Thanks to a reader here, I decided to pitch one of my earlier blog posts as a larger, reported story about medical touch — and my own experience of it — to The New York Times, and it ran today, prompting many enthusiastic and grateful tweets.
It started, as it does for thousands of women every year, with a routine mammogram, and its routine process of having my breasts — like a lump of dough — manipulated by another woman’s hands and placed, albeit gently, into tight compression. It’s never comfortable, but you get used to it because you have to.
Unlike previous years, though, my next step was a biopsy, for which I lay face down, my left breast dangling through a hole in the table. Several hands reached for what’s normally a private and hidden body part and moved it with practiced ease, compressing it again into position for the radiologist’s needles, first a local anesthetic and then the probes needed to withdraw tissue for sampling.
I was fearful of the procedure and of its result and, to my embarrassment, wept quietly during the hour. A nurse gently patted my right shoulder and the male radiologist, seated to my left and working below me, stroked my left wrist to comfort me. I was deeply grateful for their compassion, even as they performed what were for them routine procedures.
It is decidedly weird to out one’s health status — let alone discuss your breast! — in a global publication like the Times — but it also offered me, as a journalist and a current patient undergoing treatment, a tremendous platform to share a message I think really important.
I hope you’ll share it widely!
Every patient needs to be touched kindly and gently
So why didn’t I get physicals? Why didn’t I get P.S.A. tests? Why didn’t I get examined when I started having trouble urinating? Partly because of the traditional male delinquency about seeing doctors. I had no regular family doctor; typical bachelor guy behavior.
I had plenty of warning signs, and that’s why I feel like a damned fool. I would give anything to have gone to a doctor in, say, October 2011. It fills me with regret. Now I’m struggling with all my might to walk 30 feet down the hallway with the physical therapists holding on to me so I don’t fall. I’ve got all my chips bet on the hope that the radiation treatments that I’m getting daily are going to shrink the tumors that are pressing on my spinal cord so that someday soon I can be back out on the sidewalk enjoying a walk in my neighborhood. That would be the height of joy for me.
The writer of those words, Scott Androes, is now dead. He did not have health insurance so he did not see a doctor when he first noticed the signs of prostate cancer.
When Times’ columnist Nick Kristof yesterday wrote about his friend’s death, he got replies like this one:
“I take care of myself and mine, and I am not responsible for anyone else.”
Here’s some of Kristof’s column:
I wrote in my last column about my uninsured college roommate, Scott Androes, and his battle with Stage 4 prostate cancer — and a dysfunctional American health care system. I was taken aback by how many readers were savagely unsympathetic.
“Your friend made a foolish choice, and actions have consequences,” one reader said in a Twitter message.
As my column noted, Scott had a midlife crisis and left his job in the pension industry to read books and play poker, surviving on part-time work (last year, he earned $13,000). To save money, he skipped health insurance.
The United States, whose own Declaration of Independence vows “life, liberty and the pursuit of happiness”, has become a shockingly divided place, where far too many of those who have inherited, cheated, conned, off-shored — or yes, fairly earned — their good fortune — are now hammering the oars of their lifeboats against the desperate, clutching, frozen hands of those now dying and drowning in the icy waters of an ongoing recession.
Too many of of those now driving gleaming new luxury vehicles see people like Androes, if they acknowledge them at all, as mere bugs on the windshield, something small and annoying to be ignored or dismissed.
Androes screwed up. He, God forbid, decided to step off the hamster wheel for a while and take life a little easier, something many of us long to do at mid-life. With no wife or kids to support, he was able to do that. But he was not able to afford health insurance, which is sold here like any other consumer product — and which can be brutally expensive. When I was able to get onto my husband’s health plan at work, even unmarried, in 2003, I was then, as a single, healthy woman in my 40s, paying $700 a month.
That meant an overhead, every year, of $8,400 just to avoid medical bankruptcy. Given that my mother has survived five kinds of cancer, I went without many other amusing choices (new clothes, travel, eating out) for years just to be sure I could, and did, get annual mammograms and Pap smears and all the preventive medicine possible to stay healthy.
Many people in the United States now earn $7 to 12/hour, since the two largest sources of new jobs in this country are foodservice and retail, which pay badly, offer only part-time work and no benefits (i.e. employer-subsidized health insurance). They might as well make out their will now. Because they can’t afford regular medical checkups, nor medication nor ongoing counseling to manage their diabetes or heart disease, even if it’s been diagnosed.
A young friend — sober — fell on a slippery sidewalk, on a steep hill in the rain, and severely damaged one of his knees. He needs surgery that will cost $22,000. His employer, a Christian-based organization, the YMCA, refuses to help.
Yet another writer to Kristof said that people who are destitute medically have all created their own hells, and that’s where they belong:
“Smoking, obesity, drugs, alcohol, noncompliance with medical advice. Extreme age and debility, patients so sick, old, demented, weak, that if families had to pay one-tenth the cost of keeping the poor souls alive, they would instantly see that it was money wasted.”
I am ashamed to live in a country where selfishness is considered normal behavior.
I am appalled by such vicious callousness.
I am sickened by a growing lack of compassion from those who have never known, and utterly dismiss in others, the sting, shame, fear and misery of poverty and desperation.
There are those special moments in every relationship — the first glance, the first shared laugh, the first kiss.
The sweetie, who is normally very healthy, has been passing the broken-up bits of a kidney stone, which, sadly, involved a day and night of intense and frequent vomiting. (He’s back to work today, finally, and seems fine.)
In all our years together, I’d never seen him clutching the toilet bowl and weeping in pain and exhaustion, and it was a hell of a shock. (He saw me on my knees, in of all places, a small hotel room in Bayeux, the victim of food poisoning from a chicken lunch.)
There I was, standing in the hallway with the doctor on the phone, waiting for him to stop vomiting long enough to come and describe his symptoms.
It’s awful when your sweetie is sick and you can’t do much of anything to help them beyond running to the pharmacy, driving them to and from doctors’ appointments and, worst case, the hospital. (I know we are very lucky this is nothing more serious.)
And when someone I love is ill or in pain, confused or worried, I’m a total mama grizzly, snarling at everyone (so attractive) in my worry and concern. I want action, stat! The pharmacist took too long to reach the doctor and Jose was home writing in pain. Not an option! (I later apologized and she was understanding.)
I’ve had too many years, starting when I was 12, worrying about someone ill who relied on me to advocate for them; my mother has been in and out of hospitals for decades for a variety of issues. I’m her only child and she’s never taken great care of herself, nor has she ever fought for the best care possible. And, sometimes, you do have to fight!
A former medical reporter with an MD ex-husband, I never mistake doctors for Gods. I know they can be brusque, rude and condescending — and warm, wise and compassionate.
God help anyone near me who is the former, and I’ve seen plenty of it. It hasn’t left me with a warm, fuzzy feeling for anyone in a white coat with a clipboard.
How do you handle yourself, or medical staff, when your loved ones are ill?
For example, Hillary St. Pierre, a 28-year-old former registered nurse who has Hodgkin’s lymphoma, had expected to reach her insurance plan’s $2 million limit this year. Under the new law, the cap was eliminated when the policy she gets through her husband’s employer was renewed this year.
Ms. St. Pierre, who has already come close once before to losing her coverage because she had reached the plan’s maximum, says she does not know what she will do if the cap is reinstated. “I will be forced to stop treatment or to alter my treatment,” Ms. St. Pierre, who lives in Charlestown, N.H., with her husband and son, said in an e-mail. “I will find a way to continue and survive, but who is going to pay?”
As judges and lawmakers debate the fate of the new health care law, patients like Ms. St. Pierre or Alex Ell, a 22-year-old with hemophilia who lives in Portland, Ore., fear losing one of the law’s key protections. Like Ms. St. Pierre, Mr. Ell expected to reach the limits of his coverage this year if the law had not passed. In 2010, the bill for the clotting factor medicine he needs was $800,000, and his policy has a $1.5 million cap. “It is a close call,” he said.
It is an obscenity, plain and simple in my view, that every American who pays taxes cannot rely on a seamless, safe, affordable way to stay healthy and, when they become ill, have access to excellent care. Because, you know, they’ve got that all figured out in virtually every other nation on earth.
I am acutely aware of what a sham this “system” is because I grew up in Canada and lived there until I was 30. And my friends and family remain there, using a health care system that is so profoundly different in every respect that it is hard to believe sometimes.
My mother, 76, had surgery yesterday in a major Canadian city hospital. Because her condition , while horrible and uncomfortable, was not life-threatening, she had to wait weeks for it. That was lousy for her and for me. But that is how Canada (and other nations) control their health-care costs.
But by the time she had the surgery, she had already been in the hospital since early November, attended to by a physical therapist, an occupational therapist and a variety of physicians.
There are no bills.
There will be no sudden, surprising charges we did not anticipate. We will not have to face medical bills of five or six figures, or bankruptcy because — like most people — we would not be able to pay them.
It is wearying in every possible way to deal with a relative who is ill with multiple conditions, some chronic. It is even more terrifying if that illness is potentially life-threatening.
But to have to worry about paying for it?
What else is there worth having in this life but our health?
What will it take for American politicians to find the most useful organ in the body politic, and physical — a heart?
Went to see the orthopedic surgeon this morning who asked — sort of like ” Wanna latte?” or “Want to see a movie?” how I felt about having my left hip replaced within the next seven months.
Not an option, I said. He insists it will be within the next two years.
Am I the only person (or maybe the only person of the female gender?) in the United States who doesn’t get all excited by the notion of being cut open? Who finds it wearying to keep having to explain how I feel about my health and proposed treatments/medication/therapy/surgery? I feel like I’ve moved to Azerbaijan or some rural outpost of a small African nation where my mouth is moving, but the sounds coming out of it are so unfamiliar as to be disorienting to the listener.
No, I really don’t want: to swallow fistfuls of pills daily; sign up for major surgery; worry that my needs to be treated like a human being are scary or difficult for the medical professionals I deal with.
I think this is deeply cultural. How we feel about our bodies and the people we allow to help us heal is very culturally determined; I grew up and spent 30 years in Canada. Rates of orthopedic surgery are lower there, maybe because the rates of obesity (which aggravate joint pain and mobility) have traditionally been lower and because surgeries aren’t as lucrative or profitable for the medical-industrial complex.
When you see a doctor, do you care if they care about your feelings?
Or do you just want everything fixed now, everything else be damned?