It was the summer of 2012. Kyle had been diagnosed with ALS for about 8 months. Right from the second of his diagnosis he chose to embrace as many activities and events as he possibly could. He deeply knew the importance of the situation so he took it upon himself to arrange groups of people to do many amazing things together. This pattern would carry-on for the years to come. But in this summer, at this time, Kyle had accepted the offer from a couple of close friends to stay in their cabin just off the lake in beautiful Invermere, British Columbia.
At this point he had now fully lost the use of his hands and almost the complete use of his arms as well. Only a small amount of movement was still left in his shoulders.
ALS works like this - It's a fatal neurodegenerative disease that attacks the relationship that your brain has with your nervous system and your muscles groups. So piece by piece his body was shutting down. First his hands then his arms and shoulders. Then ultimately his legs and then the rest of his body.
Each time a new muscle system would begin to shut down, there would be a very painful sporadic cramping that would happen as those muscles would start on their way to atrophy. His muscles would randomly lock up in a tight cramp for several seconds at a time and then randomly release. This was all day every day until those muscles would begin to eventually not respond at all. This had already happened to his hands and at this point was still happening regularly in his arms - but not yet his legs.
Seeing that we were out at the lake and Kyle's legs were still completely functional, he didn't see much of a reason not to go full out with everything we were doing.
On the other hand, I was getting used to doing more for Kyle because of the tiny tasks all over the place that he could no longer do without the use of his hands. I had spent several months by this point prepping mentally to be a caregiver to him and training my brain to have his highest interests in mind. On this trip, although I wanted to go full out, I had two internal dialogues simultaneously running.
One inner dialogue was to goof around, be an idiot and have as much fun as possible…
…but the other was to keep strongly in mind that I was there to help Kyle and be responsible.
These two feelings are quite different because to goof around with Kyle was almost the opposite of being 'responsible'.
The plan for the weekend was to rent some a couple of Sea-doos for everyone and hit the lake. Up until that moment I hadn’t really thought of the logistics of this type of activity given that Kyle couldn’t move his arms or hands. Without hesitation he rushed excitingly into it and said that he and I would just go together. So we put on our life jackets and I had Kyle get on first so I could push the Sea-doo into the water. Once I jumped on, I did the only thing I figured I could. I sat behind Kyle, then wrapped my arms around his torso while holding the handle bars. Even though he was in between my arms and I was holding his torso tightly with my elbows, I couldn’t help but get nervous immediately with how sketchy this all felt.
I slowly started to apply the gas, in the most hesitant, moderate and responsible way I could. I kept thinking "What if Kyle won't be able to swim? What if he falls off?". I mean, to be honest, crashing and falling off was pretty much always the goal with him and I and this type of thing.
We slowly sped up and Kyle waited only a minute or two before saying “hit it dude! Lets go!”.
It was pretty nerve racking, not only because I thought we might be doing something dangerous but also because I was keeping my hesitance/nervousness to myself. I didn’t want Kyle to feel bad about the potential seriousness of the situation, instead I wanted him to somehow forget about everything even for an afternoon and just have fun. I was being relatively quiet as we drove out into the lake.
He almost immediately yells to me “See those waves? Speed up and hit 'em head on!”
We slowly go up and over a few small waves - but we were going so slow that it honestly wasn't fun at all.
He waits for a second and says “well... that certainly sucked. Lets just pin it and see how fast we can go on this flat section!”
I slightly speed up but continue to be hesitant. This continues for about 2 minutes on the flat water before Kyle out of nowhere starts yelling...
“STOP! STOP! Right now! My legs are cramping up. Stop!”
I immediately slow down as fast as I could.
He yells “Let go of the handles and get your arms away from me!!”
So I do.
And as fast as he possibly can, he launches himself off the seat and into the water - head first with his arms still at his sides. I was completely stunned for a split second while my heart jumped out of my chest. Before I could go in after him his head came up out of the water with a huge stupid smile on his face. He looked at me right square in the eyes while safely bobbing in the water with his lifejacket...
“Why don't you grow a set and hit the gas already! Its fine! We're here to have fun so stop worrying so much and let's frickin do this!!”
The day completely changed from that point forward. As Kyle would say "We had a phenomenal time".
Today, the day after saying goodbye to Kyle, I’d choose to remember his hilarious line of wisdom as a metaphor for life.
Thanks for everything Ky. I'll miss you.
Update:
I was asked to present a talk in the Pecha Kucha presentation format roughly a year after Kyle passed. I used this blog post as inspiration for the talk and it was one of the most meaningful talks I’ve ever given.
20 slides / 20 seconds per slide.
The theme was “Less”