Ars vivendi

Cancer sucks, but life is great – Stephen Sutton, Stephen’s Story

Life is bearable even when it’s unbearable: that is what’s so terrible, that is the unbearable thing about it – Geoff Dyer, Out of Sheer Rage

What do you do when you are a young person and find out that your cancer is incurable? If you’re me, you mope around for a bit and then try to lead as normal and uneventful a life as you can in between treatments by retreating into the comfort of doing the things you always liked to do (which in my case involves a lot of reading, although it is now somewhat weighted towards books and articles on cancer and death. Knowledge is power, after all).

http://rozchast.com/bio.shtml

Me, Age 23 and 3/4. This is by my favourite cartoonist, Roz Chast. I too am partial to snacking on cookies while reading about cancer-induced cachexia. (Copyright Roz Chast. Link: http://rozchast.com/bio.shtml)

If you’re Stephen Sutton, you decide to use your remaining time on this earth to help other people by drawing up a bucket list containing several things you’d like to do to raise money for a cancer charity, and then proceed to raise millions through sheer doggedness of will and a seemingly boundless zest for life. My own attitude while dealing with cancer treatment and its fallout has been one of unwavering self-centredness: I’m the one who needs the most help from me now, and other people can bloody well help themselves. No prizes for guessing which one of us is going to receive a warm welcome at the pearly gates.

Stephen’s story captivated the general public in the UK and around the world, and it captivated me too, since I felt I had a more personal stake in it than most. Firstly, I knew exactly how harrowing the treatment he was undergoing was, having been through a lot of the same myself; and to accomplish everything he did and broadcast a message of relentless positivity while also facing down the daily horrors of that particular chemotherapy regimen is actually a thousand times more admirable than it appears on paper. Secondly, the chronicle of his final weeks served as a preview of what I can expect from my own: the slow collapse of vital organs, the minor yet painful surgeries to try and salvage them to buy a little more time, the admissions and re-admissions to hospital and discussions with doctors about what, if anything, can be done further. Throughout this elaborate two-step with the inevitable, he continued to downplay the uncomfortable reality of his condition in cheerful, upbeat messages on his Facebook page:

After being at a point where it seemed like I’d never make it out it feels so awesome to be able to put that…It has been difficult, there is an emotional trauma attached to nearly dying (a few times) that will take a while to get used to, but ultimately I now feel even more fortunate to just be here and the experience serves as a potent reminder to go out there and live life as freely and as positively as possible.

There is an emotional trauma attached to nearly dying that will take a while to get used to. Several commenters chose to ignore this small, vital nugget of information, and continued to urge him to “keep fighting” even once it became abundantly clear, in the following days, that he wasn’t going to make it out. I found myself getting extremely annoyed with these well-meaning and yet completely thoughtless strangers. What more did they want from him? Hadn’t he “fought” enough for these people?

I was thinking of Stephen, but by this point I was thinking more of myself. I will not countenance people telling me to “fight” once the time comes when that word has lost all meaning. My response to such inanities, should I be forced to encounter them, is going to be modelled on that of one my long-time heroes, the editor Katharine White (and the wife of E.B. “Andy” White) when she had a difficult time during the birth of their only child:

Following the birth, Katharine bled uncontrollably and became increasingly weak. Then, Andy proudly related, a nurse whispered to his wife, ‘Do you want to say a little prayer, dearie?’ ‘Certainly not!’ Katharine replied in her clear Boston voice, and promptly recovered.

The circumstances may be different, but the principle remains the same. A firm “certainly not!” to anyone who tells me to go against what I feel, in those last months or weeks or days, to be the right thing to do.

Stephen died last week, in his sleep. He was an extraordinary person, in the truest sense of the word. He perfected ars vivendi. Rest in peace.

***

Stephen’s world collided with mine in other ways too. Here is a BBC video report that starts with his story and ends with an interview of another young cancer sufferer. This is what she tells in the interviewer in full:

It’s kind of changed me as a person, you know…you appreciate, you start to appreciate your friends, your family, just life a lot more…everything in a weird way becomes more beautiful…and um, I think that puts me at an advantage, I think…

And then her face crumples and she starts to cry. “Sorry,” she says, wiping her eyes, “sorry.”

That video was shot on my ward. I often see that girl, and I once overheard her talking on the phone and learned that she has the same cancer I do, in some of the same awkward places I do. I must have sat in the same room, in a chair identical to the one she’s sitting in, hundreds of times by now. What she said is what I would have said if put on the spot like that, because that is the message of resilience that everyone wants to hear from cancer patients. It isn’t entirely untrue, but the truth is more nuanced. I’m not surprised she choked up just after using the word “advantage”, because the utter grimness of having to say that must have struck her right then. An advantage? Are there not other, infinitely less miserable situations in which one can gain that advantage? Can the beauty of life only be fully recognised and savoured while it’s being snatched away from you? Surely not. It’s just that life is bearable- and sometimes much more than that, in moments that you lock away in your mind to return to again and again- even when it’s unbearable.

***

I experience such moments whenever I take a walk in my local park, Regent’s Park, which happens to be one of the prettiest green spaces in London. From where I enter the walking path forks out, and the left arm of the fork takes me down a short, shaded, generally deserted lane lined with bushes and trees on either side. On a warm day, the air here always smells of dank, overripe greenery. And then the lane suddenly opens out onto a vast, sunny field, and the air becomes lighter and fresher and is full of the noise and smell of people. In the David Bowie song “Space Oddity”, which is probably about drug use or heartbreak (the former, in all likelihood), but to me is one of the deftest descriptions of what being permanently exiled from the world of the non-sick and non-dying feels like (how did Bowie know?), he sings:

…I’m stepping through the door

And I’m floating in a most peculiar way

And the stars look very different today

For here am I sitting in a tin can

Far above the world

Planet Earth is blue

And there’s nothing I can do…

And there is nothing I can do in that endless, sunny field full of life and laughter except soak it all in for one summer evening. And bask in the hope that, for a bit more time at least, there will be another one like this. And another. And another.

This entry was posted in Oy vey (cancer gripes), Reading watching listening thinking and tagged , , , , , , , , , , , , , . Bookmark the permalink.

2 Responses to Ars vivendi

  1. Peter Durkson says:

    You’re a brief star shooting across the horizon …lighting up moments of acute awareness of the preciousness and impermanence of life;…I’m 78- and only now am I recognizing how much of life I’ve wasted in ignorance and narciccism. The purity and honest of your writing compels me to want to change my life and optimize whatever time is left. You deserve a much wider audience!…

  2. Pingback: The empty sofa – Rantatouille

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