Wandering Thoughts

February 10, 2009

Illness

Filed under: Aortic Valves,Reactive Arthritis — terence @ 6:50 pm
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Jeremy at Scoop Review of Books has very kindly published my review of Havi Carel’s book Illness on the SRB website. It’s also below.

As an alternative to the review you could read this article by Carel in the Independent.

Illness – Havi Carel

“Empty,” the ancient Greek philosopher Epicurus once wrote, “is the argument…by which no human suffering is healed; for just as there is no benefit in medicine that does not drive out bodily diseases, so there is no benefit in philosophy if it does not drive out the suffering of the soul”.

Havi Carel understands this better than most. A philosophy lecturer at the University of the West of England she was diagnosed in 2006 with lymphangioleiomyomatosis (LAM), a rare, degenerative, terminal illness present most acutely in the lungs. A transplant might extend the span of her years, but donors are scarce, and even then it only buys time. In the end, either way, short of a miracle she can expect the steady loss of lung capacity and, eventually, death. Lymphangioleiomyomatosis is an illness for which medical science has no cure.

Illness is Carel’s attempt, in the face of this, to muster the tools of her own trade in search of a cure of sorts. Philosophy may not be able to arrest the cell over-growth and cysts in her airways, but the story of an illness is never a purely physical tale. How we think about illness and, equally importantly, how society around us thinks about it, matters. And it is to this that Carel directs her attention.

Philosophically speaking, medical science has been anchored in a form of naturalism that describes and deciphers diseases as physical processes. To this way of thinking arthritis, for example, is an illness of the joints (and depending on the type possibly other body parts). It can be described in terms of physical symptoms (pain, swelling…), causes (in the case of the arthritis I suffer from complex microbiological interactions between a trigger organism and my immune system) and treatments (anything from Ibuprofen to immunosuppressants and steroids). In a naturalistic, sense it is an illness of physical cause and effect which begins and ends with the body.

There is much to be said for such an approach to thinking about ill-health. Built upon it is an understanding of disease that has rid the world of smallpox and nearly rid it of polio, and which has transformed the Black Death from a civilisation shattering plague to something that can be treated with antibiotics. Medical science based on naturalistic thinking has lengthened life and improved lives. Yet, as Carel explains, it remains insufficient.

Insufficient because, for the sufferer, illness is much more than its physical symptoms alone. In a series of examples from her own life that are both moving and illuminating Carel illustrates this. Illness has reshaped the geography of the world she lives within: hills she used to cycle up become insurmountable as her lung capacity diminishes. Stairs are now climbed as hills once were. Illness has reshaped her sociology: unsure how to react, friends avoid her; strangers in the street laugh cruelly at her oxygen tubes; the staff at medical facilities have a huge impact on how she feels through acts as simple as offering a warm, caring greeting (or not). Most of all, illness has reshaped her self: it has driven a wedge between her mind and body. Actions once automatic and taken for granted have become difficult or impossible. Her mind struggles to keep up with the changes; at night she dreams of running but will never run again.

Using these examples Carel contends that we can better tackle illness by augmenting naturalism with phenomenology. Phenomenology is an approach to philosophy which seeks to understand life as it is experienced by those living it. In the case of illness, phenomenology emphases the importance of understanding illness as it is experienced by those who are ill. The physical processes of disease will, of course, play an important role in such experiences (and it’s important to note that Carel isn’t suggesting that we discard naturalistic understandings of health, but rather that we augment them) but so will factors stemming from outside one’s body.

Influenced phenomenology, medical professionals and society more generally would seek to treat the sick not just through medicine but also through the way we treat them; how we interact with them in our day-to-day lives, how we shape the world to ensure that their physical limitations do not lead to their exclusion, how we provide them with space to adapt to their newly acquired circumstances. It is easy to sympathise with someone who is sick; it’s a lot harder, unless you’ve been there yourself, to empathise, but if we’re willing to try and at least understand how being ill makes people feel, and how our interactions with those who are ill make them feel, we will do a much better job of helping them feel better.

Of course, these arguments aren’t entirely novel. They have been advanced by disability and illness advocates for some time and to varying degrees have already impacted on the medical profession and society at large. But, as Carel’s own experiences show, there is still much to be done. And Illness’s strength is to place these arguments into a coherent whole which draws a line all the way from the philosopher to the patient.

In the book’s later chapters Carel shifts her gaze away from society and inwards in an attempt to see if phenomenology has answers to two personal questions that loom large for the seriously or terminally ill: how to face one’s fear of death. and how to approach the rest of one’s life.

On the issue of death Carel makes use of two guides – Epicurus and Heidegger – who at first glance appear to have beliefs about mortality so profoundly at odds with each other as to be irreconcilable. On one hand, Epicurus’ advice for those who fear death is simple: don’t. Get over it. Rationally, he argued, there is nothing to fear in death as being dead is not something we’ll ever experience. We’re right to fear suffering, Epicurus believes, but in death we won’t suffer for the simple reason that we won’t be there. Heidegger, on the other hand, argues that all human existence is “being towards death” and as such there is no escaping the presence of death in our lives. Indeed, life can only properly be lived once we understand it as finite.

Epicurus advises us not to worry about death, Heidegger would have us constantly reminded of it – Carel tries to negotiate between the two. With Epicurus she agrees that there is little to be gained by worrying about death itself. But, at the same time, she also agrees with Heidegger that we do have to understand the presence and inevitability of death in our lives, as it inescapably shapes them. What is needed is not to come to terms with death itself but rather the fact that our lives are finite and then to learn to live them in light of this.

Following from this, Carel has two pieces of advice for the seriously ill wondering how to live the rest of their lives. First, adapt to the constraints of your illness and do so in a manner that enables you to best do those things you are still able and want to do. (Carel has a motorised bike, which takes her along the routes she used to cycle; she no longer goes to the gym but still attends yoga). Second, learn to live in the present – don’t let the quality of the life you have now be dampened by fears of the future nor yearning for those things which you are no longer able to do.

Once again, this advice won’t necessarily be news to some readers. Similar suggestions can be found in any number of books written in the ‘self help based loosely on Eastern philosophy’ genre. But what is interesting in Illness is to see Carel teasing such conclusions out of Western philosophy. Illness also benefits from a no bullshit approach to its arguments: they’re all the more convincing for being constructed succinctly and logically, and without wide-eyed appeals to things that can’t be true or can’t be known.

One potential criticism of Carel’s advice on how to deal with the personal challenges of life and death when ill is that it’s all much easier said than done. Of course, just because something is difficult doesn’t mean that it’s impossible, and Carel’s own life as detailed in the book shows how much can be achieved. But if you can find such a work, Illness would be well complimented by a similarly intellectually rigorous book that discussed techniques for coming to terms with death and ill health in greater detail.

I’m not a philosopher so ultimately I can’t vouch for the strength of Carel’s arguments on philosophical grounds (although I can attest to the accessibility of her writing to those who aren’t philosophically trained). I do, however, have some experience with illness. I read Carel’s book during a year in which I underwent open heart surgery to replace a damaged aortic valve and part of my ascending aorta. I also had to deal with a severe relapse of the reactive arthritis that I suffer from (and which caused my heart problems in the first place). While neither of these events are of the magnitude of a diagnosis of LAM, they certainly left me with plenty of reasons to dwell on death and being unwell. It was only a relatively minor risk, but the chance of dying during surgery was something I couldn’t dodge in the lead up to the operation. And, courtesy of the arthritis, I know all about the way illness changes one’s geography and the relationship with one’s body – there are days when my toes seem like a long way away, let alone the hill my wife and used to walk up regularly for our evening exercise. So for me Illness had a particular personal resonance. But it’s also a book I would recommend for anyone – healthy and non-philosophically inclined included – because inevitably, directly or indirectly, sooner or later, the way you yourself and society around you thinks about illness will have a major impact on your life. Think about it.

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