Oct/Nov 2012 Nonfiction

My Son Works in the Museum of Intolerance

by Bobbi Lurie

My son works in The Museum of Intolerance. His job is to get people to sign a sheet of paper when they walk through the door. The sign-in sheet makes them "official" and helps justify the museum's existence.

Once they sign in, my son offers to show them around the exhibits of human atrocities, made up mostly of photos. My son has become an expert on human cruelty. "Why are people such creeps?" he often asks.

"Why don't you ever come and visit the museum?" he asks today.

"Because I can't bear to learn anything more about The Holocaust," I tell him. He knows our family history. He knows about my life in Israel.

"It's more than The Holocaust, Ma," he says. "It isn't just about Hitler, Ma. They killed people faster in Rwanda." My son is on the autism spectrum. What this means, to me, not "them," is that my son cannot comprehend human cruelty. It makes no sense to him.

"Why was I ever born, Ma?" he asks me, as he always does. "Don't you think the world would be better off if there were no people?"

"Yes." He knows my answer.

"Why did you have me anyway?"

"Because you taught me what love is," I say, as I always do.

"But isn't that selfish?"

"Yes," I say. I always say "yes."

A long pause as usual and then, as expected, I pose the question, "Will you eat tonight?"

We are fighting anorexia. "We," meaning any doctor who has ever met my 96-pound son. "We," meaning me, not him.

"The anesthesia makes eating hard. I need to stop eating," says my son, one up on me. He has an excuse these past few days. The surgery in Miami. The surgeon from China, the genius who gave him back his one good eye after Stevens Johnson TEN and an injection of prednisone, inserted into the wrong part of the eyeball, blinded him in his left eye. The doctors said he would soon go completely blind in his right eye as well. His eyelids, after Stevens Johnson TEN attacked his entire body, turned to a texture like sandpaper, scratching his corneas every time he blinked. The surface of the cornea grew thinner and thinner; he could not bear the light; his head was always down; blood vessels were growing into the cornea, and if they reached deep enough into his remaining eye, he would be blinded forever.

The destruction wrought by Stevens Johnson TEN keeps progressing. He can no longer make tears. The type of severe dry eye he has causes blindness.

I decide not to push him to eat. He's alive. He can see. We found a doctor who surgically altered the eyelids in his right eye, smoothing them out with the skin from inside his mouth, allowing him to look into the light for the first time in two years, allowing the blood vessels in his right eye to retreat for the time being.

"Did you take your drops?" I pray he did. An infection would destroy everything.

He hems and haws. My eyes must have been shut. I did not see him go. I hear the front door close. He is gone. We live in the middle of nowhere. I pray he can see well enough. It is dusk.

After surgery he tore the bandages off his eyes. The day before the surgery he said, "I don't care if I go blind." Instincts took over after surgery. I thought I could see his heart pounding through his chest. I begged the anesthesiologist to give him something to calm him down. I've heard anorexics die of heart attacks.

Where did he go? Where is he now? It's getting dark. Can he see?

I take a Xanax. I have lost count of how many I have taken so far today. I've been taking them for years. I don't think they work anymore, but doctors have warned me that going off them can create a nightmarish situation. The backlash of medications is familiar to me. My son's disease was caused by a severe reaction to pharmaceuticals.

An hour later he walks back inside.

"Where were you?" I know he won't answer. I decide not to ask about food. I decide not to ask if he will take the drops.

"Do you want to watch a comedy?" I pull out Curb Your Enthusiasm.

"I gave that to you, you know."

"Yes, I know." I pull him close to me.

"Why did you have me?" I say nothing. I pull him closer still.

Because without you, I would not know what love is.


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