Requiem for Compassion

By Joni Halpern

We must have been only five and six years old, my sister Rosie and I, when we were enlisted into providing care for our mom, who was only 35 years old and suffering from ALS (Lou Gehrig’s Disease).

That was back in 1954, when there was no such thing as Medicaid, In-Home Supportive Services, or affordable health care. There were no food stamps, no child care, nothing to help a father working six days a week to make a living that would give his kids a chance and pay for the care his wife needed.

We were a family of six siblings ranging in age from babyhood to 10 years old.  Our baby sister had already been sent to live with relatives, because my mom could not hold her after she was born.

My dad was a carpenter who worked at the California School for the Deaf, just across the street from where we rented a small house.  He had a group health insurance plan, but it required co-payments; some treatments and medications were not covered at all.  He took us to the doctor as little as possible, relying on old Italian home remedies my immigrant grandmother had taught him.  If we got well, the remedies were said to have worked.  If not, things got worse, and finally, Dad would be forced to take us to the doctor.  But most of the time, we waited it out, missing school, with no one to watch over us except the lady next door, who would peek in the living room window and ask my older sister (who missed school to care for us) if we were okay.

For my mom, though, the diagnosis of ALS was devastating.  The disease took hold of her in stages – first a stumble, then a fall, then her arms were too weak to hold things and her hands too weak even to grasp a fork.  Soon she was in a wheelchair, then on a gurney, then an invalid in bed, unable to move or speak, unable to call for help.

Because there was no in-home care and no money for placement in a care facility, my father had to figure out a care plan for my mom while he worked full-time during the week, and additionally on many Saturdays, because his regular job paid so poorly.  He set up a timetable under which Mom would be intermittently checked on by neighbors when we were at school and he was at work.  Between times, she was all alone.  There was no other way.  After school, my sisters and I (my brother was too young) would take turns sitting on a little stool beside my mom’s bed, with orders to run the half mile to where Dad worked if Mom seemed distressed.

On Saturdays, Dad would take the longest shift watching over my mom, unless he was working; then our shifts would lengthen.  On Sundays, he piled us into the car, lifted my mom and carried her to the back of our little station wagon, set her on a pad and took us all to church.

One afternoon, I was playing with my sister Rosie in the yard.  We were having a great time, laughing and running, tumbling and jumping.  Kids.  We were just little kids.  My older sister called Rosie into the house for her turn to watch over Mom.  Rosie went silently without a fuss.  But I was angry that our fun was being interrupted.  After a while, Rosie came out and told me it was my turn to go inside and sit with Mom.

I did not want to take my turn sitting on the stool with no one to talk to.  I wasn’t even sure how to tell if my mom needed anything.  So I whined and complained that I shouldn’t have to do this.  Why did we have to do it?  Why couldn’t some adult do it?

I stomped my little feet into my mom’s bedroom, still whining.  I sat down on the stool with a huff.  From my vantage point, which was lower than her body, I could only see a profile of my mom, lying completely immobile, barely breathing.

“Why do I have to do this?” I complained aloud. “I want to play.  It’s not fair. Why can’t somebody else do this?”

I turned away from Mom for a moment, but then remembered I was supposed to see if she was okay.  So I turned back toward her and looked up.   Tears streamed silently down her cheek.  Even at that age, five years old, I knew I had hurt her.  I knew she was broken-hearted that her suffering had created a burden on me.

I can still see the tears running down her parchment skin, dropping on her pillow.  I was too ashamed to speak.  I sat there for the rest of my watch wishing I had never spoken the words.

Today, we as a nation are about to embark on a terrible journey.  Our Congress is intent on passing the One Big Beautiful Bill Act [since renamed].  It is a piece of legislation that steals food from the mouths of people who are hungry, medical diagnosis and treatment from people who earn too little to pay, and caregiver services from those who are disabled by illness, physical or mental conditions, or by age.  It steals from the old, the young, the working poor, the people whose sweat and courage have built this country and the seeds of the big corporations and extremely wealthy individuals who now wish to devour us.

We have made a decision as a nation to dispense with compassion as an element of public policy.  And this we have done to help those who have no need of more money, those who are awash in riches, whose children and grandchildren will never live long enough to exhaust their ancestors’ wealth.  We have buried the soul of our decency in order to nourish the insatiable greed of corporations and individuals of extreme wealth who could care less whether their profits come from the United States or from any other country in the world.

For years, the political wags from both parties have blabbed on and on about the national debt and deficit.  They constantly pitch the idea that the reason we have individuals and families struggling economically in this country is that we are pouring money into caring for people who should be able to take care of themselves.

In other words, as a national catechism, we have adopted the opinion I held as a five-year-old.  We are busy with our own interests, our own diversions, our own agendas.  Why should we be asked to help those in need?

At least I had the decency to be ashamed of myself at age five.  Ashamed that I had let my dying mother know that she was a burden to me.

For the past 30-some years, I have served low-income individuals and families in an effort to ease their pain, help them find the resources they need to take another step, get through another obstacle, overcome another trauma.  Those of us who work in all fields helping others know that the so-called “entitlements” – the programs of food, education, job training, medical care, child care and other supports that a great many Americans need at some point in their lives, however temporary – are not charity.  They are not stealing the profits of the rich.  They are not picking the pockets of taxpayers.

These programs are necessities for a nation of nearly 350 million people who cannot possibly all reach individual wealth that will be great enough to carry them through all of life’s challenges.  These programs are investments in the potential of every person who lives in this country.  They have been chipped away by generations of tight-fisted seekers of maximum profit falsely identified as conservatives.  While those who need a little help in life have been falsely identified as “dependent” and “lacking in personal responsibility.”

We have given up on compassion in this country.  Remarkably, even the so-called fundamentalist Christians have given up on it.  They apparently are thrilled with the choices their champions have made.

If we wanted to, we could see the pain our fellow Americans suffer, but instead, we look for relief in the lies and propaganda of political manipulators who want us to think each of us as an individual is the most important person in the world.  We owe nothing to anyone;  we should seek only the acquaintance of those who can further our individual ambitions, dreams, and acquisition of wealth.

For our fellow Americans who really need us, however, we as a nation have all the compassion and caring of a five-year-old who is angry that she has been called in from play to sit at her dying mother’s side.