Relationships

What Do the Dying Owe Their Loved Ones?

It's a tough call, whose needs are more important: the terminal patient or the people they leave behind

I'm a big fan of Nora Ephron. I didn't know her personally, but I often felt like she knew me. So much of what she wrote felt like something I could have said … if I was as witty and wise and as good with words as she was.

I love just about everything she said and wrote, but one of my favorite favorites is the chapter "On Maintenance," from her book "I Feel Bad About My Neck," where she writes about the increasing amount of time a woman has to spend on maintaining her looks as she ages. She calls it "Status Quo Maintenance" — what you do just to stay more or less even: the routine, everyday things required just to keep you from looking like someone who no longer cares.

Lots of women instantly identify with this, but most of us can't express it quite so well. Nora died last June, and I miss her humor and spot-on assessments of human behavior. Yet she remains someone I'm completely fascinated with. She died of pneumonia, brought on by acute myeloid leukemia, something she fiercely fought for more than five years.

What fascinates me is that she kept her illness quiet from just about everyone except immediate family and a few close friends, as she continued to lead a busy, sociable life right up until the end.

According to the New York Times (and many other publications), some of her friends, naturally, had a strong, mostly negative reaction to this, mainly because they were hurt that they didn't know, didn't have time to prepare, weren't able to say goodbye. But Nora wanted to "manage" that. She didn't want to be seen as sick or treated differently. According to her son, Jacob, "What my mother didn't want was to have her illness define her, turning every conversation into a series of 'how are you?'s."

Even though I've never had a major illness, I get it. And in a perverse kind of way, I admire, not only the way she lived, but also the way she died.

My sister did the same thing.

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She kept her lymphoma a secret — even from her husband, until she finally just couldn't anymore. Days before she died, she finally told one of my sisters, who she swore to secrecy. The rest of us found out at the same time: when she died.

My sister was a proud woman and she, too, did not want her illness to define who she was. Many of her friends and our family were a little angry that they didn't know. Except me. I was hurt to lose her and would have liked to have said goodbye, but I wasn't angry. I thought it took a lot of guts (and planning and conniving) to pull off such a thing. I wanted to slap her a virtual high-five for deciding — as best she could — what her last months and days would be like, and orchestrating it entirely to her satisfaction.

Central to both of these very private deaths is the reaction of those who loved both of these women. Most experienced a combination of hurt and anger but, as the old adage goes, "Whose life is it anyway?" That is, what do the dying owe their loved ones? Whose needs are more important: the dying person or the people they leave behind?

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I totally understand the feelings of the bereaved, but I think I'm on the side of the dying. I once expressed to one of my sisters and a good friend — while discussing this very thing — that not only did I understand it, but I could see myself doing something similar … perhaps. That didn't go over so well, so I dropped it. But, I, too, would really hate — I think — being seen as ill, being treated differently, gingerly. And, of course, I say "I think" because we can't really know what we'll do in a situation we've never been in, but I can say for a fact that I do consider this "quiet exit" a real option. Is it really so wrong?

   
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