Team Surfgimp started nine years ago as a call for a few volunteers to help Jay Liesener realize his dream of surfing. At the time, Liesener had been paralyzed for almost 20 years. But the team has ended up to being so much more.
Liesener’s life forever changed at age 17, when a trampoline accident left 85 percent of his body paralyzed.
“No, he wasn’t a gymnast,” said Liesener’s wife, Melanie. “He was just an adrenalin-fueled kid. He still is, in many ways. You know, he hang-glides, too!”
The first few years after the accident involved hospitalizations, rehabilitation and taking classes at the University of Maryland. They were not the college years he had anticipated: an education supplemented with fun, frolic and friends. That whole life was gone. Rather, Liesener’s focus was trying to get his hands to work, his electric wheelchair to negotiate the campus and his body to avoid causing embarrassment.
After earning a bachelor’s degree, Liesener stayed at Maryland and got his master’s degree and a doctorate in rehabilitation counseling. It was during that time when he met Melanie, who was in the same program. Rehabilitation counselors help people with physical, mental, developmental and emotional disabilities to live independently.
“She’s been my rock ever since,” said Liesener.
“As part of our program, we had to undergo counseling ourselves,” said Melanie Liesener. “I think that helped Jay deal with things earlier than many people in his situation — 29 years later, he is still a very well-adjusted human being.”
After finishing their degrees, the couple were both offered teaching jobs in Norfolk, Va., and for a few years their professional lives were rewarding and normal. But then Liesener started to suffer from some of the common, miserable secondary effects of quadriplegia, including scoliosis from prolonged sitting in a wheelchair, pressure sores and septicemia. In 2002, he underwent a streak of eight separate surgeries and had to decide to give up his career.
“I was in a psychologically dark place,” said Liesener.
But one day he happened to watch a movie that eventually changed his life. It was a 2003 documentary about the soul of surfing, called “Step into Liquid.” The film included surfing clips from around the world, and wherever people surfed they were similarly “stoked.” Their love of the water and how it makes them feel has created a tribe of their own.
The particular film clip that caught Liesener’s attention was just five minutes in length, about halfway through. It depicted quad surfer Jesse Billauer — who, with the help of his childhood and surfing friend Rob Machado, had returned to the ocean as an adaptive surfer. Subsequently, they founded the organization Life Rolls On, which aims to help others with paralysis experience the water.
“Just watching that movie gave me a ray of hope of getting something back that I could love,” said Liesener. “It was around three years later, after moving to Delaware to live closer to our parents, that I had my first opportunity to surf, at a Life Rolls On event in Virginia Beach.”
With intermittent health problems, it took until 2008 for Liesener to bring Team Surfgimp to fruition.
Melanie Liesener explained what is involved for an adaptive surfer:
“You need to have a board shaped to precisely fit his physical needs and different center of gravity, and with special supports for his hips, elbows and wrists. Matt Garboll from Liquid Board Shop in Rehoboth has shaped both Jay’s boards. The current one is lighter and faster. Then he has an attachment called Freedom Trax to allow his wheelchair to move across sand. But the biggest need is for a group of at least eight people in the water with him, and on big surf days, he needs 12 or so,” she said.
It takes about four people to comfortably move Liesener from sitting in his chair to a prone position on the board and out into the ocean. Two or three stay with him at the edge of the wave break line, waiting for him to signal which wave to take. He gets a push in the right direction and then is able to steer the board to take full advantage of the wave. In other words, he is actually surfing — not just being carried by the water.
Other team members situate themselves along the course the wave will likely go. He might tumble off at the start of a large wave, or he might reach the shore. The danger for Liesener is to fall off the board face down. Although his wetsuit would keep him afloat, he would be unable to roll over by himself in order to breathe.
The moment he is separated from his board, the team members rush to his side, hold him high in the air, and carry him through the crashing waves that follow, until his board is retrieved, and then the process starts over.
And that is how it started — with a few dedicated people who mostly work with Melanie at the Sussex Consortium.
“Jay came up with the name ‘Surfgimp,’ with the knowledge that ‘gimp’ is a negative word. He likes using words as a way to reclaim power, in the opposite way from which they were intended,” said Melanie Liesener.
“First, we thought of ourselves as a team,” she said. “But over the years, our numbers have grown to more than 50 active participants and 500 supporters. We come from different backgrounds, economic levels and political persuasions, from Bethany to Milford, and we became friends. Now we are a big family. “
Jack Frederick was one of the first to become involved and has recently appeared with Liesener on two episodes of “Delmarva Life” on WBOC-TV.
“I’m so proud to be part of this family of friends,” said Frederick. “Once you’re in, you’re in… it’s kind of like being part of the mob! In the beginning, Jay was concerned he was being selfish by taking our time when we could be surfing. But we can choose to surf whenever we want to, and being able to help a friend experience the healing power of the water is the best thing I can do.”
Katie Rickards was recruited by Frederick to join the team five years ago.
“Jay has changed my whole perspective of surfing,” she said. “I used to get disappointed by the size of the waves or the timing of the tide. But I can go surfing whenever, and there are so many more important things than getting the best wave. Jay is totally inspirational. And Mel is incredible — 100 percent supportive in every way.”
Rickards has a 10-year-old son, and she loves the fact that whole families — even babies in arms — come to each event.
“The kids have a ball!” she said. Indeed, some of the kids have grown from playing at the water’s edge to being full members of the team who actively support Leisener in the ocean.
For nine summers, whenever possible, Team Surgimp has gone out once a week to surf at either the north side of the Indian River Inlet or at Assateague. They have even taken trips together to Hawaii, Puerto Rico and, recently, Southern California. On that occasion, Liesener was excited to meet one of his heroes, Rob Machado — the surfer from “Step into Liquid” who gave him that first ray of hope.
Before the “trip of a lifetime” to California — which, sadly, is probably Liesener’s last travel opportunity — a post was created on the YOUCaring compassionate crowdfunding site. The money raised was not for Jay and Melanie to travel but to ensure sufficient numbers of his essential team. On the “Story” section of the funding request is written:
“The sense of trust Jay has in his team is phenomenal. His life is in their hands, yet he takes that risk with an effortless faith that is no less than remarkable. In the words of Jay, ‘When I am in the water, it is the one place where the pain disappears; it’s like before my accident, and I am free. Yes I know it is crazy, we shouldn’t probably be on the beach, let alone in the water, but it’s elemental — there is huge risk, but the thought of going surfing keeps me going. I trust the people in the water; it is sacred. They give me something back I thought I had lost.’”
But there have been periods of time that Liesener was unwell and unable to surf. Last year, he followed his doctor’s advice and spent three quarters of the year, very ill, in bed, trying to heal open sores. It was an exasperating and depressing time.
This year, two things have changed. First, Liesener has decided to live his life to the fullest possible, and that means taking care of his symptoms and not being reckless — but no more long stays in bed. Second, medical marijuana has been legalized in Delaware.
“Jay always refused narcotics for pain because he wanted a clear mind,” said Melanie Leisener, “And he resisted offers of marijuana before it was legal, because that’s who he is. But it has made such a profound difference. It takes away his fever and chills, relaxes his arms and allows his whole body to rest and sleep better. From the first dose, he has amazing relief.”
Nevertheless, Liesener’s body is struggling, and each surfing event is bittersweet. Soon, it will be too cold for him to go out.
But last Sunday, the Team Surfgimp event coincided with the second annual Diamond State Surf Classic, and the waves, for Delaware, were phenomenal. Not only was it Leisener’s first time to be included in a competition, but his aunt and uncle, visiting from Illinois, got to see him surf for the first time.
“It is great to see him being able to enjoy himself,” said Marian Baderschneider, his aunt. “We are so grateful to all these people who help him. And Melanie is an angel.”
The end of this surfing season — regardless of Liesener’s health next year — will not be the end of Team Surfgimp.
This family will continue. Maybe Liesener didn’t have many friends in college, but he has a ton of friends now and more personal social freedom than ever before. And they have a purpose.
“I really want to share what we’ve built with others,” said Leisener. “Whether they be paralyzed, have some other form of physical disability or PTSD or autism, we can help them find how therapeutic being in the water can be.
“When we were in California, I was so impressed with the strength of their adaptive surfing program. At the next Olympics in Japan, surfing will make its debut, and adaptive surfing must soon follow in the Paralympics. It is our time.”
To learn more about Team Surfgimp, suggest others who would benefit from the surfing experience and see amazing photos that Melanie Liesener takes at each event, search for Team Surfgimp on Facebook.
“Some call me the glue that holds it all together,” she said. “I just know we are really loved and have a wonderfully big community that surrounds us.”