by Glenn Stout
Shannon asked what would happen if she delayed the shots and concentrated on eating a healthy diet and taking care of her body. What would be the risk in putting off the medication?
If she didn’t take the treatment, the doctor promised, she’d be in a wheelchair in a year. She asked if he objected to her entering a footrace before the final round of tests. She didn’t tell him the race she had in mind was Badwater. He said not only was it okay, he encouraged it. But what he said next worried her: it would probably be her last race.
Shannon decided to postpone starting Copaxone until she ran her third Badwater in July. Afterward Griefer took her and the boys to Bora-Bora for two weeks. Shannon wasn’t sure if it was a reward for her grit, or a consolation for her disease, or even partly a celebration that by necessity she would be spending more time at home. After the South Pacific, she promised, she would start taking her medicine.
But at night, inhaling the scent of tropical flowers, listening to the waves, she wondered if she needed to. She’d just finished one of the toughest races in the world, for the third time, and felt okay. Maybe there will be a miracle.
There was, of a sort. Back home in Hidden Hills, late at night, just days before the final tests were to begin, Shannon woke Griefer. She asked him to go to the kitchen and bring her some jack cheese and sour pickles.
The MRIs and treatment would have to be postponed during the pregnancy.
When Jet was born in April 2007, Shannon stayed overnight in the hospital. “Are you an athlete?” a nurse said.
“Yes, why do you ask?” Shannon said.
“Because you just gave birth by C-section and your pulse is 38.”
Shannon wasn’t taking her medicine and she felt fine. She felt better than fine. She had nursed Moe and Ben till they were two, and she decided to nurse Jet for a long time too. She couldn’t take Copaxone while she was nursing.
Eventually, when Jet was older, she started giving herself the shots. But she didn’t like them. They hurt. They left welts, and made her feel run-down. They made her too weak to run. So she took them only sporadically. If she had a really bad attack, she could get an IV drip of steroids to reduce her inflammation and lessen the pain.
And so it went. Over the next 10 years, Shannon finished eleven 50-kilometer races, ten 50-milers, one 100-K, seven 100-milers, and three 135-milers, the longest events all through Death Valley, in large part without taking the medicine. Who said running didn’t strengthen her immune system, and that running and a healthy diet hadn’t helped slow down the MS? She wasn’t paralyzed or in a wheelchair, was she?
Nicholas G. LaRocca, PhD, vice president of health care delivery and policy research at the National Multiple Sclerosis Society in New York City, allows that the disease affects different people in different ways, and each person copes with MS in their own way.
Shannon’s friends are even more accepting. Record-setting ultrarunner Jenn Shelton says, “Shannon’s decision is between herself, her sons, her doctors, and whatever god she believes in. But mainly it is a decision for herself. In her case her self-care seems to do as good a job as the best Western medicine money can buy. And when she is doing well, I’m happy for her. I’m not there to tell her how to manage her disease. I’m there to be her friend and listen when she wants to talk. I just love her. Even if she is a triflin’ ho.”
U.S. Olympic bronze medalist and record-setting marathoner Deena Kastor, another good friend, has privately suggested to Shannon that she be more conscientious about her medication but won’t judge. “She is an inspiration,” Kastor says. “And she has touched more lives than she can imagine.”
Everyone who knows Shannon says running makes her happier. She says she can’t imagine living without it. And the National MS Society, which encourages exercise as a way to manage many symptoms of the disease, offers only this caveat: “Periods of exercise should be carefully timed to avoid the hotter periods of the day and prevent excessive fatigue.”
Shannon has gone years without taking a single shot. She has run despite cramps and passing out and IVs. She has run even when she had difficulty swallowing. She has visited the ER so many times that she has lost count.
On one such visit, in October 2014, Shannon lay on a bed at West Hills Hospital & Medical Center, in the San Fernando Valley, gasping like a trout.
Doctors were confused. Her heart was fine. Her vital signs belonged to a serious athlete half her age. They thought the breathing difficulties might be caused by MS, but weren’t sure, and wanted her to stay at the hospital, at least overnight. She said she’d rather go home. It was 11 p.m. A doctor asked if she knew what “AMA” meant. She did. Against medical advice.
In the weeks after, she caught up with three girlfriends, all ultrarunners. Yes, she told them, it was still on. Of course, she still wanted them to come. Hell, yes, she still thought it was a good idea. She’d entered and failed to finish four 100-milers in the past four years. But they knew she’d try this one, with or without them. So on July 28, 2015, in the height of a very hot summer, they met in Death Valley, at the hottest spot in North America, Furnace Creek. There, Shannon would run Badwater a final time—the last ultra of her life.
Jenn Shelton and Connie Gardner, another good friend, wanted to support Shannon in the race, to offer support and to assist in case of a medical emergency, which both believed likely. They thought Shannon wouldn’t make it past the second checkpoint at 42 miles, at the tiny desert town of Stovepipe Wells, so they made plans to climb Telescope Peak that day while Shannon recovered in a motel room. Deena Kastor would drive from Mammoth Lakes and meet the gang on Wednesday.
Shannon started running at 8 p.m. on Tuesday, July 28. A month earlier she had suffered a bad episode of muscle pain and paralysis, and her left arm was numb and in a sling. She was 10 pounds heavier than usual, because of the three-day steroid drip she had received. She knew, she later wrote in her journal, “that I would soon have to detach . . . going to that place where I know I will endure 135 miles of pain.” She knew she could do it. She had been doing it since “I was 11 years old when The Monster was about to attack.”
More than 10 hours and some 42 miles later, after having vomited much of the night (while moving; it’s a skill ultrarunners develop), she arrived at Stovepipe Wells with Shelton and Gardner. Kastor joined at mile 56. The women took turns running with Shannon, talking about children and marriage and love. Shannon still wore her sling. In it, she had a water bottle.
At mile 72, the third checkpoint, Shelton and Gardner had made peace with the fact that they wouldn’t be climbing Telescope Peak. They, and Kastor, had learned not to be shocked at Shannon’s absurd ability to endure. Still, they knew the limits of flesh. Shannon asked someone to pinch each of her toes, then stick a needle through bloodstained tape and squeeze out all the liquid. Shelton and Gardner retired to the van to doze. Kastor had headed out hours earlier.
Resting at the checkpoint, Shannon sat in a chair munching a veggie burger and fries, thinking. Running had cost her, she knew. The sprains and blisters, dehydration, and vomiting had been the least of it. It had cost her time, and that had affected relationships. Both of her husbands (she and Griefer were divorced in 2014; she remarried shortly thereafter and was divorced from her second husband last year) asked her to cut back to spend more time at home, and when she didn’t, they weren’t happy. She knew running had taken her away from her sons at times, even though she always scheduled it around soccer and Little League games, and it had been hard, especially for Ben, who is now estranged from Shannon. Moe, an avid surfer, says he accepts his mother’s obsession; Jet has only known her during the time when she hasn’t trained as often. She worries about them—especially Ben.
She also thought of all that running had given her. Keeping her fit, generating endorphins, those were far from the most important things. It had brought her friends. It had brought her community. Running had allowed her to block out the trauma of her past, a trauma that had given her the means to
run through enormous pain. Running had given her a sense of worth, a sense of self. Before running, she’d been a daughter and wild child, then a wife and mother. Running was all hers. It was who she was. If she couldn’t run . . . she couldn’t even think of it.
Shannon knew that few people expected her to finish this Badwater. She knew how easy it would be to stay where she was, then drive home with her friends. She knew no one would fault her.
She got up from the chair.
I’m not the sick runner with MS, she thought. I’m Shannon the ultrarunner!
She climbed 18 miles, to Darwin, past huge faces of Hillary Clinton and E.T. (the extraterrestrial) bulging from the hillside. Sleep-deprivation had induced hallucinations. She watched a runner fall down, convulsing, while his wife shouted, “Open your eyes, open your eyes!” That wasn’t a hallucination.
By mile 120, Shannon was weaving, and Gardner was pulling her off the road away from traffic, to the shoulder, where Shannon face-planted. Gardner woke her, scolded her, pulled her up.
At mile 121 Shannon turned onto Highway 395, a mile from the next checkpoint. She thought of her boys. Maybe this Badwater was less magnificent obsession, more self-destructive and selfish stunt. Profile in courage or idiotic delusion? Sometimes she wondered.
That’s when she heard honking, and someone screaming. “This is your carrot, baby! You’re going to make it!” It was Kastor, crying, dangling a bottle of champagne out a car window. She’d been following Shannon’s progress by computer since she had left. When Kastor saw that Shannon had made it to mile 90, she drove back. “You’re going to make it!” Kastor shouted again.
Shannon made it to the Lone Pine checkpoint by running a 10-minute mile on 122-mile legs. Sick, in her final Badwater, defiant, she crossed the finish line right after a cleansing rainstorm, slightly more than four and a half hours after she’d left Lone Pine. It was the fastest she had ever covered that leg of the race.
On a sunny fall day in 2015, Shannon listened to only a few words before she stabbed the “decline” button on the telephone panel in her gleaming silver Audi SUV. It was CVS on the line, telling Shannon that her medicine was ready to be delivered. She had been hitting the decline button, off and on, for the past decade.
The story of her life, the way Shannon saw it, driving to her therapist’s office in Encino, is one of fast times and forward motion, a rollicking saga of close calls and outrageous adventures. She’s raised almost half a million dollars for charity. She started a successful business. Her photo has been in dozens of magazines. She’s active on the event committee of the Race to Erase MS organization. She’s done jumping jacks on national television.
She has suffered a few flare-ups of MS since finishing her sixth Badwater, which she decided wouldn’t be her last one after all. She has been rushed to the ER a few more times. When she’s feeling well, she doesn’t stop talking or running, cooking, writing, driving, laughing—anything other than sitting still. During flare-ups, though, she is so weak she can’t walk, so fatigued she can barely get out of bed.
A few days before her therapy appointment, she had seen a pulmonologist at Cedars-Sinai Medical Group in Beverly Hills who had diagnosed her with respiratory muscle weakness. When she told him she was planning to stop taking her medication altogether, he had said, “You are your own worst enemy. Athletes think they can outrun disease, but they can’t. Even psychiatrists get depression, and when they do, they need treatment. You need to take your medicine.”
Her current internist, Robert Goodman, MD, in Tarzana, is less sure. “She’s got MS, but it’s relatively quiescent,” he says. “Her heart is strong, her blood pressure is okay.” He’s not crazy about Shannon running ultras, but doesn’t see any real reason for her to stop. As for Copaxone, he adds: “I’m not that impressed with it—there’s not much in the way of medication that really works for MS.”
Shannon pulled into the parking garage at her therapist’s office, clambered swiftly out of her SUV. She was cracking jokes, moving fast. Tonight she’d cook dinner for her mother and Moe and Jet. Her hazel eyes were flashing. She’d run five miles earlier. She’s been talking nonstop for much of the previous three days. She’d been reviewing the same story with her therapist, Candice Slobin, for two years. Now she was in Slobin’s office.
“You have said out loud, to me, that you’re super-independent,” Slobin said.
Shannon nodded.
“You’ve said, ‘I’m not going to be dependent on other people or on medicine.’”
Shannon nodded again. In the past year, there had been a handful of times when she hadn’t been able to get out of bed for days at a time. But when she could make it to her feet, she ran in the mountains. She tries to run five to 10 miles, five days a week. When she couldn’t run, she walked. If she fell, she made sure to take a cane the next time, and she limped a shorter route. “But you are, right?” Slobin said. “You are dependent on others now?”
Shannon made a small noise. Running had given her agency, it had given her strength. And there was no proof that the Copaxone would slow her disease, was there? And hadn’t she shown everyone what could be accomplished by just putting one foot in front of the other, over and over again? She was the one who helped others, not the other way around. Shannon would continue to run, she told her therapist, with medicine or without.
“Can I say something?” Slobin asked.
Shannon nodded.
“You are brilliantly capable of manipulating yourself out of acknowledgment of pain. What allows you to run are the psychological tools you developed as a child.”
Shannon said nothing.
“Your gift has saved you,” Slobin said. “But it has crippled your ability to deal with your disease.”
She suggested that Shannon continue to attend running events, and if the medicine made it too difficult to participate, that she volunteer. She could be part of the running world without running.
“But people there have always seen me as a runner,” Shannon said.
Now it was Slobin’s turn to say nothing.
“Now they see me as a sick runner,” said Shannon. “I don’t want to be Shannon, the sick runner.”
“But you are sick.”
That’s when Shannon cried. She would eventually find another therapist.
In the year or so since, Shannon moved to a different house in Hidden Hills, and has been working on a cookbook, a lifestyle book, and a memoir. She has continued to log 30 miles a week running (or walking or limping) in the nearby mountains. She has finished a 30K race, two 50Ks, and a 50-miler. When she finished the Javelina Jundred last October, “it felt like redemption.” She started strength-training and receives regular massage and chiropractic care. She researched the connection between diet and inflammation, experimented with different spices. She only takes Copaxone when she has flare-ups, “which seem like they’re shorter and farther apart.” She says her doctors scold her, so she stopped making as many appointments. “They said I’m in denial, and yeah, I’m in total denial when I feel well. But the treatment made me feel like I was succumbing. I know I need to be on consistent treatment soon, but I feel the tools I developed through ultrarunning—the ability to ride out the storm through fatigue and pain—have helped me take on this disease in a different way, until I find an alternative treatment. I know the flare-ups will pass, just like mile 80 in a 100-miler.”
Shannon is planning to run Badwater again this year. There will be a couple more after that, too. She wants to be a 10-time finisher. If she didn’t have a goal, who would she be? She thinks about that a lot. When she takes her medicine, who will she be? She might be sick. And if she is sick, she might not be able to run.
If she can’t run, who will she be?
Jane Bernstein
Still Running
from The Sun
I start to run in 1973 on a track above the basketball court at the McBurney YMCA in New York City. Twenty laps to a mile. T-shirt, cutoff jeans, denim sneakers
with orange laces—flat and heavy, like low-cut basketball shoes.
The Y sells a lap counter, a metal gizmo that fits into my palm: one click for each time around. Using it means I no longer have to count the laps, and my mind can wander while my legs do the work. I can be both of my body and apart from it, present and far away.
Before I stepped onto this track, I thought of myself as unathletic. Hadn’t ever played sports. There were no teams for girls in my big suburban high school, only gym class, with its daunting pommel horses I could not mount and ropes I was afraid to climb. Never the absolute last to be chosen but one of the stragglers, a restless, fumble-fingered klutz in an ugly blue gym suit.
Now it’s as if a switch has been flicked, and the whirring restlessness inside me has turned into purpose. I can run!
I buy real running shoes—white Adidas with three green stripes—and run in the street. Never again will I run indoors.
A woman runner is a rare sight. Men call out when I jog by: “Where’s the fire?”
They run beside me for a few steps or trot in an exaggerated way, pumping their arms.
“Who’s chasing you?” they shout.
Marriage. In-laws in Florida: “She wants to what?”
My father-in-law watches me lace up my running shoes, then follows me out of the house, warning me about the rattlesnakes that slither in the sandy far reaches of their development. He stands on the doorstep when I leave, shaking his head and chuckling, and when I return, he’s still at the door, still shaking his head, still chuckling. “That takes the cake,” he says.
All that week he keeps shaking his head and chuckling in benign disbelief: “That really takes the cake.”
My husband’s former girlfriend Ginger asks if she can join me on a morning run in New York City. Too shy to say no, I agree to meet her on Bleecker Street, midway between our Greenwich Village apartments. We head southwest, toward Canal Street, run up the ramp onto the remaining stretch of the elevated West Side Highway (closed to traffic), exit at the Battery, and continue home.