Surfgimp Jay Liesener went out the way he lived life – on his own terms

December 3, 2017

The morning Milton resident and adaptive athlete Jay Liesener died it was one of those late-fall mornings that remind people why they live at the beach. The sun was bright, with bluebird skies and eerily-calm ocean waters rolling in.

Two days later, Nov. 29, from the three-season porch of her Milton home, Melanie Liesener, Jay’s wife, said she thought it was fitting the ocean was tranquil. Jay was not a religious man, she said, but he believed he would continue on as particles of the universe.

Melanie said in Jay’s final hours the shades to their bedroom were open, and he was propped up so he could take it all in. As he looked around the room, she said, it was clear that he was not seeing what everyone else in the room was seeing. Wherever he was in those moments, Melanie said, there was water, because that was where he was pain free and happy.

“In the end, he left this world peacefully. Loved,” said Melanie. “I thought the ocean waters being calm that morning was a sign the universe was accepting him peacefully.”

Liesener’s inspirational story is no stranger to Cape Gazette readers. At the age of 17, Liesener suffered a C4 and C5 spinal injury and was wheelchair-bound the rest of his life. He went on to accomplish many things, but decades of paralysis left his body too weak to recover from sores developed while in his wheelchair. Earlier this year he decided to choose quality of life over quantity, which could have meant another 10 or 20 years in bed. At the time, Liesener said he knew it was a decision that would hasten his death, but he said the other option was not an option.

Most recently, in July, the Cape Gazette reported on Liesener’s final adventure – a surfing trip to Southern California with help from a group of friends known as Team Surfgimp.

The trip was successful, but Melanie said when the team returned, Liesener suffered through a couple of weeks of depression thinking he had just come home to die. That didn’t last long though, she said.

“He made another list of things he wanted to get done before he did die, and began checking those things off. He never spoke of it again,” she said, laughing. “It was tiring. He had a lot of energy.”

Near the end of October, Liesener’s health deteriorated to a point where he could no longer leave home. In many ways, that’s when the celebration of his life began. For the remainder of his life, friends, family and well-wishers were constant.

During the day, said Melanie, it was calm, with a quiet stream of people who needed to tell Liesener one last time what he meant to them. At night, she said, it was a party.

“There was joy and celebration right to the very end,” she said. “Neither one of us expected that.”

A number of friends and family set up camp to help Melanie, who had been Liesener’s primary caregiver since the late 1990s, with pain medication – near the end administered every 10 minutes – and emotional support.

One of the family members was Jennifer Costello, Liesener’s older sister. She said Liesener was a bundle of energy his whole life. Before his injury, she said, he was a typical boy – always roughhousing, going hard, riding his dirt bike or skateboarding.

“We always had a good relationship,” she said. “He was my first friend.”

Costello, who lives a few hours away on the Chesapeake Bay’s western shore, said she had always been aware of Liesener’s surfing adventures, but she didn’t grasp the relationship with Team Surfgimp members until they treated him like family in the final weeks.

“Team Surfgimp was always another thing to catch up on, but there were so many things going on,” she said, expressing gratitude toward the team. “We all got a lot closer. There were bonds formed that won’t ever be broken.”

One of those bonds is with Melanie. Prior to this, Melanie said, Jennifer was a beloved sister-in-law. Now, there’s a bond that would never have happened if it weren’t for this experience, she said.

Melanie said she wanted to make sure members of Team Surfgimp, which include a wide swath of people from across the country, know how important they were to Liesener. She said she can remember the specific email he sent in 2014 when he expressed to her how the team had given him a life he never thought he would experience.

He never felt he would have true friends, she said. Sure, he had a lot of acquaintances, he had that type of energy, she said, but he said team members saw him as a regular guy.

It’s hard to explain, she said. He was loved beyond measure by his family, and he had connections through school and work, but he was lonely. He treasured the genuine friendships from the team, which he was able to create on his own.

“By the end,” she said. “He had more friends than he could count.”

Sitting in a house built for a person in a wheelchair who is no longer there, Melanie said it’s tough to think about the future. She said she hasn’t had to spend a night alone in the house yet. She admits when those nights happen, they will be difficult.

She said she finds strength knowing the foundation created in Liesener’s honor, the Team Surfgimp Foundation, was formed before his death. It was what he wanted, she said.

“Surfgimp is not going anywhere. We just lost the founder, but we didn’t lose the mission,” she said confidently.

Team Surfgimp responds to Liesener’s death

A couple of days before Jay Liesener’s death Nov. 27, friends and family gathered at his house for a Friendsgiving. There were turkeys, stuffings, casseroles and desserts. The mood was celebratory, but like the smoke from Liesener’s pain-reducing medical marijuana, a cloud of finality lingered.

Already frail from decades in a wheelchair, Liesener was especially vulnerable as he drifted in and out of consciousness, now too weak to get out of bed. One by one, or couple by couple, people made their way over to Liesener to express love and admiration. It was calming to see he was at peace with his decision.

Those final moments will be a source of strength for many people in the future – mainly because of how strong Liesener was. When it was my turn, after expressing my eternal indebtedness to Jay and his wife as a catalyst for the life I now enjoy, he lifted his head up, smiled, and said, “We just thought you were cute.” Having expended his energy supply, he laid his head back down and closed his eyes.

That’s the way Liesener was. He knew this process was emotionally draining for everybody, and to be sure, there were moments of weakness. He soaked up that emotion, determined to be strong and dignified to the end.

Liesener touched the lives of many people. What follows is a small selection of thoughts shared on a Facebook support group set up in the final weeks of Liesener’s life.

Pat Allegro-Smith, Rehoboth Beach: I want to express my sadness on losing Jay physically from our lives, his spirit will always live in all of us forever. I want to thank Mel for being the amazing woman who dedicated her life to unconditionally loving and supporting Jay. Because of you, Jay lived his life to the fullest. You are a true hero and inspiration to us all. Without you the Surfgimp family would never have been created. I just wanted you to know your devotion, love, and selflessness did not go unnoticed nor unappreciated by all. We love you Mel and will always be here for you as you were for Jay. Thank you for being the wings beneath Team Surfgimp.

Suzannah Frederick, Milford, on the kids who were around through Liesener’s last few weeks: They have been surrounded by love. They have seen their parents cry over the love of another man. Not one was afraid to be close. They have all cried. It's remarkable, amazing, unheard of. They understand, and they don't. They are full of questions, and quiet with thoughts. They are full of curiosity. How lucky we are all to have each other. Saturday night Jay opened his eyes to the noise and commotion outside his bedroom door. He a huge HUGE smile. His sister Jennifer Liesener Costello asked him, "What?" and his breath raised his voice. "KIDS"

Mark Thornton, Carlsbad, CA, fellow adaptive surfer: I only met Jay once and could tell right away he had a spirit of true aloha. That day was one of the best days I had surfing with friends, new and old. I'm sorry for his loss and that I will not get to truly know him.

Ed O’Connor, Rehoboth: As each of us find our way through this moment, there is strength in knowing our great friend, loving husband, dear brother, blessed son, hard charger, and merciless back seat driver lived a full life and will live on in our hearts as well as his foundation.

Duck Village Outfitters, Duck, NC: The #teamsurfgimp crew made one or two trips to the Outer Banks every year since [2014], and Jay’s Outer Banks surf family showed up every time to help our friend out. On Jay’s last trip here this past spring, he came by DVO to tell me his health was deteriorating, and his doctors had told him he was in the final months of his life. Jay lived the last days to fullest, surfing, hang gliding, and even made a final surf trip to California. Jay’s legacy will live on. Thanks for the inspiration and friendship and blessings to his family.

Lisa Leslie, Vermont: I don’t know what it means when the team says, “Live like Jay.” I am not a surfer, I’m afraid of skydiving and I don’t know what choices he would make in life. Y’all know him way better than I do. So to me, “Live like Jay” might mean to be open to everything, to wrangle life by the horns, to get everything you can out of it – as Henry David Thoreau said, “suck all the marrow out of life.” That was what Jay seemed to do, and his way-too-short life was a life well lived. So today, what “Live like Jay” means for me is to eat a piece of maple cream pie. I try to avoid sugar, so this is a rarity for me. But I’m gonna enjoy it and not let it bother me — and think of Jay.

Cynthia Bogart-Schmidt, Milton: When I stepped outside today, I felt it was so wrong that the world should appear the same as it had on previous days. My extraordinary friend Jay would no longer be wheeling into the driveway for our happy hour chats, and my heart is so very heavy with grief. John and I weren't too sandy, but we kept company with Jay and Mel behind the scenes and shared times that were special to us.

Yvette Walls Dennehy, Milford: Through many tears and the philosophical wanderings of a tender young heart, Keegan and I deemed that "Mr. Jay is sleeping very deeply right now so that his dreams can be full of loved ones, and angels will help him on his journey when he's ready to go. The best part.....once he gets there – even though he'll miss his team – he'll be able to surf without them until we meet again.