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My Father's ALS: A Son's Healing Journey
My Father's ALS: A Son's Healing Journey is Kenneth Kann’s story of the death of his father and his own coming of age. In 1979 Ken’s father, Sam Kann, was diagnosed with amyotrophic lateral sclerosis (ALS), a degenerative nerve disorder also known as Lou Gehrig’s Disease. A proud and self-reliant man, Sam suffered rapid physical devastation that left him a quadriplegic, completely dependent on others. His illness brought Ken frightening new responsibilities and changed their embattled relationship. That ordeal over 15 months, ending with Sam’s death, provoked Ken to transform his life at 36.
My Father’s ALS is a story of terminal illness that begins with Ken’s startling discovery that his life in Berkeley, California, continuing from the social upheaval of the 1960s, has left him unprepared for Sam’s calamity. Sam, who grew up in the Depression, encounters a shattering personal crisis with ALS, the transformation and end of his life. Ken takes successive trips home to a Chicago suburb, Skokie, to help his parents cope with this devastating disease and to face a history of conflict with Sam.
Through these visits Ken recounts Sam’s struggles to live with ALS, from becoming too weak to drive or dress himself, through frightening problems with eating, speaking, and breathing. Ken witnesses his father suffer physical decline they cannot halt. Ken describes their history of clashes, beginning with Sam’s home work shop and continuing through Ken’s escape to sixties Berkeley and career choices.
Ken describes the morning he pushes Sam in a wheelchair about his workplace to retire and say goodbyes, a profound experience for Sam and Ken. There is a gradual reconciliation as Sam relies on Ken for help living with ALS and, finally, help dying.
The story culminates with Sam’s request, a year after diagnosis, that Ken help Sam with suicide. By then Sam is completely paralyzed, as if his body is encased in iron, and he can do nothing himself, not even scratch an itch. Ken recounts his search, before the era of physician assisted suicide, for how Sam could end his life. When Ken finds a method, Sam and Ken plot his suicide. It does not go as they plan.
In an Epilogue, Ken continues the account of their family after Sam is gone. Ken changes careers, marries a young girlfriend, and builds a new life after his experience with Sam’s dying. Years later Ken encounters a crisis of the type he vowed he would be ready for when he felt so unprepared to help Sam with ALS. Sam left Ken a legacy, from his life and his death.
Praise for My Father’s ALS, A Son’s Healing Journey
“A powerful and achingly honest account of a young man, alienated from his family’s values during the 1960s and 1970s, watching with increasing respect his father’s (and mother’s) struggle with the relentless progression of ALS over 15 months. In telling the stories of family before, during, and after the struggle, Kann provides a quiet and moving account of how being needed as a son led to his becoming more fully a man.”
— Dr. Elizabeth Anderson
“Family dynamics are complicated, and that’s before the awful diagnosis of ALS. Kenneth Kann’s book My Father’s ALS: A Son’s Healing Journey is more than an account of the ravages of a devastating illness. It weaves the story of this extraordinary disease into Kann’s family history in the Jewish communities of Chicago, his father’s life journey as a child of immigrants, and his own baby boomer wanderings. Kann offers a complex and moving portrayal of his family’s dignity caring for their husband and father, including Kann’s struggles to reconcile with his father after years of conflict. This book is a must-read as we contemplate life’s meanings and the unknowns that may confront any of us.”
— Rabbi Ted Feldman, Petaluma
“Ken’s experience as a historian provides him with a unique and powerful framework to contextualize and understand the life and death of our father, Sam, his own life, and the unimaginable effects the illness ALS had on our family. With poignancy, pathos, and humor in the face of misery, this book will touch your heart as you travel through the fifteen-month journey of a son’s deepening love and respect for his father.”
— Rob Kann, Ken's Younger Brother
“Kenneth Kann captures the ALS experience through the story of his father's devastating illness in 1979-1980. In My Father's ALS: A Son's Healing Journey, Kann recounts how his family coped with his father's disease. Along with life and death battles for survival, the book conveys the humor and absurdity of losing control over your body, and the bonds that develop when a loved one needs so much and such intimate help. Kann shows the utter desperation of ALS patients and families, and their grief, as they realize the disease stays one step ahead of them. Through the story of his father and himself, Kann also shows how the ALS journey can lead to deep self-discovery, transformed relationships, and stronger bonds. Though research and awareness has increased during the decades since his father's death, the book set me aback with its reminder of how the experience of ALS remains the same today. This is a gripping account of one family and one son trying to cope with a father's ALS. The predicament is dire, the stories are absorbing, the characters are vivid, and the writing is beautiful.”
— Mary Ann Wittenberg, wife of ALS patient Harry Wittenberg, who wrote about his ALS in Out of Control; Reflections on Matters of Life and Death before he died in 2020. She serves on the board of the ALS Network.
“Ken Kann has taken on a gut-wrenching task: writing a memoir about how he shepherded his father through an awful death experience, the rapid onset of immobilization and strangulation by amyotrophic lateral sclerosis, known as Lou Gehrig’s Disease. It’s a tale with many dimensions told with novelistic confidence—the conflict between a rebellious son and an overbearing father; Ken’s quest to be an historian and author; the saga of a Jewish immigrant family that began their lives in poverty in a Chicago shtetl; their migration to a comfortable middle class life in Skokie; and an amateur’s guide to ALS, a disease that brings on death without escape. Ultimately, Ken and his father, with death approaching, spent many days and hours growing together with warmth, honesty, mutual respect, and a deep love as they explored their lives, apart and together.
— Peter Booth Wiley, Author and Publisher
“A family finds itself thrust into a crucible of overwhelming force when the author’s father is diagnosed with ALS, just as he is about to retire and enjoy a well-earned life of leisure and golden years of reflection. The author, Kenneth Kann, doesn’t miss the terrible cruelty and injustice of it all, but not just for the obvious reasons, although the relentless onslaught of the disease is described eloquently, unsparingly, and with deep compassion.
What makes Kann experience even greater injustice, if that’s possible, is the fact that his father, a perfect specimen of the Greatest Generation, married young and worked his tail off for decades to provide a life and opportunities for others, notably his eldest son, the author. Meanwhile, Kann is suddenly forced to come to terms with the life he was leading in California at the time (1979): He’s been a successful but somewhat perennial student, having also devoted a lot of his time to radical politics in Berkeley; he’s unmarried, has no home of his own, and his freelance teaching employment doesn’t pay much but, if anything positive can be said, he was 30 or more years ahead of what later became known as the unrooted “gig economy.”
He’s forced to come to terms with falling short of his father’s never-dying expectations of him and, worse, the author’s own long-suppressed, and now nagging, expectations of himself. Not letting himself off easily, the author begins to see himself as having obtained a series of not just military – but adulthood – deferments that extended for years beyond abolishment of the draft. In other words, he needs to find a solution for the near impossible needs for his father’s care and at the same time a rehab of his own life and its infirmities, long neglected. Due to the nature of ALS, the passage of time is ruthlessly swift and unforgiving.
With lucid prose, keen intelligence, brutal honesty, and always an eye on what really matters over the long term, Kann delivers a highly-engaging and first-rate narrative of growing old and growing up when they both happen at warp speed.”
— Lawrence Townsend
“The book - as much an autobiography of the author as it is a reflection on a profound coming of age journey - relates his experience with his father Sam’s relentless decline and demise from amyotrophic lateral sclerosis (ALS) and the care he was able to provide a father who had both nurtured him and judged him, sometimes harshly, through his younger years. Kann reflects deeply on his personal pain arising from his affectionate and sometimes fraught relationship with Sam, a proud, resourceful, disciplined, and inflexible man of an older generation. The narrative spans Kann’s hedonistic and activist days in Berkeley of the 1960’s, to the Jewish family home in Skokie, Illinois, and his parents’ sunny condominium in West Palm Beach, as Sam struggles to adapt to a devastating and inexorable disease. Written with deep sensitivity and compassion, in an unsentimental, honest, plainspoken and easily flowing style, Kann’s observations and emotions during this personal journey take us through periods of duress, suffering and unimaginable sadness, lightened by moments of insight and humor. Ultimately, the book documents the uplifting growth Kann achieved through his experience caring for Sam and supporting his mother. It is a deeply moving story of filial duty and courage through which Kann finds the resilience and wisdom that have served him throughout his life. This book is a must-read for anyone who is faced with the task of caring for and supporting a loved one with a tragic, progressive illness. There is a bounty of instruction, stoic wisdom and comfort within its pages for the reader.”
— Nathan M. Bass, MD, PhD.
“I really loved this beautifully written and deeply affecting memoir of a family’s journey with ALS and the agonizing death of their beloved patriarch. The parallel story of how the father’s death created a seismic shift in the writer’s life is inspiring and powerful. Highly recommend.”
— Lynn Duryee