A fear of being paralyzed makes me push myself too hard

Yesterday, my brain and body collapsed because I was too tired and exhausted — not due to a myasthenia gravis (MG) flare-up or a virus, but because of my own life choices. I’m pushing myself too hard, either mentally, professionally, or physically. I keep acting like I have no limits. I try to seize every opportunity, sign up for every project, and say yes to every client. It’s like I’m in a constant race, and the prize is to feel alive.

While I was lying down, unable to speak or move without a deep sigh, my sister tried to talk it out with me. “Why do you feel the need to do this to yourself?” she asked. And my answer came faster than I expected, like something I’d been holding in for years: “I have a risk of being paralyzed.”

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It might sound dramatic, but it’s true. From the first day I understood what myasthenia gravis is, I knew my biggest fear isn’t death — it’s losing my autonomy. It’s being unable to walk anymore, to take myself to the bathroom, to the kitchen, or to the door — not because of an accident or old age, but because my muscles simply give up. And it’s happened before — not once or twice, but almost yearly. My body has a way of reminding me that no matter how much I try to forget it, I’m living with something that’s both real and unpredictable.

And yet, this fear is what drives me. As much as I hate it, it shapes who I am. I keep accepting new clients, new challenges, and new adventures because I think that one day, I won’t be able to. And I want to collect enough memories, stories, and feelings to last through the days when I won’t be able to get out of bed.

As the lyrics of a song note, “Everything that kills me makes me feel alive.” For me, that “everything” is MG. It’s what pushes me to live my life to its fullest. I don’t want to wait for permission or a better time to do something. I want to do it now, because now is all I’ve got.

I even catch myself trying to break out of my comfort zone on purpose. When life gets too quiet, I chase intensity. I challenge my brain to innovate something for a client. I explore new writing angles for my column. I go out walking until I collapse, not because I’m reckless, but because I want to be reminded that even when I fall, I can rise, with help, love, and rest.

Maybe one day I’ll lose the ability to walk or move freely. But that day is not today. And even if it comes, I’ve decided that it won’t be the end of the world. My end of the world will be my death, and only that.

Note: Myasthenia Gravis 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 Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.