A Life Worth Living with Quadriplegia
Posted June 09, 2023.
In memory of Michael Hickson who passed away on June 11, 2020.
Michael Hickson lived with multiple disabilities. He suffered a sudden cardiac arrest while driving in 2017. A traumatic brain injury and a spinal cord injury resulted in quadriplegia. Cortical blindness followed soon after.
In 2020, Mr. Hickson tested positive for covid-19. He was transferred to a hospice which refused to provide him with potentially life-saving treatment. In a video recorded by his wife, a doctor said of Mr. Hickson “as of right now, his quality of life, he doesn’t have much of one.” His life as a person with quadriplegia and blindness was not worth trying to save.
To honor Mr. Hickson’s life, here are four people living, or have lived, with quadriplegia. Each illustrates a fulfilling life. Their successes share a common theme with Michael Hickson: people with quadriplegia or paralysis are always worthy of life. And because of this, they can redefine their purpose.
1. Christopher Reeve (1952 – 2004). Reflect on why and how you draw distance from your disability.
Mostly remembered as Superman, Christopher Reeve suffered an accident which shattered his first and second vertebrae. His spinal cord injury resulted in paralysis from his neck down. Reeve published two books, Still Me and Reflections on A New Life. In his writings, one lesson stood above all: he was still the same person after paralysis, yet paralysis also led to a new life. Reeve wrote, “Today, I am probably busier than I was before the accident. I have to juggle physical therapy, my responsibilities at the foundation and as vice-chairman of the National Organization on Disability, writing, producing, directing, family, friends, travel, and much more.”
There are two important aspects relating to paralysis and self-identity. Why to distance from a disability is important. How distance happens is equally important. A person can move away, hoping to return to normal, disconnecting self from body, and avoiding an identity as a person with disability; but a person can also move closer, transforming into someone new, accepting functioning capacity, and embracing an identity as a person with disability. What matters is the intent driving that distance.
You might have asked, “How can I live like this?” The immediate days after can feel chaotic for you, experiencing thoughts about accepting and overcoming disability. After suffering his injury, Reeve shared, “in response to my thoughts about ending my life, she [his wife] said that we should wait for at least two years…Asking me to wait was the perfect course of action. She was giving me room, the freedom to make a choice, yet knowing what the choice would be in time.” Consider how this question might change for you tomorrow, next week, next month, next year. Paralysis is a life-changing experience, but paralysis never becomes more than your humanity.
2. Stephen Hawking (1942 – 2018). You still have talents and potential.
Perhaps the most well-known person on this list, Stephen Hawking was a theoretical physicist diagnosed with amyotrophic lateral sclerosis (ALS), a neurodegenerative disease. He was diagnosed at 21 and given two years to live. As his condition progressed, he gradually loss control of his legs, arms, hands, and speech over the years. Yet he lived to be 76. His accomplishments were incredible considering how his talents and potential developed after being diagnosed. In My Brief History, Hawking wrote,
When I was twenty-one and contracted ALS, I felt it was very unfair. Why should this happen to me? At the time, I thought my life was over and that I would never realize the potential I felt I had. But now, fifty years later, I can be quietly satisfied with my life…. My disability has not been a serious handicap in my scientific work. In fact, in some ways I guess it has been an asset.
Disability didn’t take away Hawking’s talent or potential. Disability changed how his talent and potential could manifest. “My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit, as well as physically,” shared Hawkings in an interview. As an example, consider his use of a speech synthesizer to artificially create his speech,
I continued to get worse, and one of the symptoms of my progressing illness was prolonged choking fits…Using this system [speech synthesizer], I have written seven books and a number of scientific papers. I have also given a number of scientific and popular talks… One’s voice is very important. If you have slurred voice, people are likely to treat you as mentally deficient… by now I identify with the voice and it has become my trademark, so I won’t change it for a more natural-sounding voice unless all three synthesizers break.
Remember, adapting to your disability also means finding ways to use your talents and fulfill your potential. These are not mutually exclusive processes.
3. Brooke Ellison (1978 – present). Your existence has a greater impact.
Brooke Ellison is an American politician, motivational speaker, researcher, and associate professor. The first person with quadriplegia to graduate from Harvard University, she became paralyzed from her neck down after being hit by a car at the age of eleven. In 2002, she met Christopher Reeve who wanted to “tell the life story of someone who lived with circumstances similar to his own.” The documentary The Brooke Ellison Story premiered in 2004. She shares of Reeve’s impact,
When Chris passed away in 2004, he left the planet without getting to see the conclusion of the work he had started. Chris gave a face and voice not simply to spinal cord injury but also to the types of treatments that many people who live with spinal cord injury hope to see, and when he passed away it felt, for me, like I had lost a hero who was championing my cause in more than one way, a hero who did not get to see the culmination of some of the work he had started.
Ellison’s life illustrates how the lives of people with disabilities can be exponentially influential. She is influenced by others like her as she builds on their impact in the world. In her first public speech at Harvard University in June 2000, Ellison shares “As much as we would like to take credit for our own accomplishments, none of us would be here, have not been for the efforts and caring of those who helped us along the way. Our mutual dependence is so often misdiagnosed as self-reliance.” She echoed these words in her autobiography published last year, “There are problems to be addressed and challenges to be faced that not one of us can confront alone, no matter who we are or what our potential might be; there is a shared responsibility that we have for one another…”
Your existence means something to others affected by quadriplegia. Feelings of loneliness and inferiority emphasize how the world interacts with you as a person with a disability. But you also choose how you interact with the world, to challenge the greater narratives held by others with yours. Yes, you are seen as a person with a disability. But how else can the world see you? Brooke Ellison shared this messaged, “The parts of life that are difficult can teach you valuable lessons about who you are and the strength you have, and these can become inseparable from the vantage point from which the world is seen.”
4. Rocky Stoutenburgh (1987 – present). You are human because you are different.
Rocky “RockyNoHands” Stoutenburg is an American streamer and content creator. In 2006, he injured his thoracic vertebrae which resulted in paralysis from the neck down. He is 36 years old, having lived with quadriplegia for 17 years. His popularity continues to grow, signing with an esports organization and setting two Guinness World Records in 2020.
In competitive gaming, there are professional players who perform better than Stoutenburg, but his success doesn’t come only from performance. He is the first person with quadriplegia to sign with a professional esports organization. In a Forbes article, he shared, “During the past few years, Stoutenburg has gotten close to some other gamers who are in wheelchairs. They reach out to him on a nearly daily basis on social media, asking him for advice or reaching out just to share their stories.” Adrian Montgomery, owner of the esports organization, shared, “Irrespective of anything else, he’s a high-quality gamer… He’s totally inspirational. These guys just think he’s a special, special human being, which he is.”
What brings Stoutenburg success? This is partly explained by his identity: because he is seen as a good player and because he is seen as different. In the gaming world, it starts with his identity as a gamer, an identity he also acquired, but earned.
Multiculturalism indicates that while a person holds various identities, their importance is contextual. For instance, a person’s race, nationality, age, or profession, holds more relative importance at any given time. Regardless of how others identified someone, that someone still has a choice of how to self-identify.
When you wish to be more like others, you are overemphasizing you’re different. This is different than embracing your “normal” over others normality. This also overlooks how different identities can coexist within a person.
Every human has a set of identities not embodied by everyone. Humanity is embracing this reality. And because it is humane to be different, it is pointless to divide what brings us together.
Quadriplegia and paralysis have devastating effects. They completely reshape a sense of living. But the emphasis always remains on living, not suffering or surviving. Finding meaning in misfortunes means there’s an ultimate purpose in staying alive. People’s stories are worth much more, and they center on why and how people choose to live. People living with quadriplegia choose to live. Michael Hickson made this choice as well.
