The Kingdom of the Sick

My friend Geoff Kronik recently sent me an essay, “Being Ill, Living Well” by the English philsopher Ian James Kidd. (You can read the whole essay here, published in Aeon magazine.) “Health,” writes Kidd, “is linked to ideas of agency, capability, freedom and possibility – standard entries in the roll-call of human flourishing.

My first chemo treatment, Spring 2014.

“Illness, by contrast, comes with constraint, fragility, loss, and restriction, the darker dimensions of what Susan Sontag called ‘the night-side of life.’”

Perusing the essay today, it was hard for me not to read a metaphor in it for the current state of affairs in the U.S. Many of us U.S. citizens, as we contemplate the D.T.[i] administration, will feel a resonance with this description of illness and how illness affects our sense of self. For hasn’t our nation fallen ill – badly ill? Are we not now experiencing “the night-side of life” in the U.S. body politic?

We are staring down the dark 4-year-long tunnel of an administration whose policies include the dismantling of our healthcare and education systems, a complete disregard for the treaty rights of indigenous people at Standing Rock, the banning of refugees fleeing genocide, the forcing of taxpayers to pay a border wall, and reinstating and greatly expanding the global gag rule. To name only a few ways in which the D.T. administration seems dead set on curtailing basic human rights for both U.S. and global citizens.

“‘Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick,’” Kidd reminds us, quoting from Sontag’s book, Illness as Metaphor. “‘Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.’”

If you’ve been through a life-threatening illness you may remember a time shortly after your diagnosis when the world you’d been living in felt suddenly alien to you. It’s as if you’ve stepped through a mirror and now see that familiar old world in reverse. When I was diagnosed with breast cancer in March 2014, the first several days were the worst. Returning from the first consultation with my oncologist, I walked back into Dave’s and my Chicago apartment and felt it no longer belonged to me – or that I no longer belonged there. There were my books; there was my computer on my writing desk where I’d left it. There were the plants I’d watered just a few days before – before the phone call confirming that my recent biopsy showed I had cancer, before my old reality fell apart.

A bell jar -- in case you've

ever wondered!

And yet I seemed to be seeing it all through a screen or a fog. It was the closest I’ve come to understanding what the heroine of Sylvia Plath’s novel, The Bell Jar, feels like when her depression descends upon her, like a bell jar – a sound-deadening, air-stopping jar that closed her off from the rest of the world. “To the person in the bell jar,” Plath writes, “the world itself is a bad dream.”

I have cancer. I have cancer. I have cancer. For the first day or two after my diagnosis, it was the only real thought I had. It colored – or, I should say, sucked the color right out of – everything and everyone in my environs.

I had stepped, as it were, into the Kingdom of the Sick. Though I soon learned how to live in that world – though I lived there for half a year -- there were times, periodically, when I’d stop and look at someone nearby me, someone enjoying the evident fullness of health, and be deeply jealous of them. That used to me, I would think. Would I ever feel like that again? Would I ever be able to trade in my current sad passport and re-enter the Kingdom of the Well?

Living with cancer, or with any life-threatening illness, brings a new undercurrent of fear and anxiety into your daily existence. It’s only natural. Of course it does. But for some of us, Kidd suggests, it might be possible within a period of illness to find “aspects of the experience that promise to yield moral growth.” For some people, illness “can be edifying – conducive to the cultivation and exercise of various virtues.”

Getting ready for a later chemo treatment, Spring 2014.

My friend Geoff shared this essay with me because we’ve both faced a serious illness in our recent lives and have since reflected on the surprising, strange gifts that, for us, came out of those experiences. Yes: strange gifts. I do mean that.

It’s not to say that I’d wish a catastrophic illness on anyone – no more than I’d wish this current U.S. presidency on my least favorite dog. Echoing James Ian Kidd, I don’t want to paint too universally rosy a picture of illness. I don’t want to be guilty of “bright-siding” illness, to use Barbara Ehrenreich’s term for people who try to turn every story of sickness into a story of triumph. With every disease, as with the D.T. administration, there are and there will be dark repercussions, no matter what good we do pluck from the disaster.

My friend Janet and I, before one of my chemo treatments,

Spring 2014.

But for me, my experience of cancer was also an experience of the depth and breadth of the community I had around me. I became aware and appreciative of that support system in a way I might not have before. Before cancer, I always worried, What if bad things happen and I’m far away from my family – from my community of origin? But bad things did happen, and the people around me here were amazing. From my yoga teachers in Chicago who did meditations for me, to my sisters and sister-in-law who flew from the East Coast to spend time with me, to my friend Janet aka D.J. Thielke who accompanied me to chemo sessions, to the hundreds of people who sent me cards and prayers, I was surrounded by kindness. And I have not even mentioned my husband, Dave, who was a strong steady, unwaveringly kind partner through it all. Yes, I had cancer. But goodness came at me from everywhere.[ii]

After 4 months of chemotherapy and a double mastectomy in August 2014, I received a new word from my doctors: I was free of cancer. Once I’d moved through my first reaction – to weep with gratitude and joy – I came to grips with a new understanding. My life had just been snatched from my hands and then given back to me whole. (Or almost whole. I was minus two boobs. But, you know, close enough.) My life, my dear mortal life: It was more precious than I ever knew.

Dave and I, Summer 2014.

My experience of illness rang a bell in my head, the reverberations of which still beat through me daily: You are mortal. This time is short. What do you want to be doing?

The answer was: I wanted more. As Prior Walter says at the end of Angels in America, “I want more life. I can't help myself. I do. . . . So we live past hope. If I can find hope anywhere, that's it, that's the best I can do. It's so much not enough. It's so inadequate. But still bless me anyway. I want more life."

For me, this meant trying new things: seeing and hearing and tasting and smelling and living in more of this world. It meant asking: what else that is good in the human experience could I bring into my life? I wanted to go to new places, meet new people, and have experiences unlike any I'd had before.

I think it freed Dave, my husband, up too. One morning soon after I received my good health news, he and I were getting ready for the jobs to which we'd been going, with faint enthusiasm, for almost a decade by then. Dave said to me, out of the blue, “Do you want to move to a different country?”

I turned right around and said “Yes!”

It couldn’t have been quite that simple – how Dave and I got from there, our Chicago apartment on an October morning in 2014, to our new lives here in the U.K. Yet, in retrospect, it does feel almost that straightforward. We were ready for change, for adventure, in a way we might not have been previously, before both our worlds had been rocked.

For the next several months, we applied to every international job we could find, and when the job opening appeared at Durham University in England, Dave said to me, “Should I try?”

Palace Green, Durham. I'm not lying:

Dave's office is in the building next to the Durham Cathedral.

The postal address to which he would send his application was “Palace Green.” I’ll never forget that. It seemed like a fairytale, really.

“Do it,” I said. “You never know.”

And here we are, more than 2 years later, happy as peas in a pod.

All right, it’s a rose-tinted story. But it really did happen that way. And Lord knows we need to hear rosy stories.  

What of the new U.S. presidency, though? If it is a national illness – which I firmly believe that is – then we are talking a 4-year-long illness. A 4-year illness may require a different mindset, different strategies, than a “mere” 6-month-long bout. As Mirah Curzer writes in her essay, “How to #StayOutraged Without Losing Your Mind,” “This is not going to be an easy 4 years."

"We’re going to be subjected," writes Curzer, "to constant gas-lighting by [D.T.] and his administration. We’ll be dealing with a ferocious, multi-front attack on the entire progressive agenda, without exception, and a lot of it is going to succeed. We’re going to helplessly watch institutions we care about and depend upon destroyed. The D.T. years are going to be emotionally exhausting and deeply traumatic for all of us, but particularly to those dedicated to protecting the vulnerable and preserving democracy."

Curzer lists 4 basic strategies for “sticking it out in the picket lines for the duration of the D.T. presidency” – strategies which will prevent us from “burn[ing] out in the first 6 months”:

My baby niece, Asha, at the Women's March

in Charlotte, NC.

1. Don’t Get Used to DT — Get Away From Him
2. Focus Your Energy on One or Two Issues
3. Make Activism Fun
4. Take Care of the Basics

By “taking care of the basics,” Kurzer means, take care of yourself –  thoughtfully, deliberately, daily. Included in this self-care are: getting enough sleep, eating well, seeing your friends, getting regular exercise.

For those of us who pray, I’ll add my sister Linda King Van Benschoten’s recent idea: Last night she and some friends were trying to help each other stay sane through the most recent bout of D.T.-related news. “We are so enraged by D.T. and sick on our stomachs,” Linda wrote to me yesterday. “Trying to find some peace.” Her friend Natalie suggested that they pray a common prayer together, at a specific time every day. “We will be on our knees,” Linda writes, “because nothing else seems appropriate.”

I think I know what she means. It’s not that there aren’t other actions we can and should take in resistance to the evil streaming out of the White House. For example, the Women’s March last week was a moment of encouragement and euphoria for the many of us who want to resist. It was, however, one single day – and most of us cannot engage in outward actions of this dimension every day or even weekly. What can we do, then, on a daily basis? What can we do that is not only sustainable over the long haul, but which gives us new energy, new life, as we do it?

The answer will differ from person to person, but I like what Linda’s friend Carol Schierlmann did last night. Inspired by their plan to pray daily together, Carol wrote a prayer of her own.  I think it’s beautiful and, since Carol has encouraged its sharing, I’ll pass it on for those of you who’d like to pray along, too:

Let there be a wall around my own heart to prevent

it from turning this fear and this grief into hate.

Strengthen that wall each day, Lord,

because the world will keep on eroding it.

Open me when I start to close my mind.

Shut me down, Lord, when I need your respite.

Guide me, I pray,

for I am too lost in sorrow to guide myself.

Help me to lift up, to give hope,

to speak your truth to both power and to weakness.

Give me words when I lack them, courage when I am drained,

sleep when I am weary, and love that is ever replenished.

The Women's March in Barcelona, Spain.

(Photo courtesy of The Guardian.)

A major illness -- illness of the body, illness of a nation -- can turn the world upside-down. Sometimes, it also affords a new way of seeing, of being, of moving. What does this current disaster clarify for you? How does it perhaps push you out of the pattern, or even the rut, that you may have been in before?

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[i] Part of my own self-care, throughout the current U.S. administration, will be to avoid ever writing or saying the name of the man in the White House. I think I’ll refer to him, in polite company, as D.T.

[ii]  I’m indebted to Adam Grossi (speaking of my Chicago yoga teachers!), who in May 2015 interviewed me about living through cancer and the healing properties of yoga. I’ve taken most of this paragraph from Adam’s interview.

[iii] I’d experienced a similarly clarifying and life-changing moments about 10 years before, as I came to the end of my 30s and Dave and I were living in Guatemala. (Perhaps such moments are features of entering and moving through middle age.) I’ve written elsewhere about the first pivotal moment; in short, a brush with death in Guatemala caused me, for the first time since childhood, to return to fiction writing.