“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.
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.”
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.
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.
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!”
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.
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“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.
|
- Don’t Get Used to DT — Get Away From Him
- Focus Your Energy on One or Two Issues
- Make Activism Fun
- 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.
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The Women's March in Barcelona, Spain.
(Photo courtesy of The Guardian.)
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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?
[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.