PDF Summary:A Life Impossible, by Steve Gleason

A Life Impossible chronicles Steve Gleason's journey as an athlete whose promising football career with the New Orleans Saints was cut short by a diagnosis of ALS (amyotrophic lateral sclerosis) at age 34. Faced with the terminal illness's physical and emotional toll, Gleason committed himself to living a meaningful life.

The book follows his unwavering advocacy for those with ALS through Team Gleason, his exploration of spirituality and meditation in coping with adversity, and his steadfast determination to remain an active father despite his body's declining abilities. Through his foundation, writing, and parenting, Gleason seeks to impart wisdom while forging an enduring legacy.

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Gleason was resolute in forging an identity that transcended the label of a person diagnosed with ALS. Guided by the principles ingrained during his Jesuit education, he adopted the belief that true self-help comes from aiding others, which culminated in the creation of the Team Gleason foundation, committed to assisting and advocating for those suffering from ALS. Team Gleason has become a beacon of support, providing essential aid and resources, funding advancements in technology, and orchestrating opportunities that significantly improve the lives of those afflicted by ALS. Steve Gleason found that his work with the foundation revitalized his sense of purpose and, in his view, sustained his existence.

Steve Gleason was instrumental in the creation of legislation and the provision of funds to advance research and treatment for a neurodegenerative disorder known as ALS.

Steve Gleason's initiatives had a reach that went further than just the activities of his foundation. He tirelessly advocated for changes in policy and an increase in funding to accelerate advancements in the study of Amyotrophic Lateral Sclerosis, collaborating with experts from the scientific, political, and technological communities. His efforts were crucial in the adoption of an important law that ensured the ongoing supply of essential communication devices for those who rely on them.

Steve Gleason made efforts to share his story and inspire others through various channels of communication.

This section describes how Gleason chose to use the high profile he received from his iconic play to increase awareness for ALS, and to inspire others facing life's challenges.

Gleason played a pivotal role in producing a documentary that chronicles his struggle against a condition known as amyotrophic lateral sclerosis.

Gleason recognized the potent influence that the art of storytelling might wield. He employed a range of techniques to convey his narrative and motivate people, culminating in the creation of "Gleason," a poignant movie that presented a candid perspective on the severe challenges posed by this debilitating neurological disorder, and simultaneously showcased his determination, affection, and dedication to wholeheartedly living life. The film's debut at the Sundance Film Festival led to widespread acclaim, subsequently casting an international light on the message and the efforts of Team Gleason. He saw the film as a chance to transform his personal challenges into a source of compassion for those dealing with sickness, hardship, or sorrow.

Steve Gleason wrote this book to establish a lasting legacy and to share the important lessons he has learned.

Steve Gleason authored "A Life Impossible" with the intention of leaving a lasting impact, sharing the wisdom, important teachings, and extensive understanding he acquired throughout his extended struggle with a severe neurological condition. The book was written to provide sincere and actionable advice for individuals facing personal difficulties, demonstrating that amidst adversity, suffering, and the contemplation of mortality, one can discover resilience, persistence, and affection.

Context

• ALS, also known as Amyotrophic Lateral Sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, leading to muscle weakness, paralysis, and ultimately respiratory failure. It is a debilitating condition with no known cure, causing difficulties in voluntary muscle movement and impacting various aspects of daily life. ALS is commonly referred to as Lou Gehrig's disease, named after the famous baseball player who was diagnosed with it in the 1930s. The disease typically progresses rapidly, and individuals with ALS may require various forms of support and care as it advances.
• Jesuit education is a form of schooling based on the principles and teachings of the Society of Jesus, a Catholic religious order. It emphasizes academic excellence, moral development, and service to others. Jesuit education aims to cultivate well-rounded individuals who are intellectually competent, open to growth, religious, loving, and committed to justice. The educational approach includes a focus on critical thinking, reflection, and the development of a strong moral compass.
• The Sundance Film Festival is an annual event held in Utah that showcases independent films from American and international filmmakers. It is known for premiering groundbreaking films that often go on to receive critical acclaim and awards, including Oscars. The festival features various competitive and non-competitive sections for different types of films, providing a platform for emerging talent and innovative storytelling. Sundance plays a significant role in promoting independent cinema and fostering creativity within the film industry.

The way ALS affected Gleason, his relatives, and their interpersonal connections.

The onset of ALS severely impacted Gleason's emotional well-being and simultaneously took a toll on his physical health, resulting in diminished capabilities and independence.

This section details the emotional anguish and physical decline that accompanies ALS. The book delves thoroughly into the author's persistent and unyielding difficulties.

Gleason confronted the gradual decline of essential functions, including the capacity to speak, to move, and to breathe without assistance.

Gleason openly shares the intense mental and physical toll of ALS, describing how distressingly his body's functionality diminishes over time. He documents the gradual deterioration of his once-strong physique, starting with the diminishing power in his right hand and leg, which eventually led to a total loss of movement, leaving him unable to stand, walk, talk, or breathe on his own. The disease progressively diminished his sense of self, taking from him the vitality and freedom he cherished.

The responsibility of caregiving and the heartache of witnessing his decline strained Steve Gleason's connections with relatives and companions.

The weight of this loss was not carried by Gleason alone. Gray, Steve's parents, and their supportive network including Blair, Kyle, Liz, and Stephanie, grieved the loss of future moments they would never share with the Steve Gleason they held dear. Steve Gleason elaborates on the unique anguish associated with ALS, a condition in which the mind stays acute and conscious, filled with desires and understandings, while the body succumbs to paralysis. Witnessing the decline of a loved one brings about a distinct type of sorrow. Their essence has disappeared, yet they persist in existence. Additionally, he conveys the belief that witnessing the decline due to this neurodegenerative condition can be more distressing for loved ones than it is for the individuals directly suffering from it. He admits to feeling envious of Michel's abilities and is remorseful for having demanded so much of her time and that of the caregiving team. The ailment is comparable to approaching the end of one's existence without succumbing to death.

Steve Gleason persistently upheld his family duties despite the challenges presented by amyotrophic lateral sclerosis.

The book delves into how the author steadfastly upheld his family ties and met his responsibilities as a partner and parent, even when faced with formidable obstacles.

Gleason remained an active participant in his children's lives, striving to forge enduring memories while contending with his bodily constraints.

Gleason employs cutting-edge technology and assistance systems that allow him to continue being an influential presence in the lives of his children, Rivers and Gray. He writes with fervor about his dedication to forging a deep bond with his children, imparting wisdom and support, expressing his affection, and guaranteeing his active participation in their growth, despite the unyielding physical limitations and challenges. Gleason candidly acknowledges his errors, emphasizing the challenges inherent in nurturing children within an unconventional family dynamic.

Steve Gleason's relationship with Michel sometimes faced challenges, but it grew stronger as they dedicated themselves to open communication and understanding each other.

Steve's relationship with Michel underwent significant trials. Michel grappled with significant emotional hurdles as she juggled her husband's care and their young son's upbringing, being his unwavering source of strength for a long time. The couple grappled with emotions of resentment, seclusion, and irritation, which grew stronger as they endeavored to stay loyal to each other amidst difficulties in maintaining their physical and emotional connection, all while managing the duties of caring for his well-being. They engage in a candid discussion about the trauma they had previously experienced. Their bond was significantly strengthened by this honesty and shared empathy, especially when faced with difficult choices.

Practical Tips

• You can foster resilience in the face of adversity by journaling your emotional journey, focusing on the changes you experience and how you adapt to them. This practice can help you process emotions and track your personal growth, similar to how someone might cope with a progressive illness. For example, write down your feelings and coping mechanisms when facing a challenging situation, and reflect on how you've managed to overcome or adapt to it.
• Develop a non-verbal communication toolkit for times when words fail, which can include picture cards, apps that convert text to speech, or even simple hand signals. This can be particularly useful in situations where you or someone you know is unable to speak, whether due to a temporary condition like laryngitis or a more permanent one. For instance, create a set of cards with common phrases or needs that can be pointed to during times when speaking isn't an option.
• Strengthen your relationships through regular, scheduled check-ins with friends and family, where you can discuss not just the joys but also the challenges of your lives. This can help prevent the strain that caregiving or any form of dependency might cause. Set up a monthly coffee date or video call where everyone gets a chance to share and support each other, ensuring that the lines of communication remain open and strong.

Steve Gleason's advocacy, spiritual growth, and his involvement in parenting.

Steve Gleason has been committed to improving the lives of those affected by ALS, making substantial contributions via his foundation, Team Gleason.

This segment of the story showcases the unwavering commitment of the author to the group associated with Gleason. Steve Gleason articulates his gratitude for the remarkable support Team Gleason has received and communicates the group's goal to transform traditional methods of tackling ALS.

The foundation established by Gleason provided crucial assistance and tailored resources to those fighting ALS.

Gleason explores the evolution and maturation of Team Gleason. This compassionate foundation provides crucial assistance, such as resources for assistive technology, guidance on healthcare, and opportunities for personal growth via Team Gleason Adventures, which arranges excursions to Machu Picchu in Peru, Denali National Park in Alaska, and orchestrates group events along the waterways of Montana for those affected by ALS. Steve Gleason expresses his profound gratitude to the supporters of Team Gleason and commends the commitment of experts in fields like speech therapy, occupational therapy, and assistive technology for their unwavering support to people across the globe affected by ALS.

Steve Gleason played a pivotal role in the creation of important legislation that ensured access to speech-generating devices.

Team Gleason is at the forefront of expanding access to communication aid devices, offering a wider selection for those impacted by ALS and moving from traditional speech-generating devices to advanced systems that monitor eye movement, which is crucial for Gleason. Gleason was disheartened to learn that upon being diagnosed, 95% would rather die than live with ALS and choose a tracheostomy, largely because they felt that being unable to communicate meant losing their identity. He talks about the challenging path that led to the establishment of an important statute, which guarantees that people with disabilities have access to communication aids through Medicare, a piece of legislation that is recognized as the Steve Gleason Act. The bill received its signature in 2015, during a period marked by frequent conflicts in Congress. The law served as a strong testament to Gleason's ability to bring people together.

Steve Gleason embarked on a path toward spiritual and philosophical enlightenment, characterized by his participation in various meditation practices.

This section reveals some of Gleason's spiritual journey, and his commitment to exploration. The author candidly explores the challenges and benefits that come with pursuing a deeper comprehension of the significance of one's life, which is occasionally considered to be without meaning.

Through the disciplines of meditation and mindfulness, Gleason found solace and resilience, which brought him to a deep understanding of how the aspects of life are interlinked and the notion of a unified whole.

Gleason openly addresses the importance of cultivating spiritual and philosophical beliefs, especially when confronted with a medical condition that could shorten one's life. The author highly regards the exploration of various spiritual and contemplative traditions, gleaning deep and practical wisdom from guides like Viktor Frankl, who endured the horrors of a concentration camp and authored "Man's Quest for Purpose"; Eric Greitens, sharing his experiences as a Navy SEAL in his book "Resilience"; Yuval Noah Harari, the mind behind "21 Lessons for the 21st Century"; and Sam Harris, the developer of a meditation app called "the wake." Steve Gleason's works reveal his deep commitment to exploring every avenue that contributes to a deeper self-awareness, which he uses to deepen his relationships, love, and happiness.

As Gleason battled ALS, his perspective on life and death evolved, leading him to a profound understanding of the importance of facing adversities.

Prior to his diagnosis, Gleason talks about his relationship with his father, a devout Christian who insisted that Gleason adopt his beliefs. After receiving his diagnosis, he conveyed the terror, sorrow, and hopelessness tied to the forfeiture of his envisioned future, feeling remorse and culpability for his financial blunders, and he also grappled with doubts concerning his religious beliefs. Gleason recounts his transition from a rigid religious upbringing to a secular spiritual perspective, embracing the challenges of existence and embarking on a path marked by love, forgiveness, and compassion, while also recognizing the finality of death as the ultimate passage. Throughout everything, his curiosity persisted. His deep admiration for the formidable power of the natural world is intertwined with an unwavering commitment to assist others, all founded on a cornerstone of gratitude that is essential to his life-changing odyssey.

Steve Gleason's unwavering commitment to being a father shone through in his determination to set an outstanding example for his offspring, Rivers and Gray.

This part of the story is frequently regarded as the narrative's high point, encapsulating what is widely viewed as the writer's most significant input.

Gleason continued to engage with his children with full attention, despite the limitations his health imposed.

Steve Gleason continues to be an extraordinary father, all while managing the challenges that come with living with ALS. He discusses the challenges he encountered as his speech declined, impeding his communication with his children. Gleason credits the close relationship with his child to the shared dedication of his caregivers, which includes Michel, who have fostered the principles of patience and attentive listening. Steve Gleason's writings reveal both his joy and the struggles he faces as he strives to remain actively involved in his children's lives. He voices unease about the diminishing state of his physical abilities, which once enabled him to partake in activities like surfing lessons and wilderness adventures, or to play toss with his companions. Gleason harbors concerns that his son Rivers might be drawn to football out of a sense of obligation, and he deeply hopes that if his son decides to play, it will be driven by a genuine love for the game.

Gleason imparted a treasure trove of knowledge and love to his offspring by creating a collection of recorded communications and written notes.

Gleason narrates the process of compiling his extensive series of video diaries, known as "300 Seconds," which includes stories and advice for his children. He also talks about his thorough record-keeping and the beginning of his journey as an author, a choice driven by his aspiration to create a lasting connection with Rivers and Gray, imparting the knowledge and resilience he has accumulated over his lifetime.

Practical Tips

• You can foster resilience in the face of personal challenges by starting a daily journaling practice focused on gratitude and reflection. By writing down three things you're grateful for each day and reflecting on how you've overcome past adversities, you'll cultivate a mindset similar to someone who finds strength in difficult circumstances. For example, if you're dealing with a stressful work project, journaling about a past project where you succeeded despite obstacles can remind you of your resilience.
• Create a legacy project for your loved ones by recording video messages or writing letters for future milestones. This can be as simple as recording a heartfelt video on your phone for your child's future birthdays or writing letters to be opened at significant life events. If you're a parent, you might record a video sharing life advice for your child's 18th birthday, ensuring your wisdom is passed on regardless of what the future holds.
• Integrate mindfulness into your daily routine to enhance your sense of interconnectedness with the world. Start with a five-minute meditation each morning, focusing on your breath and the sensations in your body. As you become more comfortable, you can expand this practice to include mindful walks, where you pay close attention to the sights, sounds, and smells around you, fostering a deeper appreciation for the present moment and the world you're a part of.