A fear of being paralyzed makes me push myself too hard
I want to collect as many memories as I can right now
Note: This column was updated July 31, 2025, to clarify that the author fears temporary paralysis caused by severe muscle weakness, as opposed to a permanent paralysis.
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 fear of being paralyzed.”
The possibility I was trying to explain to my sister was that my body can become so weak it becomes immobilized.
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 due to exhaustion and muscle weakness caused by MG. 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.
About the Author
Gaylee
I slipped out of bed onto the floor I was paralyzed couldn’t move my body or even yell for help thank God my daughter found me. I had 10 treatments of plasma exchange and started on prednisone and mestione . Came home 16days later had to live with my kids. I couldn’t walk without a walker - couldn’t feed myself or wash talked but I slurred. It took a few months. To be normal that was in 2021 I am much better now but still on prednisone only 2 mg. So far I feel I’m in remission but we never know. But have to live for today.
Greg Clarke
I tell myself and anybody who asks about my MG. "I can do anything I want. I just can't do everything I want." (This applies to money as well) This forces me to focus on what really matters.
Background: I'm retired. I played in a bluegrass band, I had a 400 sq ft woodworking shop, I had a 1/2 acre yard to take care of. I also do most of the cooking. Now that my double vision cleared up, I consume 2-3 sci-fi novels a week. I'm on the mend with MG, but it's always looming in the background.
I stopped playing music for money. Playing was the fun; the travel, setting up, practicing, and managing was tiring and stressful. The worst thing a bluegrass band can do is not show up. Now I lead jams for free once or twice a week, but if I don't show up it's no big deal. I still get to do the fun part and also mentor younger Bluegrass Pickers.
We downsized to a condo. I don't spend unnecessary energy on home maintenance, lawn care, and remodeling.
I still have a flower garden to tend. I have fresh herbs growing in pots in the back to spice up the cooking.
I can still make sawdust on small projects. I have found it takes real skill to make things square with a limited number of tools. The real joy always came from the problem solving, not the size of the finished project.
I used to travel with work, but now I don't care if I ever get on an airplane again. However, I have become reacquainted with Microsoft Simulator, and I travel all over the world. Family members are getting used to the idea that they have to come see me now.
If my health declines I have a plan B
3D-Printing looks like a good out for problem solving and making things.
My wife knows how to cook, she just wasn't a good planner. I can still assist with meal planning and grocery shopping on line.
I have 13,000 songs on my old i-pod and just about every song ever written on the Internet to listen to.
There are many audio books available (I just worry about falling asleep and losing my place)
I have, so-far, resisted too much Netflix, but it's always there.
Yes, I get sad sometimes, I miss my table saw, I get a little envious of my former bandmates tales, the new owners of our old house have let the yard go, but I don't feel trapped or paralyzed.
Focus on what matters.
richard marquard
Tremendous article timing for me. Fell down stairs this morning as my leg muscles just gave out. Grateful I can respond a little , but really making me think. Perhaps I may be kidding myself in that I think I can make my non existent muscles get strong enough to now make me feel confident to get some me “normalcy”. But, I too will push myself on to betterment. Won’t give up trying. Today ( now) is a little scary, but, grateful that I can ( and will) live every day to the max… after my nap! Time is precious every day.
Richard Marquard
Pete
Well said. I go through that cycle of overdoing it then needing to rest and recover for an extended time. Something’s a few days, but it’s been as much as a few months with some hospital time. Fear of being paralyzed definitely drives the cycle. My ups and downs are somewhat predictable because of my infusion cycles, so I try to squeeze in as much activity as I can when I’m feeling ok, which is often too much. I am constantly finding my limits the hard way. Like you, I doubt I’ll ever stop. But knowing it’s going to happen helps me be more accepting when my body says “enough.”
Rena Danos
I fear not being able to breath. Can someone tell me what could be the first symptoms of this. I have trouble swallowing sometimes. Could this be one of the early symptoms that would progress to not breathing?
Esther Rasnake
I feel so lost in the treatment for me