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 cliché. 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.
This is really kind of sad but very true. I remember getting all bent out of shape when we kept my Nana at home in all her abrasive glory while she was sick and dying from lung cancer. She made it abundantly clear that there weren’t enough people to throw her scotch bottles at in the hospital and under no circumstances were we to leave her there or she would haunt our asses.
Thanks Nana!
Still, it taught me a thing or two and strangely enough I was pregnant at the time. Weird huh?
*points fingers at your eyes, points fingers at own eyes, points fingers back at your eyes, waggles eyebrows*
I couldn’t stop crying when I found out I was pregnant the first time. It only made me angry that my father was dead and couldn’t share it with me. But your mom is right. It’s shitty “circle of life” Lion King stuff, but one goes out, one comes in. Hugs girl. Hugs all the way around you. xx
You must have ridiculously long arms.
When my grandfather passed away we played this: http://www.youtube.com/watch?v=dDy3lQYPzS4
I was pregnant with my son and had an almost 3 y/o daughter at the time. As one of my aunts wept at the coffin, my daughter patted her back and said, “It’s okay he’s with Gosh now.”
Children have a way of making even the hardest moments tolerable.
SO that started out with a very disturbing sex scene advertisement and I was very worried about you and your family for a moment there…but that was actually quite lovely. And your daughter sounds adoraballs.
LOL Sorry about that. I can’t watch streaming at work so I had to just go by the description that it was the song WITH lyrics.
I think part of it is because people do not know how to behave or what to say, they are worried that they are going to be hurtful and aggravate the already sad situation. It would be really awful if you say something wrong to anybody, let alone someone who is grieving. People are not mean and they generally want to be helpful, they just don’t know how. I really do think that there is a need for an instruction manual for how to talk to people who are mourning the loss of their loved ones. 4 things come to my rambling mind: the upcoming movie 50/50 that I am really looking forward to, the New Orleans tradition of rollicking funeral march, at my aunt’s funeral how we joked with each other and talking about her bones that we were looking at inside the cremation room, and how some Chinese people actually treat the death of anybody older than 80 as a “happy event” because the deceased has lived a full life and their descendants should be happy for them.
Well my grandfather died this afternoon – at the age of 88 – and I DO think it’s a happy event. Relatively speaking. He had Alzheimer’s and certainly didn’t know any of us. But I know he died alone, too. But in his sleep, so again happy. Maybe I can’t really express this clearly today and should stop talking. Wait, that’s never stopped me before. But I think really all anyone wants, old or young, is acknowledgement that it’s happening. I think.
And I think it’s always better to say something like, “I wish I had the perfect thing to say right now but I don’t know what that is,” than to completely brush what’s happening away.
I can’t decide if I’m going to see 50/50. I desperately want to. Rocco doesn’t think he can take it and I’m not sure I could see it alone. But I’m really glad for it’s existence.
Also? I really should have just emailed you, eh?
I am so sorry for your loss. And I am sorry for Rocco’s loss. I wish I could be there in person holding you tight: I think if I stay away from the tummy, I should be able to encircle you with both of my arms. But not sure whether your boobs have become monster boobs due to the impending emergence of your future tiny overlord…
I am glad you shared this with us and I hope you feel better. Love.
I think things maybe are going to get better. There has been a slow but steady change in health care about the quality of life of those who are dying. My wife has lost her mother and father within the last 5 years, one to cancer and one to increasing debilitating strokes. In bot cases, their doctors and the hospitals involved started discussing end-of-life options when it was appropriate. Both hospitals offered councilors to help our family discuss what was going on and what was going to happen (DNR orders, etc). Hospice, both in-house and at-home) is becoming a common alternative to hospital rooms full of impersonal machines. Both times my wife took FMLA leave and went to stay with and care for her dying parent. They both passed away at home with our family around them.
Yes, I agree with what everyone else has said. We aren’t taught how to handle death. We were once a people who grew up within a few miles of where we were born, we were active daily participants in the lives – and deaths – of our elders. Wakes and funerals were held in the front parlor, not a funeral home. Death was a fact of life.
But not today, not in our youth-oriented, gym-membership, billion-dollar cosmetic industry, Justin Bieber – worshiping society. We are taught from childhood to fear aging and that death is failure. “Do not go gentle into that good night.” Instead, we should learn that death is sometimes a release, a reward for a life hard-fought. It is not fair, but it is. Mourn your friends, your loved ones that die, but in a way that celebrates their lives.
I’m sorry that you both are about to lose a grandparent. I hope that you are able to visit before they pass. They can live on, in a fashion by telling your kid(s) about them – your memories of them. Show them pictures and tell them stories about the olden days. Make them live again.
That was lovely, Bob. Thanks.
By some miracle of serendipity I was able to be with my grandma a lot during her last few years of life and was able to learn about her life as an actual person instead of just my crotchety old relative. I was afforded the opportunity to talk to her about death and dying since it was all around her all the time. I am really grateful for that experience because of the general absence of conversation on the topic anyway else in my life. It opened me up in a way.
Also, have you met the Band? Because over at bandbacktogether.com that support doesn’t dry up after two weeks, or at all. We have all the love and the support for everybody as well as the space in which to scream, cry or just tell your tale. All are welcome.
Damns, we sound like a cult. A cult of pure awesome.
It IS a cult of pure awesome. I applaud the work you guys do wholeheartedly. Well and you as a general rule. And anyone that can tap dance.
Oh babe. Sorry to hear about your and Rocco’s grandfathers passing. Big big hugs. xxxx
Thanks. And thanks for posting that article, doll.
We live in a death-denying culture, no doubt about it. As a result, it’s our greatest taboo.
…when it SHOULD be Rod Stewart.
Sorry your grandfather died. Death is an evil, uncomfortable thing for the living. It’s my hope that it’s a gracious, freeing experience for those who die.
I buried my father when I was 20; interesting experience all around because a) his family is whack-a-fucking-delic and because I’m still working out my feelings about him and about his passing.
He didn’t suffer a long illness. As far as we can tell he died relatively quickly of a heart attack. However, he died utterly alone in his apartment bathroom. Just as a lone as he’d have been in a sterile hospital room. More alone, really.
Many times I’ve met or known people who have lost beloved people who have suffered long, painful illness. I always first think, “I’m glad I didn’t go through that with my father.” Then I wonder if it would really have been worse for me or only worse for him. The living suffer a different kind of death when they lose someone to the uncertainty of the hereafter.
I suppose it’s really about empathy. I think we shy away from the dying, those who suffer, because we can’t help but project that end on our own lives and it’s too uncomfortable to bear. I think the best we can hope for is the much less celebrated sympathy. It’s an emotion that might allow us the personal distance do what is best for the dying, rather than what makes us most comfortable with our own mortality.
But what do I know? I have a grandmother dying of chronic lung disease back East. The last time I spoke with her was July. I recently sent her some mail because I’m not sure how comfortable she is expending breath on chit chat over the phone. But also because my empathy and selfish fears keep me from calling to see how she’s faring.
Maybe it’s time to put that phone call at the top of my to do list.
I have a friend who’s brother had a sudden heart attack at 25 and died instantly. We always have this debate about whether that’s cruel or kind. Personally I think it’s kinder to the dying to go quickly, kinder to the living for them to have a chance to say goodbye.
And letters are lovely. Don’t sell yourself short on those letters, pookie.
This was really powerful. It made me stop and consider how I will react next time.
I am glad your GF went in his sleep, should we all be so lucky.
Thanks for this.