Friday, 3 March 2017

In Praise of Denial?

April 2014 -- getting my head shaved,
at the start of my chemo treatment.
My experience of breast cancer began, as it does for many women, with my finding a lump in my breast. In short order, this discovery led to a mammogram, a follow-up mammogram, a biopsy, and a diagnosis. Bing, bang, boom. Less than one month separated that initial cold shock of fear in the shower when my fingers landed on the new bump to my first sitting down in the chemotherapy chair.

For the particular kind of breast cancer I had, my treatment involved four months of chemotherapy first, then a double mastectomy. The goal of the chemo was to shrink the tumor, pre-surgery, as much as possible – ideally, to shrink it right out of existence.

But from the day when I found the lump – the day that began my whole cancer experience – I never touched that lump again.

I knew it was there, especially at first. In those last weeks before chemo, the lump was just really sore. Likely this was because it had been prodded and poked a great deal. But, too, I think the soreness grew out of my new hyper-awareness of this thing – this intruder, this alien form – in my body. I perceived it as sore.

April 2014, in Madison, Wisconsin.
Early chemo treatment.
My awareness of the lump continued, but in a different and ultimately much more positive way, during the first several sessions of chemo. Almost as soon as the chemical drip started up, I felt a crackling sensation in the exact place in my breast where I’d found the lump. Only there, a square half-inch, perhaps: an extremely localized sensation. It was as if the thing was on fire, being burned up, burned away – a visualization I found very helpful. When I mentioned this crackling or fizzing sensation to my chemo nurse, she replied, “Oh yes, a number of patients here talk about that. It’s almost as if the chemo knows exactly where in your body it’s needed, and it targets that place.”

Whether this is medically provable or not, I don’t know; I never did any research into breast cancer nor into its various treatments. (More on this in a moment.) But those few times in the chemotherapy chair were the only occasions, after my initial discovery of it, in which I was physically aware of my lump.

I avoided the thing – and any physical awareness I might have of it – with a vengeance. I never lay on my stomach, for fear of feeling the lump when the floor or the bed pushed back against it. In yoga, whenever we did any prostrate-on-the-mat postures, I always adjusted so that my chest was never mashed into the mat. Putting on or removing a bra, I was diligent not to touch – never touch – the part of my breast where the lump was, or had been. (I don’t mean to get too graphic here, but it’s hard to talk about breast cancer without speaking, too, of your breasts.)

My strategy throughout my cancer treatment -- right up to the post-surgery final report that my body was, thank God, clean of cancer -- was to visualize my breast as a water balloon, filled completely with water and nothing else. Clear and light! Nothing in there to worry about! As long as I never felt around for the lump, this visualization was increasingly easy to sustain. And it helped me feel better already.

Midway through my chemotherapy sessions, my oncologist made the announcement that he wanted to feel the lump again for himself, to see if or how much it had already shrunk.

I must have made a face when he said this, for he did a little double-take at me in response. “Is that all right with you?” he asked.

I gathered myself. He was my doctor. Of course it was all right. I said, “Sure. Do what you must. Feel the lump.”

“Don’t you ever feel it yourself?” asked my doctor.

“Not on your life!” I said, vehemently.

 “I don’t think I’d be able to stand not checking,” my doctor said. “Curiosity would get the better of me.”

I tried to explain that curiosity was not what was driving me then. It was, rather, the daily or hourly conviction that my breast was a water balloon.

He and his nurse both laughed a little. They may have been scandalized. The nurse even said something like, “Deny much?”

I was somewhat offended by this. I probably looked it, too, for the nurse quickly added, “Well, but at least you come to all your appointments. At least you are getting your chemo.”

That was the main point, I thought: to do everything I had to do to get better again, and then think no more about my lump, or about cancer at all, if I could help it. I did attend all my appointments. I got my chemo and my white blood cell-boosting injections; I gargled with salt water three times a day to prevent infections, and I avoided the sun, which because of chemo could burn me more easily; I cut my alcohol and red-meat consumption down to almost nil, and I rested, the days after chemo. I did everything the doctors told me to do maintain my health and more importantly get rid of the cancer. I did it assiduously. But I did not want to give the disease any more of my time and energy than was necessary. I did not want it to dictate my waking hours.

The end of that little story in my oncologist’s office is that I did let him palpate the lump, and it was smaller, and he was quite pleased about this. As was I. But as soon as I got out of that room, I went right back to my visualization of my breast as a water balloon. I never did touch my lump again, and after a while, it was gone.
This patient looks somewhat less disgruntled than
I probably was.

When I was first diagnosed, my oncologist had given me a huge and quite beautifully produced book on breast health and breast cancer. It was pink and white – of course – and chunky and thick as a doorstop. The oncologist had even marked some chapters for me to read. I took it home and put it on my living room bookshelf. I thought I would read it someday. But a strange thing happened, those first weeks after my diagnosis. I found myself moving that breast book higher and higher on the bookcase, until it was practically wedged under the ceiling. I eventually put it in the recycling bin, without having once cracked its covers.

The same thing happened to the shoebox-sized package of information that the local breast cancer survivors’ support group sent – it got recycled, too. Why should this one aspect, grave though it was, take center stage in my life? Why should I give it that much attention, when there were so many other things I could be doing, which felt much more energizing and affirming of life?

Once, during those months, a friend sent me a video clip of a project in France, wherein cancer patients were given surprise makeovers in order to distract them—“if even for a few moments”—from their illness. Watching that clip, I was mystified by the idea. Were these people really not able to forget their disease for a few moments?  As I wrote in my journal that afternoon, I could by then go for whole chunks of the day without a single thought about cancer.[i]

In dealing with a major crisis such as a life-threatening illness, writer Michael Kinsley notes two basic strategies: confrontation and denial. They are “equally valid strategies,” Kinsley opines in a 2001 essay for Time magazine, and “the choice between them is one of personal taste.” Kinsley had been living with Parkinson’s disease for eight years by the time he wrote this essay, though almost no one else knew about it. In his essay, “In Defense of Denial,” Kinsley first revealed his disease to the public. Shortly after his own diagnosis, he writes,

“I chose denial. If ever you're entitled to be selfish, I thought (and still think), this is it. So I see a good doctor, take my pills most of the time and go about my business. I couldn't tell you some of the most basic things about Parkinson's and how it works. .  . . Most days for the past eight years I've hardly given a thought to Parkinson's disease.”

Years later, in a 2015 This American Life podcast, “Don’t Need to Know Basis,” Kinsley went on to explain why he’d chosen denial over confrontation. The strategy of confrontation, Kinsley argues, is the one that our Western culture strongly prefers. In times of severe illness, cultural expectations dictate that we join the community of fellow sufferers; that we put our illness at the center of our lives. To some degree, we build a new identity around our disease. Denial, however, involves trying to live your life outside the world of your illness. While you follow your doctor’s instructions – while you do what is medically needed –– you dwell on your disease as little as possible. You don’t study it; you do not join groups; you make no more concessions to your illness than are absolutely required. In choosing denial as his initial response to Parkinson’s disease, his interviewer notes, Michael Kinsley gained “eight years of privacy and relative normalcy.”

Michael Kinsley.
The word denial has negative connotations, of course. I’d like to find a more positive way to express this approach to living with illness. What term would work better? “Controlled attention” or “limited attention,” maybe? The level of attention that allows you to respond to your crisis while also continuing to live your life as fully and joyfully as you can.

How we react to crisis depends on our individual context, of course. As Ian James Kidd remarks in his essay “Being Ill, Living Well,” a person’s response to grave illness depends “on many things – the nature of the illness, one’s temperament, the sorts of practical and social support available.” In other words, each person’s experience of illness is different, and I suspect that even an illness as common as cancer manifests in a slightly different way in each and every body.

In short, I don’t mean to be prescriptive as I suggest that a healthy form of denial – of “controlled or limited attention,” if you will – may be one possible response to the current political crisis in the U.S. I don’t think such a response is for everyone. For some people, I am convinced, keeping up with the hourly news cycle from the White House is galvanizing. -- energizing. Perhaps those individuals are the real activists. They are, at least, more temperamentally suited to that position.

Joyful activists -- including Bella Abzug.
At the same time, I’m aware of a number of friends who, for the past month, have felt trapped in a cycle of despair and anxiety caused by absorption in the U.S. news feed. I’ve heard writers say they can no longer write; artists say they can no longer make art. With some friends, it’s not just that they’ve become less productive, but that they feel paralyzed.

I sympathize with the way the news from the D.T. administration can suck you straight down a black hole. The news is so bad, so often, we can’t help but be mesmerized by it, in the same way our eyes follow a car accident on the highway, often against our own will. Too, there’s the fear that by not paying close enough or regular enough attention to news from the White House, we are shirking our duties as citizens. In the first months after the U.S. elections, I tried to keep up but I couldn’t. I found the news cycle demoralizing. I could hardly stand to hear D.T.’s voice. Still, I’d go through spasms of guilt over not staying on top of each new development. Did you hear what D.T. just said – or did – or grabbed? a friend would ask, and I’d freeze with guilt. I did not. I had not been doing my duty.

With time, though, I find I react to this new disease of our country much as I did to my own, personally, three years ago. I don’t want to give it any more of my energy than I have to.

It’s not that I don’t despise the ideals and policies of the current president and the people with whom he’s surrounded himself. It’s not that I don’t stand against the current administration with every fiber of my moral being. I do, and I do. And I’ll continue to let my representatives in Congress know about it, through at-least-weekly emails and calls. (They don’t want to hear it, I’m sure. I am telling them anyway.) I’ll continue to donate money to organizations that push back[ii] against the D.T. White House. I will vote in 2018.

I’ll take my chemo, in other words. I’ll get my shots. I’ll avoid the sun and wash out my mouth with salt water, and I will rest when I have to.

But I will not let this disease diminish the light I’m able to bring to the world. I want to find a livable balance. A balance between my fear of not knowing enough – of not paying enough attention to the U.S. news cycle, whatever “enough” may be – and refusing to let the spew of evil emanating from the White House prevent me from doing my work.

April 2014 in Madison, Wisconsin.
I’m making an effort these days not to check the news feed until late afternoon, when my writing is done. When I’ve contributed what I can for the day of my energy and talent to the work I believe I’m called to do – to making my art.

I think we each have to monitor ourselves. If the news cycle makes you want to stand up and fight, then thank God for you. But if it paralyzes you or makes you less productive than you'd be otherwise, then I hope you’re able to step away from it. I hope you’re able to keep making the contribution to the world that you alone are able to make.

The impact or size of the work doesn’t matter. What matters, rather, is not letting D.T. and his minions take that from us. Not allowing them that much power.  

#     #     #

As I write this, I keep thinking about what the journalist and breast cancer survivor Barbara Ehrenreich termed “bright-siding”: the impulse, within the Western world, to turn every story of illness or crisis into a triumphant narrative. I don’t want to be guilty of the kind of positive thinking that tries to make light of a real calamity. I want to acknowledge that with this presidency, as with any major illness, there will be repercussions even after it’s over—even after DT is replaced, please God, by a wiser and more compassionate president; even after an ill person has been given a clean bill of health once again.

On a somewhat related note, two announcements:

1.      Many of you know that I was scheduled to have a hysterectomy in February, for complications caused by the post-cancer drug I now take. That surgery has been postponed until 22 March. I hope to write about my learning to be a patient in the U.K. – where the National Health Service works quite differently from what I am used to – for my next post in Wuthering Yankee, two weeks from now.

2.      From now on, I'll alternate between writing at Wuthering Yankee on one week, and at Pink Wig Redux on the next. In solidarity with several close friends and family members who are now going through cancer, I've decided to resurrect the blog I wrote 3 years ago, during my own cancer treatment. (That blog was called The Adventures of the Pink Wig  – hence the "new" Pink Wig Redux.)  

[i] This is not to say that an undercurrent of anxiety didn’t run through those months of my life. It did. But it was that only: an undercurrent, not a tidal wave.

[ii] By the way, I love that this list of organizations that push back against the D.T. administration comes from Cosmopolitan magazine. The resistance is everywhere!


  1. thanks pgk--I think we all need to find our own light-- wherever that happens to be-- for me NOW it is SSB--- what a blessing. also much happiness thinking about our time with you in august!! peace--mom

    1. Thank you, Mom! I am glad you are finding your light at the beach! (Now we just need to get you hooked up with your own way of signing on to BlogSpot.) ;-)

  2. As a life long Oncology/Hospice RN, (I still work in as a chemo nurse two days a week), I never tire of hearing people tell their stories. There is no right or wrong way through the journey. Working in Brooklyn versus Indianapolis. I also have has to understand all the cultural issues that affect how people cope with devastating news. It has really stretched my preconceived notions of coping with loss. Thank You.

    1. Thank you for the great feedback. I agree: there are as many ways to get through the journey as there are people on the path! But it's always easier when there are compassionate listeners such as you along the way.