Tuesday, November 13, 2007

Getting It Off My Chest

Long, semi-confessional post coming up. If that’s not the kind of thing you like to read, skip this post and wait for the regular stuff.

Advanced, interstitial lung disease, the report accompanying the X-ray says. I’ve done the hospital thing long enough now to know that what a report says now does not necessarily imply a death sentence; that it is a snapshot of how things are at that particular moment, subject to change. That’s the whole point, presumably, of medical advances: that even the most terminal sounding diseases can be treated. But I’m the first one to see the report, and it is not mine. It is my father who always either being investigated for something new, or treated for something already going wrong.

We’ve reached the stage where things can be managed but not – emphatically not – reversed. Whether it’s a matter of a few months or years is immaterial. Driving back from the hospital today, I said to myself that I had better face this question of death now, when I can look at it dispassionately. At least, after a fashion.

What does that mean, ‘facing this question of death’? It’s not even a question. If I want to get all easy-philosophical about it, I could say to myself that we’re all dying every day. Yeah, so?

Negotiating the traffic, I started to make a list of things I did not want to deal with from scratch after the event: phone numbers of ambulances, crematoria; procedures –how little I know about what to do; death certificates; transferring documents into the names of next of kin; paper work – endless amounts of paper work. At the same time, I was appalled at myself for being so disloyal as to even allow these thoughts. It felt indecent.

And then – the whole question of illness. A dear one’s illness at least has this advantage: it gives you time to prepare for the end. It is the opposite of the kind of death some people are lucky enough to have, which is sudden and mostly painless, not brought on by accidents, war, murder and all the other things humans are capable of. In those cases, the ones left behind have had no time to come to terms with anything, and they are condemned to live with the shock of it forever.

For those who suffer, whose bodies deal with the pain of disease every day, their families have the dubious advantage of having time to accumulate their losses, to count every decline as one step towards a certain end, so that when it comes it comes as no surprise; if things were very, very, bad, it might even be a relief.

I feel ambiguous about the role of medicine in all of this. At times I want to say, don’t mess with life expectancy; the body’s got to give out in some way and warding off terminal illnesses with invasive and painful procedures only prolongs the agony. At other times, I’m happy that such things are possible; when it’s clear that someone who wants to live is able to because of what is available. It’s not the middling cases I’m really talking about, though, where the benefits clearly outweigh the cost of it in every sense.

If it was I who was that sick, I’d know what I would choose: I would choose to die without being pulled back so I could live out one more day in pain. This is controversial, I know, which is why I’m saying only what (I think) I would do.

But right now, it’s not my death I’m thinking of. And thinking of it I am, let’s face that as well, afraid. In the whole recipe of fear, one ingredient is the thought of the inevitable grief. No one, we’re told, has ever died of a broken heart but who has counted the numbers of those that wish they had? I don’t want to have to experience the pain of it again and again and again everyone someone goes away permanently. These are times when I want to say, let it be me instead. Let other people deal with it.

And then I think of my son and I remember who those other people will be. And I can appreciate why the will to live is so strong in people that they will go through whatever they do – we’re all shields for someone else, cupping our hands around the fragile flames of their lives. What would happen if we took our hands away is something we are not willing to even contemplate.

So what I’m talking about is not the fear of dying; it’s the fear of living.

Now what can anyone do about that?

18 comments:

dipali said...

This sounds so tough. And yet, your quiet pragmatism shines through. God, give us the strength to do whatever needs to be done, when it needs to be done.
I guess the major criterion for letting go is of 'unfinished business'. My children are relatively grown up, I see none of them on a daily basis, they will miss me but they will survive more or less intact. My husband will be miserable, but will manage somehow. The people for whom I feel it is imperative that I not only stay alive, but stay well too, are my dependent old parents who live with me. We all faced a devastating loss when my brother died suddenly almost two years ago. I pray that they don't face any other such loss in their lifetime.
This line you wrote is so very true "they are condemned to live with the shock of it forever".

I just read this amazing book called The Road, by Cormac McCarthy, dealing with possible death on an actual, minute to minute basis, beautifully and movingly written.
I do not believe in artificially prolonging life, unless there is a very good chance of normalcy. Just to be 'technically' alive seems pointless.
I hope your father is not in severe pain, and that he responds to the treatment insofar as is possible. I don't know how old he is. (My own father is nearly eighty five, and his fragility now is heartbreaking.
And yet he is in good spirits and stable health, despite having very very limited mobility).
Take care of yourself- there is a lot you will have to handle. Is your father in hospital or at home right now? Good wishes to you all.

??! said...

Last month, my elderly neighbours' 35-year old daughter died of breast cancer, after a two-year struggle. She has four kids - aged 13 to 2.5 - and the cancer was discovered during the last pregnancy.

All throughout, I've been amazed at the way they dealt with it - determined to ensure they try all possibilities for her survival, but accepting that it may not be enough. And in the last six months, when it was clear she wouldn't last out the year, they just...got on with it. They helped her as much as they could, they were by her side, they prayed - and they made sure her life went by as well as it could.

And when I met them after they came back from the cremation, the father said one line that stayed with me - "Life often makes you do what you have to, rather than what you want to."

There is no easy way to deal with illness, disease or death. You just do.

Hope things go as well as they can.

Falstaff said...

Raymond Carver: My Death

Space Bar said...

Dipali: No, he's not in hospital; it's just a bunch of tests to find out what's wrong. I know exactly what you mean when you say the fragility of one's parents is heartbreaking. Thank you.

??!: That sounds terrible - what a time to find out. And thanks - I hope they do too.

Falstaff: Dammit...that, I hate to admit it, made me cry. Thank you.

Everyone: it's not as bad as it sounds; I was just panicking in the morning. All these tests need to be collated and diagnosed properly. It's too early to say it's desperate, but that report sounded awful.

km said...

Remember "He not busy being born is busy dying"?

I know, it's easy to quote from Dylan and JK and Buddhist texts, but to look at death in the eye, without any preconceived notions or fears or sentimentality is an awfully hard thing. I often wonder, why aren't we better prepared for that?

Space Bar said...

km: good question. I guess it's because we can't practise on anything but the real thing.

Falstaff said...

space bar: You too, huh? Now I feel less embarrassed. Have you read much Carver (his poems, that is, I'm assuming you've read his short stories)? I really like him, simple as his poems are.

km: "why aren't we better prepared for that"

Perhaps because it's bad enough living through it when one has to, without volunteering to think about it when one doesn't. Humankind cannot bear very much reality, etc.

Tabula Rasa said...

great post.

you're right, we're often not prepared because we can't practice on anything but the real thing. but getting used to the idea is part of growing up.

you have to find it within you.

Space Bar said...

Falstaff: I hadn't read any poetry by Carver until you pointed me to that one. You should post some one Poitre.

TR: Thanks. 'Getting used to the idea'? I'm not sure what you mean...used to the idea of death?

It's very complex, but one thought I frequently have is that it's not the idea of death itself that causes fear; it's more the idea that it draws to our attention how half-heartedly we live, how we've allowed time to slip by - not by having wasted it or doing less, but by doing everything in half measures. One day someone is near death and you realise what you've been unprepared for is life.

dipali said...

From HarivanshRai Bacchan's poem 'Madhushala':

Aaney ke hi saath jagat mein kahlaya jaanewala
Band lagi hone khulte hi meri jeevan madhushala

My brother died instantly, without warning, at the age of sixty one.
He had always said that he wouldn't make old bones,(he hated to see what illness and old age had done to our father). He believed that each person should try and do whatever made him happy. And that you couldn't buy time.
He died while playing tennis, on holiday in Egypt, of a pulmonary embolism. For him, I guess it was a perfect death, unrelated to the diabetes he'd suffered from for years. He loved travel, he loved sports. For all of us- it is still
so hard to bear.

Death seems manageable and comprehensible in theory. In practice, much more difficult.
One's own would probably be the ultimate adventure, perhaps a welcome respite from one's struggles with Life. Dealing with the loss of dear ones? There seems to be a permanent rearrangement of one's inner spaces. And yet we need to engage with this central fact of life.
Your last line rings so true:
'One day someone is near death and you realise what you've been unprepared for is life'.

Banno said...

My father was the lucky one, his death was much like the one Raymond Carver wishes for in his poem. And I've often wondered at how much like a film it was, and thought that he must have been so incredibly good to have, by sheer coincidence almost everyone he had cared for all his life around him while he died. That made it easier for me to accept his going, which in every other way was very sudden, 14 days of illness, not enough to prepare one for what was happening. Good luck to you, and your Dad, and all your strength and courage. Take care. And may you be able to slip back again into the mindless normalcy of life, without thinking of death and illness too much.

Space Bar said...

Dipali, Banno: Death seems manageable and comprehensible in theory. In practice, much more difficult.

Precisely. You two have experience such opposite deaths of loved ones and it's only difficult in different ways - like the birth of one's children, I suppose nothing prepares you for it.

lekhni said...

Dipali's last comment sums it up - a loved one's death is painful to us, not because something bad has happened to them (they are likely in a much better place now),but because we miss them and feel sorry for ourselves.

We fear our own death because we fear the unknown, we fear change. If we know for sure that we are going to go to someplace very wonderful, we may not worry about death at all.

Tabula Rasa said...

used to the idea that someone who's been part of the landscape all your life is no longer there. when actually the one incontrovertible fact is that we do go on living despite the possible deaths of everyone around us -- it's just that our own lives become a little less rich with each successive one. (but then that's why they invented births.)

i haven't ever had the 'unprepared' thought so i can't say i empathize with it. i think life is possibly best lived learning on the fly, without prior preparation.

Space Bar said...

Lekhni: Yes, I was saying the same thing in a different way.

TR: Ah, yes. Not sure one ever 'gets used' to it, though.

Kuntal said...

Hope things are not as bad as scary medical jargon can make them. Either way - big hug and lots of good wishes to you and your father!

Space Bar said...

thanks kuntal. we'll know more tomorrow. and i wish you'd start a blog! as it is i have to ask people who the little baldie is! mail or something.

Anonymous said...

THE SAME THOUGHTS AS SRIDALA HAS BEEN PASSING THROUGH MY MIND FOR THE PAST 5 YRS.MY FATHER IS RUNNING 82YRS.AND I HAVE BEEN DYING EVERYDAY SINCE THE PAST FIVE YRS EXPECTING TO HEAR THE WORST ABOUT HIM NOT BECAUSE HE HAS ANY ILLNESS BUT BECAUSE SOMEBODY COUNTED HIS LIFE AS NOT BEYOND A PARTICULAR AGE.BUT LUCKILY FOR ME I HAVE GROWN IN THESE FIVE YRS ALSO AND AM NOW MORE MATURE??????I WOULD ALSO LIKE TO ADD HERE THOUGH IT MAY SEEM ODD OR OUT OF PLACE.I SAW A MOVIE VERY RECENTLY CALLED 'TUCK EVERLASTING'.WHAT I UNDERSTOOD FROM THE MOVIE OR THE MESSAGE I GOT WAS VERY BEAUTIFUL.THE MOVIE TALKS ABOUT A 'TUCK' FAMILY WHO HAPPEN TO DISCOVER A SPRING IN SOME WOODS,THE WATER OF WHICH THEY REALISE GIVES IMMUNITY FROM DEATH.THE 'TUCK' FAMILY COMPRISING OF THE MOTHER,FATHER, & THEIR TWO SONS DRINK WATER FROM THIS SPRING & THEY NEVER GROW OLD NOR ARE AFFECTED BY ANY ILLNESS OR EVEN DEATH.THE FOUR OF THEM REMAIN THE SAME AGE FOREVER.WHEN A GIRL ACCIDENTALLY DISCOVERS THE 'TUCKS' & THE SPRING, THE FATHER'TUCK' EXPLAINS TO HER WHAT A PAIN THEIR LIFE IS 'NEVER ENDING'??????.HE EXPLAINS TO HER THAT A HUMAN BEING,RIGHT FROM THE TIME HE/SHE IS BORN ON THIS EARTH HAS A SPECIFIC PART TO BE LIVED AT EVERY AGE, I.E AS A CHILD, AS AN ADOLESCENT, AS AN ADULT, A MIDDLEAGED, & FINALLY AS AN OLD PERSON BEFORE PASSING OFF TO ANOTHER LIFE MAYBE!!BUT CAN ANYBODY IMAGINE LIVING LIFE FOREVER WITHOUT AN END TO IT?!!!!
I AGREE IT IS NOT EASY TO ACCEPT THAT A DEAR PERSON IS NOT GOING TO BE WITH US,(IN FACT I DON'T KNOW HOW I MYSELF WILL REACT IF I HAVE TO FACE SOME SUCH INCIDENT IN MY LIFE)BUT IF WE CONSIDER THAT THE PURPOSE OF A LIFE IS TO MOVE ON MAY BE IT'LL BE THAT MUCH OF AN IOTA EASIER TO LIVE!