Kyle Brown was given 6-18 months to live in July 2021. The accomplished triathlete was diagnosed with Amyotrophic Lateral Sclerosis (ALS) and has since gone on to qualify and compete at the Ironman 70.3 World Championships. Whether it’s facing a fatal illness or swimming in open water, Brown’s message is the same: don’t fear the bad things.
THEMAGIC5: If you could go back, what would you tell your younger self?
Kyle Brown: I would tell myself not to be shy. When I was younger, like in high school, I was very shy. It’s not going to matter what the kids think of you because usually our impression of what we assume people think about us is totally off. So, I would tell myself to put myself out there more and not be so afraid.
When did you realize fear was holding you back?
In my twenties, looking back on life. Looking back, say on bike rides, you remember the one when you got caught in the rain for two hours and your hands were frozen and couldn’t work the brakes and should’ve turned around earlier. Or the massive crash you were in. You don’t remember the perfect day when its 72F and you roll fifty miles and feel great; I don’t remember those. I remember the crazy experiences. In personal or in work, in general, I decided not to be afraid of bad things happening because all my best stories are from horrible things happening to me. And they’re funny now.
What would you say to someone who is letting fear hold them back?
Look back on life and what do you remember? What are the stories you tell your friends or your kids? It’s the wild experiences and at the moment, it’s scary, but after that moment and years of that memory, the knowledge you gain from it, you get so much more, you learn so much from those hard or bad experiences. It’s like training: there’s a moment of pain in an interval but what you carry from that is way more and lasts way longer.
How do you still hope when facing a terminal diagnosis?
Some people say, if you’re going to die why do you allow yourself to have hope, isn’t that going to be a letdown? I say no. We already know it’s going to be a letdown so why not have a journey along the way and help me or someone in the future.
My diagnosis allowed me to take a step back. I never realized how fortunate, lucky, or blessed I am. With these people, living where I do, this country, this state, the people I get to hang around every day, my job. I’m not wealthy by any means but I just feel like it couldn’t be any better. Taking a step backwards was to assess things and decide how I’m going to go on. We chose a certain path and we’ve gone full gas down that road.
What about the hard times?
You can laugh about this or cry about this. It’s a lot better to laugh. Like my wife and I were shopping for a carpet and the guy was saying, “Well, this carpet will last longer,” and I’m like I don’t give a shit, I’ll be dead in a year. I want the cheaper one. In general, I’m very happy and positive and joking but there’s also the side that people don’t see. The hard parts that my wife and I hide as my body deteriorates. You know, that’s hard on both of us. That part is hidden.
Usually, it’s a passing moment. Randomly, it can be eating you up but then, I say, I don’t have time to cry. I have too much shit to do.
Do you have any mentors in the ALS community?
It’s a rare situation to be in but Jon Blais. Although he has passed, his family continues with his legacy. I look up to him and the path that he created.
There is an ALS group called No More Excuses and it’s run a couple people. Michelle Lorenz is one of them. She doesn’t have ALS nor does anyone in her family, but she is an attorney and she is fighting every day to get accessibility to ALS drugs and information out to people. Because when you’re diagnosed, 99% of doctors can diagnose but they know nothing about treatment. But this ALS watchdog group gets information out to people.
Who do you look up to?
My wife. She works full-time, she has a full-time job of ALS research, also works a part time job, and manages me, keeping me alive.
What do people get wrong about you?
Some people think, when they talk to me on the phone, that I’m 91 and drunk, and sometimes I have a good time with that. When you talk this way, people think that it’s affecting you mentally—that you’re mentally challenged in a way—but your brain is 100%. But saying what’s in your brain is like trying to kick a soccer ball under water. You know the motion and how it should be, but it doesn’t work.
Rule breaker or rule follower?
Rule breaker. I think bending the rules is a good thing.
Pool or open water?
I’ve never been a strong swimmer, but I’ve come to enjoy it. I don’t love the pool, but I love open water swimming. There’s a little bit of fear involved as well. You know, sharks hundreds of feet deep beneath, drowning, those things. That keeps you on your toes.
What are you focusing on right now?
Just really absorbing life experiences, small and large. Dinner with the entire family, which is hard when you have older kids; time with my wife which is hard when we both work; bike ride. I enjoy being in the moment and I always try to soak that in whatever it is.