It’s hard to write about your mom. She looms over you — at first literally — then over your life, like a mythic mountain laced with the river you drink from. And even as you travel away through time and she seems to get smaller, you know she never is, and you still drink from that same river.
It’s hard to write about America for the same reason.
What follows is a talk with my mother, about poverty, health insurance, medical care, and working life. And it is one of the uncountable stories of the American soul.
My mom was a boomer, born in the Leave it to Beaver post-war period, but destined for American poverty and the working conditions that have always gone with it. By the 1970s she was a young single mom in southern California, working jobs on the racetrack as she could. Sometimes she lost me, and I would stay with relatives until she had a place again. Eventually, she became an EMT and moved into the low end of health care: a field that we hear all about as creating jobs, while hearing far less about what those jobs are.
From my mom I learned how to be poor, and how to persevere. I learned about strength and endurance. I did not learn how to dream of better worlds from her, I did not learn indignation. Those I found in books, but she made sure I could get to the books.
America has always had something of a Calvinist bent — the middle class whites as the elect, saved from birth. The poor whites, blacks, Native Americans, and whatever the current outclass of immigrants as her preterites, and sometimes even her damned. She has always talked of growing the elect, rather than serving the preterite, as if this were compassion rather than an insidious form of erasing people.
Like many of America’s preterites, my mom believes in this ordering of things. She doesn’t question her fate, but works hard to make it slightly more comfortable. “It doesn’t have to be easy,” she once told me. “It shouldn’t be easy. But it should not be this hard.”
Here, my mom and I agree.
In 1906 Upton Sinclair published The Jungle, a harrowing story of conditions in the meat packing industry in Chicago, and the employment practices that treated immigrant lives as nothing more than coals to feed to the fire of business profit. The political reaction was swift — inspections were instituted to make sure the meat was healthy. Sinclair lamented that he’d “…aimed at the public’s heart, and by accident I hit it in the stomach.” For many, especially in “growth” fields like medical care, labor conditions are only slightly better than they were in Sinclair’s day. For others, like those trapped in America’s prison labor system, they are as bad or worse.
The American preterite have always existed to be consumed by the machinery of the elect. The machinery changes, but the fates remain the same.
This interview spanned weeks and eventually months, and has been edited for clarity and length.
Quinn: Hey mom, can we start with health insurance?
I never had insurance until I came to Oregon. I tried in California for several years, but I couldn’t be insured at any price until I had three years of clean pap smears. Kaiser eventually took me on in Oregon, at the age of about 40.
Quinn: How did the medical system work when you were a kid? Did people have insurance then?
I wasn’t aware of anything like insurance when I was a kid. My parents didn’t have any health insurance, ever. My grandmother had insurance in the sixties, and medicare when it came available, but it was not an issue for most of us, even when sick. Things were cheaper when it was mostly pay as you go.
Quinn: How did my grandmother’s cancer get treated?
Joan was treated by UCLA. Her cancer was considered very abnormal and interesting. Being a teaching hospital, they were anxious to work on her and try out new things. How, exactly, the funding was worked out, I don’t know.
[My grandmother contracted thyroid cancer after living downwind from the Hanford nuclear facility in Washington state. She was first diagnosed when my mom was three. She died, nearly every part of her body ravaged by cancer, when my mom was 16. I was born three years later.]
Quinn: We never had insurance.
It was never thought of. It is a relatively new phenomenon. You simply took care of yourself, or your family did. No one thought of “going bankrupt” paying medical bills. It cost a lot, but not as much as now. I had a baby in 1973 and was in the hospital for three days and it cost a thousand dollars, at that time two month’s pay.
Quinn: I remember you getting really frustrated a couple times trying to get us insurance and getting nowhere with it.
You mean you and me? Yes, I’m sure I did. It became more apparent we would need something when I started getting sick and you were going through your stuff, and it was very expensive.
Quinn: It’s why I gave up college. I was getting sick a lot and I didn’t want to see a doctor and be diagnosed and then never have any hope of getting insurance. So I left school to get a job with insurance, but the first company I went to did a bait and switch and ended up not ever insuring me. My first insurance was a few years after yours.
[My mom worked largely without pay or for very little pay all of her life until 1987, when she inherited some money, a cushion for the first time. She became dangerously ill, and through various difficult life events, including depression partially brought on by drugs used to treat her illness, lost her house and her savings in the late 1990s. About 11 years of her 60 was spent with a middle class life, and when it was gone, so was her stability. But she lived. After that, insurance became her first priority. By the early 2000s, still sick, she was struggling hand to mouth and to stay off the streets.]
I gave up my apartment and lived in a basement while I tried to keep my insurance, but got evicted. My father gave me $700 to help me move into the place I live in now, after some months of semi-homelessness.
Quinn: Were you sick at all at the time?
Yes. I had just completed half the recommended ECT therapy for depression, and was recently finished with interferon treatment for Hepatitis C. I had a severe infection for nearly a year and haven’t been the same since. I was beginning to get sick when I went to Europe with you.
[I took my mom to Britain, France, and the Czech Republic in 2001. It was her first passport, and to my great shame she didn’t get to use it again before it expired.]
Quinn: Did you try to get public assistance? This would be, state of Washington at this point?
Yes. I was not eligible for Medicaid, and there is no disability insurance in Washington state. They had a basic health plan, but it was cut off to new members and I was on the waiting list.
Quinn: How did you deal with it? The depression, the aftermath of Interferon, which I imagine caused at least part if not all of the depression, and the infection?
One foot in front of the other. It was not easy. I got a prescription for an antibiotic from Kaiser before I lost my insurance, and it seemed to help some. My eyes are still messed up, I have to bathe them everyday in something and use q-tips to remove the gunk, and my lungs need steroids and Albuterol occasionally.
[Later, my mom would order veterinary medicine off the internet and use it to treat her infections. With her medical knowledge she was able to dose for humans, but it was often difficult to get medicines she needed. Ordering drugs meant for animals is a way for the poor to keep medical costs down.]
No, not at the time. And they didn’t give me prescriptions for sleep, either, but once for a few days. They probably didn’t want to mess up their study. But I was already ill with depression, the Interferon didn’t worsen it that much.
Quinn: I found this note online — “The other side effects of Interferon include depression, irritability, sleep disturbances, and anxiety as well as personality changes. Generally these are manageable but take a fair amount of counselling with the patients.” I imagine it’s hard to separate out depression from the uncertainty that comes with finding out you might be fatally ill. Eventually you beat all of that.
I didn’t beat it, I survived it, for some reason.
Quinn: When did you move to Washington?
12/01/2003. I was painting a few things for old clients then. [My mother was a faux finisher for many years.]
Quinn: How was your health? And did the painting affect it?
I don’t know, I hadn’t seen a doc for a year or so. Apparently my health was OK, since I’m still alive. Painting hasn’t been a problem, I don’t think. I wasn’t exposed that much. I always used a respirator when spraying. Worst time I had was when I worked for Kaz up here a few years ago. [Kaz was a contractor my mother worked for periodically]
Quinn: What happened then?
We painted that 40 foot water tower with nasty stuff, methyl ethyl ketone (MEK) was the solvent. I didn’t use a mask since I was in open air, and had to manoeuvre on a lift and climb on top, since the boys were scared to. I had a vision problem driving home, well, my left eye went white.
Quinn: Was that the MEK?
Probably. I wasn’t doing acid at the time, so I can’t think what else it would be. I was fine a half hour later.
Quinn: Was anyone at that company insured?
Oh hell no. Ten bucks an hour job under the table, unless you were a boy, then you got $15.
Quinn: Weren’t there times when you went to a free clinic?
When I was really sick and going to classes to become a CNA [Certified Nursing Assistant] I was required to get a doc’s permission to work, so I went to a free clinic here in Vancouver to get his signature on a slip so I could begin work. Required, so that I didn’t infect the patients.
That’s when I got the inhalers I have now, and actually used one last night to breathe! They were very nice and helpful and gave out free medicine. But I had to wait three hours with a bunch of sick people to see them.
Quinn: Tell me about when you went into the CNA program, why, and what it was like.
I was desperate for work. I didn’t want to do that line of work. That was obvious from my lack of finishing nursing school. [My mother had attended nursing school in the 1980s, and did well, but dropped out before finishing.] But being a woman my age and with my pitiful resume there was nothing else available.
I was motivated to get work. (The class was) thirty days, eight hours a day, and if you were two minutes late, you were out of the class. Sick, forget about it. Out.
Quinn: I remember you getting sick during that class.
My saving grace was that the nurse teaching was sicker than me for a whole week, and cancelled class.
Quinn: Ha! I imagine that happens because she makes sick people come breathe on her.
Had she not been, I wouldn’t have made it.
Quinn: Did you learn much in it? I can imagine a lot of it was stuff you already knew from nursing school.
I didn’t learn much, really. I learned what I needed to pass the CNA test, and how they did things nowadays. Very stupid people can do this job. But you have to do things a very specific way to pass the test, and it’s more about attitude and confidence than capability.
Quinn: I know you don’t like it, but I have to say, you’ve always had a good head for medicine.
There was some stuff in the hours of AIDS tapes and HIPAA stuff that was good, but that didn’t come from Nurse Ratchett.
Quinn: Heh. [Nurse Ratchett was my mother’s nickname for her CNA instructor.]
She was really OK, but extremely old school and scared the shit out of the young kids. But that was OK, because when we got on the floor, it was way worse. Eight started in the class, I think five finished, and three lasted six months. A pretty good record by the pictures of graduating classes for the last few years. Several had only one or two students.
Quinn: So, the program put you directly into a job, full-time, as a CNA?
Yes. That’s why they do it. The only way they can keep a staff is to feed the system, 90% say “wtf” and do something else. Ok, well, out of class and on the floor we got six patients for a few days, with the help of an experienced person. I was the experienced person in about a month, helping other innocent CNA wannabes.
Quinn: And a lot of people left after they saw how the work was?
Well, one left when his background check didn’t work out so well. Nurse Ratchett asked him to come out in the hall for a minute and we never saw him again. A couple failed the book learning, were asked into the hall, same vanishing act.
I almost got vanished when I laughed a bit after finishing a test. I was truly sorry though, and got through it.
Quinn: What did you laugh at?
I was talking, quietly, with another test finisher, and you are not supposed to BREATHE before anyone has handed in their papers. I was always first, and this 18-year-old sharpy was always second, I don’t remember what I said, but it was too loud. One poor illiterate barely high-schooler was taking 20 minutes longer to finish than anyone else, and I got severely reprimanded.
Oh, it was very 19th century. But I can understand why she did it, because it weeded out anyone who wasn’t mentally tough. Unfortunately it doesn’t weed out the weak, or the arrogant. The sharpy who wanted to be a nurse in a third world country didn’t last a month on the floor. The bookkeeper and the insurance thing was bad. The nurses were iffy, but there was always the manager I could, and did, go to. The ombudspeople were clueless and got me in trouble.
Quinn: What do you mean?
Well, they (the ombudspeople) walk through and see some old person complaining, and see a bunch of CNAs running around, losing a lot of weight, and seemingly doing nothing but running around, and grab one and say, this man needs his jacket. You say, “Umm, I don’t know who his CNA is, but I’ll try to find out,” while dashing to change three people’s briefs, people you are responsible for. Then they grab you again, and you run through the cafeteria, even though it is against the rules, to find his CNA, who is hiding somewhere. No dice. So you get reported to the Head Nurse, and the State, and you have to have a phone Call with a state official, to explain it all.
Quinn: So it’s just whoever is unlucky enough to get picked on that gets written up.
And, he wasn’t really cold, he just wanted his jacket. He was an Alzheimer’s patient.
Quinn: So this was your first chance in years to get insurance, right?
Quinn: They about worked you to death as I remember it. Was that partly because you were getting sick? Or vice versa?
I could have handled it when I was younger, easily. But I was bleeding a hell of a lot, later found out I was anemic. I outworked nearly everyone there, nonetheless, and was a favorite with the patients. But got lots of looks for the sweat pouring down my face all the time. They were thinking, old lady can’t take it. I was thinking, young shits are callous.
Quinn: And the anemia was caused by….
Umm, bleeding? didn’t I say that?
Quinn: Ok, and the bleeding was caused by…
You do remember I had to have a hysterectomy for massive fibroids causing lots of bleeding, a couple of years ago.
Quinn: Yes, but the people that will read this interview won’t.
Oh, sorry, completely out of character.
Quinn: I know, it’s a little weird. Your insurance kicked after three months, correct? How did you feel about finally being insured again, and how long had it been?
It was a 90-day wait for insurance. I got the maximum of the three tiers they had.
I felt better, but I was wary. You couldn’t tell if it was really any good, and the $25K a year max was worrying, but it was cheap, 65 or so a month. I hadn’t been insured since about 2002 (This was 2008) Let’s see, I think I started around Febuary or March, and I had been having 15-day periods for a few years before, but they got worse right away.
Quinn: So what happened when you went to the doctor?
He acted all concerned and sent me to Dr. Barbara Forsythe, who acted all concerned and said I needed a hysterectomy and sent me to Vancouver Radiologists who acted all concerned and sent me a bill I couldn’t pay and later sued me for it. They all thought it was cancer, and they were wrong. It did take me a fortnight to actually find some doctor here who would take my insurance
Forsythe did my surgery, and very well.
Quinn: Who was your insurance company?
Good question! I still don’t know. It was the Beechstreet network. I finally kind of traced it back to Connecticut General? I’m still not sure. Insurance is a maze. I’ll try to dig up the papers for you, but it was just a nightmare. I had to call like 20 offices to find someone who would “take” my insurance, and I think even Forsythe was taken, as her office called and said, you’re 100% insured, happily. Then they got paid a whole lot less than they thought.
Quinn: Can you tell me what the doctors found?
I had high blood pressure and needed a hysterectomy, due to lots of bleeding. I was anemic as well. Ultrasound showed lots of large fibroids. My surgeon said it was nearly the largest uterus she had removed in 25 years.
Quinn: How did this affect your job, which of course had just given you insurance, and how soon after getting your job did you discover the fibroids?
I got a lot worse while working, it was hard work. I think it was about five months into the job when I was diagnosed. They had a self-scheduling policy there that was nice — you could schedule the days you needed off.
Quinn: Did the fibroids account for all your symptoms, or were there other issues?
Well, they accounted for the bleeding, anemia, back pain and exhaustion, but not the high blood pressure. I guess that was the thyroid going haywire, but we didn’t know it then.
Quinn: How urgent did Dr Forsythe think it was that you get surgery?
Quite. She wanted me to have it right away. I think we scheduled it for ten days or so from my visit with her. I asked if I could wait until I had more coverage, like nine months, and she said no. She was concerned it was cancerous, but she didn’t tell me that until after the surgery. Also she said there could be a lot more surgical complications if I waited.
Quinn: Especially with all the hard work you were doing, and the anemia.
Yes, I wasn’t going to last.
Quinn: So what happened when you told your employer this?
I was told I would have to self-terminate to have the surgery, since I wasn’t there long enough to take a leave of absence. The nurse in charge of HR made it clear that I could have my job back when I was well. And she did ask me to come back later.
Quinn: And your insurance benefits?
That would start all over again, no insurance for 90 days, then the same crappy benefits I had before.
Quinn: If you didn’t quit, what would have happened?
I don’t really know. I suppose they would have terminated me, and getting my job back would have been hard. I didn’t really want it back, though!
Quinn: And there’s no law in Washington that prevents a company from terminating someone for getting sick?
Quinn: And no disability to cover someone when that happens?
No state disability in Washington.
Quinn: Doesn’t that strike you as a little medieval?
Quinn: Why not?
I come from a different culture. I’ve lost my job for getting sick on the racetrack!
Quinn: In most of the rest of the developed world that’s illegal.
So is working seven days a week too, probably, but they still do that on the track.
Quinn: That’s actually illegal here too, technically. But as I remember it at the time, you weren’t particularly looking forward to quitting your job, losing your insurance and living on very little while you recovered from surgery, even if you didn’t like the job much.
True. It was a financially and physically difficult period.
Quinn: How did you make it through?
W**** let me slide on the rent, P**** helped me financially a little, and I did get a painting job in December that paid a lot, and C**** did most of the hard work I couldn’t do. I got most of the money. I was out of work from Oct. 20, 2008 until Feb. 10, 2009. Not too bad compared to some these days.
Quinn: Did you know that healthcare workers (other than doctors and RNs) are twice as likely as the general populous to be uninsured?
[This may be changing under Obamacare, but as of this writing, the change in rates of uninsurance by field isn’t known.]
Yes, I heard you say that before, but it doesn’t at all surprise me. We are very underpaid workers.
Quinn: Doesn’t it cause resentment? I feel like I’d give really crappy care if I knew I couldn’t have what I gave others. Seriously, I think it would eat at me.
A lot of caregivers are very young, ethnic, uneducated and/or not very bright.
Quinn: So they’re easy to take advantage of.
There’s a lot of unrest in nursing home workers.
Quinn: Do you think that unrest seriously affects patient care at times?
Absolutely. Plus ridiculous amounts of overwork. Everyone is on a CNA’s ass. The nurses, the management, the patients, the ombudsmen.
Quinn: But on the moment to moment basis, it’s the CNA that has the most contact with patients.
Ninety-nine percent of the contact. Not to say nurses have it easy, but they make a lot more to compensate.
Quinn: CNAs are in many cases the main healthcare provider, the main person giving medicine and looking after the ill, the main person that you hope would notice health changes and mistakes.
Yes, that is part of the job. Ultimately the nurse will be responsible for missing something, but they depend a lot on the CNA to know if something is amiss, because they can’t watch the 20 or 30 people under their care on a shift very closely. I commonly cared for 12 very high maintenance people, and if a CNA didn’t show up you could wind up with as many as 18.
Quinn: That seems insane.
Quinn: I think of you as hypercompetent, but even you would have to make mistakes with that many very sick people to look after.
I did make mistakes. Others made a lot more. Ever have three people in wheelchairs crying to go to the bathroom while three more bedridden patients are pounding on their lights needing the bedpan?
Quinn: Can’t say it comes up a lot in journalism. I have a lot of friends with very prestigious jobs, Very Important People, but I often feel like your work blows them all away. Just because society doesn’t happen to pay well for it doesn’t take anything away from how amazing it is.
You should see the amazing synchronisation a really good CNA has in a nursing home sometime. It would make a wonderful documentary, but getting permissions would be impossible. So many things have to be done on time, at the same time, before and after a time, and efficiency is paramount in order to be safe. It takes practice, and luck. Everything depends on something else. If they didn’t stock the briefs during the night, just having to run to find a nurse to open the stock room can fuck up your timing the whole day. Someone else will get your spot in the shower, and your client will have to wait till after breakfast to take a shower, and the person they are replacing will have to wait until after lunch, etc..
Quinn: Not a job for the absent-minded.
Quinn: Tell me about the new job, and why you like it more than the old one.
Caregiver, living assistance services. Everything that entails for the elderly, plus personal care when needed. I do everything from gardening and fixing dishwashers to giving showers and wiping bottoms.
[Specifically, this job was in-home hospice care — elderly patients who have forgone lifesaving measures in favor of more comfortable final days. My mom didn’t just fix their dishwashers. She listened to their life stories, brought them their favorite foods, documented their best recipes, sometimes even snuck them out of the house and into the world.]
Quinn: Do you like your current work?
I do like my work, and the company I work for.
Quinn: So you go to people’s houses instead of helping them in a nursing home situation?
Exactly. I help keep the elderly in their homes longer, making life more comfortable and independent for them as well as cheaper. It’s less physical work, less mental and emotional strain, and I get to have time to know my charges and fulfill their needs adequately. Money is just slightly less, and no benefits of course, is the only down side. No bosses in your face all the time enforcing stupid rules.
Quinn: Are your services covered by insurance?
Yes, some insurance plans do reimburse for our services.
Quinn: But your employer can’t offer insurance?
No. They say it is because we are part-time employees, and they cannot ever guarantee full time work. Plus it would cost a fortune and many elderly clients wouldn’t pay the extra fees.
Quinn: You often work fulltime though, don’t you?
I’ve been working about 34 hours a week for several months now. But when a client dies, and that has happened to me, hours can drop drastically. I was once down to 17 hours a week for a short time. I don’t seem to have a problem getting and holding on to new clients though, so I’m not too worried about that.
Quinn: Your clients and patients always seem to love you.
Yes. They appreciate my talents. I anticipate their needs, I am efficient and work hard. I’m a good conversationalist and will listen to them and have some idea what they are talking about since I am the age of their children, and not their grandchildren. I’m a good cook. I can get along with any type of personality, whether I like them or not. I am completely non-judgemental in my attitude and speech. Etc.
Quinn: Your clients are often dying, aren’t they? How do you cope with that?
I don’t really concentrate on that, I concentrate on the moment of living and how to make it better. I suppose I compartmentalize to a large degree. I think about it when lying in bed at night sometimes.
A few months ago my mother called me. She told me that she couldn’t watch her clients die any more. I said of course, and asked her what she needed. I don’t make much, but I send her what I can, while she takes some time to decide what’s next. It is the least I can do, to make up in some small way the debt society owes her, and will never pay.