Anna Donald: How to behave with chronic, serious disease?

Anna Donald Latest dilemma: how to behave with chronic, serious disease? I’m finding it difficult to know how to present myself. I don’t feel like an invalid, whatever that means these days. Yet I’m too tired and preoccupied to participate in the world in a normal, here-and-now way.

Unpredictable, treatment-induced fatigue means I can’t reliably attend social events. I dread small talk. The inevitable “What do you do?” “I’m not working, because I’ve got cancer.” “Oh, you’ll be fine.” “Um, no, actually; I might not be. It’s quite advanced. Miracles happen, though” “Oh.” Person exits right to stiff drink. (The other version of this conversation concerns my now-permanent baldness: “But of course your hair will come back.” “Actually no.” “Oh.” Exit right. Etc.)

I don’t blame people for coming to an abrupt halt in the conversation: what are they supposed to say? Before I got ill, I was exactly the same. Who wants to talk about the precarious nature of life and death when you could be networking? Social events aren’t designed to hold these kinds of conversations.

Their purpose is to enable social transactions in historic time, not sacred time. Banal, but useful, when 99% of your conscious life lies in historic time. But where do you find ordinary settings, in addition to churches and synagogues and mosques and temples, where you can engage with others in, or at least regarding, sacred time? And the interaction between the historic and the sacred? And not look like a freak. After dinner with friends last week, my husband gently asked whether perhaps the drugs might be having a disinhibiting effect.

Oh dear. I guess things were different in my grandmother’s day, when people, rich and poor, young and old, dropped unpredictably like flies: from childbirth, from war, from TB, from everyday sources of infection like pruning roses.

I wonder how people managed socially, when virtually no family would have been unaffected by death. Was its constant presence kept in check by ritual and religion? Did people sublimate it into customs and physical objects? Did people talk about it beyond that? If yes, in what form? I suppose they used sacred texts designed for this purpose. Freud and Jung hadn’t yet supplied alternative narratives to reduce human experience to the material (through the mechanism of biological sex) or transcended it to the sacred, through collective archetypes and self-actualisation. London analysts I await your correction!

Now, it feels as if on the one hand, Western society is quite good at managing people facing chronic illness and death. We have sophisticated therapies; social work programmes, and many other kinds of supports. Yet on the other hand, we have so rejected religion that we seem to have diminished our understanding of the sacred to the extent that people no longer know how to ‘be’ with it.

And therefore how to engage with someone for whom, consciously or unconsciously, it is a big part of their life, either acutely (eg after separation or death) or chronically. How to talk about experience that is much better explained in terms of sacred and eternal rather than historic time.

Ergo the dinner party problem. Of course I can still rabbit on about Australia’s rising dollar and the effect of rising oil prices and America’s credit crunch (which are interesting and important – I was never any good at talking about kittens). But it’s not my focus any more; I’m too busy studying the biological (current reading: Dr Folkman’s War – thank you Dr Richmond for the recommendation) and the historic and the sacred and how the two intersect. Which are of little interest to most people.

You don’t wade about in shadows until you have to.

I realise that age is a problem: I’m in the wrong cohort to be immersed in these things. Maybe I should hang out in nursing homes. Can I wear purple yet? My husband is probably right. Those steroids have a lot to answer for.

Blog 9: Anna Donald (15 June 2008)

  • Tom

    Dear Baldy,
    These posts keep getting better and better. Keep ’em coming.
    Besos from the lot of us.
    T.

  • Sam

    Dear Anna

    The social faux pas of having serious and life threatening disease is a bugger. I have always thought it unfortunate that people with cancer not only have to deal with the cancer, but also spend much time, energy and effort reassuring others.

    Maybe compartmentalising is the trick. Frankly deep conversation and dinner parties do not go together (or maybe my friends are more shallow than yours :-)) – so play the game and chat about property prices or whatever. But you may need to seek out groups where you can have meaningful discussions about the sacred as a balance.

    I would be really interested in what you would like people to say/how you would like them to react when you have to tell them you have cancer.

    Sam x

  • Richard Smith

    Is historic time simply the opposite of sacred time? I wasn’t sure, but I suppose so.

    I wonder if many people are not hungering for more sacred time, and you are well qualified to provide it, Anna. Talking to you about all you’re experiencing and about death might at first be as tough as walking into a magnificent, ornate cathedral and thinking “How do I join in?” but once people got going it would, I think, be the most important experience of the week if not the year. You could nudge them into the space rather tha nudge them out.

    You’re interested in experiments, Anna. Why not try it and report back?

  • Richard Smith

    When I posted the above comment a notice cam up under the words saying: “Your comment is awaiting moderation.” That, I immediately think, is what I’ve been need all my life–somebody to moderate me. Can the BMJ set up a service?

  • Karen

    Dear Anna, Small talk with strangers is pretty unrewarding when you are healthy and strong. Definitely not worth expending energy on when you are not. Take good care. Lots of love, Karen

  • Dr Helene

    dear Anna, you most certainly can and should wear purple, whatever age you are.
    Your blog is inspiring. I have several friends with breast cancer at the moment (all at different stages of treatment and recurrence) and my mother died of it in another era – 1979 – when little was understood about any emotional needs that cancer patients might have. At least I hope so, because she suffered terribly from the stigma that no-one would address, and if I can only believe that her carers knew no better, I can forgive them…
    I turn to your writing to try and be a better friend to all these women. Keep up the great work. I look forward to reading the whole thing as a book while you are still around to enjoy the plaudits.
    Helene

  • simon

    I find deep personal conversations on a socially taboo subject can either go one of two ways. Either badly (most acquaintances and some friends) or surprisingly well (the other friends and a few more random additions). It is the ones that go well that are intriguing and offer something to get your mental teeth into, often those you least expect too come up with something the chew on.

    Go chew and tell us how it tastes to you.

  • kate kirkwood

    anna,
    i love, love, love your posts. you are a natural and gifted writer and a woman wise beyond your years – by necessity, perhaps, but i think by nature too. i am just a couple of years younger than you and, so far, cancer-free, but i try to make time for the sacred in my everyday thinking. for this i too am sometimes chided by my husband – not quite as gently as yours! – after gatherings with friends, and yes, the disinhibition word has come up between us too! and i don’t have the excuse of steroid treatment. yet what could be more important in this life than preparing for death? i find my patients are often relieved to talk along such lines, after the initial surprise, although the downside is regularly running 45 mins late in morning surgery…

    i think there is a massive suppression of this hunger, this very natural human hunger for the sacred, in our increasingly secular society and it’s wonderful that you are giving people the opportunity to dig deeper with you into what really matters. if some of them aren’t ready to take up that opportunity (ie back away in panic!) then at least you gave them an opening. anna i think of you often and feel sure that, whatever lies ahead, you have the courage, the strength and the wisdom to be prepared for it. thank you so much for sharing your story with us and i send you my most heartfelt love. kate kirkwood

  • Dear Anna
    I have found your posts very thought provoking, especially this one. I am curious as to how you would like people to react/respond/reply to you.
    I have a vested interest having a long term progressive neurological disease and find I get shock or avoidance or apathy or abrupt exit mainly, but do get asked questions by some which I dont mind even if at times a few are a little tactless. I do not have the conversation stoppers you have re lifespan and baldness but can stop conversations with a lot less.
    take care
    lesley (england)

  • Tom Lams

    There is not the sacred and the not sacred.

    Everything is sacred.

    There is no time.

    This may seem strange,

    but it is true,

    if you don’t think about it.

  • Corinna Gannon

    Dear Anna,
    I have just read a part of your blog thanks to a friend mentioning it. I notice that you are praised for being an experimenter and that you write about the place for the sacred. How I feel able to relate to you with regard to these two notions.

    My journey so far has not involved cancer but other, comparatively trivial, nevertheless disabling, conditions. After trying and failing via the ‘conventional medicine’ route, I embarked on some nutritional experiments. Ever since then that has become my journey. Nutrition is fascinating – not in the ‘count calories’ or ‘diet’ way – but in the ‘you are what you eat’ way. Nutrition links science and Faith, nature and nurture, the material and the sacred…

    If you have the energy and/or curiosity to try out another experiment, I would suggest a period of mainly or solely ‘raw food’. I understand that there have been several positive results regarding the reduction/elimination of cancer. You might like to read around any such results (e.g. Jan Dries, Belgium) as well as more about ‘raw food’ (e.g. David Wolfe). There is a mass of extraordinary literature on this topic….

    Wherever your journey takes you next, I wish you and those close to you much love and strength on it,
    Corinna

  • Dear Anna

    Your recent article is very thought provoking.

    Your blogs are interesting and provide an insight into the real meaning of life.

    Sending you lots of love and take good care.

    Urmila

  • Andrew Jenkins

    Anna

    I stumbled on your blog while searching for information on Bayesian logic with complex numbers (you never know where analysing the effect of the credit crunch will take you).

    Stay strong and uninhibited: you always have been. The people who can give you strength are those who can deal with the un-euphemised reality, whether old friends or people you meet in traditional small-talk situations.

  • Dr.Viveck Atheya

    Dear Anna,
    I have a suggestion to make.Go back into your recent memories and identify and report those actions, words behavior patterns of people close or around you which gave you comfort and reassurance.Also others(actions) which appeared jarring and unpleasant to you.
    This may give us some insights into adopting the right or most appropriate attitude while in presence of other such patients.And help us to behave better.

    Viveck Atheya

  • Michae Anderson

    Dear Anna,

    I’ve only just now caught up with your blogs — they are amazing, full of insight, honesty, and wisdom.

    I wonder if things really were that much better in your grandmother’s day when there was much more deliberate room made for sacred time? Our grandparents had strict rules about what was unsayable, and social histories are full of stories of people with chronic illness being shunned from the village or locked up in the attic.

    I like Richard Smith’s suggestion, but it may be strong meat for some people.

    Keep up the blogging,

    Michael A

  • jeannette

    Dear Anna,
    Thankyou for exposing your thoughts and feelings so freely.
    My experience with cancer is “on the other side”
    My father died when he was 37 years old and then my brother 3 years ago at 55 years old. Becoming so ill for both of them was, the unpleasant side of “life’s lucky dip”
    I spent the last 6 months of my brother,s life beside him constantly and was honoured that he allowed me to be there.
    He was brave and practical,as you are, although there were times when the vulnerability showed and I was grateful he shared that with me also.
    He said to me one day “I’m having a good day today ,some days are hard”,{of course the good days are really tough) however he never actually complained,just said it how it was and that wasn’t always what others wanted to hear.
    Needless to say those who couldn’t cope with that, voiced all the usual trite and useless comments that spill out of their mouths. He would often say he didn’t want someone to visit because they were trying to think of something to talk about as if nothing was happening.
    It was a privilege to be permitted to share that time with my brother and equally a privilege to share your days with you,via this blog.
    All I want to say to you is I sincerely wish you many,many very good days and the company of people who can sincerely embrace this time in your life.
    With love
    jeannette

  • ghislaine young

    Anna
    Not “cogito ergo sum”, not even I think-feel, therefore I am. Simply: I love, therefore I am.

  • Anna Donald

    Ghislaine,
    How right you are. I’ll use that from now on. Thanks a ton.
    Anna

  • Hi Anna,
    I’ve been in Ireland this past year and read about you with some shock in the Good W/E a few weeks ago. We were at Narrabundah together(I still believe I owe you my good IB Maths results), and I have loosely followed your life since turning 40 and getting curious what everyone else vintage 1966 was doing with their life’s road.

    Well, hasn’t it served you a jag now..this is amazing, and not at all what anyone could have pre-scripted for you.

    My Viennese grandmother was trying to keep self and 3 small children (all under 4) alive during WW2 in Vienna, in very close quarters with death, rape, malnutrition of babies etc for years, and what I most remember about her stories is ‘Humor ist wenn mann trotzdem lacht.’ – Humour is when we laugh in spite of it all. She has the greatest good humour of most anyone I’ve ever met.

    And I also suggest that it’s worth pushing the notions of what’s a social engagement really for – do we all just want to glide off eachothers’ surfaces, or can we actually be more human by dealing with eachother as we currently find ourselves? Say it to them anyway, I say.

    Anyhoow, I wish there was more that I could do: I’d love to see you, and I appreciate that it may not be possible. From one Anna to another, a big squeeze.