Receiving an Offer of Help Reminded Me What It Means to Be a CMTer

I had just exited the county building after getting my second shot of the COVID-19 vaccine and was making my way across the parking lot toward my car. Then I heard a man calling out from behind me.

When I turned back, I saw a county worker leaning against a small shuttle bus. I wasn’t the only person in his line of sight, but it was me he singled out among the scattering of folks walking back to their vehicles. With a head nod and a glance, he communicated his observation of the way I walked — swaying and with a bit of a limp — and asked me whether I needed a ride.

Although I ultimately turned down his offer because I had found an amazing parking spot only a few steps farther, that moment brought a few things to mind. It reminded me that I’ve changed and grown comfortable in my identity as a person with Charcot-Marie-Tooth (CMT) disease, that I’m thankful my county has taken some steps to make things a bit more accessible, and that ultimately, there are still many systemic problems that perpetuate inequalities in our society.

Firstly, the experience reminded me of my growing comfort as a CMTer because I can remember a time when I might have been ashamed of a stranger making note of my gait, or insulted by an offer of help. So averse was I to the fear of people taking pity on me that I would reject honest and genuine offers of assistance.

And that is foolishness. Refusing help when needed isn’t indicative of strength, and I don’t think any of us with CMT should feel any shame when turning to an assistive or mobility device, or when accepting an offer for a quick ride, whether at airports or theme parks.

As such, I was happy to see my county invest in employees and equipment to help people with mobility difficulties, such as those of us with CMT. With initiatives like the push for COVID-19 vaccinations in the United States, it’s important we try to carry them out in fair and equitable ways.

And yet, I couldn’t help but also think of all the ways this pandemic has revealed shortcomings in how our society cares for many populations. Although I was able to get my COVID-19 vaccine quite early compared with many other folks in my county, it was purely due to certain privileges I have.

It wasn’t the result of CMT or any health-related reason. And I’m not technically a healthcare worker. However, I work at a county library, and when the county needed help at one of its mass vaccination sites, it welcomed library folks such as me to help out. In exchange, I was able to get vaccinated a bit sooner than I otherwise would have.

Being physically able enough to work at a mass vaccination site and not having other obligations in my schedule are certain privileges that I have. And although I’m very happy to be fully vaccinated, part of me feels like I was just able to take advantage of an inequitable situation.

I don’t know what to do with these feelings yet. However, this whole experience of getting vaccinated and recognizing some personal growth in myself has strengthened my resolve to continue exploring what it means to be a CMTer and to keep my eyes open to the needs and inequalities in our society.

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Note: Charcot-Marie-Tooth News 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 Charcot-Marie-Tooth News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.