Drowsily and with great effort, I hoisted the top half of my body upright in the hotel bed. Before I drifted off, I groggily but sincerely asked my friend Sajid in the bed next to mine, “You ready for some real talk?”
He was working on his laptop, but he put his screen aside and looked at me. “Yeah,” he said, showing no trace of frustration at my interruption.
“Sometimes it’s hard to find a reason,” I admitted, “to want to wake up in the morning.”
I chuckled nervously to fill the awkward silence that followed. What did I expect? My statement was a bombshell.
He told me that it was awful I felt that way. We both went to sleep shortly afterward, as we needed to rest for rideATAXIA Philadelphia the next morning.
I was incredibly grateful to have my college friend with me at the hotel in Pennsylvania. I looked over at my wheelchair in the corner. I would need his help in the morning to transfer to it. I still have a hard time being OK with needing help, but if I were to choose anyone to be there for me that night, it’d be my friend Saj.
In December 2015, I received an email informing me that someone had made a generous donation for me to participate in rideATAXIA Dallas. It would be my first time to ride a recumbent trike. I was very touched when I recognized the donor. I knew Sajid as a friend of a friend when I attended grad school at Louisiana State University (LSU), but I don’t think we’d even had a one-to-one conversation. I emailed him to thank him for the donation and found out that he was living in Philadelphia where the annual FA symposium and rideATAXIA Philadelphia event are held. We talked about hanging out while I was there.
Flash forward two and a half years later, and we are here in a wheelchair-accessible hotel room on the weekend of our second annual ride.
We woke up early. When we got to the cycling route, Saj helped to transfer me onto a rented hand cycle. Then we hit the road, me on the recumbent trike and him on his road bike, following closely behind and helping me stop when I wasn’t quick enough on the brake. (I don’t have to maneuver the handbrake much when I practice in the near-zero elevation of Louisiana.)
We ended up making a wrong turn and going off course, so instead of 8 miles, we did 5.3 — but I wouldn’t change a thing.
Saj and I talked and laughed the entire ride and weekend. He made sure I was comfortable which is quite a task since I can be an ornery and hard-headed disabled guy who struggles to accept help. After the ride, we had dinner with his awesome and interesting girlfriend.
My favorite memory with Saj from the weekend is when we were at his apartment watching the LSU football game. He helped me into an armchair then got us each a beer. After I’d finished drinking, he asked if I wanted my armchair to recline. He made the chair lean back farther and farther. By the time I realized something wasn’t right, the chair had flipped backward, and I was lying on the floor. At first, Saj thought I’d hurt myself and that I was crying out in pain. However, he quickly realized that I was crying out loud with laughter. And like the awesome friend he is, before he helped me up from the floor, he took a video on his phone of me laughing uncontrollably.
The reality is that sometimes, with FA or with anything else, it is difficult to find a reason. When our daily activities get increasingly more difficult, it is tempting to want to give up.
If you want to give up, please don’t. Find a reason to keep going.
Surrounding myself with people who will go out of their way to make me comfortable helps me to keep going. People I can joke with, talk real with, and ultimately depend on. I encourage you to find that and never be far from it. Do whatever it takes just to stay alive.
Sajid is one of my reasons.
“My days, my years, my life has seen ups and downs, lights and darknesses. If I wrote only and continually of the ‘light’ and never mentioned the other, then as an artist I would be a liar.” –Charles Bukowski
If you or anyone you know is experiencing suicidal thoughts or needs someone to talk to, please call the National Suicide Prevention Line at 1-800-273-8255 or visit suicidepreventionlifeline.org.
Friedreich’s Ataxia News 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 another 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.
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