31 Days of SMA: Sometimes Our Minds Are the Barrier — Not SMA

Photo courtesy of Ross Hovey

Day 20 of 31

This is Ross Hovey’s (@thesmartchap_rosshovey) story:

Having just turned 43, I’m reflecting on my achievements in life and the regrets I have, which I am fortunate to say are few and far between.

While everyone’s lives are different, we all are created in one way and we all eventually, and sadly, leave the world through death. Whether we are born with a disability, have a poor childhood, experience traumas, live in poverty, or face other challenges, we can be the victim or the victor.

I, like some readers, was born with SMA, but fortunately had parents who pushed me and instilled in me huge resilience. By our midteens we tend to have developed our personal characteristics, values, dreams, and motivations.

So far in life, I have not often let SMA hold me back. I have a very good full-time job, my own amazing home, possessions, and hobbies, and I’ve seen much of the world (all with the help of great caregivers) — things many nondisabled people haven’t experienced.

But there are regrets, which, if I had Doc Brown’s DeLorean, I would change. At 18, I went to a local university and lived at home. I wish I’d lived the proper “uni life” and moved away from home to experience a new city and widen my circle of friends. Why didn’t I? Because I was too worried about a nonfamily member doing personal care. I bottled it up until my 30s. It was only me who was apprehensive about something that, once I’d done it a few times, was no big deal.

My other disappointment in myself is that I’ve not found love and that special person to spend my life with. I again only have myself to blame: living with family until 30, the way I presented myself and my disability, and my expectations. I’ve always put huge pressure on myself not to let SMA hold me back and to be the best I can be, whether that’s in my career, friendships, and even my presentation and experience. I want to meet someone my family and friends love. Someone who has the same goals, who understands and embraces my disability. All this is probably not achievable.

These regrets have nothing to do with my disability; they’re the result of all the barriers I have made. My message to readers is that SMA will not hold you back in life, but your mind can.

SMA News Today’s 31 Days of SMA campaign will publish one story per day for SMA Awareness Month in August. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofSMA, or read the full series.