The begging bowl society (with update)

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.

Follow-up. Last night my wife received a standing ovations 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?

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featheredsprite's picture

She is carrying a terrible burden and is being very brave.

You don't live a life of ease, either, do you?

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Life is strong. I'm weak, but Life is strong.

Steven D's picture

She pulled it off. Got a standing ovation. Very proud of her.

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"You can't just leave those who created the problem in charge of the solution."---Tyree Scott

Bollox Ref's picture

for another Clinton White House.

Thanks for the post. Powerful stuff.

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Gëzuar!!
from a reasonably stable genius.

Azubia's picture

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I have no need to beat you, I just want to go my way."~ Malcolm Renyolds

bodysurfer's picture

And George the First wasn't considered that repugnant, comparatively.

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All I need are some tasty waves, a cool buzz, and I'm fine. -- Jeff Spicoli

I feel a bit ill every time I see one of those 'please help" signs on a jar in the convenience store, or hear of a bake sale to try to help someone pay for chemo. It's a national disgrace. It breaks my heart.

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Twain Disciple

darkmatter's picture

Pity would be no more
If we did not make somebody poor.

--William Blake (1757-1827)

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Thank you. You and your wife, and friends, are so brave. Just finished reading your essay, will have to go back and read again. Now, just wanted to thank you. Almost a miracle, to be able to survive pancreatic cancer, but devastating to have to deal with the SE's of treatment. Thank goodness your wife found something which helps her. Still, just so damn hard to live with. While at the same time, being grateful for being alive
I had a much "easier" experience, breast cancer, but still have SE's from chemotherapy. I too, during the years of treatment found comfort in music, and had no prior experience with music. A Reverie Harp: https://www.harpkit.com/category/revharp.html Simple as it is, so soothing.

Cancer has become almost too familiar a word. My hero Molly Ivins died, after a long fight with a particularly bad (IBS) breast cancer, still managed to say, in her inimitable way: ""Having breast cancer is massive amounts of no fun. First they mutilate you; then they poison you; then they burn you. I have been on blind dates better than that." We've made progress in the medical community, still so much we need to do. Medicare for all, is just a start.

Adding to your description of "begging bowl" - for me, it's "cobbling together" - trying to find the right pieces to make life work. More difficult now as we know. Find inspiration people like Jane and Bernie Sanders give so much of themselves, in the hope of creating positive change. Still holding out hope we can elect them.

thank you, again and again, for writing this essay. PLEASE remind and remind your wife how important her sharing her experience is to the others who will benefit from it. Prayers for healing, for all of us.

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Wink's picture

Yes, a 4 year degree will get you that j.o.b. at MackDonalds. And, we've gotta love (or not) 30 hours being the new "Full Time."
Rent + Utilities $10,000 /yr
Groceries 5,000 /yr
Car + Ins. 4,000 /yr

McJob @ 30 hrs. /wk... $18,000 /yr. = $1,000 short to live. $19 K being the bare min.

It takes a full time (40 hours) job @ $12 /hr. to earn the minimum $25,000 /yr to have just a smidgen of breathing room these days. The bare minimum in living conditions.
So college grads staying home with the 'rents until they find a "real job" that pays the rent.
Is this a great country or what?

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the little things you can do are more valuable than the giant things you can't! - @thanatokephaloides. On Twitter @wink1radio. (-2.1) All about building progressive media.

the other day, flogging her new book. she was nobody i'd ever heard of. she was very serious and calm and not-inflammatory. she was also given to blanket statements like, "we can't afford single payer". which, of course (though i expect she'd try to weasel out of it), translates directly into, "we can't afford primary health care for all of our people" -- because one thing that is simply undeniable is that single payer is The. Least. Expensive. Way. To. Accomplish. Universal. Health. Care.

opponents are free to blather out whatever inane downside they believe Single Payer would have -- usually, it's based in american exceptionalism and/or canadian waiting lists -- but the one that is simply a non-starter is that any other system provides any specified aggregate of total care for fewer total dollars. because that just is not and can never be the case. single payer is the most economically efficient possible system, both in theory and in practice.

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The earth is a multibillion-year-old sphere.
The Nazis killed millions of Jews.
On 9/11/01 a Boeing 757 (AA77) flew into the Pentagon.
AGCC is happening.
If you cannot accept these facts, I cannot fake an interest in any of your opinions.

Wink's picture

She meant for people of color. We can't afford to pay coverage for brown people, black people, poor people, the riff raff... That's what the RW means when they say "we" can't afford it. They mean that "They" (real Americans) can't afford it.

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the little things you can do are more valuable than the giant things you can't! - @thanatokephaloides. On Twitter @wink1radio. (-2.1) All about building progressive media.

Oldest Son Of A Sailor's picture

Really doesn't exist in our country...
And a vast majority of us are just one "Bad Luck Event" away from needing it...

Yet we can't have it...

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"Do you realize the responsibility I carry?
I'm the only person standing between Richard Nixon and the White House."

~John F. Kennedy~
Economic: -9.13, Social: -7.28,
riverlover's picture

If you do get patched up, the billers are there to give you no peace respite. If psychic problems follow, from injury or the bills, you and any family are on you own. Grand isn't it?

Steven, your wife has been resourceful to find help for her medical mi$take. I hope she continues to improve and that your extended stint as caregiver, with two children as well, has lessened.

Put on a good face, she will likely be buoyed by your attendance, and you are both going for a good cause to help others in similar circumstances. But you knew that. Wink

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Hey! my dear friends or soon-to-be's, JtC could use the donations to keep this site functioning for those of us who can still see the life preserver or flotsam in the water.

my secretary's mom was diagnosed with pancreatic cancer. She was on Medicare. She got the Whipple surgery. Chemo was recommended. Medicare did not pay for it. It was $20,000 a dose. I offered to pay for one, but the family could not pay for the rest of the doses. That lady never got chemo.
She was crying in the drs. office, saying she was too poor to live. Other patients in the office who were able to pay for it just looked away.
That is likely an every day occurrence in good ol' America.

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"We'll know our disinformation program is complete when everything the American public believes is false." ---- William Casey, CIA Director, 1981

Steven D's picture

My wife had the whipple also. Then the bad chemo 24/7 (through a port) during her radiation treatments and then a second different chemo drug that was not the brain injury culprit.

What happened to your Mom? You didn't say. If the cancer killed her you have my deepest condolences.

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"You can't just leave those who created the problem in charge of the solution."---Tyree Scott

She lived maybe 8 or 9 months after her surgery. There was all kinds of home health care assistance she didn't get through medicare, either. Her 2 kids stayed with her when they could take off from work. I gave my secretary paid leave so she could be with her mom during the weeks she was bedridden.
Your wife is a miracle, Steve. I am so sorry anybody would have to beg, but we have to.

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"We'll know our disinformation program is complete when everything the American public believes is false." ---- William Casey, CIA Director, 1981

wilderness voice's picture

Sad but true. My research into this published both here and at TOP:
When Good Doctors Prescribe Bad Medicine
KosAbility: When Good Doctors Prescribe Bad Medicine

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mimi's picture

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gulfgal98's picture

to believe in American Exceptionalism and the idea that people should pull themselves up by their own bootstraps, this fleecing of the American people will continue. It makes me angry that anyone in the richest country that the world has ever known must beg for basic human rights such as food, safe drinking water, shelter, or healthcare.

It is a national shame and we are a disgrace to the rest of the industrialized world.

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Do I hear the sound of guillotines being constructed?

“Those who make peaceful revolution impossible will make violent revolution inevitable." ~ President John F. Kennedy

josb's picture

Lots of people here in the US don't want to be solidary with others. It's the pioneer mentality - if you can't make it on your own, too bad. They are fine with charity, as long as it's voluntary and makes them feel and look good. They have no real sense of community beyond their local tribe. And this society actively promotes this kind of thinking (e g. sports).

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TheOtherMaven's picture

The real pioneers knew better: they were all in this together, and everybody had to work together. Lessons learned from bitter experience (read up on Jamestown some time - it almost failed at least twice, and the first time they *had* abandoned it and were on their way to somewhere else, probably Bermuda, but were intercepted).

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There is no justice. There can be no peace.

riverlover's picture

evokes anger and also pity for the common men and women here, worldwide (except for the relative wealth angle, which may be misunderstood elsewhere).

For those of us who feel, it is very uncomfortable to see parts of the world from a tour bus, and shocking how normal every one else sounds in person.

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Hey! my dear friends or soon-to-be's, JtC could use the donations to keep this site functioning for those of us who can still see the life preserver or flotsam in the water.

in his statement on signing the National Industrial Recovery Act in 1933:

In my Inaugural I laid down the simple proposition that nobody is going to starve in this country. It seems to me to be equally plain that no business which depends for existence on paying less than living wages to its workers has any right to continue in this country. By "business" I mean the whole of commerce as well as the whole of industry; by workers I mean all workers, the white collar class as well as the men in overalls; and by living wages I mean more than a bare subsistence level-I mean the wages of decent living.

If we'd held true to FDR's principle, and annually adjusted the minimum wage to reflect the increases in cost of living, we'd probably be at or above the $15 level now, but it would be less of a shock to the system. And if we hadn't shredded the social safety net, sites like GoFundMe would either not be needed or could be used for something more fun -- a friend of mine did use the site to raise money from her friends and relatives for an anniversary trip for her and her husband (who has had some serious health issues in recent years so they figured if they were going to go it better be now).

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things that FDR (and occasionally others) already settled quite plainly and completely.

That all of our children can recite the Pledge of Allegiance, but none of them have ever read that paragraph, is a damning indictment of our education system.

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The earth is a multibillion-year-old sphere.
The Nazis killed millions of Jews.
On 9/11/01 a Boeing 757 (AA77) flew into the Pentagon.
AGCC is happening.
If you cannot accept these facts, I cannot fake an interest in any of your opinions.

PriceRip's picture

          The past five and a half years have been pure hell for me and my small family. But, everything seems to be working out. I have the expertise to drown you in clinical details, but I won't, just trust me: I know what you are going through from the professional perspective and from the personal perspective. If it were not for clinical trials entering the final phase at just the right moment, and for the excellent expertise (of Dr. House proportions) at just the right time and in just the right place my little family would be much smaller today.
          Sometimes circumstances converge and you win the lottery. There will always be an element of chance in such life and death situations, this I know because of my expertise, so even if you get in the game you can still lose. The fact that a significant fraction of us are not even allowed in the game is something that eats at me daily.

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Outstanding post and analogy.
It's true. We have become beggars.

Your wife's story is inspirational. I'm so glad you and she were able to access the music and dance therapy program.

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elenacarlena's picture

proud of her. There's no shame in asking the well heeled to donate something back to society. They certainly aren't forced to do so by paying living wages or their fair share of taxes.

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Please check out Pet Vet Help, consider joining us to help pets, and follow me @ElenaCarlena on Twitter! Thank you.

Raggedy Ann's picture

her husband's Social Security. If the kids are under 18, they qualify. If they are 18 and a Senior in HS, they qualify. I forget the age they have to be for her to get it, but when I lost a spouse, I got it while my kids were still quite young. They might have been 13 or so when it started only going to them, but it comes into the household to pay for the kids expenses that he would otherwise have paid. Hope she checks into it.

edited for three mfkn typos.

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"The “jumpers” reminded us that one day we will all face only one choice and that is how we will die, not how we will live." Chris Hedges on 9/11

Hawkfish's picture

One of them got the flu, had cheapo health insurance, got debatable care (lawsuit in the offing) and died. Then the surviving spouse had to set up a GoFundMe site.

These were not people on the edge either. Both had middle class jobs and a nice little house.

One wonders how much of GoFundMe is for stories like this. Maybe we should just nationalise GoFundMe and cut out the middleman. We could all pay in and support everyone who had this problem.

Oh, wait...

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We can’t save the world by playing by the rules, because the rules have to be changed.
- Greta Thunberg

In order for corporate profits to remain high as people can no longer afford to buy their products, they expect us to learn to survive on much lower wages and no benefits. One result of this is for extended family members or very close friends to live in a normal suburban house dormitory-style. It usually takes about six working adults to keep the house operating, and often there are children living there as well.

One can tell these homes by the number of vehicles parked in the driveways and at the curbs in front of them. In the neighborhood around the site of my employment, they constitute the majority of home occupiers. The home across from where I live had four different couples living there not so long ago, some with kids. The County forced them all to move (they were renters).

It's almost like someone in the corporate world got all nostalgic about how The Waltons of TV (NOT the Walmart owning family) lived, and decided that poverty would be a good way for us Boomers to get with the Mammonite Religion.

Or starve.

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Vowing To Oppose Everything Trump Attempts.

If we end up pissing away the opportunity of Bernie Sanders, and we are dangerously close to doing so, I just don't see any hope that these things are going to improve at all in the foreseeable future. By historical measures, it seems the economy is strong - stock market, overall unemployment, inflation, interest rates - but it's obvious that something is dreadfully wrong. Historical measures aren't working anymore, other than to the maybe top 20% of earners.

The sad thing is, if it weren't for Bernie, we would have both candidates, Hillary and whichever Republican bozo, both declaring the economy and employment as a dead issue and moving on. What has Obama done for our younger generation in his eight years? Very little. What has he done for the working poor? Not much more than very little. Those unaffected by this seem to not give two fucks about the fact that millions of kids, who were told their whole young lives to get that degree and all will be good, are screwed. And that's not even speaking of their college loans. Their prospects are dim.

What I want to know is, when the boomers all want to sell their middle-class houses to retire, who the hell is going to buy them? If some wealth isn't distributed somehow to the younger generations, another housing issue is in our future. And many other things of course. It goes on and on.

If Bernie loses, I'm very concerned about the message. We have no one to fill his shoes, not with the history and credibility he has. Ugh. Depressing.

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Lookout's picture

Not only does it improve health outcomes, it improves and drives the economy in a very positive direction. Health care as a right and a boost to the economy. It's a no brainer except for all the profit. Peoples lives for profit. So sorry you and your family and all our fellow citizens are caught up in the medical tread mill. All the best to you and yours.

Thanks for the great essay...the Buddha begged too.

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“Until justice rolls down like water and righteousness like a mighty stream.”

When your Doctor tells you the chemo (or whatever treatment) WILL have bad side effects for you heart, lungs and brain ( along with all your other organs) BUT the cancer will kill you quicker. You have a decision to make. For most of us it doesn't take long make it. The 'The cancer will kill you quicker' argument is a very strong argument.

Thankfully there are charities that can help with some problems you face with cancer and it's related issues, IF your application is accepted. If any reader has ever donated to the LRF or LLS, THANK YOU! Small grants from both organizations allowed me to get a land line phone and to prepare to some small degree for chemo without a caregiver.

I almost wasn't allowed the chemo. My Doctor told me the rules were, no caregiver, no chemo. Turns out, of course, that neither Medicare nor Medicaid will pay for that, chemo caregiver, and no charities locally provide that service (People must be dying because of that). So what do you do? You hope your social worker and best friend are good enough liars to convince the Doctor that you would be well and nearly always looked over. End the end, once a week with the worker and an hour most days from the friend were enough, barely. Though I think the rule is probably the right rule.

Yes, chemo messes with your brain, before, during and after. I used playing World of Warcraft to try to keep my brain active and focused during chemo. When I wasn't throwing up or laying there exhausted focusing on the now and the next breath of life of course. Fortunately my brain has recovered pretty well. I still have some degradation of sense of smell and taste and I have some memory issues where I just can not quite pull out of memory things I know are in there and well known to me. Probably most annoying is that when I type my words and or letters, they are often transposed, placed before not after as they should be. It takes me longer to compose comments here than most of you I'm thinking.

Though the physical side effects have been worse for me, hey if the price to pay to be able to be here to write this, is that my legs, heart and lungs are messed up to the point that walking is extremely difficult and that the other issues are now nearly as likely to kill me as the cancer is, it's like ok, deal.

Lucky for me I was diagnosed with Mantle Cell Lymphoma, which is a fast track to Social Security Disability. So I haven't had to beg too much. Being in Minnesota has been a great benefit too of course (for soo many reasons) though the Medicaid portion of my healthcare costs have an over 1,000 dollar a month spend down. Again luckily though, the Doctors and hospital have so far decided that forcing me into homelessness and treating me for cancer are not congruent goals. (Maybe I should ask JtC to change my logon name to lucky1958? ... it's ok to laugh, it's a cancer joke, I make a lot of them people miss).

You've really woven a tapestry here Steven, a compelling landscape with so much to take in and discuss.
Rather than post three other long comments to express my thoughts on the other aspects of your essay, perhaps
those thoughts would best be expressed by... can you guess? ... the guillotine.

One more thing Steven, I think you should market that picture of you smiling. Who can see that picture and not smile and feel that good feeling of smiling? You could put it on a webpage with a paypal link saying 'If this picture made you smile, send me a nickel or dime or quarter or something if you want to. Or don't. Have a great day!'. I figure you never know, people paid for pet rocks right? It's a funny world.
Wink

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With their hearts they turned to each others heart for refuge
In troubled years that came before the deluge
*Jackson Browne, 1974, Before the Deluge https://www.youtube.com/watch?v=7SX-HFcSIoU

Steven D's picture

It was a specific drug, long past its patent protection - Fluoroaracil or 5 FU

Results

We found that clinically relevant concentrations of 5-fluorouracil (5-FU; a widely used chemotherapeutic agent) were toxic for both central nervous system (CNS) progenitor cells and non-dividing oligodendrocytes in vitro and in vivo. Short-term systemic administration of 5-FU caused both acute CNS damage and a syndrome of progressively worsening delayed damage to myelinated tracts of the CNS associated with altered transcriptional regulation in oligodendrocytes and extensive myelin pathology. Functional analysis also provided the first demonstration of delayed effects of chemotherapy on the latency of impulse conduction in the auditory system, offering the possibility of non-invasive analysis of myelin damage associated with cancer treatment.
Conclusions

Our studies demonstrate that systemic treatment with a single chemotherapeutic agent, 5-FU, is sufficient to cause a syndrome of delayed CNS damage and provide the first animal model of delayed damage to white-matter tracts of individuals treated with systemic chemotherapy. Unlike that caused by local irradiation, the degeneration caused by 5-FU treatment did not correlate with either chronic inflammation or extensive vascular damage and appears to represent a new class of delayed degenerative damage in the CNS.

One widely used chemotherapeutic agent associated with both acute and delayed CNS toxicities is 5-FU. Acute CNS toxicities associated with systemically administered 5-FU (most frequently in combination with other chemotherapeutic agents) include a pancerebellar syndrome and subacute encephalopathy with severe cognitive dysfunction, such as confusion, disorientation, headache, lethargy and seizures. With high-dose treatment, as many as 40% of patients show severe neurological impairments that may progress to coma [50-52]. In addition, a delayed cerebral demyelinating syndrome reminiscent of multifocal leukoencephalopathy has been increasingly identified following treatment with drug regimens that include 5-FU, with diagnostic findings obtained by both magnetic resonance imaging (MRI) and analysis of tissue pathology [24,53-78].

Despite the existence of multiple clinical studies describing delayed CNS damage associated with systemic exposure to chemotherapy, almost nothing is known about the basis for these effects. For example, because of the multi-drug regimens most frequently used in cancer treatment, it is not even known whether delayed toxicities require exposure to multiple drugs. Nor is it known whether such delayed changes can be caused solely by exposure to chemotherapy or if they represent a combination of the response to chemotherapy and, for example, physiological changes caused by the body's reaction to the presence of a tumor. In addition, the roles of ongoing inflammation or damage to the vasculature in inducing such delayed CNS damage are wholly unknown. Moreover, the absence of animal models for the study of delayed damage makes progress in the biological analysis of this important problem difficult.

Here, we demonstrate that delayed CNS damage in mice is caused by short-term systemic treatment with 5-FU. Our experiments demonstrate that CNS progenitor cells and oligodendrocytes are vulnerable to clinically relevant concentrations of 5-FU in vitro and in vivo. More importantly, 5-FU exposure in vivo was followed by degenerative changes that were markedly worse than those observed shortly after completion of chemotherapy and that grew still worse with time. Systemic application of 5-FU in vivo (three injections interperitoneally (i.p.) over 5 days) was sufficient to induce delayed degeneration of CNS white-matter tracts. We observed this degeneration using functional, cytological and ultrastructural analysis and by altered expression of the transcriptional regulator Olig2, which is essential for generation of functional oligodendrocytes. The degeneration was not associated with either the prolonged inflammation or the extensive vascular damage to the CNS caused by local irradiation. This study provides the first animal model of delayed damage to white-matter tracts of individuals treated with systemic chemotherapy and suggests that this important clinical problem might represent a new class of damage, different from that induced by local CNS irradiation.

Shorter version:

Oligodendrocytes play an important role in the central nervous system and are responsible for producing myelin, the fatty substance that, like insulation on electrical wires, coats nerve cells and enables signals between cells to be transmitted rapidly and efficiently. The myelin membranes are constantly being turned over, and without a healthy population of oligodendrocytes, the membranes cannot be renewed and eventually break down, resulting in a disruption of normal impulse transmission between nerve cells [i.e. your brain literally starts to have short circuits because of the loss of myelin].

These findings parallel observations in studies of cancer survivors with cognitive difficulties. MRI scans of these patients’ brains revealed a condition similar to leukoencephalopathy. This demyelination – or the loss of white matter – can be associated with multiple neurological problems.

“It is clear that, in some patients, chemotherapy appears to trigger a degenerative condition in the central nervous system,” said Noble. “Because these treatments will clearly remain the standard of care for many years to come, it is critical that we understand their precise impact on the central nervous system, and then use this knowledge as the basis for discovering means of preventing such side effects.”

Other links:

https://www.sciencedaily.com/releases/2008/04/080421191425.htm?trendmd-s...

http://www.neurologyreviews.com/index.php?id=25318&tx_ttnews[tt_news]=20...

http://www.samuelmerritt.edu/kc_upload/files/SMU_PCCI_2015_Spring_McCorm...

http://www.asnweb.org/files/Residents%20and%20Fellows%20Section/Case%20R...

http://www.amsj.org/archives/4274

Not saying that you should reject all chemotherapy since not everyone experiences the severity of these aftereffects and not all chemo drugs have shown a connection to damage to the CNS, just that there are risks. Genetic factors may also play a role as to the extent of damage to cognitive function any specific patient may suffer, as well as the amount of the drug taken, and how high the dose, and how frequently administered.

My wife received 5 FU every fifteen minutes through a pump mechanism during the six week period she was undergoing radiation treatments. Lesser amounts and lower dosages of that specific drug might not have resulted in the same cognitive impairments she experienced post treatment.

Every case is different, and the study of the "chemo brain" phenomenon is still in its infancy as for years doctors ignored or dismissed it, as did pharmaceutical companies. They attributed the problem to fatigue, depression and damage done by the cancer itself, rather than consider the toxicity of the chemotherapeutic agents themselves, so no significant research was done until 2008, 2 years after my wife's treatment was completed, and then the only research that was published was with respect to this one drug 5 FU.

Every patient however should discuss the course of their treatment with their doctors, and be fully informed of all the risks they face from the proposed medications and other therapies that are being recommended by their oncologists. Overdoses of 5 FU have been known to occur and can be fatal or result in comas.

The best patient is a well informed patient. Always get a second opinion. And of course, our system for who gets treatment and who does not based on financial considerations is barbaric at best compared to much of the rest of the developed world.

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"You can't just leave those who created the problem in charge of the solution."---Tyree Scott

Different chemo drugs have different side effects. Just as different cancers have different treatments.
Generally, chemotherapy is pumping poison into you to kill the cancer and hoping it doesn't kill all of you.

While I'm not familiar with the particular drug you mention here, I do know that the protocols for treatment change with evidence of effectiveness and side effects. They don't today treat Ovarian cancer as when my mother underwent treatment for example. My Doctor told me she would not use the same treatment that I had in 2008-2010 because off recent evidence that the risks were higher than thought and that the benefit/risk ratio had been shown to be better with other treatments.
One of the problems with studying long term side effects is the 'long term' part. With some cancers 'long term' survival is unlikely.
'Chemo brain' has certainly been in the lexicon of Doctors and Nurses for as very long time, probably ever since chemotherapy became a treatment for cancer. I wouldn't say the effects of chemo have been ignored. I think it's more been, save the patient now, worry about tomorrow, tomorrow. Fighting cancer has often been by trail and error.

You and your wife certainly have my sympathies and best wishes. Cancer is rarely an easy thing to deal with.

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With their hearts they turned to each others heart for refuge
In troubled years that came before the deluge
*Jackson Browne, 1974, Before the Deluge https://www.youtube.com/watch?v=7SX-HFcSIoU

riverlover's picture

[and a wonderful stroke to her recovery]. Stroke in teh kitty way, not that the smiting way.

I can read science and understand and translate for the uninitiated. My experience has yet to be with chemo treatments. So all of that was an unknown to you and wife when entering chemo? All later mouse model "findings"? All of us know that chemotherapies are killing agents and that we are told that cancer cells divide more rapidly and are the primary targets. So we are told to expect side effects, like hair loss, because hair stem cells produce hair quickly, too. But the treatment is supposed to be a way to stop the disease, cancer (those diseases, not the).

My daughter is an RN, hospital setting, general floor. As you probably know, nurses have a very skeptical view of oncologists, who theys feel do hit-and-run treatment. Make someone sick to get better and disappear for the day, or longer. That is not a helpful thought, is it?

I am thinking longer-term, for your wife and others post-chemo, all trying to regain Before. I survived one NDE, over a year to be mostly functional, went from Born Again Alive to many layers of anger. I could be delusional ;-), but survivors can obsess about the gaps in treatment, the nopologies, the loneliness and yes, anger. I have met several survivors and we can leave many things unsaid or not, and nod.

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Hey! my dear friends or soon-to-be's, JtC could use the donations to keep this site functioning for those of us who can still see the life preserver or flotsam in the water.