It’s been a rough week, slowly recovering from my last radiation treatment — October 15 — and still fighting its cumulative fatigue and insane itchiness on my left breast. I was at my wits’ end, crying in public, (I almost never cry anywhere), just done.
I had a follow-up meeting with the radiation doctor, to be told I’d gained (!?) 10 pounds in six weeks and now needed blood tests to see why. This despite seeing my clothes fit more loosely and gaining compliments on my apparent weight loss.
Our GP, thankfully, saw us an hour later and did the tests; (I’m fine.)
But I started crying in his office, weary of all of it.
I apologized for being a big blubbering baby, ashamed and embarrassed by my inability to control my emotions.
“You’re normal,” he said, calmly and compassionately.
Jose, my husband, sat in the room with us, listening as I absorbed this pretty basic fact.
What, I’m not made of steel?
Kelly’s tend to be (cough) ambitious and driven; three of us won major national awards in the same month, when I was 41, my younger half-brothers then 31 and 18; I for my writing, they for business skills and for a key scientific discovery, (yes, the youngest!)
We tend to aim high, compete ferociously for as long as it takes, (each of my books, later published by major NYC houses, were rejected 25 times), and usually win, dammit!
We keep our emotions very close to the vest and keep small, tight circles of intimates. I don’t really do acquaintance.
Being weak, scared, in pain, exhausted and, even worse, letting others see us in this condition?
I’m slowly getting used to it.
Compassion for my fragility is my new oxygen, as much for myself as the gratitude I feel for that shown to me.
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
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?
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?
The sweetie needed some tests, and one of them involved a CAT scan with a dye injection. (Looks like he’s OK, thank heaven — only a kidney stone. I shouldn’t say only, as everyone who’s had one or knows someone who has says it is excruciating.)
I’m the one who’s usually lying on the gurney/MRI platform/X-ray table. We’ve been back and forth to our small local community hospital so many times in the past decade — thankfully, for nothing serious — we’re on a first-name basis with the doctor who works the overnight shift at the ER. On one of our last visits, he asked: “So, whose turn is it now?”
It was my turn, then, with a fever of almost 104 and a spot on my lung so dark and ominous he drew the curtain and said it might be lung cancer. The sweetie, a photographer by trade, asked to see the films, as he can read negatives with the skill of a radiologist, even if he doesn’t know what he’s looking at.
It turned out to be only pneumonia, but it still meant three days on an IV, sharing a room with a 95-year-old who startled awake at midnight, sat on the edge of my bed and tried to pull out her tubes. I coughed, as one does with that disease, so hard my body ached from exhaustion; I wrote an essay about it for The New York Times.
This time it was my turn to watch the phlebotomist wheel in her cart and overhear her explaining to him how his body would react to the contrast dye. I kept him company as long as I could. In our 11 years together, I’d never seen him lying flat inside a diagnostic machine, grateful for this and shocked at the sight.
I sat and waited, staring at the lavender wall trim and burgundy cupboards and a cheerful British print on the opposite wall, aware for the first time how soothing it all was and how much I needed it to be so.
My last ER visit was January 2009, the beginning of a five-month odyssey to figure out my painful/arthritic/inflamed left hip — I was in so much pain I could barely walk and I do remember admiring the handsome design of our shiny new ER.
When I’m scared, and I admit to not loving going anywhere near that hospital by now (three orthopedic surgeries since 2000, a hip replacement my next, and more than five times to the ER, for everything from a broken finger to a mild concussion the sweetie incurred in a biking mishap) I do not want to be soothed or distracted by television. Old copies of People don’t do it for me either.
The sweetie, a devout Buddhist, did a lot of deep breathing to stay calm.
I’ve spent a fair bit of time around hospitals, thanks to my mother’s various illnesses, which included a mastectomy and a brain tumor (both of which, 10 years apart) she survived. I’ve seen her in hospitals from London to Sechelt, BC, and have learned to make medical staff crazy when necessary with my direct questions and insistence on information.
We’re glad we have a good hospital nearby, deeply grateful for good health insurance and generally good health, and knowing we can get there within a 10-minute drive.
It’s been a fun year so far for me: X-rays, MRIs, steroids, a cane, even a walker. My left hip is a mess, and a surgeon wants me to replace it, now.
While I have been resisting, the bone has gotten damaged, so next month (right after vacation) I’ll start a drug to repair it, putting me on crutches for three months. No more softball this season.
There have been many days I feel overwhelmed by it all. I need backup.
The sweetie has — as anyone living with, and caring for, someone with chronic illness or injury knows — put up with a lot. I walk like a drunken sailor and awaken many nights at 3:00 a.m. with pain. So he decided to take my health into his hands and, while I’m a continent away on vacation visiting family and friends, called my doc, a man often ferocious and intimidating.
But my guy is, too when necessary; we have a meeting for all three of us in two weeks.
The sweetie wondered if he’d overstepped his bounds. I was surprised the doctor spoke to him, but I am relieved and grateful as hell that I now have backup, someone else in the room while the multi-syllabic words pour forth.
When you’re sick or injured and in pain and scared, it’s damn hard to hear clearly and remember everything. I got the news about the latest hip issue while standing alone in the baggage claim area of Vancouver airport. I was shocked, overwhelmed, tried not to cry in public. (When I learned that my Mom [now fine] needed neurosurgery for a brain tumor, I was standing in an Ohio field with 3,000 shooters behind me in competition. Bad news shows up everywhere.)
This week, it was my turn — as my Mom’s only child, albeit living on the opposite side of North America and in another country — to advocate for her. We went to see her internist so I could find out what she’s doing for my Mom (or not.)
My Mom lives in Canada, and it’s a different game; doctors are busy and some tests and procedures harder to get or get quickly. You can’t push Canadian doctors as hard as Americans because there’s no profit motive driving them to behave better, or avoid a lawsuit.
It was an interesting meeting — it could not have lasted more than 15 minutes. It was tough to cover that much territory so quickly. It went as well as one could hope, but there’s much left to do and to follow up.
Have you acted as someone’s medical advocate? Or had one?