Don’t think about a white horse

“Hello!” she says. “You’re looking great.”

A heartbeat passes as we fall through the air.

“How are you?”

“Oh, you know,” I say, trying to help her, to help us both land this thing safely.

Somewhere, a white horse paws at the ground and snorts.

Don’t Think About A White  Horse”, a guest post for Anthony Wilson

Every now and then I get asked to write a guest post on someone else’s blog. I’m always glad to be asked, and to think that I might, but when it comes to doing it, I find it much harder than I expect.

I’ve just made an exception to this habit of not actually doing it, and written a guest post for British poet and poetry scholar Anthony Wilson, on my experience of returning to work after cancer treatment.

The post is called “Don’t Think About A White Horse“, and I’m glad to link to it here because it will take you to Anthony’s beautiful poetry blog, and also to his own writing on his cancer experience.

Through this time I’ve been very grateful to other people who chose to write publicly about their cancer. Cancer treatment is an intensification of time in which it’s often hard to see all that far ahead, and sometimes quite frankly it’s better not to look.

The best piece I’ve seen on the impact of illness on working time itself (the time of bills, and rent, and the money that’s got to be earned to keep your dependents in shoes) is poet Anne Boyer’s extraordinary essay “This Imaginary Half-Nothing: Time“.

Chemotherapy is as difficult as you think, and it isn’t as if sickness abandons its temporal weirdness just because the bosses have refused the sick worker enough time to rest. Pain continues to stretch out the seconds while also obliterating them as it has for the human forever. And for the very ill, death still feels, as it apparently has for centuries, both much too near and sometimes too far — like walking through a blizzard to a warm shelter which you know to be the jailhouse to which you are finally turning yourself in. Sick time, despite all of Capital’s inventive temporal bullying, is its own stubbornly and uniquely distorted experience. It is just that in these days, along with sickness’ regular deformations, there is also contemporary life, which is incongruous with living, also with staying alive.

I began this cancer while reading Ingeborg Bachmann’s Malina, which began: “But I had to think long and hard about Time, since ‘today’ was an impossible word for me.” I read it in a lot of waiting rooms, waiting to find out what was wrong with me. Diagnostics are their own timefuck, particularly when you know the tissue-based insights which you anxiously await are going to be some version of doomed: Where can a person be anxious to know what she doesn’t want to know? Only drowning in a stream of fast-slow minutes.

I relate to all of this, but it’s important to make clear that I’ve been incredibly well cared-for in my working situation, for two reasons.

First of all, I’m not a casual academic. Hourly paid academics typically get a 25% loading on their hourly rate to cover leave provisions. There is no way at all that this could stretch to cover cancer time, even supposing that 25% was tidily put away for years. Like other shift workers, academic casuals are knocked sideways by serious illness and accident. The first person I knew in my career who was diagnosed with cancer was an academic casual who had to keep working through chemotherapy to support her family, and I now know much more about the human cost of this.

Chemotherapy really is as difficult as you think.

The other factor that has supported me is that at the place where I work, every decision has been made with compassion and generosity, from the way that my sick leave has been handled by HR and my immediate managers, to the practical care of my close colleagues and the students we work with. I’ve been given more than I asked for, over and over.

But it remains the case that in cancer care there’s a well-recognised deficit in providing resources that are meaningful for people returning to work after cancer—which is the increasingly common outcome in the most treatable adult cancers. The particular challenge of having oncology patients (which is what we still are) as staff under your management, as colleagues and as workplace friends leaves everyone falling back on adhoc interpersonal skills.

This is why I wrote Don’t Think About A White Horse, and at the moment it’s dedicated to the colleague who yesterday brightly offered to put me in touch with someone researching terminal cancer stories. I know why this was a kindness, related to my stated research interests in patient narratives, but as she was speaking I noticed that my hands were tightly tangled in the mane of the white horse that set off at a gallop at those words.

Don’t get thrown. Don’t get thrown.

If you’ve come by this blog because you’re looking for practical resources on the human experience of cancer, here are four writers who have helped me this year:

Australian Indigenous blogger Colleen Lavelle has taught me so much about brain cancer and cancer in the context of family and work. This year she has also collected stories of the impact of dominant culture cancer management on other Indigenous oncology patients.

US colleague Rebecca J Hogue blogged every step of her breast cancer experience after she was diagnosed in 2014—her blog is a meticulous account that’s relevant for anyone going through the US cancer system, although this differs in important respects from what happens in Australia.

The peerless Kate Granger who I follow on Twitter and admire without reservation has a blog here, but really, just follow her on Twitter. Her practical management of serious cancer treatment and her commitment to not only her own medical career but also to improving practice in her profession (the National Health Service in the UK) has justly earned her an MBE. You can also find out about Kate’s work with her husband Chris Pointon in introducing the #hellomynameis campaign to the UK’s public health system, and I’m really delighted to see evidence that this campaign is making its way slowly to Australia.

In relation to experiencing cancer in the company of your children, no one helped more than Lisa Bonchek Adams who died earlier this year. Her blog is still here.

I hope these resources are also helpful to you.

KB, July 2015

2 thoughts on “Don’t think about a white horse

  1. My goodness, that question. So much.

    It’s a bizarrely conversation-stopping question, because it can’t be answered truthfully, but it must be asked, and in exactly this form of words so that what’s really being asked is never said out loud.

    When I think of my own reaction to colleagues who have returned to work following adversity and disruption (including traumatic bereavement) I hear myself also saying “how are you going?” without really having a clue what to ask, or avoid asking.

    There’s nothing here but kindness, but I think we all need more help in understanding how to admit that there are such large issues here, the endlessly busying workplace leaves us very little capacity to sit with them, and give them the time and consideration they deserve.

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