On Being Ill

Posted November 10th, 2008 by Jane

Last week as I lay in my bed feeling ghastly I grabbed Virginia Woolf’s On Being Ill from my bookshelf, looking as I often do, for solace, empathy, affinity in someone else’s writing. I found little, beyond the reminder that sympathy doesn’t help much and that illness is essentially experienced always and only…alone. The suggestion that being ill brings unforeseen benefits like an enhancing of creative talent just left me feeling worse.

So I reached for Musa Meyer’s Advanced Breast Cancer: A Guide to living with Metastatic Disease, a book from which I have drawn strength in the past. This time though the section on Illness and the Human Condition feels deeply unsatisfactory Here there is much talk about finding ‘meaning’ in wretched circumstances, reaching ‘transcendence’. Again I feel inadequate, though a few quotes are worth mulling on. This from psychologist Arthur Kleinman:

“The fidelity of our bodies is so basic that we never think of it. It is the certain grounds of our daily experience. Chronic illness is a betrayal of that fundamental trust. We feel under siege: untrusting, resentful of uncertainty, lost. Life becomes a working out of sentiments that follow closely from corporeal betrayal: confusion, shock, anger, jealousy, despair.”

So I closed my books and lay there, my mind tortured by the horrible feelings in my body. I have never been one for body/mind integration…I think of me as my mind, and my body an appendage that usually in the past behaved itself as well as necessary for the things I wanted to do…eat, have sex, get to work, and a bit of gentle walking. Physically I was always un coordinated and my body never did outdoor pursuits: it found difficulty even jumping, running, swimming. My body was not ill often…not till breast cancer treatment.

I sort of knew before the little procedure that I was focusing too much on the peripherals. Indeed the operation went well…despite a ghastly 4 hour wait in a disastrous private hospital where the nursing skills made me long for the NHS.. the surgeon and anaesthetist did their jobs well. I woke up, with my teeth, and felt if not on top of the world, pretty normal and OK.

Instructed not to use my voice at all for 48 hours….I broke the rules about 40 hours later and went out to lunch and talk with R. and friends. A few hours later and I felt dreadful. My throat swelled, I coughed and hacked, I was exhausted. I nearly went to Casualty in the night. I could hardly breathe, my throat felt like it was getting dragged across gravel. And I lay in bed, listless and exhausted and frightened. Yes, practically it got sorted…a GP visit, emergency visit to Registrar and anti biotics and penicillin (aftewr another ghastly endoscopy) and today I am at last shakily so much better (and yes my voice almost sounds like it used to.)

But the outcome is not the point right now. It is the coping with illness of the body that I want to talk about. As I lay endlessly in or on my bed or sofa I could not imagine ever getting up well again, ever reading, watching a movie. I thought of my diaries and letters and scrapbooks, the completion of which feels so crucial before I die. And I saw none of them getting touched and imagined the final illness when it comes…and scared myself with thoughts that you never know when and if it might be the final illness.

We all get told we ‘are ‘brave’ when we have cancer…which is a load of nonsense..all each of us does is try to manage the horrible stuff which is thrown at us in the best way we can. I’m useless at it. I think though that some people are more stoical than others and I am not stoical. In illness I am reduced to being a child (indeed I know that a stretch of lonely hospitalisation as a 3 month old probably contributes to my hideous feelings now…but knowing doesn’t help either).

The self help books tell me I can learn to ride the emotional ups and downs..how easy to say when you’re on the up, how impossible to do when you’re down.

I am tired of feeling ill, I am tired of being ill, I am tired of having cancer.

Mind you thanks to the American election and Barack Obama I did have just a few moments of pleasure during the bad times on Tuesday night.