Updated: Jan 31, 2020
A Family Works to Build Resilience and Community
Story by Maria Buteux Reade Photography Courtesy Carrie Marie Burr
On December 31, 2009, Kevin Pearce was training in Park City, Utah as a snowboarder bound for the 2010 Olympics. During one of his half-pipe runs, he caught an edge and suffered a tragic, career-ending crash. His older brother Adam put everything on hold to become Kevin’s primary caregiver as Kevin faced the daunting battle of recovery from a traumatic brain injury. Thanks to Kevin’s resilience and enormous support from his family and friends during the last 10 years, he has regained his life—not as a world-class snowboarder, but as the public face for traumatic brain injury (TBI) awareness and the importance of loving your brain.
Every year, 2.8 million people suffer a TBI ranging from a mild concussion to severe trauma. By 2020, the World Health Organization anticipates that TBI will become the third leading cause of death and disability in the world.
The Crash Reel, a brilliant HBO documentary from 2013, chronicles Kevin Pearce’s ascendancy to the pinnacle of extreme snowboarding. It also provides an unflinching portrayal of his torturous
struggle to recover from his near fatal crash.
“We set out to create awareness with the movie,” Adam Pearce says. “We wanted to educate people about the prevalence and complexity and, most of all, the isolation that comes with TBI.” The brothers’ next step was to establish the LoveYourBrain (LYB) Foundation, based in their hometown of Norwich, Vermont. The LYB Foundation’s mission is to improve the quality of life of people affected by traumatic brain injury through programs that build community and foster resilience. LYB celebrated its fifth anniversary in November 2019.
“We spent a lot of time listening to what was working for Kevin and other people affected by TBI to ascertain their needs and challenges,” Adam explains. “As part of his rehabilitation, Kevin started practicing yoga, which helped him regain his focus, balance, and peace.”
In 2015, Dr. Kyla Pearce (Adam’s wife) developed LYB’s accessible yoga program, a six-week program designed for people with TBI and their caregivers. Each class integrates breathing exercises, gentle yoga, guided meditation, and psycho- education with group discussion. LYB
yoga is available free of charge to participants. The program is currently offered in 36 states and 5 Canadian provinces, with the goal of all 50 states by 2021.
“We spent a year researching best practices for adapting yoga to support common symptoms from brain injury,” Kyla says. “That process confirmed that no one was doing it at the scale we envisioned— despite the demand. So, we consolidated our curriculum and now we’re the only
organization offering this approach to community-based holistic health care.”
Kyla serves as senior director of the LYB yoga program. Her work as a postdoctoral research fellow at Dartmouth investigates the impact of yoga on different neurological populations with a focus on TBI. Her own path to yoga? “I started practicing while a student at Wesleyan University. I appreciated the noncompetitive nature and that it allowed me to turn inward and connect more authentically with myself.” She did her teacher training in India in 2014. Adam, LYB’s executive director, grew up in a family influenced by Buddhist traditions and meditates daily. “That mindset shapes the community we’re creating,” he notes.
LYB yoga is an evidence-based practice, with proven success. The participants fill out a comprehensive survey at the end of the six weeks, and Kyla’s team analyzes that data. “This direct feedback from TBI survivors and caregivers helps us hone our approach,” Kyla notes. A recent study found that during a two-year period, more than 1,500 people participated in the LYB yoga program, which led to significant improvements in quality of life, resilience, positive affect, and cognition. They also noted progress in strength, balance, flexibility, attention control, community connection, and the ability to move forward with their lives.
People with a TBI are transformed by their injury. “If you break your leg, it will eventually heal and return to the way it was,” Adam explains. “The brain doesn’t necessarily work like that. Part of the
recovery process after a TBI is to learn to accept the ‘new you’ and move forward. LYB helps people understand that acceptance is a crucial step in the healing process.”
Hayley Murphy and her fiancé, Andy Wick, were visiting Boston five weeks before their wedding in May 2018. While they were crossing a street, a car jumped the median and crashed into Hayley, tossing her over the hood. “I was knocked unconscious and woke up in Mass General with two skull fractures and bleeding on the brain. For the next two weeks, I slept for 20 hours a day. I was completely out of it.” She also lost her 20/20 vision. However, family and friends rallied around as her strength and balance returned, and the couple married on June 23 at the Trapp Family Lodge. “We were over the moon to be there and so glad we went through with it. But I don’t have many actual memories from that day, which is why I’m obsessed with the wedding photos.”
As the weeks passed, Hayley kept thinking the headaches, fatigue, forgetfulness, and dizzy spells would all go away and she would resume her old life as a nurse in Burlington. “I tried to go back to work several times because I felt it would normalize things, but it kicked my butt. I looked the same on the outside but wasn’t capable of what I was doing before. It was hard on my co-workers because I was easily overwhelmed, overstimulated, and tired all the time. I realized I couldn’t handle all that I used to do. So I waved the white flag and gave in.”
But Hayley didn’t give up. Her occupational therapist suggested she check out LYB yoga at Sangha Studio in Burlington. “I walked in there and felt immediate relief. There were a half dozen people who were living what I was living. People suffering with a TBI can feel isolated and lonely.
In my own case, I went from being social to being on the couch all the time, in the dark, and not feeling well. During that first session, I knew this was where I was meant to be, surrounded by people who understood. I think that’s where everything changed for me. That’s how I came to grips with accepting my new reality. LYB yoga has helped de-stress my life in so many ways.”
“Brain injury is an invisible illness,” Hayley muses. “I looked normal but it took me over a year to feel like I was back to being a functional person, able to maintain my energy level, and get through the day.” As her strength and confidence returned through yoga, Hayley began to pursue new interests. She started a career as a freelance wedding photographer and became a yoga instructor.
Hayley is keenly aware that an inch in the other direction and she might not be here today, but she embodies the “realistic optimism” that LYB espouses. “The accident helped me to look at life in a new way and see that things aren’t happening to me, they’re happening for me. It flipped our whole life upside down, and I’m definitely the new Hayley. I used to pride myself on being driven and on top of my game. Now I’m a bit forgetful and sometimes lack a filter, which is pretty common for people with TBI. Luckily, I tend to blurt out happy thoughts. My husband, Andy, has been so wonderful and supportive. The accident transformed who I am and serendipitously led to these new opportunities and
Hayley will attend the training this March in Vancouver to become a LYB yoga instructor. And she hopes to become a LYB intern doing outreach and education. “Honestly, I wouldn’t be where I am today without LoveYourBrain.”
Slow the Pace, Remove the Pressure
“TBI often leads to dizziness, fatigue, and headaches, so we created strategies to avoid further physical or mental stress,” Kyla says. “Sometimes in a yoga class, you feel pressure to achieve a certain shape or way of positioning yourself. Our classes do the opposite; we encourage people to listen to and honor what they can feel from the inside, which is a very empowering message. By supporting people to turn inward, we see people tapping in to their inner resilience in a new way. In many cases, people with TBI already feel different or struggle to keep up with daily life. They don’t need one more pressure.”
Caitlin Pascucci founded Burlington’s Sangha Studio in 2014. Sangha is a nonprofit, donation-based yoga studio with a social mission to make yoga accessible to all, regardless of ability to pay. LYB’s specialized population and commitment to offer free programs to TBI survivors aligned well with Sangha’s mission. In February 2016, Sangha became LYB’s first partnering yoga studio in the nation.
“We host the FUNdamental LYB six-week program several times a year,” Caitlin says. “It’s incredibly accessible with a gentle approach and very low stimulus to make participants comfortable. We keep the lights low, cover the floor-to-ceiling windows, and there’s no music. We teach slow movements that can be done standing or sitting on the floor or in a chair to reduce dizziness. People can use props and all the poses can be modified to meet the needs of each individual.”
Kyla and her team ensure that all yoga instructors have undergone rigorous training on how to teach adaptive yoga. In late 2018, approximately 300 trained instructors were teaching at 60 partner studios across the nation and in Canada. Each class, geared for 7 to 13 participants, meets once a week for six consecutive weeks. The 90-minute yoga instruction is followed by a half-hour group discussion. This vital feature enhances the sense of communal support, a powerful opportunity for participants to share openly about the challenges and triumphs they’re experiencing. Most people who have attended these sessions describe them as “life shifting.” “As of 2019, we’ve served nearly 3,000 people with TBI and their caregivers,” Kyla reports. “Twenty percent repeat the program because they find it so empowering and healing.”
Maggie Smith, already a yoga instructor, admired LYB’s mission so she trained under Kyla in Boston. She then taught a few six-week sessions at Heart of the Village studio in Manchester in 2016. “I’m really impressed with LYB’s organized and thoughtful teaching approach—and the support that they provide—not only to students, but to the instructors as well. They trust each of us to execute the curriculum they created, which is consistent and can be replicated in any studio by a trained teacher. I just find the whole organization and their mission incredibly motivating. Brain injury is pervasive and impacts every aspect of the person’s life. It’s nearly impossible for the outside world to grasp the challenges these people face every day.”
So how to support the newly empowered participants after the six-week session concludes? “As part of our partnership model,” Kyla explains, “our studios offer continuation classes taught by trained teachers. Those classes are offered at a discounted rate of five dollars in order to remove some financial barrier and to allow past participants to continue to practice yoga, ideally with their TBI community. It’s an important part of the healing process to remain connected. We also have online videos for people who don’t live within driving distance of a partner studio. We’ve had people take two-hour train rides to attend the weekly class, or stay overnight.”
Take Care of the Caregivers
LYB also hosts eight extended retreats annually in Vermont, Maine, Colorado, and California. The retreats offer deep immersion and connection among TBI survivors, caregivers, neurologists, and music and art therapists. According to Adam Pearce, “This is where we introduce the Four Pillars of mindfulness, movement, community, and nutrition. Our retreats offer such depth of acceptance, vulnerability, and sense of belonging, it’s a profound experience.”
Adam knows firsthand what it takes to be a caregiver, which is why LYB works closely to support people in that vital role. Naturally, after an accident, all the focus is directed to the person who suffered the TBI. However, Adam realized through his work as caregiver that he had to change his own approach and do as much work as Kevin was doing.
At an intense silent meditation retreat in India in 2014, he came to a transformative epiphany. “I realized I had been holding on to a story of what I, what we all, thought Kevin’s trajectory of life was supposed to be. And when I released myself from that unrealistic construct, I gained a whole new awareness and acceptance of Kevin. We then worked to cultivate a new relationship that was based on mutual understanding. That reality can get lost because of the pressure that it takes to be a caregiver.”
When asked about the challenges the foundation faces as it enters its sixth year, Adam responds, “To sustain our pace of growth yet still keep our programs free for TBI survivors and their caregivers.” Kyla adds, “March is Brain Injury Awareness month, so we created MindfulMarch, a campaign to raise awareness about TBI and funding to keep our yoga program free for our community. We offer a 30-day Meditation Challenge where you can sign up and receive a daily meditation for the month. It’s a great way to feel connected with a larger community across the country meditating in support of our organization.” Adam concludes, “The brain is a complex piece of equipment, and TBI is an invisible and isolating injury. LoveYourBrain is focused on raising people’s awareness.”
As the public face for TBI awareness, Kevin travels across the United States to educate about the perils and isolation of TBI and the need to love—and protect—your brain. “Kevin embodies the Four Pillars and invests in his brain through daily choices in exercise, nutrition, and community,” Adam reflects. “He’s 10 years out and the healing never stops. I’m amazed at his resilience. People don’t comprehend how hard he works. He lives what he preaches. It’s extraordinary to see Kevin set an example that creates so much help for so many people.”