Embracing a New Chapter in Life With SMA

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by Kevin Schaefer |

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The worst part about long-running sitcoms is when they hit so close to real life.

This is especially true when everyone’s favorite characters leave. Think about when Michael left “The Office,” or when Chris and Ann left the town of Pawnee in “Parks and Recreation.” These moments hit like a gut punch, partly because of how truthful they are. As much as we hate to see our favorite fictional characters go their separate ways, this is often how things play out in the real world.

Our favorite shows have conclusions, good relationships can end well, and people go in different directions.

A few months ago, I hinted at an impending change that would drastically affect my life. Now that the change is right around the corner, I’m only somewhat ready to put it into words. Drumroll, please …

Randy, my longtime caregiver, is leaving soon to start a new career.

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My Caregivers Are My Second Family

Though I’ve been telling people this news, it still feels weird typing out the words. On one hand, I knew this time would eventually come. A seven-year caregiver-client relationship is an eternity in the world of personal care assistants. Heck, Randy met me before he met his wife.

In 2014, we had vague ideas of what we wanted to do with our lives. Neither of us had any idea how long we’d work together. At that time, he wasn’t even planning on being a certified nursing assistant for much longer.

Since then, we’ve watched each other grow and reach milestones, traveled together to multiple states in the U.S., and become part of each other’s families. When I first started looking for caregivers, agencies kept telling me not to become friends with the people I hired, and to keep things professional. Thankfully, Randy and I both ignored that advice.

Changes with SMA | SMA News Today | Kevin and Randy make silly smiles for a photo.

From left, Kevin and Randy are up to their regular shenanigans. (Courtesy of Kevin Schaefer)

As unique as our relationship is on a personal and professional level, I knew that the latter half of it couldn’t last forever.

Still, recognizing the reality of it all doesn’t make the transition any easier. Seven years of dependency, trust, inappropriate jokes about every topic under the sun, and a severe lack of boundaries is hard to replicate. We even documented our relationship in a podcast.

Plus, the anxiety that comes with finding a new team of butt-wipers is no walk in the park, either. It requires relentless searching online and through agencies, interviews that are often the most awkward of interactions, and an endless supply of patience.

I could easily spend the rest of this column venting about the frustrations that come with this transition, and part of me wants to. Still, another part of me recognizes this change as a period of opportunity for both Randy and me.

Randy will soon embark on a new career in the world of commercial driving. He’ll have many opportunities to travel for work, gain new experiences, and I’m sure he’ll have myriad irreverent stories wherever he goes. He may even have kids one day, which sounds like the premise for a Kevin Hart movie.

As for me, I, too, have many adventures ahead of me. I have stories to tell here and through other mediums, including podcasts, comics, and books. My life is filled with relationships, and I am immersed in communities that enrich my spirit. Where I go from here is unknown, but that element of mystery is somewhat exciting. “Part of the journey is the end.”

Ha! I’ve been waiting for the opportune moment to insert a Tony Stark quote into a column.

It’s true that this is the end of an era, but not the end of the story. It’s a new chapter that will no doubt be riddled with challenges, but one that I’m choosing to embrace.


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.


Blake Watson avatar

Blake Watson

I feel this. Losing a long-time PCA always sucks. I always thought if I struck it rich I would pay my PCAs what they deserve and make sticking around worth it.

Pamela K Muhammad avatar

Pamela K Muhammad

Good morning Kevin! I can most definitely relate to losing 'good caregivers' it is definitely not an easy thing to deal with especially, when it happens suddenly! I hate the process of having to interview and train multiple people praying that you won't have to go to the daunting task of having to go through a hundred interviews before you finally find the right caregiver to match your personality, spirit, good hygiene ,being in a clean environment and the physical requirements it takes to take care of my personal needs. Unfortunately, those of us that have SMA have to more often than not don't have a much of a choice in the matter, but to deal with it! Much success on finding a proficient caregiver. (smile)

Pamela K Muhammad avatar

Pamela K Muhammad

Blake I agree wholeheartedly!


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