On April 30, 2016, I escorted my wife to a charitable dinner where she was one of the principal speakers. She was there to tell her story in order to generate donations for The Hochstein School of Music and Dance. Here she is playing piano on stage at Hochstein in their main Performance Hall on June 15, 2016, a short work by Friedrich Kuhlau, his Sonatina in C Major Op. 55 No. 1:
But before I tell you the story about why, about two months earlier, in late April, Clara was up on a brightly lit stage in a large ballroom at a local country club to give a speech to Hochstein’s potential donors, let me first provide a little context. Why digress? Because I consider what she did that night should be important to you as a symbol of so much that is wrong with American society in the 21st century.
There are mountains of statistics that demonstrate the abuse, cruelty and indifference America metes out to the most vulnerable people in our country. However, statistics don’t tell the whole story, nor do they provide a full picture of the misery so many face in this country on a daily basis because our government ignores their needs in favor of “other priorities.” So with your pardon, let me begin with a few personal anecdotes.
Last year about this time, I walked into my favorite coffee house, where everyone knows my name (hey, I always tip — that helps). One of the baristas, who was on unpaid sick leave for a knee replacement, had suffered a devastating loss. Her husband died unexpectedly after suffering a heart attack in his sleep. His kids found his cold body in bed while she was in the hospital. Imagine the horror of that. Really, take a moment and imagine it.
She lost not only someone she deeply loved, but also all the income he contributed. These weren’t wealthy people. His life insurance policy wouldn’t even cover the cost of his funeral. Her co-workers put out two cards for customers to sign offer her our condolences. But that is not all she needs. She needs money to pay her bills and attempt to fund her kids’ college education because you damn well know her kids won’t be going to any college if they don’t have some money set aside. And Starbucks last year made it even more difficult for her, by increasing the cost of her health insurance.
In short, she was reduced to begging people to give her money. I asked one of the baristas if she had a GoFundMe site set up, only to learn the answer was no. This woman is middle-aged and works two jobs when she is able to work. I suggested someone help her do that ASAP. I contributed something to help because I know her. She talks to customers like they were her friends, always smiles even when she was in pain, and has a great laugh. But she needs far more than a few handouts from customers and friends if she is going to survive the loss of her husband.
This wasn’t the first time I’ve come across a person begging for money because of a medical catastrophe. Back in March 2016, at the local supermarket’s deli department, where, I am a frequent customer, I learned that the younger brother of one of the workers behind the counter has a rare form of cancer. This young man was only 29 when he was diagnosed. Despite having health insurance, the part of his medical bills for which he was responsible at that time already exceeded $50,000 and no doubt by now has increased. He did have a GoFundMe site, so I went online and contributed. Now I have a friend for life in his older brother, just for making a meager contribution to help out.
This is what many Americans have been reduced to doing in our country today. Using GoFundMe as their safety net when things go bad. Millions of people have no chance at finding a good paying job with benefits. The deli section worker with the sick brother told me he couldn’t get more than 30 hours a week (at wages well below $15 an hour). Why? Because then he would qualify for healthcare benefits from his employer. The employer mandate under the ACA only requires businesses provide health insurance under the ACA to “full time” employees, i.e., people who work more than 30 hours a week or 130 hours in the aggregate a month. Go to any retail or food establishment and ask how many “full time” employees they employ. I’ll bet you’ll discover that very few have more than a handful who qualify, usually supervisors and store managers.
However, even a full time employee, such as my son, often makes less than ten dollars an hour. For health care, he must rely on Medicaid because its coverage is far superior to what his employer offers. Fortunately for him, New York State expanded Medicaid under the ACA, unlike many states. Of course, the Republican health bill currently before Congress will drastically reduce Medicaid in order to pay for tax cuts for wealthy Americans.
The high cost and quality of our health care coverage is not the only expense that millions of workers face. Even college graduates lucky enough to find work in their field incur expenses their parents never had to worry about. Unless they are one of the fortunate few who work in finance for a hedge fund, big bank or investment firm, the wages and salaries many people earn don’t go very far. Often their rent is ridiculously high thanks to the rising cost of affordable housing that has increased dramatically over the last ten years. That’s one reason why many young people, including my son, live in their parents’ homes. In addition, these younger workers often carry a high amount of student loan debt that must be paid every month, a debt, by the way, that is not dischargeable in bankruptcy.
Thus, it’s hardly a surprise that millions of people are only one calamity away from plunging into the depths of poverty. We have social mobility all right, but for most young people its downward mobility, unless they were born into wealthy families with connections. They can’t save money because expenses and debt eat up most of what they earn — they have no rainy day fund set aside should their life suddenly hit a rough patch. And the same thing is true of a large section of the “working class” whether they wear blue or white collars. Indeed, how many people do you know who truly fit within the so-called middle class?
Take the case of my son, who at 28 is living at home and cannot find a well paying job despite two degrees. He makes a little over $9.00 an hour. Until recently, he worked only only 20 to 28 hours a week. You do the math. Unless he lived with us, he couldn’t afford an apartment, food, clothing or pay for basic utilities. We aren’t talking about wifi and cell phone service, we’re talking about rent, electricity, water and heat during the winter.
My son’s saving grace? He has no student loans to pay off. He had a full tuition scholarship and his grandmother paid all his other expenses. He owns his own car only because his grandmother gave him her old one.. The gifts we give him at Christmas and his birthday? Cash, because that’s what he needs. He pays us some rent for living here and for food, and he has managed to save a little money — mostly because he doesn’t drink, hit the bars on the weekends, doesn’t date and lives very frugally. That’s a far different life than the one my generation experienced.
In my youth, though middle class families were larger, and there was usually only one breadwinner (Dad, of course), almost all middle class kids managed to get a good education. Most who qualified could afford college, and upon graduation were able to get decent paying jobs. Even non-college grads could get well paying jobs in the manufacturing sector.
The people with who I I grew up were not rich, but they had “nice things.” Many bought new cars every five years or so. They had their color TV’s and washing machines and refrigerators and what not. Hell, I even had a summer job between my sophomore and junior years in college (a union job I might add) that paid me $6.78 an hour for being a janitor at a candy factory. This was in 1976. After adjusting for inflation (using the Social Security wage index) I was effectively earning $34.15 an hour in 2014 dollars. Know any college kids earning that kind of money for janitorial work today?
Our low income, high-cost world is the new normal for so many people his age and even those in the generations that preceded him Two highly educated cousins of mine in their forties still can’t find good paying jobs in their fields of study despite their advanced degrees. That deli worker I spoke to you about, the one with the brother who has cancer? He’s married and in his thirties, but he and his wife are still living with his parents. My daughter’s best friend from high school is making under $9.00 an hour working for Goodwill while living at home.
But at least they have jobs. The effective unemployment rate among individuals 18–29 years of age is 12.8 percent, and even higher among minority youth. And despite the ACA, tens of millions of Americans still have no health insurance. Of those who do, many have crap policies with high deductibles ranging anywhere from $3000 to as much as $12,000 or even higher before the insurance will cover anything. Not to mention what those health insurance policies do not cover.
Which brings me back to April 30, 2016, the night when my wife gave a speech to a crowd of local blue-bloods at a charitable event. Here’s why she was up there on that stage talking about some of the most intimate details of her life.
In 2016, my wife was treated for pancreatic cancer. Luckily, they caught it early and she survived. Not so fortunately for her, however, she suffered severe brain damage as a result of the then standard chemotherapy treatment she received. I’ll let her explain it in her own words, direct from her prepared remarks of the the speech she delivered at a charity gala for the Hochstein School of Music where she receives music and dance therapy rehabilitative services.
My brain did not bounce back. In fact, as months progressed, I became less and less able to function in my environment. I could not read without great difficulty, I could not follow favorite TV shows, I could not remember a thought or idea from inception to expression. I could not multi-task in the sense that ignoring an irrelevant noise AND maintaining a coherent thought was multi-tasking. I could not process the normal goings on in my home with husband and two teenagers. I could not keep up with real time. Everything that I logically knew should not be threatening, was terrifying. I was like a cornered animal whose instinct was to freeze, flee, or fight. I was unpredictable to others, volatile and explosive. I felt myself sinking into insanity, and I had to protect my family from myself.
I essentially lived in my SUV for over two years. I left home before sunrise and returned to be fed and to sleep. I sat by Irondequoit Bay, or in favorite snow covered park. I listened to WXXI AM, and I wrote incessantly. I could not read what I wrote, but I kept writing — as if the words on the page were validation of my continued existence. My doctors kept assuring me that I was not going insane, but I felt that if I were not already insane…. I would be driven to it by my cognitive existence.
It was during this time that Mark Noble and his team at the U of R Medical Center published groundbreaking research on the effect of a chemotherapy agent I took, and how it can cause delayed onset brain injury through demyelination of brain neurons, with the corpus callosum as a major target . This was incredible news! In 2009, I underwent comprehensive neuropsychological assessments, which confirmed that though I retained my intellect, my cognitive processing had been catastrophically slowed, amongst other findings. My reading rate had dropped to the first percentile, despite my comprehension remaining at premorbid levels. […]
In 2013, my husband heard Maria, Hochstein’s Chair of the music therapy department, on WXXI. He spoke to her on the show, and as a result I found Hochstein. After my initial work with Maria, I began taking both piano and dance lessons. I had, in my younger years been a pianist, and a decent dancer. The work that I have been doing with [redacted], and [redacted] has not been to specifically play piano better, or to dance better, but to re-ignite /trigger / develop dormant or inaccessible but functional pathways within my brain to enable those to strengthen and compensate for what I have lost. Both activities have helped me to be able to multitask at an exponentially greater level. Consider the act of dancing: One must count beats, move feet, move body, move hands, and remember to breathe, simultaneously with some modicum of grace. When I started with Maria, we were counting [the] number of steps I could take before faltering while I also focused on my breathing. We celebrated when I reached double digits. When I started with Maria in 2013, I would have been unable to enter this room without becoming completely overwhelmed, disoriented, and in need to run from the barrage of stimulation that is here.
So, why did my wife, in what was a very emotionally stressful environment for her, stand up on that stage and provide intimate details of her life and her medical condition to hundreds of strangers,? Why did she bare her soul to an audience of wealthy, financially secure people, people in the upper one percent of wealth or higher? Because the Hochstein School needed her to beg for donations from the upper crust of my city, that’s why. She had a compelling story to tell, and a reason to tell it. Here’s the last thing my wife said that night:
I have been at Hochstein for 3 years, and I have been able to do what I do here only as a result of its generous financial assistance. Health insurance does not cover cognitive rehabilitation, and I am on a fixed income. Hochstein is my “magic pill,” and I hope to continue my journey here. I thank you for making that possible.
Health insurance rarely covers cognitive rehabilitation services. So she begged on her own behalf, and on behalf of all the people Hochstein serves. She begged for money from rich, powerful, well-connected people, almost all of them Republicans or wealthy, fiscally conservative Democrats. I’m sure many of them consider themselves deeply religious, yet what Clara was asking from them probably amounted to a pittance. Tickets for the gala cost $175, and suggested, but not mandatory, donations ranged from $2,500 to become a “Friend Sponsor” up to $25,000 or more to be designated a “Platinum sponsor,” though few actually contributed that much. All this effort in order to benefit the relatively few people to whom Hochstein provides financial assistance; poor, disadvantaged and/or disabled children and adults.
These well off individuals did give Clara a standing ovation when she finished. I was extremely proud of her. I knew, unlike almost everyone else there, just how difficult it had been for Clara to compose and then present that speech to all those people in that crowded ballroom. The presentation she gave would have been impossible for her to pull off as little as two years ago, without suffering a panic attack and the very real possibility of a meltdown on the stage. My gratitude for the services provided by her dedicated and hard working music teacher, dance instructor and musical therapist knows no bounds. They have done so much to bring about substantial progress in the recovery of Clara’s cognitive function. Even though she will never fully recover fully from the brain trauma she suffered, the benefits of their work have been truly astounding and vastly improved the quality of her life.
Nonetheless, my wife was put on display that night to tell her story solely to elicit sympathy among the wealthiest people in our city. Her story was intended to evoke an emotional response so they would voluntarily donate to an institution that offers therapeutic benefits to Alzheimer’s patients, and opportunities for a wide range of less fortunate people, many of them kids from underprivileged communities, who otherwise would have no outlet for their artistic ambitions and no chance to to develop their talents.
Sadly, this is what we have become as a country – a begging bowl society. A society of debtors effectively ruled by the wealthiest .01 percent, or as they see themselves, “our betters.”
How did this come about? Because both major political parties, who rely so heavily on financial contributions from large corporations and extremely wealthy individuals, have worked tirelessly to create this heartless, non-egalitarian society. Since the advent of the Reagan Presidency, we have seen our social safety net shredded. Our society can easily afford a health care system that covers everyone, which would be the equal of those that exist in other developed nations. Indeed, universal health coverage would rein in rising costs and provided a net benefit to everyone. But every attempt at providing truly cost-effective universal healthcare in America has failed. This, despite the fact that countries that provide coverage to their citizens as a universal right spend far less of their gross domestic product on health care than does the United States. And those countries provide quality of care that equals, if not exceeds, what we have in the United States.
Instead, our political class chose to placate the pharmaceutical and insurance industries and protect the profits of mega-corporations. The result is a society where online donation sites like GoFundMe have exploded in growth over the last few years to meet the needs that once upon a time our social safety net, and a generally robust economy, where good paying jobs were plentiful, provided. Our political leaders created untold misery for millions so large multinational corporations can evade paying taxes on trillions of dollars of profits. Meanwhile, ordinary people suffer catastrophic emotional and financial losses through no fault of their own. They have been reduced to paupers who must rely on the kindness of wealthy strangers (who of course get to write these donations off as charitable deductions on their income taxes).
Before my wife gave her speech at the Hochstein gala, she asked me if I thought telling her story would make those in attendance want to donate. I said I didn’t know, but that it would make me want to contribute if we could afford to do so. What else could I have said? Luckily, the event organizer later came over to Clara to let her know the 2016 Hochstein Gala raised the most money in its history that night. She attributed much of that to Clara.
Yet for all the good feelings hearing that news generated, I felt shame for our country. People shouldn’t have to rely upon charity to get basic needs met. Because all the charity in the world won’t make up for what our government could and should be doing for the vast majority of its citizens. Instead, our elected officials invariably serve the interests of their richest donors at the expense of the needs of ordinary citizens.
Too many vulnerable Americans are too often at the mercy of people who must be wined and dined and chatted up and made to feel important and extra super-special and morally superior simply for doing the right thing. In other words, simply for doing what those who have benefited the most from our society should do for those who, through no fault of their own, suffer under the burden of poverty, fewer good jobs, lower incomes and rising costs. As the richest nation in the world, America could be so much better than this.
But we aren’t, are we?