A Life Impossible: Living with ALS: Finding Peace and Wisdom within a Fragile Existence

First described by Jean-Martin Charcot in 1874,1 amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig disease, is a relentlessly progressive, currently incurable neurodegenerative condition that can afflict anyone. Initially considered to be a pure motor neuron disease, ALS is now recognized as a multisystem neurodegenerative disorder with substantial clinical, genetic, and neuropathological heterogeneity. After Alzheimer disease and Parkinson disease, ALS is the third most common neurodegenerative disease. Approximately 10% of ALS cases are familial. Superoxide dismutase 1 was the first ALS gene to be identified, in 1993. Since then, more than 120 genetic variants have been associated with risk of ALS. The incidence of ALS in the United States and Europe is about 1 to 2 per 100,000 people, and the prevalence is approximately 10 to 12 per 100,000. Both the incidence and prevalence increase with age, resulting in a lifetime risk of about 1:400. Every 90 min, someone in the United States dies from ALS. There are currently seven Food and Drug Administration (Silver Spring, Maryland)–approved drugs to treat ALS and its symptoms. Although none of these medications is curative, when combined with multidisciplinary care, proactive respiratory management, and nutritional attention, they can improve quality of life and extend duration of survival, albeit modestly. The mean life expectancy ranges from approximately 2 to 5 yr after the onset of symptoms. The above summary is woefully inadequate to convey the agonizing experiences of persons suffering from ALS. This void is touchingly filled with extraordinary insight in A Life Impossible: Living with ALS: Finding Peace and Wisdom within a Fragile Existence by Steve Gleason, M.B.A., with assistance from the sports journalist and columnist Jeff Duncan. Gleason wrote the book during a 2-yr period, writing via a keyboard equipped with eye-tracking software. This challenge became even more daunting when he lost his ability to blink, necessitating 8 to 10 “eye breaks” per day, when his care team instilled drops into his eyes, taping them shut for 15 to 30 min. Now 47 yr old, Stephen Michael Gleason was diagnosed with ALS in January 2011, a little more than 2 yr after he retired from his stellar career with the New Orleans (Louisiana) Saints in the National Football League (NFL) at the end of 2008. He was told his life expectancy was approximately 3 yr. Gleason became an NFL legend and a New Orleans hero when he blocked a punt against the Atlanta Falcons on September 25, 2006, the evening when the Superdome reopened after Hurricane Katrina, enabling the Saints to score a much-needed victory for the citizens of that beleaguered city. So transformative was the aftermath of the play that a bronze statue commemorating the event was erected outside the Superdome in 2012; the statue is appropriately titled Rebirth. A Life Impossible is inspirational and revealing as Gleason chronicles with searing honesty the relentless progression of the devastating and often humiliating disease that robs him of his ability to move, to eat, to speak, and to breathe independently. Every day becomes a learning experience—and also a struggle. In his pre-ALS life, Gleason was a vibrant, adventurous young man with eclectic interests. A voracious reader, poet, journal writer, explorer, and nature lover, he was far from being a unidimensional “jock.” When ALS struck, the author became fearful and confused. Anger and darkness crept in, threatening his previously strong and loving marriage. He began to feel useless and increasingly isolated. Tragically, he felt inadequate as a father, particularly because he couldn’t teach his young son to play sports. He previously prided himself on his communication skills and found the loss of his ability to engage in real-time, face-to-face conversation to be especially crushing. (Fortunately, while his voice was still reasonably strong, he started voice banking with a Scottish company to create a synthetic voice using cutting-edge technology that generated a customized voice sounding similar to his own, rather than a generic computerized voice.) Eventually, light begins to emerge. We read poignant vignettes where Gleason’s former NFL teammates teach his son to excel in athletics. (In 2011, these same colleagues ensured that Gleason was presented with a Superbowl ring after the Saints won the 2010 championship.) Readers will enjoy learning about Gleason’s unconventional thoughts on spirituality and religion as well as his insightful reflections on parenting. He comes to appreciate that parenting is about being present and providing unconditional love, not about teaching a little boy how to throw a ball or tackle the competition. His marriage once again becomes collaborative, strong, and loving, and the couple welcome a baby girl in 2018. Gleason found meaning and purpose in life’s struggles. The author established his foundation, Team Gleason, to raise awareness of ALS, to fund research that might produce a cure, and to improve the daily lives here and now of those afflicted with ALS through enhancing the availability of state-of-the-art assistive technology. He has raised countless millions of dollars in pursuit of these goals. In 2020, Gleason was awarded the Congressional Gold Medal, the government’s highest civilian honor, for his highly effective advocacy. He was the first NFL player to receive this honor, joining the ranks of such distinguished previous awardees as George Washington, Thomas Edison, and Mother Teresa. With the aid of his stalwart and devoted wife Michel and his dedicated care team, Gleason typically begins his day spending 2 h, while still in bed, doing meditation and mental training. Then he begins the arduous task of dealing with a wide array of physical exigencies that able-bodied persons do almost reflexively. He has been ventilator-dependent since 2014. With characteristic wit, Gleason quips that he has lived more than a decade past his prognosticated “expiration date.” As his body increasingly became a prison, Gleason learned to accept things that are out of his control, to treasure acceptance, love, and the power of the human spirit. He learned to transform suffering into strength. He learned how to live, in the present. This powerful book is not without a few shortcomings. The author’s liberal deployment of the F word, for example, may offend some sensibilities. Although the medical allusions are generally accurate, there are occasional errors, such as when the author refers to the cervical dilatation preceding his daughter’s birth as progressing from 8 to 10 inches, rather than centimeters. These criticisms, however, should not diminish the wisdom and courage manifested in the book’s pages. No doubt many anesthesiologists who read this book will reflect that the operating room team is not dissimilar to a professional football team. Each member is highly trained and obstinately determined to perform optimally. Everyone has interdependent roles that are critical to a successful outcome. Further, anesthesiologists who have had the challenging privilege of participating in perioperative management of patients with ALS know that success involves so much more than avoiding succinylcholine, maintaining hemodynamic stability, and minimizing the likelihood of respiratory complications. They know they are helping a vulnerable fellow human being, who is infinitely more than a pathology needing to be addressed. As Francis W. Peabody, M.D. (1881 to 1927), remarked almost a century ago, “One of the essential qualities of the clinician is interest in humanity, for the secret of the care of the patient is in caring for the patient.”2