Talking to my FSHD

by Haviva Ner-David

Part II of excerpts from Dreaming Against the Current.

I decided to talk directly to my disease. After thirty-two years, it was about time.

“Are you willing to talk to me, FSHD? I know you are there.”

“Yes.”

“Can you tell me why you showed up in me, out of the blue? A mutation. What were you trying to tell me?”

“I have always been with you. I did not happen to you. I am not an invader. You were born with me. We were born together. Pain and suffering are an inherent part of life. The moment you are born, the only certainty about life is you will die. I didn’t just show up one day, out of the blue. Why do people think they are going to be spared pain and suffering? No one is. The illusion is you can avoid it somehow.”

“What do you want from me?”

“I want you to let me run my course. And I want you not to blame me. I do not want to hurt you. Maybe if you stop fighting me, we can be friends. I may be different, but I am still beautiful. Maybe in my difference, I am beautiful. Why does a mutation have to be bad? Stop reinforcing that idea. Please.”

“What am I doing to reinforce that idea?”

“You do not hug me. You do not embrace me. You do not love me. Laugh with me, please. Have fun with me. Be kind to me. Take care of me. But not in a condescending way. And don’t fight me. I may be a mutation, but I am not your enemy. If we sprang out of nowhere, we did it together. Accept me for who I am, and you won’t be sorry.”

Dreaming Against the Current, by Haviva Ner-David, is available at Amazon, Barnes and Noble, Bookshop, and Book Depository.