So you’re chugging along doing all the things you do as a responsible citizen, you work, and pay your bills and your taxes, you are there for your children, and fighting for your marriage, you even volunteer. It’s spring, 1998, and gradually you just become so tired it’s a struggle merely to climb a flight of stairs.
Oh, well, you do have two daughters in college, another nearing the end of her senior year in high school, a son in middle school, a full-time job, a house to take care of, are back in college, and have two dogs, two cats, and oodles and oodles of marital strain.
Fatigue sort of goes with the territory, and like many working moms, you just push past it. You get up, you get the family off in various directions, you go to work, you go to class, you cook dinner, you help with homework, go to games and track meets, do housework, set boundaries for the two kids at home and field frequent counseling-like calls from the two who are not, you try to work through problems with your husband, and you collapse exhausted into bed, get up the next day, and do it all over again – it’s a routine you dare not interrupt with reflections on your fatigue – there is no time.
Then one day…
You show up two weeks later than you should have to the hairstylist (pretty common when you are constantly pressed for time) and instead of the usual lecture about the color of your roots, she turns you around in the chair and says:
“I look at people’s skin tones all day long and try to decide the best coloring for their hair, and I can tell you this: gray is not a normal human skin tone. Get out of here right now and go see your doctor.”
For some reason, though she is not the first person to note you don’t look your best lately, this is the one thing that manages to penetrate the fatigue-fog and you do as you are told.
You call on the way, check in, sit down in the crowded waiting room resigned to waiting for a couple of hours, and a mere minute later the doctor, passing by the glassed in sliding windows on the other side of the wall catches sight of you, comes out, and demands to know: “How did you get so anemic?” You say, “I am?” He says, “Come with me right now” takes your hand and drags you back to an examining room.
Later that day, at the oncologist/hematologist office, this new strange doctor takes blood, orders up an outpatient transfusion, tells you that you no doubt have acute myelogenous leukemia, could keel over dead at any moment as long as you are untreated, and should now go home and call him the very minute the HMO calls you and tells you to check into some local hospital or the other – but should on no account whatsoever check into that local hospital.
You find this direction to avoid hospitalization confusing, in light of the “keel over dead untreated” stuff and say so. Whereupon oncologist/hematologist guy says HMO will try to check you into local or even regional hospital – because it’s cheaper – but in his opinion no local or regional hospital should be treating leukemia, since cure rates double in large teaching institutions. Risk of keeling over dead while he is arguing for your life with HMO is less than risk of dying in local hospital. Then he writes you a list of five hospitals in Chicago that you can allow yourself to be checked into, and says if it’s one of these ok, but it won’t be, so call me when they tell you to go to a local hospital.
Sure enough, he’s right; they do, the very next day. You call him. He works some magic you know naught of (though local rumor tells you later that he informed HMO that he will be sure to make himself available to testify at your spouse’s wrongful death suit later) and you get the referral to the large teaching institution later that day.
Telling your children…no, you won’t write the details here, beyond saying that especially for someone who lost a parent at the age of eleven, it’s the hardest thing you’ve ever done to try to be honest about the prognosis (which is grim) but reassuring about your love for them and intent to fight for your life.
Skip ahead then. On your first day in large teaching institution, you are visited by a social worker, who surprises you by demanding to know not the details of your home life, or about your state of mind on being diagnosed with a more-lethal-than-not form of cancer, but simply: “Who is carrying your insurance, you or your husband?”
You think this is rather cold for a social worker and inform her somewhat frostily that you are sure the bill will be taken care of – it’s pre-approved.
Social worker looks at you with what you interpret as pity and says it’s really, really important. So you say, spouse, as you work for small non-profit that offers no benefits, but also admit to her that you think marriage is for sure doomed now.
“Good, good!” she says.
And you wonder why, why, on top of extra-lethal form of cancer, must you also get unbalanced social worker?
She must be able to tell from your expression that you think she’s nuts, because she explains, like so:
If you worked for a company that offered insurance, if you carried your family’s insurance, next year your insurer would slap a million dollar surcharge on the company policy for carrying a leukemia patient. The company would get the bill and someone in accounting would question “what is this extra million dollars we are being billed?”
The insurance company would explain to them that the million is for you, and it is yearly, but is, ahem, “fixable.” They will say “as long as she is on your insurance (wink, wink) this charge will be there. So what you have to ask yourself (more wink, wink) is whether this employee is worth a million dollar a year salary on top of what you are already paying her.”
Social worker said she had seen small business owners go almost broke trying to cover this charge, and had even heard of one who defiantly did go broke, throwing all of the employees out of work. But more usually, she said, they just fire you.
“Wait, wait!” say you, “Isn’t it illegal to fire someone for their health history? Suppose I’m all well and working?”
She looks at you with more pity, says yes, so of course they will have to find “cause” to fire you, which any employer can always do.
“But I am a very, very good employee!” you protest.
“Yes,” she says, “but they can always find some cause.” The real problem she goes on to explain, is that you will find a new job, that company’s insurer will slap them with the surcharge, they will take their turn at firing you, until you’ve been through six or seven jobs in a year, fired “for cause” from all of them, which of course looks very, very bad to a prospective employer.
“So in a year or so of this, you will not just be uninsurable, you will also be unemployable.”
She asks who your husband works for, since they’d probably try to do this to him too. You say he is a cop working for a municipality, which pleases her. “They have all sorts of layers of officials, elected and otherwise, to work their way through to get to the decision, then once they do they have to get past his union, so it will take much longer to get him fired.” She also, though, offered sympathy for the fact that what with the police union and the municipality fighting out whatever “cause” they got him on in such a public profession, it was sure to end up in the local papers and disrupt all our lives – including the children’s – when they did get that far.
You remind her you seem headed for divorce, and she says, well, okay then, just carry the COBRA to the limit and keep on working for small not-for-profits that don’t offer insurance.
You ask her what you are supposed to do for health care and she says sooner or later the insurance companies would force you onto Medicaid – either by means of making you unemployable and broke, or by means of you being uninsured and going through any and all assets you have paying medical bills until you are broke and sick enough that you can’t work, and end up on Medicaid.
You are rather horrified, but have other things (like trying to stay alive and simultaneously on top of what your teenage children are up to from the hospital many miles away) on your mind, and besides, this all seems so uncivilized and melodramatic and “worst case scenario” and…unlikely, somehow, so you set this aside for now.
You live. In fact you are cured!
A year later you are divorced. You are struggling to get by as a single mother, and you are making the COBRA payments.
Your ex comes by to pick up your son and tells you that the municipality he works for’s administrator told him in absolute shock that the insurance company slapped a million dollar surcharge on the municipality’s insurance policy, and said it would go on yearly until you are off, but since you had exercised your right to COBRA it would “do no good” if your ex was gone. The administrator said he was so shocked and offended that he went to ALL the other carriers possible, and one by one they all gave him back a “no bid” with the proviso that they would welcome the opportunity to bid…just as soon as that leukemia patient’s COBRA rights expire. So barring leaving all the municipality’s employees naked of insurance they were absolutely trapped.
Social worker begins to seem less melodramatic to you.
Your COBRA rights expire.
You go on ICHIP, the program for uninsurable Illinoisans. It’s easy, because your disease is on the short-list of twelve or so that automatically render you “uninsurable for life.” You discuss the horrible policy benefits with your car insurance agent – who is also a trusted friend. She tells you she is also on ICHIP (though it was much harder for her to get on it - she had to get three denials from private insurers) and the entire benefit it provides is to “get you through the door of a hospital” since if you really do get ill you will get benefits so minimal that you will be forced to pay the vast majority of the bills until you are bankrupt and forced onto Medicaid.
Social worker begins to seem downright reasonable to you.
The day comes when you weigh the many, many hundreds of dollars you are paying on a monthly basis, through ICHIP, but to the very insurance company that once charged your ex’s employer a million dollars (coincidentally, the exact bill for your treatment over your year of leukemia fell just short of that million, by about ten dollars, so this company was out exactly nothing) of what is starting to smell like blood money, against your daughters continuing in college and your son eating on a regular basis.
You get a second job.
Your daughter gets sick with Type I Diabetes while uninsured and you weigh those hundreds of dollars to the insurer you now thoroughly detest and you drop that insurance and buy her insulin and syringes and test strips and trips to the doctor instead. You are now so broke that if you would just give up and quit your two jobs and collapse already you are certain you would qualify for Medicaid. But you are stubborn and you go to work.
Your mother – who though she has been a strict vegetarian since birth has very high cholesterol that will not respond to diet and who has been on high blood pressure medication for decades - survives her third heart attack and you consider the fact that your father died at 39 of a heart attack and you think that probably you are not far away from one yourself.
Your oldest sister says while visiting Mom at the hospital that she has been on high blood pressure and cholesterol medication for a decade too.
Your nearest-in-age sister, also a strict vegetarian, goes to get her cholesterol checked and sure enough is placed on high cholesterol and high blood pressure medication. She is also diagnosed as almost completely deaf in her left ear, as your father was at a very young age, and as you suspect you are too. She gets a miniscule hearing aid. You are careful to not put the phone to your bad ear.
Your little brother is diagnosed with cholesterol that doesn’t go down in response to a diet (you get hilarious stories about your sweet and gentle sister-in-law’s brutal enforcement of said diet) and high blood pressure. He goes on medication.
You go to the drug store and test your blood pressure when you wake up with the blood pounding in your ears one day and, sure enough, it’s crept up to high borderline. You try a myriad of things and finally hit on running every day and cutting all of the salt out of your diet to get it to the high end of “normal.” You check it once a week.
You struggle – much – with your weight and the overwhelming need for naps and your ridiculously dry skin and your thinning hair. Your late-twenties daughter, who has just been diagnosed with a completely non-functioning thyroid gland, goes on thyroid medication and lectures you that these are all exactly her symptoms, so you should get your thyroid checked. You know it, and are aware (as your daughter is not) that your mother and sisters have all also been on thyroid medication for years, but you can’t afford it – or the regular doctor visits and monitoring that go with it.
You go to coffee with your friends. They have not had an easy time of it lately with their own and their husbands’ health. In fact, it’s been a horrible couple of years. Your heart bleeds for them and you can think of no words sufficient to describe their courage and grace. And yet sometimes you feel jealous that they have access to medical care, and then you just feel guilty and small-minded, because they need this care, and they are wonderful, wonderful people who have worked hard for the lives they’ve built and who give much back to their communities.
But still…you hear about one friend’s breast cancer, and you remember that your oncologist/hematologist warned you that all leukemia patients who survive eventually die of some form of cancer – because the chemo drugs are “the strongest carcinogens, in the strongest doses, known to man.” And you remember that your maternal grandmother died of ovarian cancer, and your nearest-in-age sister was successfully treated for ovarian cancer at the age of 24. But you know you can’t afford a tenth of the screenings you should be having on an annual basis – not even once.
Or you hear about a husband’s heart surgery and you think you might well need that one too – your mother, her sister, and one of your own have all had that particular surgery. But since you can’t afford the surgery, you don’t bother to try to have the tests you can’t afford either.
You don’t go get your hair done any more. You can’t afford it. So you do it yourself.
But you mostly fret about that because you will love forever the hairstylist who probably saved your life – even if you did end up uninsurable for the duration of that life in the process.
diarist’s note: Yeah, ok, this is my story. If you are annoyed by my writing it entirely in the second person, please be advised that I did it deliberately, because, quite frankly, this could be you.
Anyone can be uninsurable in America.
In about as much time as it takes to get your hair done.
I’m not looking for sympathy here – I’m alive and not everyone manages to survive the insurance fiasco that masquerades as “care” in our country. Besides, I’m so stubborn I’m planning on living until I’m old enough for Medicare. So I’d like to direct your sympathy to those who are still alive, but may not make it through another decade of having their “care” rationed by the insurance company accountants.
I know I’m not exactly breaking news here, so please, do not tip, do not rec, go directly to your friends and neighbors and explain to them that their medical care is a disaster waiting to happen, give them their congressperson and senator’s contact info and get them to call or e-mail.
Crossposted at Daily Kos