Living with LAM

by Chris Bertram on March 19, 2007

Last June I wrote about my friend Havi Carel and her battle with the lung disease Lymphangioleiomyomatosis (LAM). Havi has an “article in today’s Independent about LAM”: and about what it is like to live with a terminal illness and how that changes your relationship to others, indeed, to everything.

Last time I wrote I invited you to sponsor Havi on a bike-ride to raise money for LAM Action which supports patients and raises money for research. This time “Kate Gamez”: and “Becky Tunstall”: are running the London Marathon for LAM Action – so please click on one of their names if you want to sponsor them.



Tracy W 03.20.07 at 1:18 am

To give Havi Carel the respect of treating her as a person to be debated, I had a couple of thoughts on her article:

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?”

Apparently people do say similar things to people who smoke. I have never smoked, so I can’t say so personally, but many smokers do have stories of people not only making statements about how smoking is going to kill hem but snatching cigarettes out of mouths, etc. Some people say stupid things to people who go through anything – Miss Manners collects reports of such things as a foreign woman marrying a local being asked if she was doing it for the greencard. It doesn’t mean you’ve become a non-person, it means that some people don’t think before they ask questions and some people don’t realise what questions may sound like to the listener.

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.

This argument has never convinced me. I have thought about matters carefully and what scares me about death is that it means me not existing. I don’t see anything incoherent in fearing not existing. As long as I am alive, death does mean something to me.

I also fear pain and illness and decay, but this is separate from my fear of death. I’ve been through pain and I know that the anticipation of it is worse for me than the enduring of it. Non-existance is so final, and that is what makes me fear it.


magistra 03.20.07 at 3:11 pm

To be brutal, Carel’s article didn’t seem that different from the many other ‘I am writing this as I face death’ articles I have read. There has become a whole genre of this: John Diamond, Nick Clarke, Ruth Picard (?) etc. The philosophy angle (which is potentially interesting) doesn’t really connect to the personal observations, which are largely the old (if true) points about making the most of remaining life, changing priorities etc.

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