Literally the other day, I walked into my favorite coffee house, where everyone knows my name (hey, I always tip – that helps), only to learn that one of the baristas who had been on unpaid sick leave for a knee replacement her insurance company finally approved (or maybe she borrowed money from family and friends, I don’t really know), had suffered a devastating loss. Her husband died unexpectedly this week after suffering a heart attack in his sleep. His kids found him in his bed because she was in the hospital. Imagine the horror of that. Really, take a moment and imagine it.
And now, she has lost not only someone she deeply loved, but also all the income he brought in. They weren’t wealthy people. His life insurance policy won’t even cover the cost of his funeral. Her co-workers had put out two cards for people to sign offering condolences. But that is not all she needs right now. 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.
In short, she has been reduced to begging people to give her cash. I asked one of the baristas if she had a GoFundMe site set up, but the answer was no. This woman is middle-aged and not particularly active on the internet (she works two jobs when she is able to work). I suggested someone help her do that ASAP. One way or another, I will find a way to dig in my pocket to contribute something to help because I know her. She talked to customers like they were her friends, always smiled even when she was in pain from her knee, and has a great laugh. But she needs far more than a few handouts from customers and friends if she is going to survive this.
And this isn’t the first time I’ve come across a person begging for money because of a medical catastrophe this year. Back in March, at a local supermarket deli, where, again, I am a frequent customer (I’m known as the “egg salad guy” because that’s what I always order), 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 exceeded $50,000 and that total is likely to increase. 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 we have been reduced to doing in our country today. There are no longer any good jobs available for millions of people. The baristas and the deli section worker I know have told me they can’t get more than 30 hours a week (at wages well below $15 an hour). Why? Because then they would qualify for benefits from their employers, like, you know, mandated health care coverage under the ACA for “full time” employees. Go to any retail or food establishment and ask how many employees they have that are full-time (i.e., who work more than 30 hours a week or 130 hours in the aggregate a month). I’ll bet you’ll discover that very few have more than a handful who are considered “full timers,” usually only store managers.
And even if you are a student graduating from college with a marketable degree, unless you’re going to work for a hedge fund, big bank or investment firm, your salary isn’t going to go very far to cover you housing costs, other expenses and student loan debt service. Millions of people are 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 you know who truly fit within the so-called middle class?
In my youth, middle class families were larger, there was usually only one breadwinner (Dad, of course), and yet all the kids managed to get a decent education, most who qualified could afford college, and most who got a degree were able to get a decent paying job. Even non-college grads could get decent jobs. The people I grew up around 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?
And that was when the minimum wage of $2.30 an hour, i.e., effectively $11.58 in 2014 dollars. My son, who at 27 is living at home and cannot find a full-time job despite two degrees, makes a little over $9.00 an hour. He worked, until recently, only 20 to 28 hours a week, tops. You do the math. Unless he lived with us, he couldn’t afford an apartment, food, clothing or pay for basic utilities.
His saving grace? He has no student loans to pay off as he had a full tuition scholarship and his grandmother paid all his other expenses. Oh, and grandmother gave him her old car (newer than mine by nine years, actually) when she decided she didn’t like it. The gifts we give him at Christmas and his birthday? Cash. His biggest expenses are gas and car insurance. He pays us some rent for living here and for food, but 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. His healthcare changed to Medicaid in April, 2015 (thank-you NY for accepting Medicaid expansion) when he timed out of our family coverage upon turning 26. Oddly, that was a relief, since now if he has a medical emergency that might run into the tens or hundreds of thousands of dollars, it’s fully covered. Under our family policy, we would have been on the hook for 20% of the cost, after meeting our yearly deductible, of course.
And this is the new normal for so many people his age. That deli worker I spoke to you about, the one with the brother who has cancer? He’s married 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 healthcare insurance coverage. 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 to what I’ll be doing this evening. I will be escorting my wife to a charitable event dinner. Here’s why. In 2016, my wife was treated for pancreatic cancer. Luckily, they caught it early and she survived the cancer. 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, words that she will be repeating tonight on stage at the 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 will my wife, in what will be a very emotionally stressful environment for her, be up on that stage talking to hundreds of strangers, providing intimate details of her life and her medical condition to them? Why will she bare her soul to what will be essentially an audience of wealthy, financially secure people, people in the upper one percent or wealth or higher? Because the Hochstein School will be using her as a prop to beg for donations from the upper crust of my city’s society, that’s why. She has a compelling story to tell, and a reason to tell it. Here’s the last question my wife will be asked on stage tonight and her answer:
HOW HAS FINANCIAL ASSISTANCE AT HOCHSTEIN HELPED YOU?
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 does not cover cognitive rehabilitation, or at least ours does not. So, she’ll be begging, on her own behalf and on behalf of all the people Hochstein serves. Begging rich, powerful, well-connected people, almost all of them likely Republicans or wealthy conservative Democrats, no doubt many of them deeply religious, to give what amounts to a pittance – (tickets for the gala cost $175, and suggested, but not mandatory, donations range from $2,500 to become a “Friend Sponsor” up to $25,000 or more to be designated a “Platinum sponsor”) – in order to benefit the relatively few people to whom Hochstein provides financial assistance, all of them poor, disadvantaged and disabled children and adults.
This is what we are now as a country. A begging bowl society.
A society that the establishments of both major political parties have worked tirelessly to create over the last 30 years as we have seen our social safety net shredded rather than strengthened. A society that can afford a single payer health care system such as the one that exists in many other developed nations, one that would have reigned in rising costs, but whose politicians chose to placate the pharmaceutical and insurance industries and protect their profits, instead. 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. A society where large multinational corporations evade paying taxes on trillions of dollars of profits while ordinary people who suffer catastrophic emotional and financial losses through no fault of their own must rely on the kindness of wealthier strangers (who of course get to write these donations off as charitable deductions on their income taxes).
A society of beggars and debtors effectively ruled by the wealthiest .001 percent. Our betters.
And people wonder why an relatively unknown, 74 year old, self-described Democratic Socialist, with little if any major media coverage, with a campaign that relies on small donations instead of millionaires and SuperPacs funded by billionaires, was able to challenge so successfully the most well-financed and deeply-entrenched presidential candidate the Democratic Party establishment has ever produced.
My wife asked me if I thought telling her story tonight would make the people in attendance want to give money. I said I didn’t know, but it would make me want to contribute if we could afford to do so. What else could I have said? We are all 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. Simply for doing the only decent thing.
In the words of Kurt Vonnegut, so it goes.
Update. Last night my wife received a standing ovation for telling her story at the Hochstein charitable gala. I was extremely proud of her since I know how difficult this was for her to compose and then present to an audience of hundreds of people in a crowded ballroom. A presentation that would have been impossible for her to pull off as little as two years ago, without being overwhelmed with stimulus overload to her brain, a likely panic attack and the very real possibility of a meltdown on the stage, or her fleeing the room as fast as she could. I want to thank her dedicated and hard working music teacher, dance instructor and musical therapist who have done so much to bring about this progress in the recovery of her 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. And of those who love her.
Hochstein raised over $41,000 last night for their financial assistance program, which helps provide these services to around 1000 students and patients, young and old. It’s a small drop in a large ocean, but it was something. Just not good enough for an exceptional society, though, don’t you agree?
