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Independent.co.uk
Havi Carel: My 10-year death sentence
As a philosopher, Havi Carel spends her days grappling with questions of mortality. But her theoretical
notions on the meaning of life and death were turned upside down when she was diagnosed with a
terminal illness - and told she had just 10 years to live
Monday, 19 March 2007

"So, how long have you got?" The first time I was asked this question, I was dumbstruck. The horror of it,
and the casualness with which it was asked, was too incongruous for words. Was it simply curiosity?
Ignorance? A clumsy attempt to "connect" with me? What else could motivate someone to ask such a horrific
question? Yet, it's a question I have been asked again and again - by friends, acquaintances, even strangers
who have seen me sitting in a café with an oxygen cylinder beside my feet.
Once you are ill, I realise, you become fair game. You slide down an implicit social ladder. Others begin to
perceive you as weak and unimportant, an object of pity and fascination. In asking: "How long have you
got," they compress all their horror, anxiety, pity, and relief that this is someone else's story. How else to
explain how people find the obtuseness and cruelty to ask you - in so many words - "When are you going to
die?"
I am not impressed. I feel like screaming like that old lady on The Catherine Tate Show: "What a fucking
liberty!" To the people who really piss me off, I quote the figure from Wikipedia: five years. I watch them
deflate, shoulders sagging, thinking: "How awful. Gosh, I'm glad it's not me."
To others, I provide the official figure: 10 years. I can see them doing the sum in their heads: "Wow, that's
really young. I wonder what she feels like, poor thing." To the people I feel deserve more respect, I give a
slightly more complex answer, explaining the possibility of medical advance and lung transplantation. To my
loved ones, I say that everything is open, we don't know what the future holds, and anyway, no one knows
when they are going to die.
Imagine the opposite situation: me approaching one of my colleagues smoking a fag at lunchtime and
asking, amicably, in that faux-concerned tone, "So, how are you coping with your mortality? Do you often
think about the fact that an average smoker your age has only another 10 years to go?" That wouldn't really
cut it, would it.
But somehow, when you are my age (36) and ill with one of the rarest diseases known to mankind
(lymphangioleiomyomatosis, or LAM), asking you the most intimate of questions becomes legitimate. The
rules change when you are ill. You are, as Erving Goffman put it bluntly, stigmatised. You become an
outsider to the world of the healthy, an offensive reminder of the ugly underbelly of life.
Having written as a philosopher on death, years before my diagnosis, I often think about the real meaning of
the question. What those people seem to be asking me is: "What is it like to be acutely aware of your
mortality? How do you prepare for death? What does helplessness feel like?" They ask because they know
that I have, unusually, been given access to a terrible and unwanted vision of my future.
Something has happened to my temporal existence. My future has folded in on itself. It has exposed itself to
me, contrary to both the laws of nature and of human nature. We are not meant to be able to see into our
future. We are propelled into our future, thrown into our projects with no premonition, no peeking. Our life
stories are meant to unravel as we go along, at a rate of one second per second. No slower, and certainly no
faster. But I was given a crystal ball through which, with painful accuracy and nauseating detail, I can see
my future: further decline, hopeless prospects, premature death.
The Greek philosopher Epicurus argued that the fear of death was irrational. "Where death is, I am no
longer," he said, "and where I am, death is not." So long as you are alive, death is nothing to you. And once
you are dead, you are no longer there to feel anything, fear included. Life and death are mutually exclusive.
If you think about it carefully, Epicurus said, you realise that what you are really afraid of is not death but
dying, the pain of illness and decay. There is nothing to fear in death itself, because death is a state of
non-existence. It is incoherent to say that you fear not existing. Epicurus thought that those who fear death
were confused and should use rational arguments, like the ones he provides, to overcome their fear.
Another philosopher, Martin Heidegger, thought differently. He argued that death is a constant presence in

5/13/2008 2:25 PM

By then I understood something was wrong. missed opportunities and having to take a different course in life than the one I wanted.The Independent . Its intellectual approach seemed evasive. just under 8 stone. I was a meagre 48kg. I never improved. one of them contained my scales.. especially going uphill and climbing stairs. then 20 minutes passed. I wore a lavender jumper that my sister had just given me. with all its limitations and truncated future. He parked and walked into the building. I entered a dimly lit room. Ten. my father. But now. But on the other hand. By the time we were back in the UK. and renamed human existence "being towards death". If I do not believe in the persistence of my mind after the death of my body. to enjoy what little time and health I have. I walked to the radiologist's office.. It is a constant presence. In April. I had been feeling breathless for a while. one must understand oneself as finite. Epicurus is right. To understand life fully. I had the scan and went on to see friends in Tel Aviv. going to work in a taxi because I couldn't cycle. The radiologist looked up. a perpetual shadow.uk/news/people/havi-carel-my-10year-death. there are other things to regret in death. really . He was not back. After my diagnosis. my first book was published: Life and Death in Freud and Heidegger. these abstract questions have a real urgency for me. My father was holding his head in his hands. crass. But after a while. Perhaps some people . The radiologist was showing my father something on a computer screen. But where I am. I went to visit my parents in Israel. With Heidegger. he said. coughing up gack. develop a view that addresses the issues that are so close to my heart. only a month before my diagnosis. I have always thought about death. Like the grief of others. trying to escape the inescapable. The futility of philosophical arguments was suddenly glaringly obvious to me in the face of the practical problems I was facing.the healthy . Yes. When boxes arrived from Australia. I need to face these questions in order to forge a way forward. wrapped in my coat. I bought a skipping rope and practised at home. and to refuse bitterness and envy. In my kick-boxing class I could do everything as well as the next person. Which of these two views is more compelling? In some ways. while my mum and I waited in the car.can live in accordance with Epicurus's ideas. Heidegger argued. I think that in order to understand my life I must understand it as finite.for I have no choice. but I didn't know what of. But sometimes on walks I would see other people climbing hills effortlessly. But it was only in February 2006 that I went to the doctor. death is. How can I make sense of a finite life? What is the role of finitude within human life? Can a limited life still be a good one? These were questions I had grappled with as a philosopher. Over two months. if not a limited stretch from birth to death? Human existence is marked by finitude and limitation. the most tempting vice of all. My parents picked me up from the café. I'd never had a cold like that. In fact. leading an active life. We talked about Michael Haneke's film Hidden. what have I to fear? I am not afraid of non-existence. Moreover. but nothing happened. while I was struggling to breathe. its explicit analysis of death. I feel obliged to find a way to remain sane. Why did I wait so long? The sad and surprising fact is that we can lose up to 50 per cent of our lung capacity without noticing much change.independent. My father suggested that we swing by the medical centre to collect the test results. surprised and displeased to see me. unable to wear half my clothes. which probably masked my breathlessness. I was living in Australia at the time. said that he'd arranged a chest CT scan for me.but to make my life a good one. I was petrified by the coincidence. I began to lose weight and got a nasty cold that stayed with me for two months. I was ill. When I arrived.co. I went to a specialist who said that it was "unusual asthma". giving lectures sitting down. probably since 2004. And yes. I was scared. later. Everything was normal. I could no longer deny that there was something wrong. 15. but for the life of me I couldn't skip rope. and those of us who ignore this fact are engaged in a futile pursuit. it just got worse. but I told her my father was in there and I needed to see him. There I was. long before I had any idea how my own life would turn out. What is human existence. The secretary tried to stop me. She gave me inhalers and told me to plot my breathing. I began to see what I have gained from thinking long and hard about death. It helped me to formulate the questions and. both professionally and personally. I felt a little breathless. life. but I thought that was normal. I see my actions and possibilities as limited and ultimately nested within a finite existence. I weighed myself and my heart sank. who works in a medical institute. I bought sunglasses that afternoon and sat in a café with an old schoolfriend. just to make sure everything was OK. "Oh. So Heidegger rejects the Epicurean idea that death is irrelevant to our lives. as my muscles were efficient and I wasn't overweight. 5/13/2008 2:25 PM .Print Article 2 of 4 http://www. I want not just to be able to accept my illness .

pain or despair.. I see people arguing over nothing. to run.we take all that for granted. I observe my life and the lives of others and see them for what they are: brief. in situations like this. I skimmed further down. difficult. My horizons and expectations shifted. activity and joy. The future used to be something to look forward to. It belongs to me alone. I learnt to be less controlling and more accepting of my inability to do things. I cycle a circuitous route to work. pneumothorax. It suddenly hit me that I have to tell people. Being able to engage in projects. I didn't understand any of them.Print Article 3 of 4 http://www. He simply pointed to the text below and said: "Read about what you've got. to play with your dog. I try not to think about the future. to act freely . hills have become mountains. The porter took me to my room: the third floor. I became able to see the world anew. A few months ago. From the loneliness into which my illness forced me. being unable to be? Illness breaks down the neutrality and transparency of our bodily existence. give us a sense of potency and agency. the radiologist was speaking to my father and pointing to what I now understood were my lungs. The black balls on the screen were not meant to be there. After what seemed like a very long time. it's you. "What's that?" I asked. Illness makes you immune to that. I face a dead end. weeks. illness changes how one is in the world. I said the only thing I could think of: "Can someone get my mother?" Illness changes everything. that I am disabled. I think twice before going downstairs to collect the post. they were cysts created by LAM cells. looking so independent and yet so disabled. 5/13/2008 2:25 PM . Stairs used to lead somewhere interesting or important. like cycling along a canal in summer. Within this inability. of course. Now it is something to dread. chylous effusion. But it has also given me perspicuity. I was made aware of the many healthy years I enjoyed. to carry out actions.. I cherish the things I can still do. a call that may never come. and emotional freedom within the adversity of disability." Words flashed before my eyes: bullae. What kind of being is being disabled. worrying about wrinkles and careers. I no longer cringe when children ask: "Mummy." I answered. full of emotion and agony.uk/news/people/havi-carel-my-10year-death. and the interaction between them is clunky." That would make me 45. I learnt to pace myself and rejoice in small pleasures. my relationship to others. Groceries now come from the internet. He pointed to a word I didn't know: lymphangioleiomyomatosis. abrasive. a cul-de-sac.. to my body. going in and out of hospital with collapsed lungs. But being disabled means being unable to do the things you love. avoiding a hill. what's wrong with that lady?" I am grateful for every moment that is not consumed by sorrow. to face myself as unable and to embrace this unable self.co. Offices and rooms on the fourth floor no longer exist for me. No one looked at me. All the while. I stared at the screen. "Do you know what's going on?" "No. I stared at the radiologist. Unable to go on long walks. It becomes uncanny. A great wave of helplessness envelops me when I think about the future. filled with obstacles. I had to ask him to move me to the ground floor. I thought. a mix I now know well: a young woman with a big rucksack and an oxygen cylinder. months or years after their transplant. Nearly all LAM patients decline. The healthy ones who don't even notice they are healthy. I went to a conference in Durham. The world of the sick belongs to a different universe from that of the healthy. I stared at my father.independent. It changes not only my internal organs. "Prognosis: 10 years from onset of severe respiratory symptoms. I discovered that there can be health within illness. I know the route my future will take.The Independent . I also know of women dying of chronic rejection. I continued sitting there. "What is it?" He smiled awkwardly and handed me a big book. the world of the ill person changes. The geography of my world is no longer a shared one. I became generous towards myself and others. and separates me from the people I walk with." he said. their relation to me. sitting at home for years waiting for a call from the transplant centre. a diagnostic manual. I still have to take a deep breath before saying this. it transforms into a different landscape.. Slight inclines have become hills. He looked at me with a mix of curiosity and pity. I found an ability to be unable. In short. but my relationship to my body. less worried about a looming deadline. my inability to be. Our actions define who we are.. I was suspended in mid-air with one thought only: my life will end in 10 years. Moreover. Distances increase. Now. I know of women dying in their sleep.. joy within difficult circumstances. literally: the bottom of the bag. the visceral joy of fresh smells and colours. stairs go nowhere. books are no longer carried to and from work.

ultimately leading to respiratory failure. The first rule I made for myself is never to ask "Why?" Never say. "if only". To support a runner for LAM at the London Marathon go to www. I still cycle.com/ kategamez. do yoga. I have become a patient-activist. There are an estimated 250. lymphatics and blood vessels.Print Article 4 of 4 http://www. This is not the life I wanted. For the NHS Organ Donor Register. Despite the awkwardness and the stares. but there is a critical shortage of lungs for transplant. see www.co.lamtreatmentalliance. I continue to live as before. org.. like many other women with LAM. LAM: the facts and figures Lymphangioleiomyomatosis (sporadic pulmonary LAM) is a rare fatal lung disease that affects women from all racial backgrounds in their childbearing years.uk/news/people/havi-carel-my-10year-death. This is not to say that there is nothing that can be done.lamaction. see www. Source: www. trying to push forward research and drug trials. Never think that things could have been different.000 women worldwide suffering from LAM. working for the LAM Treatment Alliance. For research news. I no longer refuse it.The Independent .uk The Web ©independent.uk.uk Legal Terms & Policies | E-mail sign-up | RSS | Contact us | Syndication | Work for INM | Advertising Guide | Group Sites | London Careers 5/13/2008 2:25 PM . go to (non-smoking) pubs. In LAM. while we suffer from a terrible disease about which so little is known.justgiving.lamtreatment alliance. For more information on LAM in the UK.independent. abnormal cells proliferate in the lungs.org.co.uktransplant. When people offer help. That is why I have become my own advocate. but I refuse to indulge in "what if". A lung transplant is sometimes an option if a matched donor can be found. There currently is no effective treatment for the disease. We find it hard to accept that the world carries on as before..org. see www.org Independent.co. LAM is a disease that has few advocates because it is so rare. A pannier with an oxygen cylinder was followed by an electric bike.