A Morose Echo


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.

Jimmy and Me, 1992.

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.

 

 

 

 

 

 

At Bedside.


On the day my mother was inducted into home hospice care, after the oxygen machine was delivered, and the table on wheels positioned over her bed, she asked me to sit down and go over a few things.

She said she woke up every morning, not thinking of death but gradually, as the day wore on, realized she was not going anywhere. Her cancer was in Stage #4.

Inoperable, untreatable, unceasing, spreading and unstoppable.

She asked me to hold her hand. And we spoke of what I would do with the apartment after she died. And I told her how I would keep the photo albums and place them in my house for posterity. She said that my brother and his wife might want her sofa. I knew they didn’t. But I kept silent and listened.

She wanted to know if the money was holding out, and she warned about overspending.

I broke down, as I do often, sometimes for much lesser reasons, and told her that I would write about her, and those sacrifices she made; the long, hard, uncompensated work of a woman who was a wife and mother for 54 years and often neglected her own pleasures waiting and tending to others.

Does it count for something if you remember your mother throwing a ball back and forth with your retarded brother? Running up and down the stairs carrying laundry? Screaming at me for crashing a car? Telling my dying father that she had so much to say to him.

She told me she did not want me to cry and she tried to steer the conversation back to where I was going that night, and what I might do on the way back to Van Nuys.

She spoke next of what she might wear when she was dead and laid out. A Bathing Suit is what she proposed. But then I reminded her that she would be cremated and there would be no casket and no outfit to consider.

Calmly and tearfully, eloquently and closely we tread on an event not far in the future, a dark and silent condition, irreversible.

That most feared moment, interrupting the pressing banalities and bills of life.

 The Young and the Restless tivoed.

Red grapes on sale at Ralph’s.

 Can you put another pillow behind my head?

 Can you get a glass of water for me?

 No I don’t want oxygen!

 When will the landlord be told that his tenant had died?

 Why should you care who visited your mother as she lay ill?

For now, the woman who gave birth to me still spoke.

 

The Virtual World


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Yesterday was a beautiful day up on the sixth floor of UCLA’s Santa Monica Oncology Center as we brought my mom up into a sun-filled room with dozens of reclining leather chairs and she was connected by vein into chemo.

The wall of glass windows looked west to the shimmering ocean as the 80-degree sun blew hot and the palms swayed in the wind.

Instead of needles, blood, screams and suffering, there were copies of Martha Stewart Living, November 2010: beautiful show dogs photographed in sepia, apple pies set on wood tables, silver and purple leaves pressed onto canvas for a do-it-yourself art project. I saw Calvados and potatoes au gratin, buttery grilled beans on 18th Century Limoges china, tulip bulbs laid into the soil on a Connecticut farm.

In my hands were two bags from FLOR, full of colored carpet samples I had gathered for a client, purple and brown, green and yellow squares, laid out on the wall ledge so my mom could tell me which ones she liked.

My brother was listening to a podcast, partly; answering emails, talking to his wife, and texting his business partner as the medical anti-cancer fluid dripped and dripped, into my mother’s bloodstream, and he talked of idiot entertainment execs and the virtues of a new calendar app.

The nurse, an Asian-Californian woman, in a tan Levi’s corduroy jacket over dark brown scrubs, came to change the tube; her long, straight black hair shining in the bright sunlight, her smile warm and genuine, caring, here in the chemo spa; where all voices were subdued, all expressions were smiles, and all expectations were high.

To combat nausea, the doctor prescribed the Martian sounding Onandestron.

After the tube came out, my mother said, “That’s it?”

And the caregiver, the nurse, and the two sons wheeled her out of the sun, and into the dark elevator, down to the red Ford Focus waiting in the garage.

2/19/14


52 years ago, in Park Ridge, IL, a 28-year-old woman labored in Lutheran General Hospital for 20 hours and gave birth to me.

Yesterday, we were together again, at 8:30am, inside UCLA Medical in Santa Monica, CA to hear the news that her cancer had spread from lung to bone and most likely would kill her within months.

There were tears in the office, and treatment talked of but not promised, because there was not much that could be done to arrest and blockade a disfiguring and painful disease. Aggressive killing cells, moving fast, were taking over every bodily pathway and steering this woman, my mother, into death.

Back at the apartment, I called 90-year-old Aunt Millie, my mother’s sister in Chicago, to tell her a grave prognosis. Simultaneously, we burst out crying, she wailing that her little sister was not supposed to die before her.

Later on, in the sun, I sat with my mother in the open door of her apartment, by her knee, as she spoke of her disbelief. I told her I didn’t want to see her in any pain, that if she had to die, it should be quickly.

To wish your mother to die faster seems obscene, blasphemous, selfish.

But every choice pondered, in treatment or without, lead into the same dead end: 2 months, 4 months, 8 months…

A vulture phoned later, a cousin who traffics in crystals and angelic communications. He spoke, like an infomercial, of “amazing” cures down in Mexico, and “unbelievable” results.

Topped in yarmulke and baptized in mysticism, he droned on in monologue, flavoring his pitch with prestige (“Harvard” and “M.I.T”), cliche and promise (“Think outside the box” and “alternative treatment”). Gross and unrelenting in salesmanship and insanity, the voice of this bearded charlatan claimed godlike knowledge that might save a dying person.

But the huckster claiming the miracle cure has no power over us.

Our immediate family was inoculated in skepticism, disbelieving in the afterlife, doubtful of religious fervor, resigned to believe that death is death and without merit except in its extinction of pain.

Dreams of heaven were not on my mind, only the distant past.

I saw again the Super 8 movies taken by my father as my mother pushed a stroller around Indian Boundry Park in Chicago in early Spring, her black hair and skirt blowing in the March winds. I saw days spent with my younger mother in love, the warm breath of life, memory, kisses, spaghetti sauce cooking on the stove, the days spent on the porch watching the rain pour down on Birchwood Drive; I also recalled the explorations into old neighborhoods, the angry fights, the dramas and battles over bad report cards, the shame when I came out and my eventual acceptance and her grudging respect, the fierce warrior who always thought my best days were still to come; she with her inexhaustible conversations and inability to stay silent long, how can her voice go away! How can my mute words replace life itself, extinguished cruelly and helplessly by the biological necessity of dying?

2/19/14: a dark day, an unforgettable birthday. It ended, as many days in Los Angeles do, eating sushi. Me, my brother, my sister-in-law and my 7-year-old nephew went out to dinner, drank sake and split raw fish rolls. And I blew out a single candle on top of vanilla ice cream and fried bananas as the entire restaurant sang Happy Birthday.

On Hold


Sometime around Noon on Monday, January 13th my mother, 80-years-old, scoliotic but sentient, walked from her bed to bathroom, and tripped over a blanket.

She lay on the floor, fully conscious, within reach of her Life Alert. Her phone rang multiple times, mostly from her daughter-in-law trying to reach her to confirm a Tuesday medical appointment. She tried to pull herself up but could not. Her pride stopped her from pushing the green button.

20 hours later, wrapped in pillows and suffering dehydration and two fractured vertebrates, emergency services found her alive and took her, by ambulance, to Marina Del Rey Hospital.

A scan later revealed a spot on her right lung. Then a biopsy confirmed aggressive “poorly differentiated” adenocarcinoma or lung cancer stage 2, in her lymph nodes as well, not removable by surgery or treatable by pill, and perhaps not (pending oncology appointments) by chemotherapy or radiation.

For a few weeks, prior to her fall, she had a hacking cough, something many people in dry and smoggy Los Angeles suffer from. Her weight loss seemed to come from paltry eating. Now the benign explanations are stricken from our memory.

After her hospitalization, next to a vigorous and beautiful California woman of 90, she went to the Mar Vista Country Villa, a palm shrouded facility where the nearly dead lay in rooms along hallways sprayed with chemical air fresheners, and nurses are summoned, slowly, by red button, to change patients, bathe them, puff up their pillows, and place beige trays of tan food in front of weak hands, or feed them, as they did my mother, when the sick are too sick to lift a fork.

There was no sleep at Mar Vista Country Villa, interrupted day and night by screams, moans, florescent lights, coughs and agony. The torturously and humorously named “rehab” center assigned a doctor who never met my mother, a man named Sheikh, who stormed into her room one night, woke her up from a deep sleep and yelled, “Hurvitz! Hurvitz! I read your report. Not good. I give you two years at most. I think maybe the Parkinson’s drug you took gave you cancer.”

As she lay in her bed for two weeks we (my brother, his wife, and I) furiously ran defense, interviewing and hiring home care workers, making appointments with doctors, gathering her financial information and assuming power of attorney over her life, financial and medical. Furniture was removed from her apartment, replaced by walkers, wheelchairs, bedpans, shower chairs, elevated toilet seats, grab bars and adult diapers.

And insurance, that lethal octopus of life entangled with death, the overseer of it all, it went into production, turning out bills and invoices and records, demanding attention for its deadlines and payments and vendors, doctors, lab tests, and deductibles.

And we are only now three weeks and two days since the fall.

And I cry almost every day, sitting in traffic on Sepulveda, walking through Ralphs, riding down in the elevator from her apartment, confronting dread and loss, preparing for that unthinkable and uninvited hour, when the woman who gave me life, dies.

Another Date on the Calendar


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Dad in hospital., originally uploaded by Here in Van Nuys.

Three years ago, October 13, 2006, I was on a plane traveling from Los Angeles to New Jersey to see my father and mother.

My father, at that time, was battling a neurological illness that was slowly robbing him of his ability to speak and walk.

There was, and is, no cure. And it eventually killed him.

But that October, back east, there was a slight glimmer of pharmaceutical hope: some drug that was given to Parkinson’s patients seemed to help my father. He was on it for a few weeks, progressing. And then he was not. One morning, he suddenly went into a stroke like condition and then into the hospital.

I took the red-eye the night of October 12th, and before I boarded the plane at LAX, my brother Rick sent me a text and said that his wife, my sister-in-law Pri, was giving birth. She went into labor that same night, the night I was on the plane traveling back east, back in time, back to Ridgewood and Woodcliff Lake and all those towns in Bergen County where my parents had lived since 1979.

When I landed around 6am at Newark, a car picked me up and took me directly to Valley Hospital in Ridgewood. I found my mother sitting next to my father, who was awake and resting in a room, in a bed, next to a north-facing window.

I broke down and cried and I think all of us were crying. I was so tired, and so happy to see my father alive, even as I was ripped up about his weakened condition.

I had just bought my first camera, a Nikon D70. I picked it up and shot a second of my father’s life in that weak and delicate sunlight that barely illuminated the room.

That he left this hospital within a few days was miraculous. Back at home, he had the after effects of the episode, and at times his hands would tremble like a post-earthquake after shock. Yet he would look down at his shaking with dispassionate objectivity and a faint smile.

In Los Angeles, my nephew Ravi entered the world and there was joy and new life on the other coast. But that October is indelibly marked on my calendar as a season of impending grief and the realization that an epoch and life and existence would end quite soon.

One Sunday, we took a car ride with my father, who could not walk, but used the walker and a portable wheel-chair. We drove across the Tappan Zee to Armonk and stopped for lunch in a town filled with pumpkins, white houses and children on bicycles.

Then we drove up some wooded road, lined with stone-walls, passing horse farms and parkland preserves. We were heading up to see where Bill and Hillary Clinton lived, in Westchester County, just as we once had stalked Nixon in Saddle River, NJ.

I apologize to Los Angeles, where I now make my home, but despite the efforts of “Mad Men” to create a fictional pathology of life in the suburbs on New York, there is still a sublime and natural beauty there, historic and meaningful towns and an un-crowdedness that soothes souls in pain. When you are sad back there, you can take a drive in the country past reservoirs, farms and fields. And that is just what we did that Sunday afternoon.

Those days, spent in autumn with my late father, were among the most meaningful of my life. I meant something to him and I will never ever have the time to spend with a living father again.