Life Advice From My Hippie SMA Friend

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by Kevin Schaefer |

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I correspond with a number of friends and acquaintances in the SMA community on a regular basis, but mostly through social media and work. However, there is one friend I met at a conference in 2017 who is a bit of a maverick. Mike has no social media presence and instead prefers to communicate via email and phone conversations.

He’s also a life-loving hippie with a ponytail who spends the majority of his days reading books, seeing friends, and lounging in the pool. It’s the kind of lifestyle I want if I ever reach retirement. Despite his aversion to modern trends in the digital age, he could have a killer Instagram page.

living with SMA | SMA News Today | Kevin Schaefer and Mike Blakey talk at the 2017 Cure SMA Conference. Both are seated in wheelchairs and wearing blue T-shirts.

Mike Blakey, left, and me at the 2017 Cure SMA Conference. (Courtesy of Kevin Schaefer)

During our most recent call, we discussed books and movies, general life updates, and our summer plans. Both of us are going to concerts — I’m seeing the indie pop band HAIM, and he’s seeing Ringo Starr. He gets to see a Beatle, and I get to see my celebrity crush Alana, the youngest of the Haim sisters.

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As we talked about these shows and other travel plans, Mike said how important it is for him to have things on the calendar to look forward to. He compared it to having “gifts wrapped under the Christmas tree: just seeing them there gives you something to look forward to. Rarely do our expectations get met or exceeded, but just having an expectation helps your psyche.”

I thought about this quote in relation to living with SMA and Mental Health Awareness Month. The past two years of the pandemic have taken a toll on our mental and emotional health. While I believe we should remain vigilant about protecting the physical health of ourselves and our communities, we also need to have things to look forward to.

Granted, I recognize that this isn’t always easy for disabled and immunocompromised people. Not everyone in the SMA community can be in large crowds or go to venues that are largely inaccessible. Yet making plans doesn’t necessarily mean seeing your favorite artist live or traveling across the country. Something as simple as getting coffee with a friend or going to a movie can ignite a level of excitement in us.

A few months ago, I started writing a play, a full-length romantic comedy that features a protagonist with SMA. Though I just completed the first draft, it’s been one of my most exciting and fulfilling creative endeavors. I spent many nights after work and weekends plowing away at this script. Each writing session didn’t feel like work, but rather an outlet for me to release thoughts and emotions, much like this column.

Living with SMA is hard and packed with endless to-do lists. For me, it’s easy to feel overwhelmed managing caregiver schedules, coordinating rides to appointments, and tending to my physical health while working full time. While I joked with my mom the other day about how nice it would be to clone myself and have one of my selves deal with the aforementioned responsibilities, I realize that I can only do so much on any given day. One of the most important things for me to do is to save time and energy for enjoying life.

Having those metaphorical presents under the Christmas tree can be anything: time with family and friends, a creative endeavor, listening to music, or confessing your love to your celebrity crush. Hey, Mike said that having an expectation, even a wildly unrealistic one, is good for your psyche. I’ll take his sage advice.

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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