I’m Learning the Balance Between Giving and Receiving

“This isn’t a good start to the trip,” I thought while trying not to topple to the floor. I’d missed my wheelchair seat while trying to transfer into it.

I was at the Lafayette Regional Airport in Louisiana, and the only bathroom beyond the security checkpoint wasn’t even close to being wheelchair-accessible. In fact, my wheelchair wouldn’t even fit inside the handicap stall, so I left it outside the open stall door. I stood and turned 180 degrees onto the toilet seat. And I made it. It was a little victory.

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However, I soon realized that transferring back to my wheelchair wouldn’t be quite as easy. I found myself in limbo between being safely seated and ending up on the nasty floor of a public restroom. I should have called for help at that point, but I am foolishly headstrong.

So, I remained in that position, willing my broken body to stay upright as I slowly edged myself to a secure position on my wheelchair. Then, miraculously, little by little I made it back onto the wheelchair seat and was able to leave the bathroom. I arrived at my departure gate just as the flight was boarding.

Damon, an MMA fighter who also is my personal trainer, was waiting for me. We headed down the tarmac, and when we reached the plane, he lifted me from my wheelchair and transferred me to my seat. It felt a little awkward, but having a good friend transfer me was infinitely better than using one of those dreaded aisle chairs.

“That wasn’t as bad as I thought,” Damon said as he plunked down into the seat next to me. I didn’t know if that statement was true, or if he was just being headstrong like me. It was probably a little of both.

I was glad Damon was there. Having a travel companion on the trip helped to set me at ease.

About a month ago, I submitted a column I’d written about a college trip to the Grand Canyon to a storytelling competition. I talked about all of the support I’ve given and received while living with Friedreich’s ataxia (FA). I’m incredibly blessed to have people in my life like my college friends, Damon, and others who support me in many ways. Yet I hope I can support others, too, rather than always being the one who is catered to. I submitted that story because I was both the recipient of amazing support and a giver of support to others.

Reata Pharmaceuticals, which sponsored the contest, selected my story as the winner. Then, the company arranged for a travel companion and me to fly halfway across the country to turn my story into a short video that premieres at rideATAXIA Dallas on Nov. 6.

I depended on Damon a lot during this trip. I also was able to take him to the Grand Canyon for the first time. Allan, the videographer from One:Eight Productions, and his assistant on this shoot, James, of Beastman Productions, were so professional and kind, and we became fast friends.

From left, Allan, James, Matt, and Damon take a break between shoots at the Grand Canyon.

On the final flight back home, I reflected on how incredible the trip had been. I wouldn’t have had such a great time without humbling myself enough to ask others for support, and in turn, supporting others in the small ways that I can. I’m learning that small doesn’t mean insignificant.

Part of me will always be that headstrong guy who refuses to call for help in the bathroom until I have no other choice. But that isn’t the entirety of me. I’m trying to also recognize how much I can support others.

And that definitely matters.

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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.The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.