Aaron Francis, born and raised in New York City, was diagnosed with myasthenia gravis (MG) in 1999. He reflects on the frustration of MG’s symptoms’ unpredictable nature, and how he pushes through when they strike.

The weakness. The weakness in my arms and legs. I don’t like being outside, trying to help hold on to my niece, and any minute, you know, the strength will give out on you. I don’t like that.

I was in the kitchen getting something to eat, and I’m a big dude. I think it was my sister who made something. It might have been ham. And I pulled the ham out. I’m holding it with my hands, but I start shaking.

I don’t understand the MG problem. The strength was in my hands to stay there, but my legs gave out, and I fell. I didn’t drop the plate, thank God, but I hit the floor, and my sister Renee was shook.

She’s like, “What’s wrong?”

I’m like, “I don’t know.” I didn’t know what it was.

And if I could know when the weakness is going to kick in, I’m not going to lie to you, I would probably hide in the house till it disappears. I’m not ashamed to say that. I don’t want to be outside, and they say, “This big dude, but look, he’s moving slow. He can’t lift nothing.”

I would love to be able to take the weakness in my arms and legs. I wanna be strong. I don’t wanna be outside, and someone can do something. But if I can predict anything, it’d be the weakness in the muscle. You have to sit down and rest, so you don’t fall on the street.

I took my niece to school one time, and it was just early. My mom was tired. My brother had to go to work. So I took my niece to school, but it hit me, and it really brought me down, really moving slow, and a friend saw me. He thought I was in an accident.

He said, “Did you break a leg or something?”

I said, “No.” I don’t tell everyone. I’m like, “I just tripped up and hurt my ankle.”

So, “Yo, you got to rest. You can’t be outside like that.”

I said, “No, I understand.”

But every few steps, I had to take a seat or lean against the wall until the weakness went away. And I saw a bench, and I sat on the bench. I didn’t realize a half an hour went by, but I had to rest. I felt like I ran a marathon, and the school wasn’t that far away. It was like two or three blocks away, but it took me a half an hour to get back.

And my niece is looking at me the whole time. “You’re OK?”

I said, “I’m fine. Don’t worry. I’m OK. I’m just tired.”

But coming back, I sat on steps, I sat on the bench, I leaned on the wall, and you have to do it. Doesn’t matter if you get upset, doesn’t matter if you want to cry, you have to do it. It’s the only way you’re gonna get home.