Life Lessons
A Lesson in Resilience from My Terminally Ill Friend
The story of me, Kevin Swan, and his journey through ALS.
Kevin and I aren’t dating. But he did slide into my DMs. He said, “Hey what is up!”
I thought, “Wow, it’d be bad karma to ignore this one.” In his profile picture, he was proudly displayed in his full-body wheelchair, with a breathing tube in his neck. We started texting. Kevin is also a writer, which is remarkable because he can’t move his fingers. He lives just 30 minutes from me. We decided to meet.
Weeks later, I stood waiting on Kevin’s front porch. I’ll admit I felt a bit nervous. A decade ago, I’d volunteered as a swim coach for the Special Olympics. I’ve worked with differently-abled people. But I’d never been around anyone like Kevin. I didn’t want to say or do the wrong thing. I just wanted him to have fun hanging out.
Kevin has Lou Gehrig’s disease, also called ALS. It is a fatal, incurable disease that leaves people immobile. ALS patients typically live 2–5 years. Kevin is eight years in, but don’t let that fool you. Some live decades and he’s hellbent on being one of them.
ALS patients can feel everything. Yes, they get those itches they can’t scratch. They also have full cognition, so don’t assume they are brain dead or dumb. For unknown reasons, eyeballs are resistant to ALS’s wasting effects, hence the use of optic trackers to type.
As with most winters in Florida, it was hot and humid out. I rang their video doorbell and waited. I figured he and his wife might need a little extra time. A minute later, I tried again and nothing. Then, a full five minutes later, I was sweating, so I knocked on the door and there was instantly barking.
Seconds later, I heard a latch slide in the door. Then, I was surprised to see a handsome 20-something man standing in the doorway. Was this some weird trap? He smiled and said, “Hey, come on in.”
It was Josh, Kevin’s caregiver. We weaved through his dimly lit house to his dining area, and just before I turned the corner to see Kevin, I heard an automated voice boom, “Hey man! What’s up!”
Kevin was seated by the dining room table, in his large electronic chair with all manner of gear and buttons on it. It is a sort of mechanical throne, a Professor X type of machine, with a floating monitor and the sound of a breathing machine quietly pumping air.
I sat down across from Kevin. I knew I’d be doing most of the talking. Optic typing is a slow and methodical process. So I broke into some stories about my life and writing.
There’s an implicit stoicism in someone with ALS. They seem frozen in time, with their eyes open. Yet, as you face them talking, you know they are fully there. There is an unmistakable intelligence in Kevin’s eyes. They follow you as you talk. They are with you, and reciprocal, clearly processing all you are saying.
Kevin was a high-flying ad agency executive, working on Madison Avenue. In fact, when I asked him what he majored in, there was a short delay, before his robotic voice called out, “Marketing and blow.” Did I mention he is funny?
I later joked that I wanted to take him to 2001 Odyssey, a famous local strip club in Tampa, but the pandemic put a damper on that plan. His machine called out, “Hell yeah, man!”
As a funny aside, Stephen Hawking, who also had ALS, was a known regular at California strip clubs. Hawking also intentionally ran over the toes of people he didn’t like. Kevin is full of that same quiet vitality and defiant independence. At one point, as his caregiver adjusted him, his robotic voice called out, “Cmon bro. Do you want some of this? I’ll knock you out right now.” The jokes didn’t stop.
Above all, Kevin is a family man. He already had his condition when he met his lovely wife, Shaina. She talked about the uniqueness of going on dates with someone like Kevin. They made it work, as evidenced by their marriage, and subsequent daughter.
Life with a different velocity
Smaller pleasures are elevated when you spend more time “situated”. Kevin’s XM radio is one of his favorite toys. Classic rock played while I overshared, as I sometimes do, about my triumphs, failures, and awkward romances. Kevin interjected with well-timed jokes and questions.
Kevin speculated that his disability has heightened his thinking and writing. He isn’t the first. Beethoven famously wrote his greatest symphonies after losing his hearing. But it wasn’t without struggle and change. He strapped a metal rod to his piano and would bite it so that he could feel the vibrations of the notes in his bones. There was Franklin D. Roosevelt, who many historians insist was a much better president because he had polio.
Kevin has certainly shifted and honed his skills in new ways. Shaina said she walks by his room at night and his screen is often lit up, with him working on myriad things, writing down ideas and notes for projects. She has to pressure him to go to sleep.
She also told me a harrowing story of him waking up at 2 AM with a huge cockroach on his cheek. It took him several minutes just to turn on all his machines with his eyes, to wake her up to come to get the bug off. But hey, a stray cockroach never killed anyone.
Making sense of the experience
We had lunch and Kevin joked that “The beauty of this condition is that I don’t have to do dishes anymore.” We hung out for several more hours before I left.
I drove home in silence, lost in thought. There were no feelings of pity or sorrow or comparing my woes to his or anyone else’s. I felt strangely energized and inspired.
I was in awe of Kevin and Shaina’s approach to such a vicious adversary. They choose to stand and fight in the face of harrowing odds. Where others would succumb to the jaws of circumstance, they choose to live freely. And by doing so, they have already won.
In a narrower view of masculinity, society often pressures men to be tough and physically capable. We are the supposed rock and protector of those around us. In the premature loss of his physical capacities, Kevin drew strength from one void and filled many more. He offers his mind and love, and he offers them in abundance, perhaps in a way that no other man could.
Kevin isn’t isolated or in a lane apart from our own. The crashing of time will strip the strongest among us bare. Maybe, it is in those final moments, that we stand eye-to-eye with our truest selves, that our most difficult questions are finally answered.
The takeaway
Days later, I admittedly scrolled through some of Kevin’s Facebook photos. It was unlike any Facebook stalk I’d ever done. As I moved back in time, I saw the disease reversing itself. I saw glimmers of a half-smile, and eventually, both corners of his mouth rose, revealing a beaming white smile. His arms were moving. He was at charity events for ALS, being pushed in a sit-down bike. He was standing with support. He was walking.
He was skiing and exploring the outdoors, drinking wine with friends. He was clearly a very extroverted and happy man. And where this might invite sadness at the current state of being, it shouldn’t. He is still the same man, adapting to his situation, living well and true with those who matter.
The dreamer in me can’t help but imagine a future, with some medical breakthrough where that same progression of photos then reverses again. We again see his smile being revealed, him skiing and walking with his wife, him sitting at his daughter’s graduation, taking pictures as she walks the stage.
Yet even if that never comes to be, I know Kevin is ready for all in front of him. He is strong and loved and marching forward into whatever awaits. He will live as he always has. And we should do much of the same.
If you’d like to donate to ALS research and awareness, please donate to Kevin’s — A Life Story Foundation.