At 9:41 a.m., on July 27, 2001, Shannon Farar-Griefer jogged through a knot of cheering people in a pine forest clearing at the base of California’s Mt. Whitney. She had been running—and limping, puking, cramping, and crying—for 135 miles. After almost 52 hours, her feet were covered with oozing blisters. Five toenails were black.
Like most runners who tackle ultramarathons (any race longer than 26.2 miles), Shannon had endured without complaint, though she didn’t like the bats swarming above her at night. But she had a knack for suffering, even by the standards of ultrarunners, for whom stoicism, if not masochism, is a way of life.
Now it was Slobins turn to say nothing Badwater 135 ultramarathon competitors had started at Death Valley—at 280 feet below sea level, the lowest point in North America—and the 55 finishers (Shannon was 38th) had ended the race here, among the pines, at 8,300 feet. But Shannon wanted to keep going. Before race organizers, park officials, and, one imagines, commonsense concerns about death and liability conspired to shorten the course in 1990, Badwater had finished at the summit of Mt. Whitney, the highest point in the contiguous United States. Some runners groused about overcautious race directors; Shannon, though, had her own idea. Now that she had finished the current course, she wanted to finish the former one. She intended to climb Mt. Whitney, some 11 miles farther and 6,100 feet higher than where she stood.
Her plan would have been alarming under ordinary circumstances. With the threat of storms on the mountain, a ranger told her, it was out of the question. So she caught a ride to a friend’s house in nearby Lone Pine to rest. Which to her meant popping blisters, gobbling veggie pizza, and checking weather reports. But not sleeping. It might be too hard to get back up.
At midnight she returned to what sensible ultrarunners call a finish line. And at 2 a.m., she started ascending the mountain. Roughly 24 hours later, she returned to the base. Waiting for her were her husband, Alan, and her boys, 11-year-old Moe and 8-year-old Ben. Ben was crying. He wanted to go home. He wanted everyone to go home.
She held him, stroked his head. She pictured the drive back home, lying down in the back seat with Ben, legs elevated, her battered feet hanging out the window. Instead, she slept a few hours at a hotel with Ben in her arms, her first real sleep in three days. Then she told her husband to get the boys in the car. She’d meet them later. She needed to do something. Ben was wailing: Why couldn’t she stop?
It would take years before she knew the answer. “In order to not feel pain,” she wrote in a journal in 2015, a time when she began to make the sticky connection between what had happened to her as a child and her adult behavior. “I needed to find a place, a familiar place. A place I had to go…”
She watched her family drive away, then yanked three blackened toenails off her right foot, two off her left. She wanted to “double” the route—the entire original route—which meant that she had 135 more miles to go. She ran back toward Death Valley, back to where she had started.
Now 55, Shannon was born four months after her mother, Jackie, left Shannon’s father. Jackie was 19, already the mother of an 11-month-old boy. She worked as a teller at a bank in Palm Springs and, for extra money, as a dancer for a television show with a handsome producer. His name was Yale Farar, and he and Jackie started dating when Shannon was 3. When they married a few years later, Farar adopted Shannon. The couple then moved to the San Fernando Valley and had two more children, a girl and a boy.
When Shannon was 11 years old, the family took in an acquaintance. He was old and frail and told funny stories and asked Shannon about her schoolwork.
He stayed in the bedroom next to Shannon’s. One afternoon when Shannon came home from fifth grade, he called to her to come into his room. He wanted to tell her a story. Shannon’s mother had taken her little sister somewhere; her brother was playing outside.
The old man was in bed, on top of his bedspread, which was a dull, faded gold. She remembers that. And she remembers his thin plaid pajamas. She stood in the doorway, as he told the story, but he motioned her closer. Before long she was lying next to him, and his voice had lowered to a husky murmur and the story was making no sense. He put his hand on her stomach as he talked. She looked out the only window in the room. It was small and square, and if she had been standing she could have seen into the neighbor’s yard, and maybe she would have seen her little brother playing outside, but all she could see was sky. She stared at it. As he was touching her, he touched himself, too, faster until he grunted and became very quiet. Shannon kept staring at the sky. He told her to get up, and then he told her he loved her and that now they had a little secret and she couldn’t tell anyone. No one would believe her, and someone might get hurt. As she was leaving, the old man reached into his bedside drawer, pulled out his wallet, and handed her a five dollar bill.
It continued for months, until he left. She learned to focus on the sky, to take herself somewhere else. She wondered what she had done that caused him to do these things to her. She told no one.
Eventually the family moved to Northridge. Shannon’s body started changing at 13. For a time she dressed like a boy to hide it, and avoided men. But by the time she was 16, she was frequenting television studio sets, where she was discovered by hard-core Hollywood partiers. Soon she was hanging out with producers and rock-and-roll stars, accepting invitations on private jets and yachts. She surfed at Malibu, drank too much, stopped eating, binged and purged. She worked as a salesperson at a Jack LaLanne Health Spa and took small acting roles on CHiPs, Hunter, and Hill Street Blues. She was 5′2″, weighed 90 pounds, drove a white convertible MG MGB, and smoked Marlboro Reds. Most nights started at clubs and ended at the house of a friend whose parents had a full bar. If her friend wasn’t around, Shannon drank NyQuil.
She dropped out of school in 11th grade. At 17, her parents kicked her out, though Farar rented her an apartment around the corner, hoping it might help her settle down. Instead she found a boyfriend, a real-estate mogul who drove a dark blue Mercedes-Benz 450. She smoked pot on a yacht with a movie star in his 50s. She watched a rock-and-roll idol inject himself with heroin.
She didn’t tell her parents about the old man, she didn’t tell the real-estate mogul. She didn’t tell the therapist she saw. She tried not to think about it.
Then she got a job selling a Velcrolike fabric, mostly to surf companies who used it for leashes, and soon she had landed some of their biggest accounts. Her boss called a friend and said that he had to come by and get a load of his new firecracker sales gal.
When Shannon met Alan Griefer, she thought, This is the man I will marry. This is the man who’ll give me children.
This is the man who will save me.
A good wife looked pretty. She dressed nice. A good wife was a doting mother. A good wife did not spend her nights dancing with real-estate moguls then knocking herself out with NyQuil.
Shannon took a professional cooking course at UCLA—a good wife cooked delicious and nutritious meals—and on the first day of class, the other students, all men, introduced themselves. “I’m Buck, and I’ve been studying in Tuscany,” said one. “I’m Alfredo, and I’ve been working under a Michelin three-star chef in France,” said another.
Shoes & Gear.
“I’m Shannon,” she said, “and I’m getting married!” She returned from her honeymoon pregnant, and then three years after Moe, Ben was born.
Griefer worked in real estate, then started a credit card processing company. Times were good. He and Shannon each had American Express Black Cards. Together, they owned eight cars, including a Porsche 911 Carrera and a Ferrari. The family lived in a four-bedroom house on an acre of land in a gated hamlet called Hidden Hills, near Calabasas. They had a swimming pool with waterfalls, a fitness center, a barn, a screening room, and a guest cottage, where the housekeeper and the man who took care of Shannon’s four horses lived. A lot of residents had horses. Many had screening rooms and wine cellars. Will Smith was a neighbor. So was Alex Van Halen and his family. And Howie Mandel. It was usually the wives who picked up the children at the elementary school just outside the gates. Shannon saw how young they seemed, how slim, how put-together.
Shannon was friendly, but she didn’t speak much about her previous life—even with Griefer. She sometimes cut her time at the Mommy and Me group short, but not because everyone seemed to be dressed for the Academy Awards. She sometimes walked away because the women told each other secrets and talked about their pasts. She couldn’t risk anyone discovering hers.
She started running when the boys were toddlers, to lose weight. She made it a mile, and a mile turned to three, then to six. She entered and finished a few 5Ks. She ran 15 miles sometimes. She entered more 5Ks and 10Ks and then half marathons. She replaced her collection of crystal perfume bottles with race bibs and ribbons and medals. When she was 33, in March 1995, she finished the Los Angeles Marathon. It was her first 26.2-mile race.
Before she crossed the finish line, she would write in her journal, “I was a child of shame and pain, a high school dropout.” After, though, “I felt free. I just found a new sense of ‘me.’ My life had changed that day; the once insecure, frightened girl is now a mom with two beautiful sons, a loyal husband… a freaking marathoner.”
The next year, she became an ultramarathoner, finishing the Bulldog 50K in Calabasas. She finished it in 1997 and 1998, too. That year, she ran one 50-miler and four 50Ks. She ran another 50K and three 50-milers the next year, along with her first 100-miler. She discovered that when other marathoners started hurting at about mile 20, she started feeling better. What stopped other runners—blisters, twisted ankles, nausea—was no big deal to her. When she was sexually assaulted as a child, she had dissociated, taken her mind outside the window of the old man’s room, into the sky. She used the same technique to manage the exhaustion and pain of her newfound obsession. That ability to dissociate allowed her to run distances most people would never imagine walking.
And it almost killed her. On September 25, 2004, Shannon entered her sixth 100-miler, the Angeles Crest 100 Mile Endurance Run in Wrightwood, California. She vomited at mile 10. She tried to stay nourished by gobbling peanut butter, pretzels, and chocolate, and she drank water. Lots of water. By mile 20 she had stopped urinating and, though she didn’t know it, was gaining weight. She was suffering from acute hyponatremia, or the rapid fall of sodium levels in the blood due to drinking too much water. Her kidneys were shutting down.
She passed out at mile 46. A runner roused her and ran with her the next two miles to a checkpoint/medical tent. After taking her vitals, the medical aide left to call for help. Shannon jumped up and ran into the darkness, back to the race. Nothing some water and snacks couldn’t solve. She passed out again after less than a mile.
Emblems of an obsession.
A doctor at the Providence Tarzana Medical Center ER told her if she had spent 10 minutes more on the ground, she’d have gone into cardiac arrest. She was confused. “What’s wrong?” she asked. “Didn’t I run a good race?” She thought she was still at the race. “Where are the other finishers?”
Griefer and the doctor exchanged glances and walked away. While they were gone, Shannon considered what she’d do different next time. Start slower. Pace herself. Fuel more efficiently.
Her husband returned without the doctor, flanked by two serious-looking children. She didn’t want to embarrass them, so she motioned her husband closer, where she whispered to him.
“Who are they?” she asked.
“Those are our sons,” he said.
Two weeks later, a nurse from Ben’s school called. The boy was complaining of stomachaches nearly every day. Shannon took him to a doctor, who suggested a therapist. Ben told the therapist that every day when his mother went for a run, he thought she might die. So for the next three months, instead of running her usual five or 10 or 15 miles in the mountains after she took the boys to school, she ran in the Bay Laurel Elementary School parking lot, for hours at a time, past Porsches and Bentleys, past pure-bred poodles with $200 haircuts. Sometimes she would look up and see Ben staring at her out his classroom window.
When she returned to the mountains, she approached training like she had approached cooking class and marriage and selling fabric and partying. All in. That approach, and her remarkable endurance, buzzing energy, and striking good looks, brought her notice. SlimFast put her in commercials. Newspapers ran stories, magazines featured her in photo spreads. She was a regular on ESPN’s Cory Everson’s Gotta Sweat, which was pretty much what it sounds like. When she was put on bed rest while pregnant, she started a business, Moeben (named after her two sons), producing multi-hued arm sleeves for runners.
One of her neighbors, Stine Van Halen, asked Shannon to help her train for a marathon. Another neighbor asked the same thing. Then another, and another. More than a few had grown children, very wealthy spouses, and time on their hands. Soon Shannon was leading as many as 25 runners through the mountains that climbed from the border of Hidden Hills. Four days a week, anywhere from five to 15 miles. Everyone started out with a five-mile run. “Not to punish them,” Shannon explains. “I just wanted them to see that being outside for an hour and a half wasn’t going to kill them.”
A few complained. A few stopped, said after a mile or so that they couldn’t continue. Okay, Shannon said, barely slowing down, no problem. She hoped they’d all make it safely back home, out of the mountains, the wildcat-lurking, snake- and scorpion-infested mountains. That got them going again.
Shannon called the group the Calabitches, and that caught on, then they became the Hidden Hills Hos. Shannon was Head Ho, naturally. A woman who got dolled up beyond even Hidden Hills dolling-up standards was Posh Ho. The unassuming kindergarten teacher was Sweet Ho, even after she showed up one day with a new set of breasts. A woman who had been married to a well-known personality was Rock Star Ho. Another, always lagging behind the pack, was Back Ho.
Shannon told would-be runners they could join, and she would run a marathon with them, as long as they found a charity to run for, as long as they found sponsors and raised money. It seemed everyone who ran with the Hos even a single time finished a marathon.
Shannon was in her mid-20s before she told her mother about the molestation. Her mother cried, saying, “I wish I could take your pain.” Shannon didn’t tell Griefer. Certainly not the Hos, as much as she liked them. They wouldn’t understand. How could they, with their wealth and grace and perfect lives? She didn’t need to tell anyone, though. Not as long as she kept running.
The Coach Who Found a Better Way to Win, Shannon felt an unusual burning sensation in her legs during the Javelina Jundred 100-miler in Arizona, causing her to drop out of the race. A few weeks later, she awoke just past midnight curled in a fetal position. Her legs felt like they were on fire. She didn’t have sunburn, or any broken bones. She went to her computer. She found symptoms “that freaked me out, things I’ve never heard of and didn’t want to know about.”
She saw a doctor, who sent her to a neurologist. The neurologist sent her for a brain scan, and two days later she was back in his office for the results.
She and her mother, Jackie, sat while the doctor pointed at Shannon’s MRI. Did they see those white spots? They didn’t, not really. He told them they were lesions characteristic of multiple sclerosis, a rare and chronic disease in which one’s immune system breaks down the protective covering of nerve fibers of the brain and spinal cord, replacing it with plaque, or “sclerotic” tissue. That in turn interferes with the transmission of nerve impulses, and it was almost certainly responsible for the burning pain in Shannon’s legs.
That was December 2005. The first Saturday of 2006 she got out of bed and ran 20 miles. The next day she took the Hos for a 16-mile training run for the upcoming Los Angeles Marathon. If she had MS, how could she do that?
The next week, she was too weak to get out of bed. There was burning all along her right side. She felt like an elephant was sitting on her right arm.
Another neurologist, more tests. More brain lesions. It was early spring now and he would do a final round of testing in August, to be absolutely positive, but he was confident she had an aggressive form of MS and recommended starting treatment immediately. Some people with MS are relatively symptom-free most of their lives, while others suffer severe and/or chronic symptoms. Shannon would turn out to have the most common form of the disease, Relapsing-Remitting MS (RRMS), which is marked by attacks that include fatigue, numbness, muscle spasms, vision problems, loss of memory and attention, trouble breathing and swallowing, and impairment of motor function. The attacks are followed by periods of remission, when all symptoms sometimes stop. No one knows the cause of or cure for MS, or why most people with RRMS get progressively worse, or why some have more or fewer attacks than others.
The doctor wrote a prescription for Copaxone, one of a dozen or so drugs approved by the U.S. Food and Drug Administration for managing RRMS. He told Shannon she would have to inject herself daily, alternating between left quadriceps, right quadriceps, left arm, right arm, left hip, right hip, and abdomen. And she should be prepared for pain, redness and swelling at the places she injected herself, as well as flushing, shortness of breath, and possibly chest pain.
Copaxone can reduce the frequency and severity of attacks, as well as slow accumulation of brain lesions. The MS Coalition, a group of independent organizations including the Multiple Sclerosis Association of America and the Multiple Sclerosis Foundation, advises starting treatment immediately after diagnosis and continuing indefinitely, unless side effects are intolerable or “a person is unable to follow the recommended treatment regimen.”
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 2, 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, Ph.D., vice president of health care delivery and policy research at the National Multiple Sclerosis Society in Meet RW+ Members, 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, M.D., 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.”
Im not the sick runner with MS.
“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.”
“IT Band Syndrome.”
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?
