So it’s almost October – which used to signal apple cider, birthday cake, and Halloween for me. Now it’s the month where I dread the arrival of pink-themed merchandise and magazines filled with heart-wrenching tales of loss to breast cancer.
And this year it’s especially hard because there’s been an awful lot of breast cancer awful close to home. While most of the endings are happy – or at least the best you can hope for – some haven’t been. One of my former co-workers died just over a week ago after ten years fighting with the disease. Ten years. Ten.
That’s a lot of fighting.
There’s something about babies that seems to bring around death. Have you ever noticed that? Rocco lost his grandfather last week. Mine is expected to go any day now. It gives a girl pause…
I said the same thing to Mom and she sighed in that resigned way of hers and said, “Well I know I’ve told you this a million times before, but while I was being born – I was the first of my siblings to be born in the hospital, you know – my mom’s father was just down the hall dying from an infected abscessed tooth.”
“Mom, I’ve never heard that story.”
“Never? All the same – one comes into the world and one goes out.”
It just seems like a disproportionately high number of going outs to the coming ins – especially this time of year. And I find it fascinating that so many people want to touch my belly and talk about every little detail of this baby stuff, but people don’t want to talk about sickness, death, cancer. Like, ever. Though both are equally important parts of life.
My friend Michelle posted a link earlier today to a beautiful article written by an Australian writer, Sara Douglass who just died from ovarian cancer. I found it haunting, so I’m including some of it here.
Many years ago I did an hour long interview on Adelaide radio (with Jeremy Cordeaux, I think, but my memory may be wrong). The interview was supposed to promote one of my recent publications, but for some reason we quickly strayed onto the subject of death and dying, and there we stayed for the entire hour. I proposed that as a society we have lost all ability to die well. Unlike pre-industrial western society, modern western society is ill at ease with death, we are not taught how to die, and very few people are comfortable around death or the dying. There is a great silence about the subject, and a great silence imposed on the dying. During the programme a Catholic priest called in to agree with the premise (the first and last time a Catholic priest and I have ever agreed on anything) that modern society cannot deal with death. We just have no idea. We are terrified of it. We ignore it and we ignore the dying.
In that radio interview many years ago I spoke as a historian. Today I speak as one among the dying. Two years ago I was diagnosed with cancer. Six months ago it came back. It is going to kill me at some stage. Now everyone wants a date, an expected life span, an answer to the ‘how long have you got?’ question. I don’t know. I’m sorry to be inconvenient. I am not in danger of imminent demise, but I will not live very long. So now I discuss this entire ‘how we treat the dying’ with uncomfortable personal experience.
Now, with death lurking somewhere in the house, I have begun to notice death all about me. I resent every celebrity who ‘has lost their long battle with cancer’. Oh God, what a clichÃ©. Can no one think of anything better? It isn’t anything so noble as a ‘battle’ gallantly lost, I am afraid. It is just a brutal, frustrating, grinding, painful, demoralizing, terrifying deterioration that is generally accomplished amid great isolation.
Let me discuss chronic illness for a moment. As a society we don’t tolerate it very well. Our collective attention span for someone who is ill lasts about two weeks. After that they’re on their own. From my own experience and talking to others with bad cancer or chronic illness, I’ve noticed a terrible trend. After a while, and only a relatively short while, people grow bored with you not getting any better and just drift off. Phone calls stop. Visits stop. Emails stop. People drop you off their Facebook news feed. Eyes glaze when you say you are still not feeling well. Who needs perpetual bad news?
This is an all too often common experience. I described once it to a psychologist, thinking myself very witty, as having all the lights in the house turned off one by one until you were in one dark room all alone; she said everyone described it like that. People withdraw, emotionally and physically. You suddenly find a great and cold space about you where once there was support. For me there has been a single person who has made the effort to keep in daily contact with me, to see how I am, how I am feeling, and listen uncomplainingly to my whining. She has been my lifeline. She also suffers from terrible cancer and its aftermath, and has endured the same distancing of her friends.
The end result is, of course, that the sick simply stop telling people how bad they feel. They repress all their physical and emotional pain, because they’ve got the message loud and clear.
My mother, who died of the same cancer which will kill me, kept mostly stoic through three years of tremendous suffering. But I do remember one time, close to her death, when my father and I went to visit her in hospital. She was close to breaking point that evening. She wept, she complained, she expressed her fears in vivid, terrifying words. I recall how uncomfortable I was, and how relieved I was when she dried her tears and once more became cheerful and comforting herself. I was twelve at the time, and maybe I should feel no guilt about it, but I do now, for I know all too well how she felt, and how much she needed comforting far more than me.
She died in her cold impersonal hospital room in the early hours of the morning, likely not even with the comfort of a stranger nurse with her, certainly with none of her family there.
The great irony is that now I face the same death, from the same cancer.
That is the death that awaits many of us, me likely a little sooner than you, but in the great scheme of things that’s neither here nor there. Not everyone dies alone, but many do.
Not everyone suffers alone, but most do it to some extent.
It is the way we have set up the modern art of death.
I am tired of the discomfort that surrounds the chronically and terminally ill. I am tired of the abandonment. I am tired of having to lie to people about how I am feeling just so I keep them around. I am tired of having to feel a failure when I need to confess to the doctor or nurse that the pain is too great and I need something stronger.
I am tired of being made to feel guilty when I want to express my fear and anguish and grief.
I am tired of keeping silent.
If you’d like to read the whole piece, it’s here.