Part 2
I have been writing about my emotional roller coaster ride for which I was ticketed by my disabled brother’s hospitalization, surgery, infections, and transfer into a hospice program followed by his apparent strengthening and process of recovery. You can read the first part of this series here. I am mainly writing this second part of a post for my friends who believe they are comfortable and set for life. Most of them who think they are okay, are one unforeseen disaster away from losing everything one way or another. The demographic details backing up this statement can be found at https://www.nber.org/papers/w17824.pdf or you can read summary coverage of the research here.
Social Realities
Most middle class Americans do not know they are average, or if they know, they do not want to admit it. Look at the regular folks who support the policies and political rhetoric of billionaire families that control major corporations. People really like to think that they have a chance, a small but viable chance, to miraculously transition into living the lifestyles of the rich and famous. Simultaneously these people believe that nothing bad will happen to them. Horatio Alger is alive and well in the misguided dreams of the common person.
I am one of the people who call out that, “The emperor wears no clothes!” Sometimes this comes from my study of culture and how meaning is created and how change happens, but more and more often this comes from personal experience and observation.
Economic Realities
I have experienced the sad inequality and false front of healthcare and economic security in this country through experiences that are not unique circumstances and can only be described as tragic. These tragedies happened to landowners and retired laborers who were upstanding citizens. They were my family members who died prematurely, unnecessarily, because they were among the have-nots.
Folks in my family always worked hard and were upright citizens, with the notable except of a black sheep here and there. I think that is the case with most families. My family farmed. Some were laborers. We paid our own way. We were civically involved, and some even served in the military. But what little land the family had accumulated in any given generation for the last several generations was used up in end of life health care and elder care. So what little surplus was saved ends up being turned over to and concentrated by mega-corporations which ends up excluding more and more funds from from the common pool in which most Americans participate.
I have to ask why the common people have to use up every bit of anything they have managed to scrape together? Why should corporations who let us die in groups homes with inadequate care should be allowed to pocket the life savings of the infirm or elderly? In a recent post a Helene on Books Is Wonderful writes about two experiences that frame this issue both personally and from distinct perspectives both inside and outside the system.
Premature Deaths in My Family
We were never close, our natal family just did not do closeness. My family has many problems that trace through generations of midwestern stoicism to tough love that wasn’t loving, emotional distance and neglect, and just plain old lack of time for doing things other than making a living. In other words we were poor farmers. I’ve watched my family die because of this poverty and underclass status.
The system almost did it again. I am so tired of and frustrated by watching family members I love die because we are unimportant laborers. The 1% can go fuck itself. Profit should not come into the healthcare equation. Corporations should not have control over our very lives and deaths.
My mother manipulated my father to sign for a longterm care policy just before they turned 70 or the cost of my father’s care would have forced her to turn over control of the farm to the healthcare corporation when Dad died from cancer a couple years later.
When my middle brother died, he lost the battle with cancer because it was diagnosed too late. He had a type of slowly metastasizing cancer that if found early could be treated, eradicated, and he would live normally for 5 to 10 years before another tumor would develop. He went through this several times. Things were found early because when he was working his healthcare covered preventive screenings. When he retired, he lost that preventive coverage. He died. They found the last cancer too late. My last conversation with him was him encouraging me to fight Washington for better healthcare.
When my Mom became terminally ill we kept her at home because that was what she wanted. When she had a stroke at home and I saw it happening I took her in to the ER and they would not give her the drugs to counteract the clotting and damage though it was well within the time period when it could have worked. I was told that my mother was 92 and I needed to accept that she was going to die. My mother was refused a standard treatment because she was old, on medicare, not able to buy excellent private care – or some combination of these things. I stayed with her and screwed up my personal life (I lived 2000 miles away) until she passed because the private caregiver hired by my brother did not care for her very well and stole her blind.
When I provided evidence of the caregiver’s fraudulent activities to government agencies she was defrauding, they could not do anything as they do not have staff for investigation.
Now, another brother has almost died because of healthcare dysfunction where vets are shoved off to the side to tie in the normal healthcare systems and the VA system is so overwhelmed that it is difficult to get a vet into the good programs, where they do exist.
I am sick of this. My family has just as much right to live as anyone. But because we were farmers and laborers, we die from neglect and inadequate or inappropriate care.
What horrendous situations you and your family have been in, Nancy. I’m so sorry to hear of it being just one thing after another.
My extended family (and my current family) are firmly entrenched in the “have not” category. Thankfully we’ve seen little death so far despite some huge families and horrific times, but the having not part of it has left one and all with huge bills, huge heartache, huge worries.
You and your family are in my thoughts. Wishing we ALL had better circumstances and society would just get it freakin’ right for a change.
Yes, Lisa, I wish we would just put our efforts in the right places, do the right things, and work to improve the world and people’s circumstances.
This is horrific and yet it’s a story that happens again and again. The cost of cancer drugs place some of them out of reach for those who can not pay. Not everyone knows that drug companies do have some compassionate care programs that defray the cost. I know, hard to use those words in the same sentence. I can’t even tell you how horrified I am at the care my dying girlfriend has been getting at Stanford, and she can afford it. The system is broken but it is more broken for those who can not buy care. This is a discussion my husband and I have almost every month–do we continue to pay for better care or not and we’re always too scared not t pay. I am not sure why we can’t get it right as a country and as a gov’t. You can bet your ass if Congress had to pay for their own care things would be different. I am very sorry for what is going on in your family and I am keeping you in my thoughts. xoxoxo
Thank you Carol. It is somewhat difficult to write about, but I feel that I have a responsibility to put a first person overlay onto the story. I have been given my ability with words for some reason, and this may be one of the main stories I’m supposed to tell. But in any case I am so fortunate to be able to pay for top tier care through a PPO, but that makes me feel a bit guilty as I am the only one in my close family that can aff0rd this. I know you are going through all the hellish hoops with your friend and I am keeping you and her in my thoughts too.
This says it all: “Profit should not come into the healthcare equation. Corporations should not have control over our very lives and deaths.” It is appalling that human lives so often come down to money — and so hypocritical that insurance companies would rather have to pay out on mind-boggingly expensive treatments instead of offering preventative care in the first place. There is so much wrong with the system and I’m horrified that you had to experience it firsthand over and over. Our country should be ashamed of itself. Thinking of you and sending lots of love and good thoughts. xo
That is why I wrote this and shared it. I don’t think that when most people see me they think “have not” perhaps weirdo or rabble-rouser but not underclass. But we really are all just one step away from having well-planned lives dissolve.