Wednesday 12 February 2014

Do We Want To Draw Our Own Curtains?

”Hello Jackie, lovely to see you."

We met in front of the newsagent’s shop and stopped to chat, exchanging the usual remarks one makes when running into an acquaintance with whom one is on excellent terms but rarely sees. Jackie is a painter, a delightful lady, very pretty, small and slim, invariably beautifully dressed. I envy her. Compared to her I am a clumsy tank.

She beamed at me.”You know, I haven’t seen you for absolute ages. How are you?”

I replied with the usual modified rapture, as most of us do. “Not too bad, mostly ‘-ish’.  And you?”

Jackie’s smile disappeared. “Well, actually, I am not very happy at all. John’s been diagnosed with cancer.”

My face fell too. It turned out that her husband had been having ‘indigestion’, went to the doctor, had tests which proved inconclusive; had more tests, was told it didn’t look like cancer. One final test showed that, yes, it was cancer. Of the liver. Inoperable. With a life expectancy of one month.

“It’s quite unreal,” Jackie said. "After the initial shock we just went back to doing what we always do. It’s as if nothing has changed. John is spending time putting his house in order, dealing with banks, insurances, etc. but otherwise we act normal. we even laugh sometimes. It’s only at night that it hits me. I lie awake, staring into the darkness.”

I hugged her. There’s nothing much you can do.

I’ve always wanted to know the worst. It even said so in my hospital notes: ‘U. needs to be told.’ Every time I’ve been seriously ill, I’ve researched the illness, pressed the doctors for every bit of information, asked about treatments, possible outcomes, secondary effects. The lot, anything a lay person could grasp.

Would my need-to-know extend to foreknowledge of the date of my death, give or take a week? Once death becomes foreseeable, it is probably good to know how much time there is left to tidy up; the sort of jobs John’s taking care of now.  It is universally accepted that nobody wants to know the date of their departure in advance, nobody wants to be ticking off the years, months, weeks, like pouring beans out of a jar. until there are none left.

I’ve been thinking about this question a lot, since I met Jackie. (It’s still raining hard.) Beloved and I have discussed it.

I think I am in favour of being told early enough to clear the decks (golly, all these euphemisms), to make good, to say good bye properly. Or possibly, just to live in peace with myself, maybe a little more aware. Like John and Jackie are doing now.

Getting old and knowing that life is running out is different from actually getting the date in the post. I cannot really imagine what that feels like.


45 comments:

  1. I don't know when I realized I had a lot more past and a lot less future, but I hope we are all making the best of the last. I also have a co-worker who is terminal. He is ten years younger, but is doing well in adjusting to his foreseeable short future. And he still has a sense of humor. we all face it differently, but we all have to face it. I hope John and Jackie are able to be at peace with the inevitable.

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  2. There's agony either way. I think of the sudden, unforeseen deaths of some and the paralyzing effect on the surviving spouse, often women who know little to nothing about finances and how to do everyday things. A little time to prepare oneself and one's partner mentally and physically would be preferable to me, I think. I don't think one is ever really prepared emotionally for the loss of a loved one.
    Things to ponder.

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  3. One cannot know the day or hour unless she does it herself. At the end of the film, Little Big Man, the grandfather decides it is time to die. He climbs onto the scaffolding which will hold his remains and lies down and closes his eyes. A raindrop falls on his face and he opens his eyes, rises and climbs down from the scaffolding. He says to his grandson, "This is not a good day to die."

    When one of us is wingeing and in a "just shoot me" mood, the other of us will say..."This is not a good day to die."

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  4. Dear Friko, a sobering posting that has led to my sitting here, looking out the window at the piles of snow, and wondering about the death of loved ones I've known in the past and loved ones I cherish today and about my own death. I live alone and no one calls me daily nor do I call anyone daily. So several days could pass while I lay dead on the floor or in the bed. The cats, hungry, would I think need to feast on my body. That thought doesn't bother me, but I'm sure it would bother whoever ultimately found my body. I'm thinking that I need to get one of those medical alert badges to wear so that if I'm alert enough I can let the company know that I'm in dire straits. But all that sounds morbid. What isn't morbid is the thought your posting has given me as to how I need to live each day so as "to suck out the juices" of life. What is it that I don't want to leave undone? Thank you for getting me thinking about getting "my affairs" in order. Peace.

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  5. I don't think I would want to know how much longer I have but of course, with illness, we have a pretty good idea - told or not. I'm sorry for your friend's impending loss. I'm sure your warm hug gave her some comfort.

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  6. Friko, my initial reaction to this post is that Jackie and John are a fine couple. I would love to be a part of such a couple, through good and bad days.

    For the rest of this comment, think I might now owe you an email. xo

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  7. I believe, like you, I want to know should some unforeseen malady strike me. I would want the time to be sure the people I love know it. I'm trying my best to do that now. I'm trying my best to only see the bright side of things, only the good, which is why I'm paying less and less attention to the "news" and world events. People think I don't care. I do, but I'm tired of letting it upset me. And you know what I've found? When you look for the good things in life, you find them.

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  8. I look forward to death and going to Heaven. I would be grateful to know when I'll leave so I can have as much as possible in order. I'm so sorry for your friend. It must be very hard to know that she'll soon be on her own.

    Love,
    Janie

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  9. My husband knows that any attack can kill him. He has known this for over thirty years and eight major attacks.
    He lives for the day but makes provision for me for the future - not just the money but how it all works.
    A practical and loving man.
    We've become accustomed...I feel so sorry for your friends with the sudden realisation of it all.

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  10. i am torn actually...it might wake us up to live life more fully in the time we had left...its funny, the night i got engaged we watched myLife...the michael keaton movie where he finds he has cancer and makes a movie for his little ones to remember him...

    i wish her all the best...far too many get the news and give up to it...

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  11. Like you, although I have thought about it from time to time, I cannot really imagine what this must feel like. You cannot know until it happens to you. But yes, I want to know every damn thing a doctor knows about me. Nobody should know more about me than myself.

    Four years ago my brother was diagnosed with a serious form of cancer-probably caused by exposure to Agent Orange during the Vietnam war-and was told he had 6 months to 3 years of life. He just goes from week to week. He did buy a big boat and floats around on Lake Michigan a lot, hugs his adopted Chinese daughter daily, and is generally a better person than before. He is living on borrowed time, and it is very intense.

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  12. I don't want to know. I want to be surprised. Meanwhile, I have made all but one arrangement which will be done in the spring. I have always been a planner.

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  13. I had a health scare a few years ago, and reacted by staying in bed for a week ... speaking to no one ... I finally snapped out of it after I found out that things would be alright ... I do believe, I would do the same today, if ever diagnosed with something serious ... withdrawing from social contacts, I mean ...

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  14. Thank you for so well contributing to the inner conversation I seem to be having much of the time. . . .



    ALOHA from Honolulu
    Comfort Spiral

    =^..^=

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  15. I don't know, Friko. I think I'd want to know - have to think about it.

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  16. That is a very serious post Friko. How difficult it is for this nice couple and how difficult to say anything to them. I think it is good to know. I used to go and visit my mother in France twice a year. The last year, in September, I asked her why she had spent a couple of days in hospital – nothing she said, an allergy. It was inoperable cancer and she did not want me to know. My cousin called me close to Christmas that year to tell me to hurry up to see her, but by then she could not speak and died 5 days later. I wish I had known. As for me I would like to know about myself so that I could get everything done for my husband so he would be taken care of since he cannot live alone anymore, or drive, etc. I have thought about all this, but I am not morose about it – this is just part of life and I feel good to have lived so long already.

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  17. What a shocker for your friend and her husband. It must seem like it isn't real at first.

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  18. Two events in my life went the opposite direction, with the same outcome:
    - A close friend (as close as a brother) of mine died of AIDS at the age of 34. We knew he was not going to leave his hospital bed alive, and were prepared for his death - as prepared as you can be. He took care of everything, down to the music to be played at his funeral service. And yet, when it happened, it was hard to bear.
    - My husband died completely out of the blue 5 days after his 41st birthday. He had not had any known condition to prepare us for this, and accordingly, had never put his few worldly possessions in order. Here I was, one minute a happily married wife, the next minute a widow. Nothing prepares you for that.
    So, would I like to know? Yes, I certainly would. It would probably not stop me from hoping until the last, hoping that the doctors were wrong, or for some miracle to happen.
    Hugging your friend was the best you could do, Friko.

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  19. Your post Friko scared me, do not want to think....

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  20. Excellent Post - Food for thought - I think if I did know the possible time of my demise, then I might perhaps get things more in order than they are, but I've left some good people in charge, so am not to worried. I look at life as a gift and try to live each day like that. I have an adventurous spirit and I get out and about and try to make a difference, whether its in my day or someone else's. To answer your question, I wouldn't mind knowing - I would rather know now than find out 6 weeks later - when I was on the road to wherever one goes after death. Bravo to you Friko for this post - makes one think, eh. Have a wonderful day.

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  21. Having just returned last night from putting my younger sister to rest, it's been on my mind quite a lot. She had a heart attack last spring and wasn't expected to survive, but she kept getting better until February 2nd when she had a stroke and died. Her husband was with her and tried to revive her, but she was gone. She had a horror of being on machines at the end of her life, and in a way this was the best of all worlds. She was not part of my everyday life, but she was part of me, and I will always feel the lack of her presence. I feel quite at peace about it now, after having been surrounded by my siblings. We all grieved together. I would want to know when my time comes. I already have everything in order, should something untoward happen. Life is temporary for all of us. Thank you for the thoughtful post.

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  22. I've thought about that a lot lately, Friko, with the loss of two friends and another I fear may not even make it through the treatments and surgeries that are designed to extend his life -- for a very brief period of time. In the case of my friends, both deaths were unexpected -- one a heart attack, another a rapid cancer recurrence when all had seemed to be well. In both cases, the time was too short. I want to know. I try to live my life so there is no unfinished business and that the people I love and care about know it. But I want the time to say goodbye. I think at our age, we say goodbye every day -- we just never know. Will I get to Europe again? I hope so -- but I'm glad I did it when I did. I had a lot of mind shifts when I wasn't sure about my medical tests last year. I pulled my estate plans together, my power of attorney. But it's more than the details -- it's the everyday that I want to celebrate one more time

    I'm so very, very sorry for your friend. I can't imagine losing my life partner, made more present by Rick's past bike crashes. To be without someone who you love so much will be very hard for her. Sending prayers.

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  23. Like you, every time I've been ill, I’ve researched the illness, pressed the doctors for every bit of information, asked about treatments, possible outcomes, side effects, etc. But for a different reason. I'm really not looking for the "worst possible." I'm looking for reassurance. Anyway, your last paragraph is so true. As for me, I don't want to know. Take me in the middle of the night, when I'm asleep, preferably after a nice lobster dinner when I haven't skipped dessert!

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  24. Put me in the column of wanting to know as precisely as possible. Knowing something about the shortness of one's days has a way of concentrating the mind, eliminating the unessential, focusing on matters of ultimate importance. It we can end our days in that manner, it may be that we will have had a good death as well as a good life.

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  25. I try to imagine it. My sister lost her husband rather abruptly to cancer. we knew he was ill, they had no insurance though he had been to a doctor who kept brushing off his pain. then he crashed and we took him to the emergency room and he died two weeks later. I think I would like to know if my death was imminent in time to say my goodbyes and maybe do something I've always wanted to do but never did.

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  26. What a moving post. Yes - I definitely want to know too.

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  27. I agree with Brian Miller...I think it might make us want to live life more fully.

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  28. Having had two cancer diagnoses, I found that like you I wanted to know everything and did a lot of research and both times faced at least the possibility of death while all the tests were being carried out. I too would want to know if an illness was terminal, so that I could sort things out and say my goodbyes. I would much rather that than be torn unknowing from life. My thoughts are with your friends in these last weeks together.

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  29. Yes, I want to know. My husband and I have our affairs mostly in order. We discussed end of life directives. Yet, all of that seems so businesslike. I would hope to live my final days in peace surrounded by those I love most: my children and my husband. I hope I'd be brave and accepting and not given to anxious fear.

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  30. You struck a chord of which I'll write more on my blog, there is something weird going on Friko, every time you write lately, I've been mulling the contents before you type it.

    Strange

    XO
    WWW

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  31. For the same reasons as Vagabonde , I would like to have some notice . On the other hand I don't think I'd want to know too far ahead ... and definitely don't want to inflict touching deathbed farewells on my children .
    Your friend and her husband sound very courageous and I wish them them well in the weeks ahead .

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  32. One of my older friends said she was putting her house in order -- death order. At the time I found it chilling but now it just seems sensible.

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  33. Hi Friko, I just spoke to my daughter before reading your post and told her if I should keel over in the forest some day and not be found until hours later, she should be happy, knowing I died at just the right place and time. My husband and I have our affairs in order. I'll soon turn 70 - I've had a fabulous life. I'm feeling well at this moment but all that could change in a blink of an eye. If I become ill, I'd want to know every particular. As it is, I'm living on bonus time! A thought-provoking post. I was interested in reading the comments.

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  34. Friko, I'm so sorry. Although I don't know her, send them my best wishes. To be told that you have cancer is like a slap in the face - it sends you reeling. It's knocked on our door too (not me, but my nearest and dearest) It's hard.

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  35. No words good enough, but many thoughts, for your friend and her spouse.

    The issue of knowing is one of those where it's necessary to hold opposing thoughts in your mind at the same time, isn't it? I would want to know so that I can have as much control as is possible over how best to use the time remaining; yet I also know all that remaining time would be clouded by the knowing. But one thing is for sure: it's not the doctor's to decide whether the patient knows or not. So, it's good you have your instruction on the record. "U. needs to be told."

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  36. They are brave people, Friko.

    Would I want to know? Yes. I have always wanted to know everything. But would it be easy knowing? No, and I am hoping that it never comes to that.

    Pearl

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  37. I read this and so many thoughts
    with health issues
    and age
    I will be fortunate to have 10 more years.
    My children do not like me saying this
    but it is true.
    So many things I am trying to sort out
    and it is difficult...

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  38. Yes, I would definitely want to know.

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  39. What a well-told anecdote, one that makes me imagine Jackie lying in the dark at night, fretting, at the same time it makes me feel for her husband and the spin of thought it's plunged you into.

    Personally, I get indignant if information is withheld from me. To do so feels condescending, and I get fairly angry at being treated that way. So, yes, I'd want to know. That gives me the power with regards to my own life.

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  40. I'm so sorry to hear about the situation Jackie and her husband are facing. If I had cancer, especially advanced/terminal cancer, I would definitely want to know. I would want to make sure all was in order, make sure my husband knew all he needed to about our finances, my final wishes and the like. But most of all, I would like to have time to express love to people I especially treasure. Though my husband and I express love for each other on a daily basis, there are friends and family members that I would want to spend time with and talk with...which is an indication that I probably should do that anyway and not put anything off. In my family, the entire older generation on both my mother's and father's sides all died instantly in sudden cardiac episodes, my parents well before the age I am now. Thanks for the wake up call, Friko, for a heart-breaking, thought-provoking post!

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  41. It must be such a shock to be given such short notice. I often wonder how long I've got. These events certainly make me wake up and make sure I live every day to the full.

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  42. i remember and will remember the moment when my mom was told that there was nothing more to be done, that all treatments had been exhausted. I will never forget the look on her face. "Three to six months", said the doctor. It was then that I realized I do not want to know not only when I am going to die but nobody else's either.

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  43. I'm so glad I came back to read this post. This is an outstanding piece of writing. The human condition and it's inevitability ... a wonderful post ...

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  44. So well-written. You tell the story without sentimentality but with realism. I can't imagine what it's like to be given the date either. I guess, unless we've been there, we don't have the capacity to feel what it would be like.

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