Finding Reasons to Stay Alive – Friedreich’s Ataxia News

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.

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