What I would’ve missed out on if I’d said no to life with a disability
My young friend's comment sparked reflection during a recent trip
“Thanks for inviting me on this trip,” my 9-year-old friend Forrest said to me last weekend. His parents were in the gas station convenience store, and we were alone in the car for a few minutes.
“Well, thank you for coming on this trip,” I replied. Honestly, I wasn’t sure how he’d do with a trip like this, so his polite and positive comment warmed my heart.
I work at a special nonprofit organization called We Carry Kevan (WCK), which provides a uniquely adaptive outdoor carrier backpack to help people with mobility-related disabilities go “off road,” where their wheelchairs cannot go. My job is to follow up and stay in touch with the people who buy or receive the WCK Backpack, to answer questions, provide assistance, refer to resources, celebrate wins, grieve losses, make connections, and build community.
Typically I do a lot of that work from my laptop or phone, but occasionally I take trips to visit our “backpack families,” so I can meet them in person, hear their stories, and offer encouragement.
A beautiful, if challenging, adventure
A few months ago, Forrest’s parents (who are good friends of mine and faithful supporters of WCK) asked if they could go on one of these trips with me, and if they could bring their son with them. I’ve never taken someone so young on a WCK trip, but I figured if his parents were there, it would be OK. They also urged me to “put him to work,” because they saw this as a service opportunity for him, not just a vacation. So I put him in charge of carrying the WCK Backpack, and he also quickly learned how to manage the retractable ratchet tie-down straps for my wheelchair in the rental van.
I was impressed with how well he did. He calmly tolerated the adult interactions, easily connected with the kids in the families, toted bags and boxes and suitcases when asked, and woke up crazy early without complaining. In fact, I think Forrest probably responded better than I did to some of the more stressful moments of our journey.
Traveling with a disability, such as my SMA, isn’t easy; it comes with complications and risks. No matter how light I try to pack, I still have to bring multiple bags to accommodate vital medical equipment that inevitably gets broken to some degree. I have to be transferred out of my wheelchair on an airplane, which is, at the least, awkward and uncomfortable. And it’s frustrating to repeatedly have to explain to strangers that, no, I really can’t raise my arms and legs for a full-body pat-down at airport security, and no, I really can’t just move myself from one seat to another.
At these times I feel so high-maintenance, helpless, and disabled, and I hate that. It makes me question everything about the trip and my life. Why am I doing this? Why am I here?
But then we get to our destination and I remember why we braved the complications, the risks, the discomfort, and the frustrations. It was all so we could give and receive enthusiastic hugs from a giggling little boy, eat tacos and pray with a grandma whose spirit needed to be refreshed, go for a stroll with a mom and her little girl around a park, listen for hours to a dad who needs to process his grief, and give a backpack to a family who desperately needs some quality time together.
I may not be able to stand or lift my arms, but I can sit with people and smile; I can relate and connect with what they’re experiencing; I can see them and listen to them and offer a little hope. And these are things I wouldn’t be able to do as well, or as fully, without my disability.
“Thanks for inviting me on this trip,” Forrest had said in the car, and I thanked him for coming.
“It’s not like I really had a choice, because my mom and dad made me,” he added bluntly. The abrupt shift in his attitude was a bit jarring to me, until he continued: “But if I did have a choice, I probably wouldn’t have taken it, and then I would have missed out on all of this.”
Wow, does that resonate! This disability and all the physical and emotional struggles that come with it is not the life, the journey I would have chosen for myself. But if I did have a choice, I might have said no, and I might have missed out on all of this: the joy and love and hope that I’ve found on this beautiful adventure.
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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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