With MG, simply surviving feels like sailing into the wind

Six years ago, I knew little about myasthenia gravis (MG) and nothing about COVID-19. I traveled, drove a high-end German car, and had a cleaning lady who kept things tidy. My lifestyle was definitely comfortable. However, I knew it wasn’t due to me being superior to anyone else.

Like most of the world, I was blindsided in 2020 by the COVID-19 pandemic, which had serious economic consequences. In that atmosphere came my MG diagnosis, and the life I’d previously enjoyed vanished.

MG set me on a path that led to a precarious financial existence. I knew how to cope with physical and psychological pain, but financial dilemmas were uncharted territory. They frightened me, so I pretended they didn’t exist.

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The life I once lived

For 30 years, I was a teacher, giving my energy, heart, mind, and time to my students. I took pride in what I did and believed that education was a noble calling. I stayed late to help struggling kids, coached championship teams, earned the respect of my peers, and spent my own money on classroom supplies. I did all of this without complaint because I believed that education matters.

Fast forward five years, and I no longer have many of those benefits. The physical and emotional struggles caused by MG have left me exhausted. The disease took a job from me that I loved, as well as the financial security that accompanied it. I was forced into retirement before I was ready. A life of financial struggle certainly was not my choice, but MG chose it for me.

Now, I never seem to have enough money. I stress over groceries. I rely on my family just to keep the lights on. Without them, I’d be on the street, and that’s not an exaggeration. I worked hard my entire adult life, and now, after giving so much, I feel cast aside. I feel like society doesn’t care. It celebrates billionaires and influencers while teachers — the people who shape the future — and others like me who are living with rare diseases are left to fend for themselves.

It’s hard not to be bitter. I did everything I was supposed to do. I played by the rules. I contributed. And yet, I’m the one sitting at home, unable to afford the basics, watching others live the life I once lived.

My niece is getting married, and I’d planned to be there to celebrate with the rest of the family. Last week, I reluctantly canceled all of my reservations. I can’t afford the travel, the hotel, the clothes, the gift. Once again, I’ll be on the outside looking in. It’s another happy moment I’ll miss, another memory I won’t be part of.

Then the guilt creeps in. I know how lucky I am to have a family that helps me so much. If I asked, they’d pay for my trip, but I just can’t do that. They already give me so much. But the guilt doesn’t cancel the grief or erase the loneliness and fatigue of fighting to survive. Yet somehow I keep going.

Aristotle Onassis, once one of the richest people in the world, and probably the most famous MG patient, stated that “we must free ourselves of the hope that the sea will ever rest. We must learn to sail in high winds.”

In the past, I believed things would get easier as time went by. Now I understand that no calm sea is coming, and it’s my job to keep on keepin’ on.

Some days I succeed. Other days, I set my sail just right yet drift or barely move forward. Those days, I remember who I was in the classroom, how many students I helped, how many lives I touched. I remind myself that I’m still here, still standing. Even in high winds, I’ll keep sailing.

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.