i’ve told the story of what lauren berlant said to me, in chicago, in 2008, over a truly terrible vegan pizza they’d made, that i should call myself a writer because it would enable me to focus on my writing — and they were right, i did, and i finally finished my book — so many times people already start yawning when they see me coming, or there may be other reasons for that, but the story i haven’t told is that ten years later, after my book had been published, when she had been diagnosed with cancer, lauren wrote to me.
the subject of the mail was (‘Just finished your book finally—loved it.’), and it read :
Asking for a friend: given what you’ve seen, would you do chemo if it bought a little more time but there was still a terminal diagnosis? I’m stumped and the answer can’t be “depends” since the risk assessment is just that, in the dark of probability. The book die wise argues for dying graciously without hope. It’s like Buddhist acceptance without passivity.
I’ve described your book as just stunned by the defeat of people by the usual ways of being treated and dying. But I don’t know what that implies for you.
my memory tells me my response was pretty lame but lauren always liked whatever i said, and reading it back, i’m glad to find wasn’t so lame. my memory must be coloured by my having wanted to give her more, because, even though i didn’t know, ‘her friend’ was clearly a euphemism. but i played along :
My first reaction is, I would need to talk with your friend because such a decision would depend on their relationship with death and dying. Are they afraid? Are they optimistic? Are there things they want to get done before they die?
I think it also depends on the extent to which you are comfortable being subject to medical science and the particular way in which it is practised in the particular hospital they are in, because it can be brutal and inhumane if you’re unlucky, and quite the opposite if you have an ethical caring doctor, and you’re in a well-run hospital. Do they feel like they have a good relationship with their specialist? Do they trust them? Do they feel they are being honest with them?
Some more or less random observations :
- Sometimes people are offered treatment because they seem desperate and/or because not many doctors like telling them that they have run out of options.
- Some people can be unhappy and feel like they are a guinea pig but there are also those who feel good about the idea that it might be of some use to future patients for researchers to learn how their particular manifestation of the disease responds or doesn’t respond to a particular treatment.
- Sometimes people feel like they owe it to their nearest and dearest (or to themselves) to ‘try everything’. Talk to them.
- Some treatments are so invasive and make you so ill that what remains of your life is hardly worth living. It’s not much good being alive but having no energy, severe nausea, and other side effects depending on where the disease is.
- On the other hand some treatments can be very valuable for pain reduction.
> But you asked what I would do?
> I have absolutely no idea...I’d like to think that I would know what to do if and when the time comes but treatment which may or may not buy a little more time and negatively impact on the quality of that time, not to mention all the time spent going back and forth to appointments, and one’s reliance on the care and support of others, might well lead me to make a decision to just spend my last weeks or months quietly preparing for my death - and making sure I have a doctor who is not squeamish about giving me as much morphine as I want and who will prescribe the drugs I need to end my life when I’ve had enough, should it be necessary. Even the fact of having access to the means to end your life if and when your suffering becomes too much to bear can make a huge difference to the quality of what remains of your life.
Do they live in California or Oregon or Washington State or another country or state where you can request medical assistance to die? If not they will need to get organised themselves. I can advise on methods or Philip Nitschke’s Peaceful Pill Handbook has all the options and names and addresses of reliable suppliers. You can get it from Amazon and there is a regularly updated online version. Beware : There are lots of scammers on the internet that use similar names and have legitimate sounding websites.
Sorry for the long rambling answer but it’s a complex question.
when i’d spoken of the big leap i made giving up being an artist to work with the dying, lauren told me they didn’t think it was such a big leap at all, and i wondered what they would think about what i am doing now.
i serendipitously discovered that perhaps lauren has a message for me from beyond the grave, in a posthumous collection of essays completed just weeks before they died, called ‘on the inconvenience of other people’.
something that immediately leaped out at me in that review was :
The unbearable, Berlant writes, is a foundational paradox: “To call a thing unbearable is to admit that it must be borne. It cannot be other than it is. It is defined by a forced relation to life that taps into insecure and depleted resources. It is a limit case of inconvenience to the reproduction of life.”
i think i’d like to read this book whilst being inconvenienced by other people.