Moving to the Center of the Bed

Sample Chapters

After forty-two years of marriage, my husband was gone without a goodbye.

Several years ago, George was diagnosed with Pick’s Disease, a fronto/temporal lobe dementia. A practicing ophthalmologist, he was sixty-four years old.

To the end of my life, I will remember the neurologist showing us the results of my husband’s MRI. As he slid the films onto the illuminated screen, the doctor pointed to what looked like black holes in my husband’s brain and gave us the clinical description of the disease and the symptoms that fit exactly my husband’s recent puzzling behavior, the reason I had brought him to the Mayo Clinic in Jacksonville, Florida, for diagnosis.

I began to shiver in the small, frigid cubicle that looked like every other cubicle on every other floor in every building of the Clinic. I wrapped my arms around myself as the doctor with the soft accented voice droned on with the precision of a well-oiled machine. I felt dislocated in time and space, as if in a surreal movie. Of all the catastrophes I had ever envisioned befalling my husband or me ... heart disease … cancer ... a plane crash ... I had never imagined dementia. But here it was in graphic detail. I could barely take it in.

Pointing to my husband’s MRI, the doctor said, “The frontal and temporal lobes of the brain are being eroded. That’s what the dark spaces tell us. That is what is causing the dementia. These films, plus the cognitive tests we’ve done, and the observations you’ve given us, Mrs. Weinstein, all bear that out. Dementia is a broad term. There are many forms of it. In your husband’s case, the symptoms fit the diagnosis of probable Pick’s Disease. I say probable because there is no way to know exactly until … autopsy.”

My heart froze. Autopsy? Wait. Wait. What was this man saying? It can’t be ... not George.

George stood and looked closely at his MRI, his face impassive. Then he turned and sat down again.

“George?” I took his hand.

“Yes?”

“Are you okay?”

“Sure.” He smiled and picked up a magazine.

I was stunned. I looked at the doctor.

“That is the nature of this disease. If there is a gift, it is that there is an inability to comprehend that there is anything wrong … or different. It is not the same as Alzheimer’s disease where often the patient is very aware at first.”

“Oh, God. I never heard of this. I’m a doctor’s wife, and I never heard of this. Are you certain?”

“It’s a rare disease. Many doctors haven’t heard of it either, and that’s why it is often misdiagnosed as, say, depression or other things. And yes, I’m certain. Unfortunately I have seen too many cases just like your husband’s. I’ve also gone over his findings with my faculty. We are all in agreement.”

Then came the details of the anatomy of the disease, the lack of medication or ability to cure, and its slow but inevitable progression towards death. With each spoken word I felt life as I had known it slide into the great black hole. I looked at George. Tall, elegant, beautifully dressed George. But he wasn’t George and hadn’t been George for a very long time.

I was hypnotized by the doctor’s rote repetition of what to me was completely foreign. What the doctor was describing in grim detail was an illness that almost defied understanding ... not cells going berserk ... not the breakdown of the most powerful muscle in the body ... overworked and overfed ... but a wasting away of a brain that controlled every function in his body. Everything that made my husband who he was would soon be gone. I put my hands over my face. George was going to die. Sturdy, strong, indestructible George was going to die. And not easily, not gently ... but by losing himself in pieces ... everything he was, everything he knew. I heard a long, howling scream deep inside myself. When it stopped, I asked the question, quietly.

”How long?”

“It’s difficult to say. We used to say two to eight years; but we were proved wrong. It may be a lot longer.”

This was not happening. These were supposed to be the best years. Freedom, no responsibilities. This was all wrong. All wrong.

I turned to George and took his hand. He looked up from his magazine and smiled. He had no idea what was happening to him. I looked deeply into his beautiful green and trusting eyes and swore a silent oath to him and to myself that I would always take care of him, that he would never lack for anything and that I would never let him down. But deep within me I felt a kind of fear I had never before experienced.

“There’s one more important thing I want to discuss with both of you,” the doctor continued. “Dr. Weinstein must close his practice immediately.”

Of course. Of course. I knew it. But how to ingest it? George had wanted to be a doctor since the age of twelve, when he wrote to the dean of a medical school to find out what he would have to do in his life to accomplish his goal. I had known George most of my life, and most of his. I’d been with him through medical school, internship, residency, and all of his academic appointments. And in the few minutes it had taken for the neurologist to give me his diagnosis, it had all ended. I wanted to beat my fists against the wall. I wanted to yell at the doctor, “No, no … he can’t!” But, I was mute as tears ran down my face.

The doctor handed me a box of tissues and then looked at George. “Dr. Weinstein, you are going to have to close your practice.”

Continued on Intro - Page Two