Thoughts on Illness

Posted on August 5, 2013 in Essays | 15 comments

Thoughts on Illness

Some time back in November last year, things were looking pretty exciting. I had been offered a university job in Hong Kong, my partner Elee was well on the way to finishing her PhD, and we were looking forward to a change of scenery. Having been teaching in higher education in the UK for about six years or so, I was feeling in need of a change; and being in Hong Kong seemed like a good way to move forward my growing research interests in China.

But then things took an unexpected turn. Simmering away in the background for the couple of weeks during which I was going through the interview process for the job (it was a Skype interview, so it was—as a friend pointed out—theoretically the only job interview that I could have done without wearing any trousers), I was also going back and forth to the hospital with Elee as she went through various tests. Then two things happened within twenty-four hours of each other: I was offered the job, and half a day later, Elee was given the diagnosis of breast cancer.

So I turned down the job, Elee put her PhD on hold, and very quickly we found that our lives were overtaken by medical matters: appointments and consultations, chemotherapy, surgery, radiotherapy. It turned into a very long winter, followed by a very long spring. And I won’t go into details about the whole course of treatment and so on, except to say that we were lucky, in many ways. Friends and colleagues were extraordinarily kind and supportive. The cancer responded very well to treatment. The standard of care in the hospitals in Leicester was breathtakingly good. Elee weathered the horrible business of cancer treatment with remarkably practical and good-humoured stoicism. And one of the things that really gave me the strength to go on, as I stumbled into my classes at the university bleary-eyed with sleeplessness and worry, wondering how I’d struggle through another day, was the energy, good-will, thoughtfulness and commitment of my students. I have never felt more privileged and grateful to be teaching than I have over the past year.

Generally speaking, I’m not a particularly confessional blogger, and so many times over the past months, I have wondered whether I should write about what has been happening on this blog, but have pulled back from doing so. I simply haven’t wanted to end up giving a running public commentary upon all of this. And if I’ve blogged less than I would like on other topics, it is because my energies have been involved elsewhere.

But now that Elee’s treatment is more or less complete, and has gone well—the prognosis is good and now we’re beginning to turn our attention to other things— I thought I’d say something about what has been going on. Elee’s PhD is back on track. I’m plunging back into my Chinese studies, starting with an intensive course in advanced Chinese at LSE in London over the next two weeks. And although both of us, in different ways, are battered and bruised, we’re regaining some sense of ongoing life.

On thing that I have been thinking about over the past few months, in the light of all this, is illness. I recall one conversation with a friend earlier in the year, around the time that we were beginning to talk about prognoses and other matters, when we were coming to terms with the fact that there was a possibility (much smaller than we feared, it has turned out) that the cancer could turn out to be fatal. It was horrible, I said to my friend. We were weathering the storm, but it was horrible. Ah, my friend said, you should remain positive. Maybe, I said, but it was still horrible. You can’t think like that, my friend said. Why not? I asked. Because, she said, you have to remain positive. And although this was all very kindly meant, I couldn’t help wondering then why I had to remain positive, for whose sake, and what it meant to remain positive. I was worried by the speed with which my friend wanted to move away from the thought “it is horrible” (it is—I do not recommend cancer to anyone) to another, happier thought. And I was reminded of Barbara Ehrenreich’s wonderful book Smile or Die: How Positive Thinking Fooled America and the World.

Ehrenreich, who herself went through treatment for breast cancer, noted that after the diagnosis, “The first thing I discovered… is that not everyone views the disease with horror and dread. Instead, the appropriate attitude is upbeat and even eagerly acquisitive.” In this, what Ehrenreich calls the “The Bright Side of Cancer”, cancer (as with disease more generally)* is considered to be somehow redemptive, offering the “intangible benefits of spiritual upward mobility”. And positivity is necessary not only because it makes life more liveable, but also because it is believed to have some effect on the cancer itself, despite the fact—as Ehrenreich has pointed out—that there is no decent scientific evidence for this.

But then, as now, I’d like to hold out for the notion of illness as illness, rather than seeing illness as some kind of move in the perpetually self-overcoming game of personal development. To see  difficulties as moral teachings provided by the universe, or as moral challenges to which we must rise, is  to refuse to see these difficulties as what they are. It is a way of pushing difficulty away because it is, well, difficult. It is a melancholy fact that, rather than enriching life, illness very often diminishes it. And the refusal to recognise this is a refusal to really recognise the effects of illness on human life. A phrase has been rattling round my head over the past few months: illness is life’s diminishment. And it is not unreasonable to say that life for both of us has been, of late, significantly diminished. How could it not be?

Now that we are coming out the other side of this, I genuinely don’t feel that I have any great wisdom to impart as a result of these difficulties. I resist the notion that this has been some kind of improving experience. Cancer is not night-school. Mostly, I’m just glad that it is more or less over and grateful to friends and colleagues and my wonderful students and the help and support we have both received. As the shadow of illness recedes, we are beginning to regain some broader sense of life and its possibilities. I’m looking forward to that. I’m looking forward to what comes next. Who knows? Now that we are no longer so caught up in all of this, I might even find myself writing more frequently on this blog…

*Though perhaps not all disease: for reasons that are perhaps too complex to go into here, there are few who argue that Gonorrhea, for example, is redemptive or that it makes you a better, kinder person…

15 Comments

  1. Thanks Will. I’ve now watched several friends go through cancer and the treatment for it. And as I think you know suffered from chronic illness for years myself. I agree with the observation that people push away difficulty, especially if that difficulty makes them feel helpless. Many people try to fix the difficulty as a first resort, some recoil in horror, but a few are able to ride it out and stay with the ill person. I think illness can produce a visceral ‘disgust’ response and for some people it’s difficult to override it with rationality.

    The redemptive nature of suffering is an old theme in theology – both eastern and western. Pre-Enlightenment Christians saw lepers, for example, as people who were suffering now so as not to suffer after death. They might not have wanted to share a meal with a leper, but they did not see them as evil either. Michel Foucault goes into this at some length in the introduction to Madness and Civilisation (I think it was – all my books are packed up at the moment). A lot of religious fanatics have pursued suffering – through “mortification of the flesh”. In punishing the body, they sought to free the soul from the defilements of the material world.

    And of course the exotic east has given us the idea that suffering in the present burns up evil karma – which seems to originate in Jainism, then to be adopted by Brahmanical culture, and finally by some Buddhists. The eastern and western ideas are very similar in fact – suffering now purifies the soul for later. Both have a strong duality between soma and psyche. Perhaps it is the belief in a purified soul that enables them to put up with the disgusting aspects of being embodied, especially illness?

    In any case I’m glad that Elee is well again and that you both can get on with life.

  2. Fantastic piece, Will. So glad things are back on track for you and Elee. I lost a friend to breast cancer a few months ago so it is great to hear of a much more positive outcome.

  3. Thanks, both. I was thinking about the longer tradition — both East and West — of seeing suffering as inherently redemptive. I remember as a student of late Medieval art looking at all those paintings of the implements of torture used on Christ, and how contemplation of tortures, wounds and suffering was considered to be purifying. To which I say: Ha!

    There’s an odd thing amongst certain Western Buddhists as well in which sickness is seen as having more “reality” (whatever “more reality” means) than good health, leading people to say things like, “I’m experiencing a lot of Reality” — you can usually hear the upper-case “R”.

    • If one is a naive ontological dualist (mind and body being separate substances) then one will also tend to buy into the dualist metaphor spirit = good/matter = bad. From there it’s a short hop to pleasure is bad/suffering is good. And naive ontological dualism has been a default position for a long time.

      I’m firmly against making any definite statements about reality. I believe there must be something like reality to make sense of certain phenomena, but I’m with Kant in thinking that we can only infer things about it, not know it directly. And science is the most accurate way to infer things about reality. Buddhism is not, or ought not to be, concerned with reality in that sense at all. Certainly the Buddhism I study was not.

      But what you are suggesting is that Buddhists are mistaking saṃsāra for reality, which is a grave metaphysical error. Mind you, reality has a way of catching up with people making grave metaphysical errors, eh?.

  4. Will, I’m glad that Elee is much better and that the cancer has been defeated. It must have made you feel very helpless to battle such a formidable force, especially, I would imagine, if it’s your partner, someone you love very much, who is suffering and there’s nothing you can do but rely on the doctors and the treatment, and hope.

    I am struck, too, by your friend’s advice that you “must” remain positive, rather than confront and acknowledge cancer for what it is. That attitude is quite prevalent. But then again doctors/scientists always include the placebo effect in their statistics when testing out new meds–the notion that belief affects treatment, especially when the patient is unknowingly given placebos (double blind, as the doctor doesn’t know either) but still there are positive results. What accounts for it? What are we to think? That the mind is a very powerful device–so powerful that it can encourage good (temporary?) results with fake pills, but not so strong as to defeat a tumour in the body? (I’m asking this rhetorically as I don’t know.)

    The other thing I was struck by was how you & Elee learned about the job offer and the cancer within 24 hours–I find coincidence fascinating, because you are forced to consider whether it is coincidental or (universe) intentional, i.e. fate.–something that perhaps you will never know or not really understand for a long time when you can see the consequences of such circumstances.

    This is a wonderful, heart-felt essay. Every time I read your work I realize I don’t read it often enough, and am reminded that we still must sit down one day (over a bottle of wine) and have that discussion of Eastern philosophy.

    Anyway, I’m glad Elee is much better, and that life can get back on track.

    • Let’s sort out that bottle of wine soon, Charles. Drop me an email! The placebo effect is very strange indeed (Ben Goldacre did a wonderful radio show on it some time ago), but there’s something brutishly mechanical about cell division and the effect of chemotherapy on cell division; and I don’t think that there’s any strong evidence of placebo effect in terms of shrinking tumours.

      I’m inclined to also think that the universe doesn’t have any intentions, or doesn’t intend anything for “me” personally. If it did, that would mean it had similar intentions for everybody (unless there’s something unique about me, which is unlikely, although it seems that way to me!). And what about intentions towards my cat, my pot-plants etc.? The machinery for juggling these intentions would be exponentially large. Incidentally, I don’t think it is quite right to conclude that the universe is “indifferent” either, because when we use the word “indifference” we usually apply it to things that could be otherwise, e.g. people. If I say, “My boss is indifferent”, it suggests some kind of moral failing. But that seems an odd thing to impute to the universe as a whole…

      But, yes, we’re enjoying things more or less getting back on track. It means we can think about things like sharing bottles of wine with friends, and talking philosophy.

  5. I really enjoyed reading this, Will. I’m so pleased for Elee and yourself. Both of my parents suffered from this illness and I (Though I really can’t say the same for everybody else) came out of it all pretty much in one piece. I don’t think I’d be whomever I am without my experiences. I don’t believe that we should always be positive if we don’t want to because why should somebody else tell us how to feel? Good luck on your future experiences Will (and Elee).

    • Thanks, Keisha. It was tremendously helpful to be able to go in to DMU and have such a lovely bunch of students to teach,

  6. When I was diagnosed with MS at the age of 33, I too baulked at all the “positive thinking” advice that came at me from every direction. It was right and proper that I should grieve and I needed to have the time and space to do that. I used to say to people: “Every time you tell me to look on the bright side, you are depriving me of the resources I need to heal, so FUCK OFF.”

    The only book on illness that really touched the spot was Kat Duff’s the Alchemy of Illness. (http://www.amazon.com/The-Alchemy-Illness-Kat-Duff/dp/0609899430?tag=willbucki-20). I would whole-heartedly recommend it. Maybe you are moving into the geography of the well and not wanting to go back into the landscape of the sick, but if you did feel like revisiting that place, I would whole-heartedly recommend Kat Duff as a guide.

    • Interesting. I take all Jo Ind-recommended books seriously, so I might take a look.

  7. Great post, Will, and glad that things have turned around for you both. My oldest friend survived a cancer that was more than likely to kill him over the last year and a bit. I’ve learnt a lot about people’s attitude to the disease. It’s a problem that doctors deal with as best they can, not something that people battle or fight – and it’s bloody tiring, physically and emotionally, so screw positivity… Good luck with everything.

    • Thanks, David.

  8. Thank you for sharing Will. My best to Elee and you both.

    • Thanks!

  9. Thanks for sharing, Will.

    I appreciate JO IND’s response. Indeed, one does need time to grieve and heal – to confront the situation head-on and feel the full weight of it.

    On a more philosophical level….recognizing that life is often sad, depressing, painful, etc. can be properly done in the face of making the choice to remain positive. It’s recognizing the conditions as such and again and again choosing not to descend into the dark deep (it gets easier!). Even if it’s just for the sake of those around you. It’s true, so much of life is about reconciling opposites.

    My grandmother succumbed to stage four lymphoma late last year. It was uplifting to see how she handled it. She went down fighting – with a smile despite her great suffering. I never witnessed her being unkind or unfriendly to doctors, nurses, hospital custodians, staff, friends, family, or anyone else. It wasn’t about her anymore. That’s a tough lesson to learn, and it’s marvelous to encounter a person when they can practice it while in the throes of a serious illness.

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