Aaron Francis, born and raised in New York City, was diagnosed with myasthenia gravis (MG) in 1999. He reflects on how living with the limitations of myasthenia gravis has been made easier with his family’s help, lifestyle adaptations, and shifts in his mindset.
Transcript
I’m not gonna lie, I used to hide. I didn’t wanna do nothing. I used to not wanna do nothing. I didn’t wanna lift nothing. I didn’t wanna help, because I didn’t like the weakness at all.
I didn’t like the double vision. I’d walk around with sunglasses. And when I’d go outside, because my eyes droop.
I gotta work within my limitations. I like a big meal, but I’m worried about the chewing. I eat soft things that easily break apart. You know, the meat is all — I always make sure the meat is tender. You know?
My cup is not big. I get a small cup, and I drink a lot more water. ‘Cause I’m not gonna lie to you, I love soda. It’s not good for me, but I love soda. But I try to cut down. I drink some soda, but I drink like two or three glasses of water, you know, to break it down.
But you know, it’s like I said, you gotta stay within your limitations. It’s upsetting, and it does — it pissed me off a lot. I’m a big dude. I shouldn’t be weak. I’m good now, but I still want to get stronger.
My sisters — they help with the food, always watch when I’m walking over down the hallway, make sure I don’t fall or nothing.
You know, the good thing about when you have an illness — you got family that care, and your family take care of you, and you have to let them take care of you. It’s not about feeling weak; it’s about being loved.
