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
I awoke this morning at 4:40 a.m, feeling like my chest was being crushed.
I sat up in bed, trying to focus on whether this was a heart attack, knowing that symptoms are very different for women than men, and because of that often overlooked or ignored.
I had never had one, but knew to pay close attention to my body’s signals.
shortness of breath
pain in chest, jaw, back, shoulder and arm
I felt light headed and, although there is no history of heart disease in my family, I’ve been taking a low dose of cholesterol medication daily for a few years.
We have health insurance and a very good regional hospital that I know far too well from multiple orthopedic surgeries since the year 2000, only a 10 minute drive from home.
The roads were empty at 5:00 a.m. so my husband got me there fast and the emergency room luckily, had only one other patient in their 30 rooms.
I was quickly given an EKG, X-ray and had four vials of blood taken. The nurse put in an IV line in case (as I did need) they would need to take more blood later.
The pain subsided and within a few hours, thankfully, I was pain-free, if exhausted.
I learned a lot.
If it had been (thank heaven it was not!) a heart attack, specific proteins like troponin-1 are released into the bloodstream as heart cells die. The first blood test showed I was probably fine, but the second one needed to be taken six hours after my symptoms — i.e. I arrived at the hospital by 5:00 a.m. but had to wait there til 11:00 for the second set of blood samples to be taken and results read and shared with me.
I also learned that if it had been a heart attack, I would have been sent to another larger hospital for the insertion of a stent.
I also learned that many people present at the ER thinking, like I did, they were having a heart attack but it was — as we think it was for me — a very bad case of acid reflux, an esophageal spasm. (Very unusually, I had eaten a very small snack at 11:15 the night before. Normally, I know better, and don’t eat anything later than 8:00 p.m. now.)
We are very lucky:
— we have good health insurance, so few fear of surprise huge bills for this treatment; we’ll see
— it’s a very good hospital, created by the Rockefellers who live a 10-minute drive east
— we didn’t need the cost of an ambulance (which, we hope, would have been covered); our town has a volunteer ambulance squad as well.
— my treatment was quick, respectful and detailed.
— the hospital was recently renovated so the ER, which we knew too well from a few broken fingers and my husband’s biking concussion, was very different from a few years ago. Now it’s attractive and very comfortable; I was a bit stunned to have a TV screen in the room with me. Each room had an internal privacy curtain and a sliding glass door and an overhead light that didn’t glare into my eyes.
It was so American — each room had a glass plaque by the door with the name(s) of the donors who gave the funds for it.
But I’m grateful as hell for their generosity.
If you’re female, please memorize these symptoms — and make sure your partner/spouse and/or family know them as well.
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.
Since my wedding in September 2011, (when we took a week off locally afterward), I haven’t taken more than four days off in a row. My last extended vacation was in May 2005, three weeks in Mexico.
I’m taking a month off, starting today — but will still blog here three times a week. I’ll also be working on a book proposal and one or two short articles, but only after the first 12 days of rest, relaxation, seeing friends and family, recharging my spent battery.
In the past 12 months, I’ve:
published my second book; done dozens of media interviews and speaking engagements to promote it; written a new afterword for the paperback, which is out July 31; hired an assistant to help me with all of this; negotiated more speaking engagements; addressed two retail conferences in Minneapolis and New Orleans; gotten married in Toronto; helped my husband deal with kidney stones; had my left hip replaced and done 3x week physical therapy for two months; served on two volunteer boards, and additionally visited Chicago and Toronto for work.
Oh, and blogging here three times a week, working with a screenwriter on the television pilot script for Malled (not picked up), and writing for a living.
Kids, I’m fried!
Time to not be productive, which leads me to this essay raises an important question, and one especially germane to any economy premised on “productivity”:
But there are sectors of the economy where chasing productivity growth doesn’t make sense at all. Certain kinds of tasks rely inherently on the allocation of people’s time and attention. The caring professions are a good example: medicine, social work, education. Expanding our economies in these directions has all sorts of advantages.
In the first place, the time spent by these professions directly improves the quality of our lives. Making them more and more efficient is not, after a certain point, actually desirable. What sense does it make to ask our teachers to teach ever bigger classes? Our doctors to treat more and more patients per hour? The Royal College of Nursing in Britain warned recently that front-line staff members in the National Health Service are now being “stretched to breaking point,” in the wake of staffing cuts, while a study earlier this year in the Journal of Professional Nursing revealed a worrying decline in empathy among student nurses coping with time targets and efficiency pressures. Instead of imposing meaningless productivity targets, we should be aiming to enhance and protect not only the value of the care but also the experience of the caregiver.
The care and concern of one human being for another is a peculiar “commodity.” It can’t be stockpiled. It becomes degraded through trade. It isn’t delivered by machines. Its quality rests entirely on the attention paid by one person to another. Even to speak of reducing the time involved is to misunderstand its value.
The only thing this industrial mindset — speed the production line! –– produces in me is frustration and annoyance.
I also attach value to the production of:
deep friendships; a happy and thriving marriage, my own physical and mental health, daily, and weekly, periods of rest and reflection.
I recently asked a friend, who out-earns me by a factor of 2.5, how she does it. The answer was to quadruple my workload, and at a speed I think probably, for me, unmanageable.
My book “Malled”, which describes my 27 months working as a part-time retail sales associate — supplemented by dozens of original interviews with others in the industry — has brought me paid invitations to address several conferences of senior retail executives. I suggest to them every time that focusing solely on UPTs (units per transaction — i.e. why they try to sell you more shit unasked for, than you want) and sales per hour is not the best or only way to go.
But numbers are safe and comforting. When corporate players hit their numbers, they keep their jobs and get their promotions/bonuses. Metrics rule.
Except when they don’t.
I once spent an hour talking to a female shopper in our store. Turns out we had a lot in common. She spent $800, which remained the single largest sale I ever had there. She also asked if I knew a good local psychotherapist. Not many people would have asked that question of a minimum-wage clothing clerk, but she’d clearly decided to trust me. I did know one and recommended him.
A year later she returned, glowing, with one of her teenage daughters, to thank me for helping her survive a very tough transition in her life.
That “transaction” is completely meaningless in any economic sense.
— it enriched the therapist, who well deserved a new client.
— it enriched my customer’s soul, which needed solace.
— it enriched her three daughters’ lives as their mother found help she needed.
— it enriched my heart to know I’d been able to make a good match and help her.
But these powerful emotional connections are routinely dismissed as valueless behavior on any corporate balance sheet — because they can’t be quantified, measured and compared to other metrics.
Which is why I have such a deeply conflicted relationship with capitalism.
How about you?
Do you think working harder and faster is our wisest or only choice?
We all know the standard metrics: graduate college, grad school, marry, have kids, acquire property and a vehicle.
I never had kids, so that typical dividing line into Maturity escaped me.
But for many of us, different moments mark a definite end to innocence.
Here are ten that resonate for me:
I grew up in a family of freelancers whose approach to paying income tax — which is never deducted at source, for those of you who’ve never done it — was, hmmm, variable. One day my Dad said, “I have two pieces of advice for you about taxes.”
“Running and hiding?”
Suffice to say I now have a very good accountant and genuflect to him deeply.
In New York, getting a mortgage is like some bizarro obstacle course littered with lawyers with out-stretched hands. Check, check, check, check!
Knowing — and caring about — your FICO score
For those of you outside the U.S., this is your credit score whose quality determines whether life is pleasant (low interest rates on mortgages, car loans, credit cards) or a hell of slammed doors refusing you access to any sort of credit. Surprisingly few consumers realize what sort of leverage you have with a good score — a lot!
Giving informed consent for my mother’s brain surgery
That was very weird, given how deeply private she always was. I looked, literally, into her head, staring at the four-inch tumor on X-ray that soon, successfully, came out.
Putting my mother into a nursing home
Pretty much the hell you’d expect: having to sell 95 percent of her things and make consequential decisions quickly. Being an only child makes it both easier and harder.
Getting a colonoscopy
For those of you under 50, something to look forward to! (And those putting it off out of fear, it’s no big deal. You have one wearying day beforehand to cleanse you colon, go to sleep during the procedure. Done.)
Knowing your neighbors
When you’re young, single and often behaving badly, you may not want to know your neighbors. Who was that guy/girl skulking out of your apartment? What were those weird noises at 3 a.m.? Once you’re a bit older, maybe traveling for work, maybe with a place you own and/or value more than a dive shared with six roomies, having kind and watchful neighbors is a wonderful thing.
Regular mammograms/Pap smears/prostate exams
I’m always a little stunned when I hear of someone, (who has health insurance, which in the U.S. means these are no-brainers), who skips these essential tests. No one wants to hear bad news. My mother has survived breast cancer, so mammo day is always a little shaky for me. But seriously? Just do it!
Joining a faith community
No disrespect to atheists and agnostics. But for many of us, finding a congenial place to nurture your spiritual growth is a major step. It’s easy to focus solely on family/work/friends/fun — until the shit hits the fan.
Making a will/living will/power of attorney/health care proxy
So cheery! But if you have been fortunate enough to have accumulated anything of value, it’s worth deciding who to leave it to. And facing any sort of major surgery — even childbirth, my mom-pals tell me — means facing the scariest of fears about mortality or severe injury.
How about you?
What milestones have marked your path to adulthood?
There’s a new sound in my life — the click, click of my sexy French crutches — as I learn to walk normally again after two years of 24/7 pain and a gait so altered I started to look like Quasimodo, that ruined my shoes and swelled my right foot and increased the diameter of my right calf by an inch from overcompensation.
It’s been almost a month since my hip replacement, and I’m learning to trust my body again. It feels really good to stretch, to break a sweat and (yay!) to reach my toes.
“Patient” — the adjective, not the noun — is not my most obvious quality. This recovery, from full hip replacement, includes dire warnings about doing too much too soon and how not to push it. More is not better. But you don’t know you’ve done too much until…
Daily, I circumambulate our apartment building and garage in warm, dry weather and our apartment building hallway, where 12.5 laps equals a mile, when it’s wet or really cold. My goal is a daily mile, only after which do I get to shed my $38/pair white surgical stockings I wear 23 hours a day to prevent blood clots.
Physical therapy, three times a week, (and $60 week in copays), is slow, incremental, dull, repetitive — and utterly essential to a full recovery.
When I met my surgeon, I handed him a list of a few of my many sports, and asked how soon I would be back at them. My softball team, having missed me for two years, keeps asking when I’ll return. I’m hoping within six months; friends my age (and much older) who’ve had this procedure have since climbed the Great Wall, hiked Guatemala and climbed four flights of stairs without trouble.
I’ve had to recuse myself from real life for a while, missing a friend’s book party, unable to get to my regular hairstylist in Manhattan, a 45-minute drive or train/cab away, closed off from movies, concerts and anything that would require me to sit more than than 60 minutes at a time I’m allowed.
Maybe because I did a silent 8-day retreat last summer, I’ve really appreciated a time of peace and quiet, of reflection and withdrawal. For weeks, I had to rely fully on my husband for the simplest of tasks, from helping scrub me in the shower, (after an 18-day wait!), to putting on my left sock and shoe, counting out my 10 pills a day, cooking.
I miss his companionship since he returned to work this week, leaving home at 7:30 and only returning 12 long hours later after his commute.
The past two weeks have revealed new sides of my husband, even after 12 years together. I knew he was fun, funny, kind, affectionate.
But since coming home from major surgery, the replacement of my left hip, I’ve seen, (as has he), wholly new sides to his character.
Our days right now are so overwhelmingly focused on my health and healing, (including avoiding infection and complication), that I’ve gotten the whole bed to myself while he sleeps on the (too soft) sofa. I bought a bottle of chlorhexidine, (what surgeons use to scrub their hands with), and latex gloves and, once a day, he uses both to clean and dress my incision.
He’s been making meals, buying groceries, doing laundry, (which he normally does), helping me in and out of bed, putting on my shoes, socks and sweatpants. Helping with sponge baths, since no showers are allowed for two weeks.
The hardest part? Wrestling me in and out of my (so sexy!) surgical stockings, thick, tight white hose that go up to my thigh and which I wear 23 hours a day to help prevent clots.
He hands me the 10 pills I need every day, at the time I need them, after drawing up and taping to the wall our daily schedule that starts at 7:30 a.m. and stops at 6:00 p.m. He cranks up raucous rock and roll to boost my energy for physical therapy which I have to do two to three times a day. He brings me me a well-hammered ice pack (four times a day.)
He walks slowly and patiently with me as I do my crutch-aided circuit a few times around the garage.
As someone who prides herself on being feisty, strong, quick-moving, independent and modest, you can imagine how this has felt for me. Weird!
It’s one thing to be seen naked when you feel sexy, quite another when you’re bruised, sore, covered with surgical magic marker notations.
Instructive, to say the least.
He apologized this week for not getting me a Valentine’s Day present; I brought him shoes, socks and a sweater from one of his favorite shops, Rubenstein’s in New Orleans.
I can’t imagine a greater gift than a man willing to give up three weeks’ vacation to nurse me back to strength.
One of the most essential elements of healing a body that has been injured, damaged or ill is to soothe and comfort the psyche, the soul of the person whose corporeal armor has, in a significant way, (even in the aid of better health), been pierced.
But it’s the piece that is consistently left out. When you leave hospital after a major surgery, you’re handed a thick sheaf of instructions, some in boldface type, all of which are — of necessity — focused on the physical.
Who addresses the needs of the soul?
Which is why, when I met a fellow hip patient in the hallway, a former dancer, a woman my age, we couldn’t stop talking to one another about how we felt.
Not our bones or muscles, but our hearts and minds.
A sense of shame and failure that years of diligent activity and careful eating and attention to posture…led us into an operating suite. The feeling of isolation, of being cut from the herd of your tribe, the lithe and limber, the fleet of foot. The fragility of suddenly relying very heavily on a husband whose innate nature may, or may not be, to nurture.
And a husband who knows all too well that physical intimacy is almost impossible, sometimes for years, when your loved one is sighing not with desire but in deep pain. When your hips simply can’t move as you wish they would, and once did. It is a private, personal loss with no place to discuss it.
I’m deeply grateful to know a few women like me: feisty, active, super-independent and all recovering, now or a while ago, from hip replacement. Every tribe has a scar, a mark, a tattoo.
I entered the hospital early Monday morning for hip replacement surgery and in a very short period of time — a little over two hours — my doctor told my husband Jose, that it all went well. He even handed him a small x-ray showing the new device secure in its place.
I’m scheduled to be in the hospital for three days and the physical therapy team assigned to me hopes to have me walking down the corridor by the end of today, my second full day.
My husband was kind enough to develop an email blast list, containing the names of family, friends, colleagues, etc. This allows him to write one letter and send via the list which then goes out to our circle of support. Well wishes have poured in from Tucson to Tel Aviv to Toronto. One friend who was at the Pyramids in Egypt even wrote saying he was “sending the power of the pyramids” to me as he thought about me. Flowers have started, with one NTC friend, ending a lovely bouquet of pink, yellow and orange flowers.
My hope is that I will be posting once again as soon as Friday of this week. Stay tuned, thanks for checking in and for all your good wishes.
It all started out thanks to my blogging for True/Slant, which is where the editors of this magazine found my writing and liked it enough to ask me to write about my miserable left hip, whose arthritis worsened severely in January 2010, just in time for me to combine writing a memoir with — agonizing pain! Five specialists! Xrays! MRIs! Heavy painkillers!
The corticosteroids I took to reduce the inflammation then destroyed the bone in my hip — necessitating hip replacement (which I am trying to get up the nerve to just get done.)
The cover shoot was a hoot. Five (!) strangers converged on our small suburban apartment: an art director and photographer from Atlanta, a make-up and hair artist from Chicago, a photo assistant from Brooklyn and a wardrobe stylist from New York City who brought an entire garment rack filled with possibilities they had chosen for me, based on my many bossy emails of what I refuse to wear and (shriek) my clothing size.
Brave souls, all of us.
It took 4.5 hours to achieve this shot. What you can’t see is the July sweat dripping down my back, nor the photographer sliding up and down my living room wall for support, also drenched from non-stop focus and exertion. Nor the art director, Susan, peering after every shot at her laptop to see how it all looked.
Luckily for me, the photographer, Kevin, and Susan and I had had time the day before to enjoy a long, leisurely lunch and have a chance to get to know one another personally, which made the shoot much less scary than it might have otherwise been. They’re lovely people, warm and down-to-earth, so I never felt intimidated or nervous.
(Thanks to my new book and other projects, I’m fairly used to being photographed for national publication. I even had my pic taken in a bathing suit for some paid web writing I did about my hip.)
The necklace is my own (Ann Taylor), as are the invisible earrings. I’m leaning against our sofa, with lots of artificial light thrown in. The curly hair is natural.
I never thought in a million years this might happen, but it’s already prompted some kind and supportive emails from AT readers.