My book.

My book.
"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.

Total Pageviews


Thursday, May 10, 2012


Someone from my sister's high school class contacted me a few weeks ago. Although there was a 10 year difference in our ages my sister often took me along when they visited. I liked her. She liked me.

"How are you"? she asked "And how are your sister and brother?" Unhappily I had to write bac, "I have been disabled for over 30 years. My sister and brother and I have been estranged for many years."

She did respond.

I wondered if she contacted my siblings. And more so I wondered would they tell her the lies they had been telling about me for many years: lies that had effectively turned a lot of people against me who used to like me.

It started me thinking about other people, other times, other realities. Some of the lies did not have to do with my pain and disability but it was those that I thought about.

I thought about my father. He had decided many years before that I was lazy, a malingerer, a fraud, despite doctors showing him diagrams of what was wrong inside my brain.

He was dying of ALS. With not a lot of time left I thought maybe now I could get him to talk with me about who I was and what had happened.

I sat down with him, my lap filled with medical records and articles about what I had.

"I need to get this settled with you. It is important to me that you accept the truth of what my life has become, and why." I picked up page after page: "This is the diagram of what they found in the first operation. This is what they found on the second. Here is the operative report from operation 5 and 6. Here is the chart notes from 3 and 4 since they did not do an open surgery."

He looked at them as you would look at a boring article in the paper.

I reminded him of what Dr. Schatz, the neuroophthalmologist, had said to him, "What Carol has is from a birth defect." and the texts and diagrams he had shown him.

"This is real." I said. "I never made any of this up. My disability and pain are real." Defending the pain and disability was always hard for me: how can you defend something that has killed your soul, and ruined your life and dreams? Sometimes there is no choice.

I finished my presentation, for that is what it was. He looked at me, then down at the sheaf of papers.

"There's nothing wrong with you." He looked away, the conversation over, the truth of my life ignored and denied.

I thought of that, and of my sister arguing with me about keeping candles unlit at a lunch table because the flame hurt my eyes, of a nephew saying "Do you wear penny loafers to show people how poor you are?" Of the women, when my trigeminal pain was at its worse, the slightest breeze triggering horrendous pain, yelling at me "How dare you take a handicapped spot? There's nothing wrong with you." Of other voices, other places, other nastiness, denials and refusals of acceptance.

There comes a point when you have to let it go.

I heard a great line the other day on an NPR show. "Expectation is the father of disappointment and resentment."

It's true. I expected that, one day, the miracle would happen; I would be believed without having to show the medical and textbook proof. I would be believed because I said "I am in pain. I cannot..."

Those expectations, that hope, has had only one outsome - disappointment, resentment, hurt, anger, you name the negative and that emotion can most likely be included.

The time has come. Forget accepting the limitations of others in being able to empathize, to hear, to understand. The onus is on me. I have to let it go. And when I do the pressure of the unmet expectation will dissolve, and the overwhelming weight disappear.


  1. I believe you! My heart hurts for you! I know you are suffering! No one would carry a fa├žade like that with the burden it places on you. I will pray for you, you should join me in prayer for you! You have found a compassionate friend!