Olympics
Mariana Lajolo, Special to ESPN 6y

The pursuit of happiness for Olympian Lais Souza

Olympic Sports

LAIS SOUZA WAITED in line with her friends and gazed up at the highest peak of the Expedition Everest roller coaster at Walt Disney World. She could hear riders yelling and screaming as they were hurled backward down the peak of the "snow-capped" mountain, which reached nearly 200 feet.

Suddenly doubt -- and fear -- overcame Souza. Will I be able to sit in the car? How will I hold on? Will I feel dizzy? This was new territory for the 29-year-old Brazilian: She was never afraid of new challenges. Fearlessness was one of the qualities that helped her excel as an Olympic gymnast -- and then as an aerial skier. She had been on countless roller coasters, but this time was different. Souza's friends rallied around her: They would go on the ride only if they were all together.

"It was amazing," she says now after that September trip. "I thought I wouldn't be able to go on any ride anymore, but then I found out I just needed somebody to carry me."


AHEAD OF THE 2014 Winter Olympics, Brazil was building an aerial skiing program -- and Souza was central to the plan. She had never skied, but her gymnastics experience would make up for that. As an artistic gymnast, she was one of the best of her generation. She qualified for the Olympic team twice -- Athens 2004 and Beijing 2008 -- and earned one silver and three bronzes at the Pan American Games in her career. Just before London 2012, she fractured her hand, and by then, Souza knew her farewell to the sport was fast approaching. At 25, her body was tired: It had gone through 17 surgeries over the years.

Then came the invitation to try aerial skiing. She couldn't resist. Soon she moved to Park City, Utah, from Ribeirão Preto, Brazil, to start training. She would learn how to ski down a curved ramp at up to 40 mph and propel herself into the air, performing flips and twists before landing on the snow. Souza exceled and, within months, qualified for the 2014 Sochi Games. She would be the first Brazilian to compete in aerial skiing at the Winter Games.

But everything changed on Jan. 27, 2014, a week before she was to leave for Sochi. Souza -- then 25 years old -- her Canadian coach, Ryan Snow, and her training partner, Josi Santos, were taking one final run down the hill on a relaxing, non-training day at Park City Mountain Resort. The slope, intended for advanced skiers, was too fast and full of moguls. Souza lost control and hit a tree, fracturing her neck. She had no feeling below her chest and no voluntary movement in her arms and legs.

For almost a year after the accident, Souza's focus was survival. She had dark moments, telling her mother she wanted to die. Doctors said she would never breathe again on her own. But with the same resilience she showed as a gymnast, she proved the doctors wrong. Except in one area: She still couldn't walk.

When Souza moved back to Brazil, she was obsessed with the idea of walking again. She tattooed on her right arm a man standing up from a wheelchair and walking, and she left a pair of flip-flops next to her bed every night hoping to wake up one morning and put them on. But nothing changed -- and soon she learned, she would have to be the one who changed.


DUDU KIYA ARRIVES wearing a belt full of scissors, razors, combs and brushes. He kisses Souza's forehead, touches her long, black hair and asks how many inches she wants to cut. She grimaces.

In that hair salon in Ribeirão Preto in early December, Souza had just finished telling a story about the flight that took her from Park City to Miami a week after the accident. At that time, the prognosis wasn't hopeful. Her spinal cord had been crushed, and there was edema and other swelling.

During the flight's landing, Souza couldn't breathe -- even with assistance. A clot prevented air flow to the lungs, and it took the doctors a lot of time to correct it.

"I was turning purple," she says. "I really thought I wasn't going to survive. It was funny; I gave them a hard time."

Souza usually defers to jokes when talking about difficult situations. The ability to laugh at her problems is one of her coping mechanisms, one of her tricks to making life easier. And she does this when talking about one of the most uncomfortable situations she has to endure: letting other people change her diaper and give her a bath. "My lady parts are public," she said, laughing.

"I think this is the best way to look at things: using your sense of humor," she says. "Just looking at the bad side of everything won't help you at all."

Souza can also be sarcastic. Another story she told, she said was much more "traumatic" than almost dying on the airplane. "I needed an operation to fix my neck," she says. "Before the operation, they cut my hair really short -- and that made me cry."

She tells this story just as Kiya starts to cut her hair. "Only two inches," she tells him.


SOUZA SAYS SHE has always been very vain. During her time as a competitive athlete, she always had her hair and makeup done, even for training. Her belt always matched her bag. Now her clothes don't fit as well as they used to, as her body has changed, and her caregivers do their best to apply her mascara and lipstick. She has had to put her life into someone else's hands.

"I have to live within a new limit of vanity. It's hard for other people to do things the way I like it," she says.

The former gymnast is also a perfectionist. In the gym, she was worked tirelessly to get every move in her routine just right. It was the same at home. Souza had been living by herself since she was a teenager, so she was used to doing everything her way. Now she tries to be happy with how other people do things for her. When she arrived from the U.S. to live with her mother almost a year after the accident, even the smallest things bothered her. Like the way, for example, her mother, Odete, washed her clothes. After lots of coaching, Odete started doing it the way Souza liked.

"I was very stubborn. I wanted things my way. Always. One of the few things that make me seriously mad is when people didn't do things right," she says. Souza has been learning how to let other people take care of her -- even when it isn't done her way.

At first, Odete took care of her daughter full time. But soon Souza realized she needed the help of others to get something she craved more and more: freedom.

The only moments she had to herself came while using a touchscreen pen to text her friends. But that was no longer enough.

Souza was very grateful to her mother, but she wanted more. She wanted to go out with her friends, to go out on dates and to party -- without her mother by her side. She was eager to overcome new barriers, to try to live a more fulfilling life.

"I wanted to go out at night and hang out with my friends," she says. "I love my mom, but I don't want to do this kind of thing with her."

So three years ago, Souza hired her first caregiver, Willian Campi. She wanted to hire a man who was young, had a personality similar to hers and was also strong enough to carry her.

Campi worked during the day, and two others, Wendel de Souza and Kaique Teodoro, took turns at night, every other day. The three of them became her passport to a new life. They were more than her caregivers; they were also her friends. Souza could now do what she loved: go to restaurants, bars and parties, and spend the night talking to her friends and listening to music.

"I treat her like everybody else," says Campi, who stopped working with Souza shortly after the trip to Disney World. "I've got her used to doing things quadriplegics usually don't."


SOUZA PEEKS INTO the crowd without being seen. It's late November and she's in Sao Paulo to talk in front of more than 2,000 women -- and the conference is running four hours behind.

"I'm nervous," she says to Teodoro.

Souza heads to the stage, and with Teodoro holding the microphone, she starts to tell her story.

"When I was an athlete, I was in search of medals," she says. "Today, I search for what's important. Life gave me lemons and I chose to make lemonade."

The women stand up to applaud. Teodoro pushes the wheelchair backstage. They still have a three-hour drive back to Ribeirão Preto, and it was already 6 p.m. Souza had arrived at 11 that morning. She felt sick and weak in the dressing room after her speech but was more worried about something else: "Do you think [the speech] went too fast?" she asked. "Those women, they should be so tired. I didn't want to talk much because I was worried about them."

Souza was trying to make ends meet when she started giving speeches. Her life is very expensive. Things like her wheelchair and the minivan were bought through donation campaigns and friends like Brazilian soccer player Neymar and equestrian athlete Alvaro Affonso de Miranda. But just for basic expenses like employees, medication and gas, she needs around $6,000 a month.

"There is no other option, she has to work," Odete says.

But what had begun as a necessity became an important tool to help Souza find purpose.

Her story has impacted others -- and she feels stronger for telling it. The interaction gives her more hope and happiness. She gets thousands of messages through social media about how she is changing lives. "A woman wrote on Instagram that she was deeply depressed and wanted to kill herself. But my story saved her life. My pain is helping people," she says.


SOUZA IS TAKING that purpose one step further. Last year she started studying psychology at Estácio de Sá in her hometown, Ribeirão Preto. A trainee takes notes for her, and when it comes to taking tests, she has to dictate the answers away from other students. She also started dating someone and moved to Vitória, a city almost 200 miles from where she grew up, to live closer to her. The thoughts about dying are not there anymore. Shortly after the accident, she said she researched euthanasia. "I wasn't going to do anything, I just wanted to know what kind of options I had," she says. "Today I have more respect for people who choose to accept death because only you know exactly how you are feeling and how much you can endure."

Now she rarely looks sad. The question of "why" that tormented her in the past, is not there anymore. "I realized I was wasting my time trying to understand something that has no explanation," she says. "I was just suffering. I was always asking why there is not only one little finger left [with feeling]. But that was not helping me."

One person who inspired Souza to be more confident, independent and positive was Mara Gabrilli, a 50-year-old Brazilian congresswoman, who is also quadriplegic.

Gabrilli says she believes her friend is living the best chapter of her new life. "In the past, sometimes she had sad eyes, but they are not there anymore. She has become more independent and has started studying. This is very important to give her confidence. For people like me and her, who were very independent before, it is hard to have to ask for help all the time and not be able to do some things," Gabrilli says. "Our last conversation was about sex. When you are talking about sex and not about problems, it is because things are good."

Souza still dreams of regaining movement and has found hope in stem cell therapy at The Miami Project to Cure Paralysis. She had to receive permission from the Food and Drug Administration to participate in a new type of treatment, in which stem cells are injected into the spinal fluid at the site of the injury. She has received three injections.

The treatment gave her back a small amount of feeling in her arms, feet and sacral region near the bottom of her spine after the original injury blocked almost all of the neurological connections between her brain and her body below the third and fourth cervical vertebrae. Now, post-treatment, new neurological connections have been established below those third and fourth cervical vertebrae, which could be an indicator that her body might be reconnecting with her brain.

But there isn't a miracle yet.

"We can't say with certainty she will walk again," says Antonio Marttos, surgeon at Jackson Memorial Hospital and Ryder Trauma Center in Miami who is also a doctor with the Brazilian Olympic Committee. "But she is a candidate to benefit from new treatments in the next five, 10 years."

Walking is still her biggest dream, but it doesn't dictate Souza's life anymore. The flip-flops no longer sit next to the bed every night. "My goal is to be happy," she says. "I have tried everything and couldn't [walk]. So the only weapon I have is to be patient and let things happen. I will not reverse my injury today or tomorrow. And if it is a matter of time, I have to make things easier and lighter. I don't want to be unhappy."

Mariana Lajolo is a Brazilian sports journalist with more than 20 years of experience. She has covered three Olympic Games.

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