Andrea Peet had just passed the 11th mile of the 2020 Mississippi Blues Marathon when she felt an abrupt jolt. She’d already steered around several potholes on the course, but she had seen this one too late. Her recumbent trike veered off course. As she steadied the wheels, she realized she had a bigger problem: She couldn’t pedal.
She coasted to the side of the road and called her husband, David.
“I can’t move the pedals,” she told him. She couldn’t see what was wrong, but she guessed it was the trike’s gearing system. David was in downtown Jackson, four miles away, and all the roads were closed for the race. “I’m on my way,” he said. He started running.
As she waited, Peet accepted that she probably wouldn’t finish the race. The Mississippi marathon was the 16th in her quest to complete one in each state, all while battling amyotrophic lateral sclerosis — the progressive illness more commonly known as Lou Gehrig’s disease, which takes away one’s voluntary muscle movement ability, affecting actions such as chewing, walking and talking. “We’ll just come back again,” she thought.
A half-hour later, David appeared with a large backpack. He pulled out his phone and found a YouTube video with instructions on how to fix the trike chain. Once it was reassembled, he looked at Peet, his face smeared with bike grease.
“You’re good to go,” he said.
She could pedal, only now, she couldn’t shift gears. It was just after 9 a.m. They had to be in Little Rock, Ark., by 6 p.m. for packet pickup for her next marathon the following morning. The drive was just over four hours, and they also needed to get her trike fixed.
She pedaled onward. Pain shot through her quads on steeper sections as she longed for a gear shift. She had to stop at several points to rest. She willed her legs to keep moving, even when her left knee ached. She finished the marathon in four hours and 59 minutes.
She and David stopped at the nearest bike shop for repairs before speeding toward Arkansas. They arrived at the Little Rock Marathon packet pickup just minutes before it closed.
Peet laughed to herself. This was life with A.L.S. She was always racing some kind of clock.
A Diagnosis and a Race That ‘Changed Everything’
Peet, 41, didn’t start running until she was 29. Her first run — on a treadmill — was only 15 minutes. But she found it exhilarating. She signed up for a few races and added biking and swimming to her workouts to train for triathlons.
In early 2013, Peet noticed that her right index finger couldn’t fully extend while she swam. She began struggling to put on her biking gloves, and would inexplicably fall sometimes. David noticed her speech was becoming difficult to understand.
In November of that year, she ran a 7.9-mile relay leg of the City of Oaks marathon in Raleigh, N.C. But her body wouldn’t cooperate. She had to walk all of the downhill sections to keep from falling.
It was the last footrace she would run.
Peet assumed her symptoms were due to some sort of injury, so she scheduled an appointment with a physical therapist. Two months later, she visited a Georgetown University neurologist who performed various screenings. He initially ruled out A.L.S.
For the next several months, doctors and specialists were unable to pinpoint a diagnosis. Peet’s physical condition worsened. She started using a cane to walk, then two walking sticks and a walker.
In August 2014, a Johns Hopkins neurologist confirmed what she and David had suspected: Peet had A.L.S. Life expectancy for someone with A.L.S. is two to five years, and there is no cure. She was 33.
Peet was frustrated she had spent close to a year of that life expectancy trying to figure out what was wrong. Now, she had one thought: “I have no more time to waste.”
Several months prior, Peet had signed up for a fall sprint triathlon with a friend, Julie Wesner. She could still swim, albeit slowly, and she could walk with assistance. But since she couldn’t balance on a bike anymore, she called Wesner to cancel. Instead, Wesner asked if she had looked into a recumbent trike. Peet bought one the next weekend.
They would do the race together. Peet used two trekking poles for balance during the running portion. Her toes curled, her feet dragged, and her knees locked with every step. Wesner held her arm the entire time. They were the last two finishers, greeted by a crowd of spectators who had waited almost an hour to cheer for the duo.
“It changed everything,” Peet said. She described the race atmosphere as “a laser filled with the very best of humanity, aimed directly at me.”
She decided to keep racing, as long as her body would allow her. She established a daily workout routine — pool exercises, Pilates training, weight lifting, and trike rides — to stay active.
In October 2016, she started her own nonprofit, the Team Drea Foundation, to raise awareness and funds toward A.L.S. research.
Identifying a New Goal
Peet surpassed the average A.L.S. life expectancy in the summer of 2019.
In doing so, she realized that she was tired of waiting for the disease to kill her. So Peet brainstormed the biggest, most daunting challenge she could try: to become the first person with A.L.S. to complete 50 marathons in 50 states.
Peet wasn’t sure she would live long enough to finish. And David was concerned about her physical well-being: Would that level of activity — both racing and traveling — accelerate her symptoms?
“I don’t know how much time I have left,” she told him. “I’ve got to make it count.”
Whether Peet should be racing at all is a question doctors and A.L.S. researchers have yet to conclude.
A.L.S. causes muscles to atrophy, leading to eventual paralysis and the inability to swallow, speak, and breathe. But after Peet lost her ability to walk independently and speak clearly, her subsequent disease progression has been slow, said Dr. Richard Bedlack, her A.L.S. physician at Duke University.
Dr. Fernando Vieira, the chief executive and chief scientific officer at the A.L.S. Therapy Development Institute, who has tracked Peet’s progress while she has collaborated with the institute, calls her “an extreme outlier.”
“I don’t know anyone else in the A.L.S. community who can have the eight-year journey she’s had where she is still doing these marathons,” he said.
By early March 2020, Peet had completed 17 marathons in 17 states, with the help of a rotating cast of family and friends. She and David were scheduled to fly to California for her 18th marathon on March 20, 2020. But the pandemic intruded, and races were abruptly postponed, then canceled altogether.
As April turned to May and May to June, Peet was restless. Each day, she rode her trike around her cul-de-sac. In June 2020, she completed the Tri-State Trek, a 270-mile race held virtually instead of on its usual route from Boston to Greenwich, Conn., circling round and round that 0.1-mile loop.
When a few marathons reopened in August, Peet found a series of three races in Idaho, Utah, and Wyoming scheduled to be held over three consecutive days. She and David packed their car and drove west from their home in Raleigh.
By the end of 2020, she was halfway to her goal.
Her Dream Race, Her Way
Ever since setting her 50-in-50 goal, Peet had dreamed of racing in the Boston Marathon.
But she had been rejected entry due to the official rules within the Handcycle Division, which forbids her type of trike.
The only way Peet could officially enter was if someone pushed her in a wheelchair. She was determined to race Boston on her own.
So the day before the famed race, she and David loaded their car and drove to the start line in Hopkinton, Mass. The 26.2-mile course was marked in preparation for the next morning, but the roads were still open. Three friends would cycle alongside Peet, and another would drive behind them with the car’s hazard lights flashing.
Peet pedaled through the first miles in the quiet of early morning. The air was crisp and cool; as the sun began to rise, joggers and bikers gave her a wave or a pumped fist. Peet waved or smiled back.
Peet couldn’t look at runners for the first year after her diagnosis. If she accidentally did, she would look away and cry.
Like the estimated 25,000 Americans living with A.L.S., her daily life is a struggle. An affable extrovert, she often chooses to remain quiet around those who can’t decipher her slurred speech. When she was asked to be a guest on a podcast, she had to have a friend speak for her. Typing an email can take 45 minutes. Crossing a street during the duration of a crosswalk signal is almost impossible.
Recently, when a wheelchair was not waiting for her at an airport gate, Peet headed toward baggage claim with her walker. She maneuvered slowly, her upper body leaning right, her left foot dragging. She arrived dripping in sweat, exhausted. But these are good problems, Peet said. She knows that someday, she won’t be able to walk at all.
Riding the trike, she said, is the only time she feels free. She thinks about what her muscles can do rather than what they can’t.
She made the famed Boston Marathon turn — right on Hereford, left onto Boylston — flanked by a group of runners who had joined her.
Friends were waiting for Peet at the finish line, and had told nearby policemen about her race. The officers cleared the final quarter-mile of Boylston Street for Peet’s arrival. As she crossed the finish, she grinned wide, both arms raised.
Finishing 52 Marathons
Peet does not know her own life expectancy. But she does know how she wants to spend her remaining days: raising awareness and money for A.L.S. research (to date, Team Drea has raised $850,000), writing a memoir, filming a full-length documentary about her journey and racing.
Peet’s final 50-in-50 race (she will have completed 52 marathons by then) was on Prince of Wales Island, in Alaska, on Saturday.
“I don’t want people to be like, ‘A.L.S. isn’t that bad, she’s out doing marathons,’” Peet said. “I don’t know anyone else like me. But that doesn’t mean that they’re not out there. I want people to try to keep fighting.”
While on her trike, Peet can remember the feeling of running: one foot hitting the ground, then the other, arms swinging back and forth, lungs filling, the steady cadence of breath and body.
“I am a runner,” she tells herself as she pedals.
Source: NY Times