Nicole Stafford was having the race of her life. A Stanford freshman, Stafford was swimming the third leg of the 800-yard freestyle relay at the 2014 NCAA Championships. Maya DiRado, later a two-time Olympic gold medalist, had touched in second place, leaving Stafford within reach of the lead.
Stafford completed the first half of her 200 swiftly, but the final half was all guts. She scratched and clawed with every stroke and willed her way in front by 0.06 seconds. The Cardinal would finish third, but with two freshmen and a sophomore, the team was thrilled.
Her teammates celebrated, but not Stafford. She was pulled out of the water, her body locked in a tangle of paralyzing cramps and seizure-like movements. Her eyes rolled to the back of her head.
Despite wishes that she should seek medical treatment, Stafford insisted on going to the awards ceremony. Half-carried to the podium, Stafford “stood” in the back, held up by DiRado.
That night, Stafford lay in bed as her body tensed repeatedly. For 30 seconds at a time, hours on end, Stafford endured bouts of paralyzing agony.
DiRado, her roommate during the meet, wouldn’t forget it.
“I don’t think she fell asleep that night,” DiRado said. “That was one of the most inspiring things I’ve ever seen, just how much she laid on the line for the team that day.”
The most painful moments of Stafford’s day are the ones she enjoys the most. She loves to swim fast, but her body rebels. Stafford’s condition has baffled scientists, including her own mother. Her condition, functional movement disorder, only occurs in the water. There is no precedent.
No one is sure why it’s happening and how to prevent it. The best she can do is manage it.
Lia Neal, an Olympic medalist, has seen what her roommate has gone through and isn’t sure she could do the same.
“If I were in her position, I would be pretty scared to push myself to the limit,” Neal said.
“Nobody comes into a program with stuff like this, because there’s no path to a solution,” Stanford coach Greg Meehan said. “That was the most difficult part about it.”
For four years, it seems Stafford made a deal with the devil – swimming would come with a cost. But as Stafford’s collegiate career concludes with the Pac-12 Championships beginning Wednesday in Federal Way, Washington, and the NCAA Championships March 15-18 in Indianapolis, what used to be typically 90 minutes of post-race torture is only a fraction of that now, and she is swimming faster than ever.
The transition hasn’t been seamless – far from it. But Stafford still is competing, which is something of a miracle.
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Perhaps she could have seen the signs.
Growing up in Atlanta, Stafford excelled at a variety of freestyle and butterfly distances for the Dynamo Swim Club. She achieved six Olympic Trials qualifying times in 2012, won 10 Georgia state high school championships and, as a senior for Westminster Schools, broke three state championship records and won four gold medals.
The daughter of two college swimmers – father, Phil, at Georgia and mother, Mindy, at Penn State – Stafford was encouraged to consider Stanford by her club coach, former Cardinal assistant Jason Turcotte. The chance to study engineering at Stanford was the clincher, even as the swim program was going through a coaching transition.
There were odd moments. Stafford had so much trouble breathing after one race that an ambulance was called. But by the time it arrived, she was fine. It seemed an aberration.
The National Club Swimming Association Junior Nationals in March 2013, was typical of a major meet. It was four days long, and that meant a lot of relays, prelims, and finals for Stafford. She anticipated chlorine fumes and humidity at the indoor Orlando YMCA Aquatic Center and was prepared with an inhaler to aid her breathing.
But by the third day, her body began having tremors. Too tight and sore to cool down between races, Stafford went outside to calm herself. Nothing seemed to work. She closed the meet with a series of poor performances.
“You never really think that something’s wrong,” she said. “You just think, maybe when you push yourself so hard, your body pushes back a little bit.”
Stafford took a couple of days off, seemed to be fine and trained as she had before. But a couple of weeks later, the shaking returned, without the wholesale exertion that characterized her previous bout -- during a 75-yard butterfly in practice. Something was wrong.
Since then, involuntary muscle reactions, or dystonias, have been as big a part of Stafford’s swimming as goggles and split times. A dystonia is a disorder in which muscles contract uncontrollably and can worsen with stress or fatigue, leading to pain and exhaustion.
With a letter of intent already signed, Stafford’s future seemed set. Now, the unknown threatened to rip it to shreds.
“If you break your arm, doctors will tell you how long it will take to heal,” Stafford said. “In this case, no one really knew what was happening or what to do.”
Without the ability to consistently train, Stafford’s swimming was in jeopardy. Meehan said he would have honored Stafford’s scholarship regardless. But with only 14 for his program, it may have been hard to justify beyond a year if she could not compete.
Mindy Millard-Stafford, a professor of exercise physiology at Georgia Tech, used her connections as past president of the American College of Sports Medicine to seek the best medical minds she could find.
“I called people around the world about this,” Mindy said. “It was the new research focus of my career.”
She took her daughter to the Cleveland Clinic, the Mayo Clinic and the National Institute of Health. Doctors tried to replicate the reactions with stress tests on a treadmill or bike. They tried hypnotherapy in an effort to discover childhood trauma. They tried medication. There were tests on her blood, nerves, and heart.
“I felt like a pincushion, honestly,” Nicole said.
There was so much uncertainty because of what was absolutely certain – Nicole was suffering. Mindy brought a video of Nicole post-race to doctors, and they analyzed as Nicole writhed in pain on the monitor.
At the Mayo Clinic, Nicole sat with Parkinson’s patients, guilt-ridden because her tremors seemed insignificant next to those whose lives were wholly impacted. Doctors ruled out Parkinson’s, epilepsy, multiple sclerosis, brain tumors, a brain aneurysm, and seizures. Every non-diagnosis was met with relief, but also confusion. They seemed no closer to solving the problem than before.
“There was a point where my mom said, ‘Do you want to see any more doctors?’ I said, ‘no,’” Nicole recalled. “I was really sad. Their treatment option was, ‘Don’t swim anymore. It’s not going to affect your everyday life.’ Hearing that was hard every time. I’m not hearing anything positive, so I’d rather just not hear it.”
Mindy continued to seek answers, but eventually thought it best to stop, thanks partly to a conversation with a physical therapist.
“You know, Mindy,” she said. “I’m a mom too, and I would want to fix this. And as a scientist, you want to understand it. But at the end of the day, sometimes my patients get better by just letting go.”
“It seemed at some points, the more I tried to push for an answer, the harder it was on her,” Mindy recalled. “But after two years of trying to fix it, I said, ‘I need to let this go.’ That was hard to do.”
There was one plan left, of which Nicole hung her remaining hopes. If she performed well at her final meet that summer, the junior nationals, she would continue. Her collegiate career hung in the balance.
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Her dad once asked her, “How do you get on the starting blocks?” knowing the difficulties she would face.
“I don’t think about it,” Nicole replied. “I can’t think about it.”
Watching Nicole swim felt different. Instead of anticipating meets as they used to, her parents began to endure them.
“It rips my heart out to watch her race,” Phil said.
“I don’t even look at the times anymore,” Mindy said. “If she hits the wall and turns to see the scoreboard, you know things are good.”
The scariest times, Nicole said, were when her eyes froze shut and she would be completely blind. Most often, she just couldn’t move. “Helpless,” is how Nicole described it -- a feeling she hated.
New Stanford coach Meehan wasn’t aware, but at a meet at Santa Clara the summer before she was scheduled to come to Stanford, Nicole nervously approached -- it was one of their first face-to-face conversations -- and told him everything. To her relief, Meehan said he would not give up on her.
Fortified, Stafford went to the pivotal junior national meet and excelled, swimming her best times and making the U.S. junior team. Stanford was a go.
Stafford came to a high-powered program without the ability to train like a high-powered athlete, and was afraid of what her teammates might think. During preseason, Nicole came clean and addressed the team, warning that she may have to stop during practice or train at a slower pace. Were they OK with that?
“Her commitment was never in question,” DiRado said. “Nicole would go 100 percent every day if she could. She just has that competitive spirit within her, this sense of team. She would do anything for it.”
That devotion to team had long been proven. Turcotte used to say Nicole would swim faster on a relay than she would for herself. After her final state high school championships, Stafford gave her four gold medals to four freshmen teammates, saying they were the future of the program and capable of special things.
“I saw the potential in them,” Stafford said. “They just needed to realize it.”
In that same vein, the respect of the Stanford team meant the world to Stafford, and the openness of captains DiRado and Felicia Lee was followed by the the rest of the team. Stafford said she couldn’t imagine what she would have faced if it were any other way.
Though they understood Stafford and pledged support, they still were caught a bit off-guard.
“I very clearly remember her first reaction,” DiRado said. “It was really alarming. I was not prepared for just how shocking it would be.”
Scott Anderson, Stanford’s director of athletic training, viewed Stafford’s situation as a puzzle to solve, and expressed confidence it would happen.
“If you work hard, I promise you, it will get better,” he told her.
Anderson’s first task was to figure out why the dystonia was specific to swimming. He found that her body was hypermobile, her joints could easily move beyond normal range. He felt this hampered Nicole’s body control and she was placed on a sustained rehab program to build up dormant muscles and alter the brain’s muscle memory.
Because the brain controlled the central nervous system and, in turn, the musculoskeletal system, Anderson and his colleagues worked on ways to distract the brain when Stafford’s body was in crisis, in an effort to shorten the recovery.
During reactions, Nicole moved to a stationary bike and pedaled while rubbing sandpaper. Or tried solving mathematical equations, or counted backward or by certain multiples. While some of these techniques worked to some degree, they weren’t consistent.
“She was still driving a Ferrari and she didn’t know how to take her foot off the gas pedal,” Anderson said. “Every day at practice, there was some episode because she didn’t know how to change her training. She’d be totally exhausted and wouldn’t be able to continue.”
Anderson began to think her problems derived from hypoxia, the brain’s inability to gain enough oxygen. That may explain why it happened only in the pool.
They started experimenting with oxygen deprivation on land. Several times over a month, she was tested in various workouts – weights and such -- while wearing a snorkel. Finally, while on a VersaClimber and with her air intake heavily curtailed, Stafford had a spell within a minute.
“A huge discovery,” Anderson said.
It not only confirmed the hypoxia theory, but it gave Stafford a training option. By pushing her boundaries on land while being semi-deprived of oxygen, she could train herself to overcome the same effect in the pool.
Still, Stafford was growing frustrated. Her condition was not going to go away. All the medical visits, treatments, and experiments had done nothing to prevent them. If she went hard during one practice interval, she was done for the day and If she held back, she wasn’t training enough. Multiple events seemed out of the question.
“It just started to take a toll mentally,” Stafford said. “I wasn’t seeing the results.”
Nicole began to reconsider the next three years and whether it was worth it after all. Meehan gave Nicole the option of quitting, with no judgments.
“Don’t stay because you feel you have to,” he said. “Do it because you want to.”
But as Stafford wavered, Anderson gave her something more to consider: This isn’t going away, there is no cure, and it’s time you took ownership of it.
“Don’t leave with any regrets,” he said.
Nicole’s teammates always encouraged her. They kept an eye on her lane, were ready with water bottles, or just to help her out of the pool. Ultimately, Stafford did not want to give up on them. They were the ones she would swim for.
“My teammates were so supportive,” Stafford said. “They were the reason I came back. I wasn’t having fun practicing and having my body do all these weird things, but I was having fun being a part of the team and being with my teammates. Being able to represent Stanford outweighed how mentally draining swimming had become.”
By accepting her limitations, she opened up her possibilities. She was all in.
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Through trial and error, Stafford began to find her threshold in the pool, and learned how to maneuver around it. And an even bigger revelation was on the horizon.
Rapid Thermal Exchange cooling gloves were used by the football team to drive down body temperature, but Anderson believed it could be an effective anti-cramping device. As Nicole struggled after a hard swim, he placed her hand in the glove and the reaction on that side immediately stopped. He tried the other hand and the same thing happened, though her first arm returned to having tremors.
This is it, Anderson thought. Cold is the ultimate distractor to the brain.
The rest of Stafford’s sophomore year, every time she raced, Anderson dragged a kiddie pool onto the pool deck and filled it with ice. By dropping into the cold from the neck down, Nicole stopped her reactions. She had cleared a huge hurdle. The problem was: She hated it. The immersion left her too cold to warm up properly for another event.
Anderson knew they were close. But how to apply the cold more specifically without deep-freezing her entire body? Ice cups.
Now, trainers rub her palms, neck and the joints of her arms and legs. Instantly, Stafford feels her body release, like a weight falling away. Finally, control.
The transformation has been dramatic. Now, Stafford can swim in multiple events and train almost at will. She recovers in seconds, not hours.
Last year, Stafford qualified for the NCAA Championships in an individual event – the 200 free -- for the first time. This year, she has achieved NCAA ‘B’ standards in the 200 free and, shockingly, the 500 free. The last time she tried that event, as a freshman, she locked up in the middle of the race.
Stafford has set personal records in every event and, at Stanford’s final home meet this season, a Senior Day victory over USC, Stafford swam the 500 free without any reaction at all.
“Unbelievable,” Anderson said.
Meehan has been pushing her to take a new approach, to be more aggressive during the front part of workouts, “to see where the line is,” he said. “She’s not just surviving, she’s thriving at this point.”
She still has a reaction or two during a typical week, but she’s gone longer in workouts and the difficulty has increased.
“I finally feel like I can push my limits instead of being limited by my reactions,” she said.
Was there ever a point when Meehan wondered if Stafford was going to make it?
“Every day for the first three years,” he said. “That’s the reality. At any point, she could have said, ‘I’m done,’ and nobody would have questioned her. People thought she was crazy that she continued to do it and thought we were crazy for allowing her to.”
Anderson has taken a different approach this year. Essentially, she’s on her own.
“She came out the other side a completely different human being,” Anderson said. “We’ve gotten it to the point where this condition is almost inconsequential to her performance and to her life, and that’s the most important lesson from this experience and the thing I’ll remember for the rest of my career.
“If she didn’t get the most of her potential, I really feel I would have let her down. I don’t cheer a lot on the sidelines in any sport that I work, but you’ll see me cheering for her.”
Stafford can smile, and even laugh about some of the things that have happened, like the time her hand locked around a teammate’s during a handshake. Or the time her body froze as she was hanging up her bag. Two years ago, she would not have been ready to tell her story.
“I don’t think I would have traded this path,” Stafford said. “Yeah, I might have some regrets: Where would I have been if all this didn’t happen? But I feel really lucky.”
Throughout this adventure, teammates always considered her a valuable to the team, even if Stafford didn’t always feel that way. Before the season, Meehan and assistant Tracy Slusser named her a co-captain, reflecting that respect. The girl who just wanted to fit in achieved much more than that.
“She’s just this model of tenacity, perseverance and selflessness,” DiRado said. “She went through this just to contribute to the team. She certainly didn’t have to do that, but it made us all better."
“It’s my favorite story in sports. It really represents what athletics are all about.”
Come March at the NCAA Championships, Stafford will leave swimming on her terms. No need to prop her up on the podium this time. She will stand tall.
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