How to Grab Life by The Horns — Courtesy of Someone Who’s Completely Paralyzed

4 tools that help me live a truly happy life

Kevin Swan
Jan 19 · 6 min read
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Photo by Pascal van de Vendel on Unsplash

Imagine waking up in the middle of the night to the strange feeling of something tickling your neck. Naturally, your reaction would be to touch your face to investigate the foreign feeling. But what if you were unable to move a muscle, your body completely restrained? Then you realize that you’re unable to speak, the mysterious nuisance turns into a full-fledged nightmare as you see a cockroach walking across your right cheek!

It sounds like a Stephen King story, right? Unfortunately, it’s not. It’s my life. Thanks to ALS, I’m completely paralyzed except for my toes, unable to speak, and I breathe through a ventilator. The cockroach nightmare actually happened last year when we moved into a newly built “luxury” apartment.

What if I told you that that wasn’t in the top five scary or challenging moments of that week?

The average life expectancy of an ALS patient is only 2–5 years. I’m into year nine. Am I an outlier? Am I ridiculously mentally strong? Yes and yes! My life might sound tragic to most, but I fucking love it. Here’s my secrets to defying medical science and living with purpose, on purpose.

Confidence

This is not something usually found at the top of self-help lists, but I truly believe that it’s the secret ingredient to overcoming adversity. I’m talking about real, authentic confidence. None of that off-brand, store-bought, fake stuff.

When I was diagnosed with ALS in 2012, I was pissed. I was 30-years old, had just moved to Chicago, and started at a tech startup. But I never wasted time going down the “why me,” rabbit hole. It would have been wasted energy. And with a vicious disease attacking my body, I didn’t have an ounce of energy to waste.

Without a healthy amount of self-confidence, I would have been crushed by the weight of a terminal diagnosis. After all, self-confidence is just self-belief in the face of a challenge. I took two days off from work and then I genuinely started to fight for my life and I hate to lose.

I simply refused to let the disease define my life. Six weeks after the diagnosis, I created A Life Story Foundation because I scoffed at the idea of dying from a disease that no one’s heard of before. My confidence drove the decision to start a nonprofit, despite having zero knowledge of how to actually do it. The organization has since raised almost $2 million for awareness and research.

Crowdsource

This was a big buzz word in the business world a decade ago, but it’s a strategy that I can’t live without. Literally. As you might imagine, being confined to a 250 lb power wheelchair and needing eye gaze technology to communicate requires a team of people.

My life is hard. But it’s full of incredible people. I need help from someone for everything from scratching my nose to using the restroom. I ask for hundreds of things every single day.

Move my head, please.

Smoothie, please.

Have to pee.

Those are phrases that are saved and on repeat. But that’s the obvious and surface-level type of crowdsourcing. It requires a lot of mental strength and a shit ton of patience, but it’s not the most important lesson when it comes to allowing others to help.

I have the most amazing wife on the planet. We live near my very supportive family. I have two full-time caregivers that not only take care of me, but are incredible with our 3-year old daughter. The crowdsourcing that is a key to my life’s fullness is making the conscious decision to not keep every fiber of anxiety or fear inside.

It’s because of my team that I don’t worry about every tiny little detail of having a terminal disease. Can you imagine if I did? I would never get anything done.

Is my ventilator charged?

Did I get the right dose of medication?

Is my wheelchair charged?

The power of balancing the daily responsibilities of being a husband and father is a choice. I choose to let the trusted tribe members share in the weight-bearing life of a terminal disease. It was not easy and it definitely didn’t happen overnight, but it has been a tool that I use on the regular.

Sense of humor

The idea that being funny or being able to laugh appears to have nothing to do with mental strength on the surface. After all, no one ever says, “ya know, Winston Churchill was supposed to be quite the comedian.” But for me, it’s an essential part of my DNA.

Yes, we are nearly a year into a global pandemic and we still have an ego maniac in White House. But the ability and, more importantly, the choice to laugh as often as possible has never been more necessary.

I am no longer physically able to laugh out loud (cruel, I know) and my comedic timing is a little delayed at times due to the fact that I have to type every single word I want to say, but my sense of humor is still very much alive and kicking. I have a few go-to pre-saved one-liners that can always be used in a pinch.

That escalated quickly.

That’s what she said.

Bazinga!

Faith

I know it’s not a sexy buzz word, but damn, it’s important. I was not raised with a strong religious belief system in place. I was part of the second largest group of Catholicism, behind Roman Catholic. I was a Lapsed Catholic.

My wife and I both converted to Judaism last year and we’ve been thrilled with the warm embrace of the community. That has been my driving force of faith. I’m certain that faith is not limited to organized religions. It’s simply the choice to believe in something bigger than yourself.

Long before I converted, I remember feeling comfort in knowing that I got ALS for a reason. I thought and still feel like that reason is because I can handle it. There’s that confidence again.

I don’t care if you worship Jesus, Jo-Boo, or a miniature grass skirt-wearing hula dancer stuck to your dashboard! Whoever or whatever it is, believe the shit out of it. Relinquishing the weight of the world to a higher power will set you free.

The common thread to these four lessons is choice. We always have a choice.

Choose to be enriched in genuine confidence to overcome anything.

Choose to share the weight of the good and bad that life presents every day.

Choose to never give up the chance to laugh. No matter what!

Choose the power of acknowledging that despite what your mother says, you are not the center of the universe.

If you’re wondering how my cockroach nightmare ended… I had to type out, BUG ON FACE, one letter at a time as the cockroach tiptoed across my chin. I stared at the speak button so it was on repeat. After the third time, my wife realized what was happening. She flew out of bed to the light switch.

Then somehow she got to my side before the lights were on and swiped the intruder off my face. It landed across the room. At which time, my hero, my wife, who was as naked as a jaybird, beat the snot out the cockroach with a Cubs slipper.

We now laugh about this story every time it’s repeated.

Remember, there’s always a choice.

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