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The Best Thing You’ll Read Today

Jill

This piece in the Times about ALS and living a good short life. A bit:

We obsess in this country about how to eat and dress and drink, about finding a job and a mate. About having sex and children. About how to live. But we don’t talk about how to die. We act as if facing death weren’t one of life’s greatest, most absorbing thrills and challenges. Believe me, it is. This is not dull. But we have to be able to see doctors and machines, medical and insurance systems, family and friends and religions as informative — not governing — in order to be free.

6 thoughts on The Best Thing You’ll Read Today

  2. That is so incredibly sad and yet wonderful all at the same time. I’m glad he’s made his peace with it. I hope that I can go with as much grace and style when my time comes.

  3. I’ve had bone cancer for the last two years. It cost me my right arm, and when it recently metastasized to my lungs I was given less than a year to live.

    I’m lucky for my friends and even my former co-workers who donated so much more blood than I have yet to be given, and I’ve had more than 26 units of blood over the course of this disease.

    I’ve been given so much support by UC Davis, who put took me in under clinical trials and charity care, so I’ll never have to worry about a cent of the medical costs, save prescriptions, which have surpassed $600,000 now and are still going up. I think that you can label what I feel for my oncologist and all the nurses I’ve got to know and see regularly as a kind of love. I only wish that in the US everyone can get the kind of care I’ve got. It’s not fair that so many are turned away because of their inability to pay. I would have been one of them too if I hadn’t simply gotten lucky, and hadn’t had such a rare cancer which made me a desirable subject to study.

    But after the fear is gone, when you accept that you are going to die, and not eventually, but soon, dying becomes one of the most boring things one can ever experience. In my situation, unlike Dudley Clendinen’s, I can’t leave the home to do things. I’m simply in too much pain, boring if agonizing pain I might add, to leave my home and meet my friends, to maybe meet a person and experience a taste of the sex life I have denied myself when I was healthy. I can’t travel or even hike and I live in a place of much natural beauty. My world is either my couch or a hospital bed, and the internet.

    Fortunately I have a little hope, we’ve tried chemo just to see if it might alleviate some of the pain I feel, and to everyone’s surprise the tumors in my lungs shrank. So if they continue to do so I will be able to get lung resections where the tumors are, and maybe get back to my life which I hope will be at least 5-10 years long, and better if longer.

  4. Thank god for friends and family. It seems to me the most difficult thing about facing death would be facing it alone.

  5. Yesyesyesyesandyes.

    So much of my work involves being a quiet presence/witness while people die, and I can’t tell you how many times I have left hospitals and homes clenching my fists with frustration and rage because we seem to have forgotten the piece about how human beings deserve dignity and agency in life and in death.

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