Michael’s Legacy
To know Michael Gustafson was to know laughter and ambition and brevity. Michael came into this world a leader. He was the first born twin (a fact he never let his sister forget). He shared not just the womb, but the same crib, the same bed and books and appetite for life with his twin sister. We think this is why, even as a young teenager, he would often wish to hold your hand or touch your arm when he sat next to you at the table or on the couch.
It is true that Michael’s life and his decision to donate his body and tissue to research are extraordinary, and yet, to his family, what made Michael so special were the wonderfully ordinary things about him… the way he would put his head in his hands as he laughed as if his laughter was too big for his body to hold up on its own or how we would be lying in bed and beckon to his older brother that he was about to be sick, only to whack him with a pillow as he rushed over to Michael’s bedside to help.
Towards the end of Michael’s life, his family spent many hours sitting and laying with him as the reality of his mortality became more and more real. Through the devoted care of his parents, he learned to meditate, which brought him moments of peace and profundity amidst the tumultuous process of dying.
The most important parts of his day changed from sports practices and homework to being able to sit up beside the window to observe and enjoy the outdoors and lying close to the friends and family who loyally visited his bedside. In this way, he became a teacher to the hundreds of people that came to follow his journey with cancer, inviting them into slowness and stillness alongside him.
Michael did not come into this world alone and he certainly did not leave alone, for his laugh, his mischievous grin, his penchant for deep thought, and his selfless heart are left with everyone lucky enough to have known and loved him.
You are cherished beyond belief, Michael Gustafson.
Our Donation Story
Michael was nearing his 15th birthday when it became clear he wasn’t going to beat brain cancer for himself. But he could beat it for someone else.
“I’m going to give up my life in order to see if we can find a cure.”
It was Michael’s idea to be a tissue donor and he called it his “Master Plan.” And that decision, that plan changed everything for Michael in his final months. The angst and existential question of finding meaning in his life was answered and he could surrender to the dying process knowing that his life would have meaning because as he said, through his donation, “No other child will have to suffer through what I did.” And that knowledge, that hope allowed him to let go and be be at peace. In the above video, I recorded Michael talking about his Master Plan. We were in a restaurant parking lot after eating one last time at a favorite steakhouse in Tampa.
Some of Michael’s post-mortem tissue was sent to Dr. Taylor’s lab at Hospital for Sick Children. I can’t describe what it was like for our family to hear from Dr. Taylor that Michael’s tissue donation was a success, that he had created cell lines and mouse models from his tissue.
But that day, we all sat in my husband’s study crying with great joy and exhilaration that Michael’s wish had come true. Of course, this is not how we would have written the script of our family’s life, but because we can’t make new memories with Michael, knowing that he lives on in these labs, impacting science just as he had dreamed of doing, that was the greatest gift we could possibly receive.
When we receive publications that Dr. Taylor sends letting us know that Michael’s tissue was part of the study that made the paper possible and another phone call we received to say there was an actual protocol change made to recurrent medullo patients based on research that Mikey was a part of? That’s a touchpoint with our boy, it’s an incredible gift to our family and actually to all the families who are currently on the cancer journey… hope for better treatments.
