Tag: family

A doctor from Downeytown, Pennsylvania, called me last week to talk about my 53-year-old brother Jimmy, a mentally retarded adult who lives there in a group home.

Jimmy, he explained, had been on a diet and lost 15 pounds. But the rapid weight loss was sudden, not normal. And the physician observed that my brother was clingy, hanging on to people close to him, and he seemed weak and vulnerable.

But nobody knew for sure because Jimmy cannot speak in complete sentences. He is neurologically impaired and has no more articulation than a two-year-old.

After some tests it was determined Jimmy may have cancer in his abdomen and possibly in his seventh rib. A CAT scan and an evaluation with an oncologist is scheduled “to determine the source of the cancer,” a nurse later explained.

There was, in this call, a morose echo, a continuum of a family story that went silent after my mother died of lung cancer on September 1, 2014.

The description of Jimmy, holding on, grabbing someone’s arm, sensing, without understanding, that something was not quite right, reminded me of our father, who succumbed to a fatal brain illness in 2009 that first struck him when he lost his balance in 2005.

There again was that morose echo, a recollection of key people in my family: my father, my mother, and now my middle brother, struck by sickness, but first assaulted by something pernicious and internal whose development would grow to overtake their bodies and later kill them.

I had listened carefully to the doctor and took notes as he spoke, a crutch of rationality to ward off emotion.

I sat in my late morning living room in Van Nuys, where no matter the life event, the aura is cheery, the mood bright, the surfaces clean, vacuumed, and dusted.

But then the doctor asked me about my family history, exactly what illnesses my parents had, and how they died.

His medical inquiries, combined with Jimmy’s new cancer prognosis forced me to cry hard, the way I did when I knew my father was fatally ill, the way I did a few weeks before my mother died, when the tumor on her neck grew to the size of a golf ball.

I was sobbing, alone, with nobody to comfort me. My parents, who would have been devastated by the news about Jimmy, were dead.

Perhaps that was a good thing.

After I hung up I blew my nose and drank a couple glasses of cold water, exhausted at 11:30am.

To speak of Jimmy now, a brother whom I haven’t seen for many years, and carry in me some measure of guilt and helplessness concerning him, the news is bitter and factual and true.

He is my missing brother, yet I know exactly where he is.

Jimmy lived in our house from 1964 to 1978, and then he was removed, like a cancer, never to be mentioned by name, only spoken of by the city or state in which he was institutionalized, first in Milwaukee and then, later, Pennsylvania.

“Milwaukee is on the phone,” was how we handed the phone to my mother when Jimmy’s caregivers called.

My father arranged the details of Jimmy’s transfer and care. He worked with pipe in hand, composing notes on yellow legal pads in his artful script. He wrote succinctly typewritten letters, arranging with the State of Illinois and later the State of New Jersey to pay for his son’s care and housing.

In 1979, we moved from Chicago to New Jersey.

Every other year or so, my parents would steel themselves and see Jimmy. They drove a few hours from home in their brown Delta 88 sedan, down to Eastern Pennsylvania, getting lost in the hills and turnpikes, finally proceeding up that wooded, semi-circled, asphalt driveway to enter a wooden building where the residents sat all day in a dark room watching television.

Walking in trepidation, my father would feign self-assurance and place his hand on my mother’s shoulder as their retarded son emerged from the room with the flickering blue light.

One of the caregivers would bring Jimmy over, and he would jump up and down and put his hands on my mother’s face and utter, “Mom! Mom!” Each short reunion with him bore the enormity of a long tragedy.

They went to eat lunch. They went to the park. They tossed a football in the field. They went to the mall and bought him new shoes.

Those long afternoons with Jimmy were spent watching the clouds pass by, for in his presence, time was rendered meaningless, without markers or milestones.

Then they took him back to his facility.

And after a tiring, draining, sad day, both of my parents would cry in the car. They knew there was no end to The Jimmy Story, except in death, for his brain impairment rendered him a child for life. There would be no Jimmy graduation, no Jimmy wedding, no Jimmy career, no Jimmy grandchildren.

The first way they dealt with their sick child was to do everything they could to save him, to find him treatment, to keep him in our family. They exhausted their savings of $10,000 (2017 dollars=$75,000).

In Chicago, in the late 1960s, there was little treatment for autistic and retarded children. Some mental health experts blamed maternal “lack of affection” for Jimmy’s condition.

He broke dishes, he screamed uncontrollably, he bit his arm, he started fires, he pulled all the railings out of the banister, he ran away and hid in neighbors’ backyards, he jumped out of the backseat of the convertible and my mother had to chase him before he leapt into the murky waters of the North Shore Sanitary Canal.

When he behaved he still had to be watched all the time. He could never be left alone.

The second step was to save our family by taking him out of the house. And then trying, in their daily lives, to place his existence in a locked, hardened storage unit of the mind, where his screams, and their pain, were stored and quarantined.

Last week the dormant and dried underbrush of memory was set on fire again, and I was trapped, with nowhere to run, in that family melodrama produced and directed by fate.

Postscript: Jimmy’s doctor called after the latest CATscan. He reported this may not be cancer, but what it is has yet to be determined.