stay warm; seeking shelter behind one another while waiting in drill lines. Moving their arms and legs to keep blood flowing. Nothing was working. It was an unshakable cold.
On the far side of the field during pregame warm-ups, Bell found it impossible to breathe. No matter how hard he tried, no matter what he did, it was too cold. With each shallow breath he experienced a pain so intense it could only be masked by his disappointment.
He slowly made his way over to his coach and did the unthinkable: Removed himself from the starting lineup of his first NCAA playoff game.
Happily for Bell and his teammates, his team made it back to the tournament the following season. This time, he could play and not only did Bell score a goal as a defensive player, but he led his team to victory.
After graduating from Ithaca, there was a sizeable void in Bell's life. He was still playing recreational soccer, but it wasn't the same. Something was missing. That time during his day when he could escape from CF, Bell said. He went in search of a new motivation.
Bell found his motivation in running. "I run because it is my chance to be normal. I run because it is my chance to forget about CF. I run because most times, I can beat you."
Bell also runs to motivate others. As a member of the young professional committee of The Boomer Esiason Foundation, which is celebrating its 20th anniversary this year, Bell takes great pride in bringing awareness to CF, and showing others just like him that they can do it too.
As a way to raise awareness for those who have CF and want to live healthier lifestyles through exercise, Boomer Esiason's Foundation started a program called "Team Boomer."
"Steve has been one of the shining examples of the Team Boomer program," said Esiason, whose son Gunnar also lives with CF. Since joining the foundation three years ago, Bell has participated in more than a dozen Team Boomer events, and plans to run in 2013 Boomer's Cystic Fibrosis Run To Breathe on July 20th in New York City's Central Park.
"I didn't realize that Cystic Fibrosis patients have as much energy as Steve has," Esiason said. "He truly is a great inspiration, and a great human being."
Once the medical staff at the marathon learned Bell had CF, they responded with great caution and concern. Bell hates the extra attention, he always has. After telling them what was going on, he was quickly embarrassed by the attention. "I'm fine," he told the medical staff. "I just need Gatorade, pretzels and some Jolly Ranchers." After two minutes of hydrating and resting, he turned to Jackie and said, "Let's go."
Soon after leaving the first aid station, things got worse for Bell. "His attitude, his energy, his will to finish was practically gone," said Willemsen. "Every encouraging word out of my mouth was swallowed and spit out along with his mucus on the side of the road."
After running a little while longer and enduring Bell's bad attitude, Willemsen had enough. "I was trying to finish too and find strength and optimism inside; I was trying to be a good friend and stay positive with encouragement to my friend in need, and finally, I was trying to remind him how great of an accomplishment that it already was to complete 16 of 26.2 miles running with Cystic Fibrosis," she said.
She stopped in the middle of the road. "You never want people to treat you differently because of your disease, but guess what, you are. You have a lung disease," she told Bell. "Just be proud of the fact that you are running. Why can't you recognize that what you're doing today is great?"
"F*** that," Bell replied as tears rolled down his face.
After a few minutes of standing in the middle of the street exhausted and speechless, Bell was again faced with a decision. He recalled that frozen day in college when he had succumb to CF. "I knew I hadn't properly prepared for the demands of running 26.2 miles, but I also knew there would never be another time when CF took me out," he said. With that, he looked at Willemsen, and began to run.
Willemsen and Bell ran the last eight miles of the race in silence. Then, the very sound that began the race ended it. "Beep. Beep. Beep." He'd done it. 26.2 miles.
He'd finished his first marathon.
Not surprisingly, Bell wasn't satisfied. Before he wrapped himself up in a space blanket and had a medal placed around his neck, Bell already had his sights set on running the next one. "That marathon kicked my ass," he said. “Not only did it take me four hours and fifty-three minutes to finish, but it put me in the hospital for a week. I wasn't going out like that."
Since then, Bell has run six more marathons. He has finished all of them in well under four hours.
Bell is part of the Every Runner Has A Reason campaign with Dick's Sporting Goods.
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