My Friend Relieves the Devastation of My SMA

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by Ryan Berhar |

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Refined By Fire Ryan Berhar

Throughout my life, I have been blessed with some of the best friends a human could ever ask for. A few columns ago, I talked about spending a good portion of the past year with my friend, Sam. I want to dedicate this column to my cousin and lifelong dear friend, Darren.

Over the past several years, I have had the opportunity to spend about a week with Darren at some point during the year. These have unquestionably been the best periods of my year every time. As I’ve talked about before, taking a vacation is difficult, if not impossible, for me, so my time with Darren is like my vacation. Even though I don’t leave town, it is a chance for me to escape the grind of everyday life. This time, it came during the week of the Fourth of July.

Darren and I have fun no matter what we do, but the No. 1 thing we do is laugh. When we aren’t watching stand-up comedy, we are making our own jokes. He and I have the same goofy sense of humor. We always know what the other is thinking — it’s amazing.

Darren also helps with my care when he’s here. Lifting me is one of the tougher tasks associated with my care, so his ability to do that is helpful to my family and me. His assistance with my care extends beyond the house, too. We drive to all kinds of places together. He grants me a level of autonomy that I rarely experience. The ability to go wherever I want, whenever I want, is awesome.

I love Darren for so many reasons, but the biggest one is that he provides relief from some of the most devastating aspects of SMA. In my daily life, I sometimes feel like a burden because people have to go out of their way for me regularly. My dad might have to come home from work to give me a shower, or maybe my mom or grandma can’t go for a walk because they can’t leave me home alone. But when Darren is here, those issues are nonexistent because he is here just for me. He is not caring for me out of obligation.

Having a close friend who can come hang out with you for several days is something I hope everyone with SMA can experience at some point. It is so refreshing and helps relieve the difficulties of the disease.


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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.


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