Spending Time Alone Is Part of Living With SMA

Columnist Kevin Schaefer reflects on how personal solitude has changed for him

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by Kevin Schaefer |

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The other day, I had my annual evaluation with a nurse to make sure I’m still disabled. This is one of the things that those of us who use government services for caregivers just have to do. It’s no secret that having a disability is a full-time occupation.

Fortunately, the nurse I spoke with talked about things other than the list of questions in front of her. It’s refreshing when the person on the other end of the line engages in an actual conversation, instead of simply checking off another appointment from the day’s agenda.

Most of her assigned inquiries were about subjects like how I poop, shower, get in and out of bed, and operate my wheelchair. She asked about my health and if there were any notable changes since my last evaluation, all while making small talk. I much preferred this exchange to calling my insurance provider multiple times.

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Toward the end of the meeting, the nurse asked me one question that actually made me think a bit. “Is someone always with you or do you spend some time alone?”

It’s a valid question for someone like me who depends on others constantly to meet my physical needs, and responses vary among members of my neuromuscular community. I know some who need a caregiver at their side 24 hours a day, particularly if they use ventilators or have limited head and neck control. Others have more physical capabilities and don’t require around-the-clock care.

As a child, the extent of my alone time was when I watched TV or read books in my room. Even then, I couldn’t be left in the house by myself in case there was an emergency, as I had no way of getting out on my own. At school, I always had an adult aide with me, and I was regularly active in theater and church when I wasn’t in class. I’ve also never once in my life taken a shower or gone to the bathroom by myself. Privacy is different for disabled people.

Now that I’m an adult and technology has advanced, I can be by myself for long stretches of time. With Amazon Alexa devices and my remote control door opener, I can afford the luxuries of Kevin McCallister that I lacked as a kid. My mom can run errands during the day while I work from home. And if my parents want to go out on weekends they can do so without worrying about my safety or me destroying the house. Often I make plans with friends, but other times I relish periods of solitude. I can blast music by Black Sabbath or Taylor Swift, or I can enjoy the uninterrupted silence as much as I please.

Lately, I’ve enjoyed going to nearby places without others accompanying me. There’s a Mexican restaurant I love that’s within walking distance from my house. Before I acquired my JACO robotic arm in 2015, I wouldn’t have been able to get there on my own, due to my inability to press the crosswalk buttons. Alas, the wonders of modern technology grant me more independence than I once had, and I use this device to push buttons and keep my phone on my tray. I like making this trek without any assistance from other people, even if it’s only a short distance.

As a lifelong people person, one might think I would dread time by myself. In actuality, I treasure the time I do have to be alone. Life with SMA means that I’m constantly surrounded by people, particularly those who take care of me. I love my parents and caregivers, but it’s also liberating to have moments of solitude. I enjoy going for strolls in the neighborhood, taking myself to Barnes & Noble, and having the house to myself. Too much alone time very well might turn me into Jack Torrance from “The Shining,” but a healthy balance is good for the soul.


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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