Gleason, Steve. A Life Impossible: Living With ALS: Finding Peace and Wisdom Within a Fragile Existence. New York: Knoff 2024. Print.
I sat naked in the shower while a twenty-four-year-old man washed my armpits. Across the bathroom, my three-year-old daughter, Gray, sat in the middle of the floor, cross-legged like the Buddha, with one difference. She was wailing hysterically and incessantly. Inconsolable. And I was incapable of helping her.
Description:
Yet such is the ongoing existence of author Steve Gleason for the past thirteen years (and counting) since his diagnosis of Amyotrophic Lateral Sclerosis (ALS, i.e., Lou Gehrig's Disease).
He thoughtfully, emotionally, and openly discusses his journey from his boyhood through years as a professional football player, to young married trying to understand his fatal ALS diagnosis, and on then his continuing struggles with his restricted life today in his memoir, A Life Impossible.
To call him a survivor is too passive a label. He is a battler. Throughout his life he has deeply contemplated his life, his personal situation, his emotions, and his future. His brilliant writing in this book are transporting. Gleason allows readers into the deepest parts of his mind, from denial of the diagnosis as a 33-year-old man to a firm confidence he can beat the disease; from despair as his relationships crack under the strain of his needs for constant, intimate care, to occasional peace of mind as revelations occur to him that give him even temporary triumphs in communication or action.
I'd spent most of my life seeking the sacred and extraordinary, but [meditation] was showing me that the sacred is within us....I'm not sure how much it was improving my "real life," but for a guy who was living with ALS, to have an hour a day of peace and even bliss, it was a welcome change.
During Gleason's New Orleans Saints' football career, he played on special teams. In 2006, he blocked an opposing Atlanta Falcons' punt on their first series of downs which was quickly recovered for a Saints' touchdown. This was an incredibly gutsy play by Gleason which surprised everyone on the field, the stadium, and in the Monday Night Football audience, and led to a Saints victory.
It was an historic play as this was the first game held in the New Orleans Superdome, a beloved landmark for the citizens, which had finally opened after the devastation caused by Hurricane Katrina. Gleason's block and eventual Saints' victory signaled the beginning of the city's recovery. There is now even a statue of Gleason blocking that punt residing in front of the stadium, so important was the symbolism of New Orleans' triumph.
But ALS soon robbed him of his dream to live off the grid with his new wife, Michel, in an isolated spot somewhere in the Pacific Northwest. Slowly and unceasingly, he awoke each day to another loss of strength and function. "Most people awake each day from a nightmare. I awake to a nightmare," he stated.
He also lost all his savings due to an investment with friends in an alternative real estate company which went bankrupt. He repeatedly tried for a different diagnosis, experimented with every type of possible cure from faith healers to diets to meditation. His eventual failures to walk even a few steps, swim, have sex, or swallow forced him to realize that ALS was progressing relentlessly.
But although he writes of his discouragement with his situation, he also created "Team Gleason" with friends and families to explore treatments, medical devices, and opportunities to expand horizons for other ALS patients.
He wanted to prove to himself and others that life can still be lived, and began to travel, give speeches, fish for salmon in Alaska, and even reach the top of Machu Picchu in Peru sitting in an electronic wheelchair that had to be carried over foot-wide pathways.
Gleason proved to ALS sufferers and others that the world could still be expanded . While he still could speak, he recorded 1,500 English phrases for a company called CereProc which then created a customized voice similar to his own for oral expression of his typed words.
Team Gleason grew and donors contributed to ALS research. The highly popular ALS fund-raising Ice Bucket Challenge was started by a Team Gleason member. Other ALS patients formed discussion groups to share stories, coping techniques, and understanding hearts with each other and the world. Through Gleason, others learned they were not alone, had options, and could lead expanded lives.
Gleason received the Congressional Gold Medal, the highest United State Civilian honor, in 2019. Then in 2024 he was presented with the Arthur Ashe Award for Courage given for "strength, courage and willingness to stand up for their beliefs in the face of adversity.” Upon receiving this award, Gleason delivered a brilliant speech (created before the ceremony using only his eye/laser letter-by-letter composition program) verbalized through his synthetic voice to the ESPY audience. A documentary film, Gleason, was recently finished (available on Amazon Prime). His social media site has over half a million followers today.
A wonderfully powerful book that spares readers no emotion, thought, or dream that enters author Gleason's mind and world throughout his journey. Highly recommended.
Now I realize this: Life gets ugly at times, so when we have the chance to do something amazing in the midst of ugly, go for it.
Happy reading.
Fred
If this book interests you, be sure to check out:
Bauby, Jean-Dominique. The Diving Bell and the Butterflyh: A Memoir of Life in Death.
One man's memoirs, painfully written using only the blinking of his one working eyelid, revealing how he experiences the "Locked-In Syndrome" where nothing on hiss body can be moved, no words can be spoken, yet his mind and awareness are still present in his seemingly lifeless body. Absolutely astonishing and powerful. (previously reviewed here)
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