How Shall We Live?
How shall we live?
Amanda Hazelton describes her search for healing beyond ‘slash-and-burn’ medicine
and makes a connection between cancer and clowning.
I knew something was wrong when my blood-test result came back indecently fast and my GP asked me to ‘pop along after surgery’. It was ‘terrible news’, she said: I had leukemia. It felt like being struck by lightning. It was 1985 and I was nearly 28. Oddly enough I spent much of the consultation mopping the doctor up. Contrary to popular imagination GPs rarely have to tell young patients that they have potentially fatal diseases. It was her ‘first time’, and I remember thanking her profusely for being so brave.
‘It means a lot of hospital for a long time,’ she said, and sure enough I spent the next morning in haematology outpatients being prodded and pushed and having unspeakably horrible things done to get a bone-marrow sample. They were very nice at the hospital and took the trouble to explain. Leukemia is a form of cancer. No-one knew exactly why, but the cells in my bone-marrow had mutated and started over-producing blood. My white blood count was over 300 when it should have been below 10, and I had hundreds too many platelets, which was why I kept getting bruises. There are many types of leukemia, some acute and some (like mine) chronic. With drug treatment it could be controlled and life would feel normal, but nobody knew for how long. If the disease became malignant – as one day it undoubtedly would – there was not a lot that medicine could do to prevent a speedy demise.
Life was never going to feel normal again – at least not the kind of normal I knew then. I began to live with an extraordinary conundrum: I had a life-threatening illness, but I was not exactly ill. The world calls these conditions ‘terminal’, yet they are no more terminal than life itself. Nevertheless there is always an awareness that terminal illness could be just around the corner; it focuses the mind wonderfully.
In the aftershock my preoccupation with life (how long?) and death (when and how?) begged the real question, which is how shall I live? I kept my sense of humour but part of me was screaming. How could I not have ‘noticed’ that my spleen had swollen down to my navel, and that I was very, very tired? I just hadn’t allowed myself to notice. Like so many of us I was not educated in the art of well-being, only in the appearance of compulsory OK-ness. At the hospital there was no information about where to seek help with these existential questions. My terribly nice (and good-looking) registrar went red when I asked about counselling: ‘Only when you’re terminally ill... near the end,’ he murmured. This is not true of every hospital department of course, but I reckon my experience is quite usual and support is random.
In a hospital setting even the strongest of us is liable to surrender our autonomy to the magic white coat. I admired what they knew about my chromosomes and to some extent I was relieved to be swept into this benevolent patriarchy. The system expected and offered nothing more than for me to turn up for blood tests, take the medicine and live as ‘normally’ as possible, which indeed is all that many patients wish to do.
But another way opened up for me. My librarian housemate rushed home with a pile of useful books. Among the devastating ‘factual’ tomes which charted the course of a hundred different cancers was a personal account of the Bristol Cancer Help Centre where it is acknowledged that cancer affects everything about us, not just bits of our bodies. We can be disempowered and bewildered as patients, but the book argued that if we took charge of our lives illness could even be an enriching experience. I booked a day at the Bristol Centre, and my eyes were opened to all sorts of things – to dietary therapy, relaxation and meditation, spiritual healing, and to the fact that I was allowed to make choices, to behave as if I mattered.
Emerging from this reorientation I proclaimed the virtues of what I had until then called self-indulgence. It was OK to relax, really stop, not just watch TV; OK to go for what felt right, even if others thought it bizarre; to spend time discovering who I really was deep inside, and where I wanted to go. Wow! Everyone should do this. Oh no, said a lot of my friends and colleagues. It’s all right for you to do that because you’re ill. You’ve got far harder things to deal with. It would just be selfish for us. How deeply ingrained this kind of Self-denial seemed to be! It was OK to give, but not to yourself. From my new perspective this seemed potentially dangerous.
Nonetheless friendships grew deeper and more vital. I was lucky: nobody dropped me; nobody looked the other way as so often happens when a serious illness is diagnosed. But beyond my close circle I met the ‘poor you’ syndrome (‘Poor you, but you look all right’; ‘Oh, you must be feeling awful’). Mostly genuine concern, but underneath is all that horror about illness and death for which we have no honest language. As soon as you are life-threateningly ill you become a repository for others’ death fears: as good as dead, except, of course, that you must not die because death is a sign of weakness, a failure for the medical science in which we place our faith, and a reminder that it’s going to happen to all of us and we are in no way prepared. I still don’t know how to respond to unsolicited sympathy.
Life began to feel like a quest. I negotiated the hospital world which was often kind, wise and humorous and occasionally patronizing and infuriatingly arrogant. I took drugs by mouth, and injected myself with Interferon which made me feel as if I had ’flu all the time. I even spent nine weeks in isolation having all my bone marrow (and most of the rest of me) temporarily wiped out in the name of ‘slowing down the disease process’.
The hospital world is limited by the assumption that you will go through medical hell (‘slash-and-burn medicine’ as it was once described to me) just to survive, and that nothing else really counts. But this ignores what I see as the nature of healing. I was grateful for medicine, but I needed more. I needed to find meaning and adventure, to plumb the mysteries of life, to fill some of the gaping holes that hospitals do not even pretend to patch up. I would have loved to have had a massage while languishing in hospital, and couldn’t the gentler natural therapies have helped? And yes, I have met doctors who are open to all this, and who have looked me in the eye and said: healing is a mystery, we know nothing and nobody can say with certainty how a person’s life, or their illness, will progress.
My thirst for discovery took me into the ‘mind-body-spirit’ world. This can seem a confusing, new-age market-place offering every kind of salve and inner journey if you can find your way through the over-bright smiles, bogus claims and rainbow colours – and if you have the cash. However, there is gold to be found if you are selective. Swollen like a balloon with excess fluid from drug side-effects which the hospital could do nothing about, I tried acupuncture and dietary therapy which both helped. And now that I see a homeopath I feel better than I have for years.
I did relaxation and visualization exercises to try and reach a wisdom beyond my over-educated intellect. I joined support groups. My relationship life went crazy. I read books which identified a link between serious illness, spiritual malaise and neglect of our creativity and deeper needs. This took me into therapy – to find where I had lost that part of myself, and when I was ready I explored all sorts of creative avenues until I realized that I wanted to play and sing and be a clown. This has blossomed into a strange kind of vocation. Religious education had taught me little about spirituality, but healers and other inspiring teachers have helped me to reach a strong sense that there is a great deal beyond the world I know. I still have the illness and I still take the drugs, but in many ways I feel healed.
There are still huge challenges to negotiate. How, for instance, do you tell a new partner that you have a life-threatening illness? And a potential employer? Unexpectedly out of work, I’ve been poring over job descriptions, alarmed at the challenge of selling myself and offering guarantees about what I can achieve and when. Chronic leukemia rarely causes trouble in itself, except that years of drug treatment and stress do take their toll. Applying for a job confronts me again with the question; am I a ‘normal’, ‘useful’, ‘paying-my-way’ member of society, or a non-person, a patient forced into passivity, who cannot expect to contribute and who must wait for what is dished out financially, medically, socially?
And what if the truth lies somewhere in between? People like me, who can hack it most – but not enough – of the time tend to fall through cracks; not disabled or incapable, yet having to swim twice as hard to stay afloat, which doesn’t make sense when we need to take care of ourselves more than most. That’s why being a clown, a vulnerable clown with an open heart, is part of survival for me. Life is unpredictable and gives you knocks, but the clown’s way is to transform that into treasure, be it glorious and funny or sad and painful, and to live as fully and richly as possible with all the cracks and contradictions.
Amanda Hazelton worked for a development agency for 14 years and is now a freelance writer, cook and clown.
©Copyright: New Internationalist 1995