SMA Awareness Month: Why Having SMA Is Both a Curse and a Blessing

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by Kevin Schaefer |

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Kevin Embracing my inner alien

In the closing scene of the 2002 “Spider-Man” movie starring Tobey Maguire, a solemn Peter Parker leaves the funeral of Norman Osborn with a spirit of both determination and resentment. While determined to carry on the legacy of his late Uncle Ben and be the hero he was always meant to be, he knows that following this path will require great sacrifice. Despite the love he has for Mary Jane and her feelings for him, he knows that to protect her, he has to let her go.

Peter leaves the funeral with Mary Jane in tears, as the following voiceover plays: “Whatever life holds in store for me, I will never forget these words: ‘With great power comes great responsibility.’ This is my gift, my curse. Who am I? I’m Spider-Man.”

This scene resonates with me on a personal level. Just as Spider-Man reflects on his powers as both a curse and a gift, I too have similar feelings when it comes to having SMA. I know this mentality probably seems strange, but SMA and I don’t have a straightforward relationship. At times it’s my greatest enemy; and at other times I wonder how different, and possibly worse, my life would be if I’d never had it in the first place.

Yes, SMA is a disease that has robbed countless individuals and families of so much, including lives. It takes away our ability to do even the most basic physical tasks. My inability to walk is actually the easiest part, as I’ve never known anything different. Everything else takes a toll on me; struggling to move my hand a couple of inches to reach my phone, being too tired to flip the pages of a book, or being unable to shift positions in bed when I’m uncomfortable. Being reliant on other people for the most minuscule things inevitably makes me feel burdensome at times. It’s common for people with SMA to feel this way at some point.

Still, I’m a believer in the outdated and terribly cliched notion that everything happens for a reason. In my everyday life, I see how my disability provides me with a unique lens and place in society. Just the other night I was out with friends at my favorite movie theater, the Alamo Drafthouse Cinema in Raleigh, and a man sitting next to us said he recognized me from when I was at a burger joint with my family a few weeks prior. I also talked with an employee who was wearing a Spider-Man shirt later that night, and told him that I had named my robotic arm “Otto” after the character Doc Ock.

My friends often wonder how so many people know me, as being recognized by strangers is a common occurrence for me. My response is that there aren’t too many people who fit the description of: “guy in a wheelchair with glasses, an awesome beard, an even more awesome robotic arm, a Batman T-shirt and who won’t shut up.” I’m used to sticking out in the crowds; and whereas I used to try to blend in and seek normalcy, now I embrace my abnormalities and encourage others to do the same.

Here are just a few ways in which SMA is both a curse and a blessing for me.

Curse: SMA has robbed me of countless physical abilities.

Blessing: This, in turn, has forced me to sharpen my mind and do things that people said I wasn’t capable of, such as going to college and getting a full-time job after graduation. 

Curse: SMA has forced me to be reliant on other people for even the most basic physical tasks.

Blessing: I have deeper and more intimate relationships with my friends and family than most people, and I appreciate them more.

Curse: I spend a lot of time in hospitals and doctors’ offices because of SMA.

Blessing: I get to flirt with attractive nurses and physical therapists on a regular basis.

Curse: SMA took away most of my strength in my arms and upper-body strength.

Blessing: I acquired a high-tech robotic arm that looks like something out of a sci-fi movie.

Curse: I need extensive help with things like going to the bathroom, bathing, and scratching my private parts.

Blessing: It’s fun to make wildly inappropriate jokes about these topics with my caregiver.

August is SMA Awareness Month. As you read other stories by people in this community, you’ll find that this disease affects us in different ways. The thing I’m most grateful about being dealt this card in life is the people I’ve met as a result. The SMA community has some of the most extraordinary people out there, and through thick and thin we’re in this together.


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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