What we want most when someone we love deeply is critically ill is more time. Unfortunately, my time with Owen came to an end far too quickly, but I believe that research will lead to a cure and so I am cycling 1,100 miles through places near and dear to Owen’s heart to raise funds for glioblastoma brain cancer research. If the funds raised can prolong and improve the quality of a life, even for a moment, it’s all worth it. So here I am, biking in Owen’s honor, raising funds, to ultimately try to give someone more time.
I turned to cycling during Owen’s illness, travelling the magnificent country roads and rolling, emerald hills in Taghkanic, NY every weekend. This was my time to release and feel the emotions that had piled up during the week. Usually, it was a release of fear, terror of the inevitable, heart-shattering realization of Owen’s diagnosis. It sounds crazy, but I never saw Owen as sick, even when we were in hospital. How could I, when he was always putting others before himself, cracking jokes, self-sufficient to the best of his abilities, never without open arms and a listening ear? On my bike rides, reality would catch up with me and I’d find myself frustrated and yelling out to the world; sobbing, pedaling harder and harder, devastated at the thought that I could lose the person I loved most in the world.
Routes well-travelled or new would take me back to the House on the Hill to find Owen lounging on the couch, ensconced in a fluffy white cushion, wearing a bright purple polo or blue UNC shirt, blue jeans, grippy Bombas socks, his right hand clasped onto his left wrist. His face always lit up when he saw me, and he would welcome me back with, “Snowbird! How was your ride?!” His enthusiasm was contagious and, smiling from ear to ear, I would sit down beside him on the floor and describe all the turns and magical landscapes I had seen along the way. The bright pink church door in Churchtown, or how quickly the adorable paint foal on route 7 was growing. He’d listen intently, totally immersed in my excitement as if it was the most fascinating thing he’d heard all day.
Over the course of the year, cycling became a passion of mine, and Owen was quick to recognize this newfound fire in me. Another quality of his was his endorsement of advocating for gender equality, so when I came to him with the idea to train for the Tour de France as a way to stand up against systemic sexism in the cycling world, he was my first and most ardent supporter. Having Owen on my side, I began looking for a coach.
My search, along with the world as I knew it, stopped when Owen was admitted to the MSK Neuro ICU. On Owen’s last day with us, amongst several other promises, I gave Owen my word that I would complete my training for an epic cycling challenge. Within a week of Owen’s passing, as I walked along the Hudson River with my parents, I proposed a “Tour d’ Owen'' instead of a Tour de France. They agreed that this felt right, and with their undivided support, I called Noah Middlestaedt, a world renown and uplifting cycling coach with whom I’ve begun my training for G’Owen Strong.
I like to think I supported Owen through his most challenging days, providing a brief escape from the mental and physical exhaustion, the fear, and the pain that came with his diagnosis. Little did I know that he was and will always be the one supporting me. Through G’Owen Strong, Owen gives me daily purpose to do the thing I love most, and through cycling, a means to see the world through a different, beautiful, and dynamic lens.
In my opinion, the best way to honor Owen is to live my life in a manner that brings true happiness in the present, and hope for the future. One of Owen’s beloved doctors, Henry, taught us the power and magnitude of hope. With hope, the end is never in sight. Owen, too, believed this to his core. I have hope that G’Owen Strong will unite a loving community of people touched by glioblastoma brain cancer to work hard to raise funds for research. I have hope that Owen’s legacy is permanent, palpable, and indefinite. Owen is my inspiration and I choose to keep his legacy alive.
My goal is to take even the smallest amount of courage, selflessness, and hope Owen possessed and weave it into my life. I will always Go Strong and Be Strong for Owen.
The tour, dubbed G’Owen Strong 2021, will begin this Fall at Tufts University near Boston, and wind down the East Coast, intersecting at places of significance to Owen—his home, New York City, Middletown, Delaware, home of St. Andrew’s School, his alma mater– and will end in Durham, NC at the Duke University Medical Center, where Owen in due course underwent a promising immunotherapy trial under the vigilant care of Dr. Henry Friedman.
The funds raised will be divided between Preston Robert Tisch Brain Tumor Center at Duke Cancer Institute and Memorial Sloan Kettering Cancer Center in New York City, where Owen was initially treated by oncologist Dr. Adrienne Boire and Neurosurgeon, Dr. Cameron Brennan. We are deeply indebted to them, and to the Radiology Department, the nurses, and the staff of both hospitals.
While beset by the disease, Owen remained his whimsical, pensive, goofy, kind, generous, considerate, and ardent self. If courage and grace were the cure, he would have triumphed. But, more research is needed.
Sometimes in life you meet one person who seems bigger than life. Someone who makes others want to be a better person. Someone who is truthful, kind, humorous, and above all…loving. That person for me was Lawrence (Zeke) Fuller.
All through his life he knew about people and cared about them. His spirituality always guided him to be that simply good person.
Family was his top priority and his greatest joy. As we went through life we were thankful for every moment we had together.
When our son was born it was the proudest day of his life. The moment he was born for…Daddy! And what a dad he was. Always gentle but firm in his convictions. Always being our son’s joyful guide through the greatest journey ever!
Then one day our lives turned upside down. Diagnosis-glioblastoma multiform. How could this happen to our happy family? With Zeke’s always positive attitude and strong spiritual beliefs he moved on. Radiation, brain surgery, chemo—nothing slowed him down for long. He worked, coached Bryce’s sports teams, attended church, was a deacon, a father, a husband, an uncle, a brother, a brother-in-law, son, a son-in-law, and a friend to everyone who met him. He lived life BIG…and loved life…BIGGER!
He was funny, a jokester, a loud laugher, and just quite simply the greatest guy!
Our son, Bryce, said it best when our minister asked him what he wanted to say about his dad. At 13 years old he said, “My dad always walked in his own footsteps. He always did what he knew was right.”
Our beautiful niece Stacia-the daughter of my heart, is the female version of her Uncle Zeke. He will follow you along your ride on the wings of angels…because you were his.
_ Uncle Zeke