My only brother was Joey. He was born in December 1964, which made him fourteen months older than me.
He was a Downs Syndrome baby. He was severely retarded and spent his entire life at a mental age of between two and four years.
He was primarily a happy child. Much of my early childhood experience revolves around doing what was best for Joey. I was raised with the belief that his care would be my primary responsibility when we grew up. The phrase, “…my brother’s keeper…” was one I learned early and thought about often.
As a young adolescent I moved away from my brother emotionally. As I continued to try and pursue my own life as a young adult, the distance became greater.
Toward the end of his life, my brother’s personality changed drastically. He went from being outgoing to withdrawn, happy and complacent to angry and violent.
My mother didn’t know what to do for him. She had taken him to a string of psychiatrists, neurologists and others. Nothing helped him. It was suspected by some at that time that there is an Alzheimer’s-like syndrome that occurs in Down’s patients in some cases. This remains the only physical explanation for his outbursts. Whatever perception he had of himself – perhaps an understanding that he would never grow out of his limitations – was never discussed. There was little anyone could do. He was becoming physically dangerous and decisions had to be made.
My Mother committed him to a very prestigious psychiatric hospital. This was utter desperation on her part since the main propulsion through her own adult life had been “keeping Joey at home…”. Indeed she had participated in many efforts to close the state institutions and integrate the mentally challenged into public life.
After a few weeks she brought him home. She installed a wire barrier and removed the door handles in her car so he could ride in back without incident. She hired various and sundry people to come to the house and help out.
He was sick when he left the hospital. She thought it was a cold. It got worse, and he appeared to be very ill. She took him to the ER.
This was the same day in 1992 that I had decided to try making my move to New York City permanent. I had been living with my mother in-between traveling gigs and trying to build a career. She called me in New York and told me that he had been admitted, tubed, and was on a respirator.
I returned home. My brother had a very severe case of pneumonia. His chest x-rays, to quote one physician, looked as though someone had painted them with White Out. I later went to school at that same hospital and studied to be an x-ray tech. For one of my assignments I checked out his films. The school didn’t work out, but we’ll save that for another story.
His oxygen saturation plummeted lower and lower. The doctors explained that his organs were all still working well, but that they would eventually fail. One nurse pointed to his catheter bag and showed me the urine which meant his kidneys were still functioning.
It was explained to me that the respirator was set as high as it could go. The oxygen concentration being delivered to him was high. The oxygen saturation was below the level necessary to sustain him and going lower. The pulmonologist assured us that he was not going to get better. The medical staff assured us that there was no brain activity and we needed to make a decision.
My mother decided that they should turn off the machine. My dad and his wife came. The doctor and a nurse came in the room and the doctor turned down the dial on the machine. He explained that he was turning down the supplemental oxygen and left the machine on. The machine would continue to fill my brother’s lungs with air from the room.
I sat next to him and held his hand. He was very swollen and a fungus had started attacking his eyes – likely a side-effect from the massive antibiotics they had given him to fight the pneumonia.
The monitor beeped with every beat of his heart, and I watched the line trace across the screen.
The doctor turned down the dial. My brother’s face turned immediately bright purple. The beeps began to slow down and the predictable line began to zig-zag across the monitor unpredictably.
His body arched up from the bed. The doctor explained that the muscles were in spasm from the lack of oxygen.
My father left the room.
Soon the spasm settled. The line went flat. The beeps were silenced and we made plans for his funeral.
My brother was gone.