My Labor Day Weekend Was Action-packed and Challenging

My Labor Day Weekend Was Action-packed and Challenging

Refined By Fire Ryan Berhar

In my last column, “Meticulous or Ridiculous?”, I mentioned that I was traveling to Eugene for the Oregon football home opener. It’s a trip I’m used to because I’ve made it seven years in a row. What I didn’t mention was that I was also going to an IndyCar race in Portland the next day.

I can honestly say that Labor Day weekend was the craziest of my life. It was fun, but it also was too much for me to handle physically.

My dad, grandma, brother, and cousin went on the trip. We left home around noon on Saturday for the two-hour drive to Eugene to catch a 5 p.m. game. As always, the game was awesome. The Ducks had a shaky start, finding themselves in an early 10-0 hole versus Bowling Green. But we ended up winning 58-24.

(Courtesy of Ryan Berhar)

After the game, at about 9 p.m., we were back on the road headed for Portland. This two-and-a-half hour drive was the first time on the trip that my stamina nose-dived. I felt weak. Very weak. I’m not entirely sure why this happened, but my guess is dehydration combined with the game wearing me out.

While I don’t yell too much at games, I have to speak as loudly as possible to have a chance at communicating with my family. This tires me out and irritates my throat. As soon as I hydrated, I felt better.

The next morning, we were VIP guests at an IndyCar race. The event had its pros and cons. The upside was that I got to meet former IndyCar driver and current team owner Sam Schmidt.

An accident in 2000 left Sam a quadriplegic, prompting him to establish the Sam Schmidt Paralysis Foundation, later renamed Conquer Paralysis Now. Sam put some of the proceeds from VIP ticket sales toward funding my JACO robotic arm. It was a privilege to meet one of my JACO donors and demonstrate it for him. Amazingly, he can still drive a beautiful Corvette by using head movement and sip-and-puff technology. He’s a great and inspiring man.

(Courtesy of Ryan Berhar)

The downside — which I now realize is ironic, considering Sam’s condition — was that the Portland International Raceway isn’t the most wheelchair-friendly place in the world. The VIP experience occurred inside the track, and the only wheelchair-accessible exit is by crossing the track itself, which is impossible during a race. I also had an überbumpy ride over the infield grass, which I had to take slowly to keep my head steady and my control hand in position.

All of this meant that my van — aka my bathroom — and I were separated during those two hours. Eventually, despite being surrounded by race cars, I had to pee like a racehorse, and I couldn’t find any place in the facility that would allow me to do so privately.

Like the day before, I was in a situation in which I chose to become dehydrated because I had no convenient way to void. This caused another round of depleted stamina like the one I referred to earlier. After about an hour, I finally resorted to lying on a couch inside a semi-closed Maserati tent and voiding there. I admire those in the SMA community who manage to embrace their abnormalities, but I cling to normalcy for all it’s worth. I wanted to have the basic privilege of relieving myself in private, but my stubbornness caused me unnecessary suffering temporarily.

Overall, Labor Day weekend was a fun, memorable time. I’m glad I did it, but I wish I would’ve done things differently. I still need to learn to pace myself better and be willing to improvise.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

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