Gaining friends and independence while living with SMA
This is Eli Rangel’s story:
Picture this: Two teens sitting in the back of high school English class, playing Go Fish, while the teacher gives his lecture. That’s how my friendship began with my best friend, Tyler Dukes. Like many boys that age, we’d talk about cars, video games, and girls we said we’d ask out but never did.
Sure, Tyler had spinal muscular atrophy (SMA). But I never saw Tyler as anything but a guy who needed help with some things in life. For many years I didn’t even know what type of SMA he had. It didn’t matter to me, and it still doesn’t. He’s my best friend. What did it matter what disease or disease type he has?
With time, and some maturity, that changed. I’m more interested now, because of the treatments available, and how they’ve helped him and many others in the community I’m part of now. But it didn’t start that way.
Back then, we’d just do crazy things any young person would do — go to college parties, bars, concerts, games. We went on road trips and had endless meetups with friends.
Between the two of us, we always figured out a way to make anything accessible. Bar doesn’t have a ramp? That’s OK, let me get a couple of guys and we’ll lift you, wheelchair and all. Need to get through a crowd quickly? OK, I’ll hop on the back of the chair and yell at people to move over.
Eventually, after living together three times and being his caretaker for almost 10 years, the adventures became more about errands and family gatherings, how to get to work or the dentist, and how to get him to a proper date while respecting his privacy.
Tyler and I clicked right away, all those years ago, because we both needed the other. We both wanted independence in different ways, but the goal was the same: He wanted his independence from being at home with his parents as primary caretakers and I wanted a friend to go out and live life with. We both lived vicariously through the other, and became best friends because of everything we went through together.
Almost 20 years later, add another best friend, Michelle Corley, and many different seasons in life, and we’re still helping each other through them. Even though I recently moved and we’re now a few hours away from each other, I’m hoping our best years have yet to come, together as best friends and as full-fledged individuals.
In recognition of Spinal Muscular Atrophy Awareness Month in August, the SMA Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by SMA, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #SMASpotlight, or read the full series.
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