Tapati (tapati) wrote,

Support during chronic/terminal illness

Salon had a timely letter from a woman with a chronic, life threatening illness who is weary of the commonly used fighting metaphor. She felt she had tried everything her doctors asked and then some and had reached a place where she wanted to learn to accept her approaching death. She wasn't suicidal, she didn't plan to stop taking care of herself. She just wanted her friends to support her in her effort to prepare emotionally for her likely death. Her letter in Since You Asked sparked an interesting discussion in the letters section. There's an even longer version in the unedited letters page and in Table Talk.

I think everyone should read it because all of us will, in our lifetime, either be seriously ill or know someone who is. We will be at a loss for words and we will grope for the right thing to say while overwhelmed by our feelings. And if we (as a society) don't learn to talk about death and illness instead of trying to deny that it happens or persist in believing it only happens to those who bring it on themselves, we won't be prepared when it happens to us.

Excerpt from one of the letters in response to the column:

Yes, my friends love me. Yes, I'm grateful for that. But their manic terror that I was going to "give up" led us to a place where I wasn't being allowed to ever have any down-time, being allowed to be depressed, to feel sorry for myself for five minutes, for God's sake. My body is so tired and I am so tired of appointments and treatments and horrible invasive painful procedures (and I live in Canada and don't even have the added stress of poverty or worrying about money that this could impose on me in the US), and yet I was like goddamn Martha Stewart all the time, smiling and making sure that everyone around me was feeling reassured and comfortable and seeing how optimistic and fighty I was...

To protect them.

So finally I had to say, "Look. It gets me down. It wears me out. The doctors appointments wear me out. The cutting and the needles and the treatments wear me out. All this smiling wears me out. All this reassuring you guys wears me out. You got to let me do this my way. You got to let me have quiet days when I eat Haagen-Daz in my jammies and watch Judge Judy on tv and feel sorry for myself. You got to let me not be 'on' sometimes."

and another letter:

I am not dying, but I've spent the last 6 months being treated for breast cancer, and considering the possibility that it may kill me before I can buy my first house, or have kids, or get tenure. I've been told repeatedly to "fight!"--an exhortation that I particularly hate. My path is acceptance and working with my reality. I want to treat my disease, but I don't want to live my life as a battle or to hate anything in my body.

I finally told everyone in my life that saying "fight!" to me was just not working. I told them why. Guess what? Some respected my wishes, and others largely stopped saying anything to me.

It's a cliche, but true: when it comes to these life and death matters, you find out who your true friends are. It is painful to give up on anyone you love, but in the end I felt I needed the people with enough faith, and enough courage of their own, to walk through my reality with me, and not insist that I join theirs.

Tags: chronic illness, death

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