Shit just happens Part II

So I stayed up half the night blogging and reading many of the thoughtful comments that were appended to Dana Jennings's blog post about the uselessness of the words people employ to talk to and about people with cancer. Almost everyone agreed with him, but many were big-hearted enough to acknowledge how difficult it is to know what to say in this situation, and that the foot-in-mouth syndrome springs from a real need to be kind and helpful. I can't stress this enough, perhaps because I have been guilty, and continue to be guilty, of saying some of the same things that people say to me when I talk to people with cancer, things that aren't helpful. But who gets training in how to deal with this? We're all trying to do our best, both ill people and their friends and family. Some people can't deal with it at all and fall off the face of the earth when you most need them; I'm sure the lack of language to address the issue is a part of that.

I will copy here some of the comments people wrote in response to Jennings that I could empathize with:

Survivor never much appealed to me as a descriptor of my medical condition. If I knew I was going to survive, then cancer would not be such a scary ordeal.
When I refer to myself, and when I write about other young adults with cancer, I call us patients. In all of its clinical lackluster, it best fits the role I play in the cancer community and the role cancer plays in my life.
I know I’m brave (though I have no other choice to be). I know I fight (with my doctors and the system more so than the disease). I know I have a medical ID number, make appointments, wrestle with insurance, wait for good or bad news, white knuckle my way through pain and live with a lot of gratitude for the parts of my body that are still healthy. That is the work of a patient. When I talk about my cancer life, I call myself a patient. The rest of the time, I’m Kairol.
http://everythingchangesbook.com/

I don’t mind the word survivor, or even victim (if used in past tense); they’re used for, say, accidents or heart attacks too. But the battle imagery does seem to be unique to cancer and I disliked it when I was going through the cancer, and to this day. I can’t think of any time in my life when I had to be so passive. How on earth that made me a fighter I will never understand. I accepted and I cried and I endured and I did things to help myself such as nestling in the arms of support groups, and I came out the other side…. a survivor. But I didn’t fight it anymore than a heart attack victim :) fights his or her heart dysfunction.
— Debra Anderson

As for bravery? My standard response is “Don’t mistake lack of options for bravery.”
Bless you Dana,
— mary

I do agree that it is better to say nothing, or very little, rather than say the wrong thing. I had a friend avoid me because he didn’t know what to say. I called him on it, and he blurted out, “I’m worried about you, I’m scared you’ll die, I want you to get better.” I appreciated that MUCH more than the people who told me I’d make it because I was a strong fighter. I’ve wanted many times to ask that person, “Okay, if I die does that mean I was weak?” But there is this strange self-imposed etiquette when you have cancer and someone says something stupid to you. You can’t upset them, you have to comfort them.
Just once I’d like to read an obit that said, “After a sensible acceptance of her cancer, Jane Doe passed away at home under hospice care.”
— Alice Payne

People have been telling me lately that I'm their hero, that I'm so brave. I remember saying that to my friend Adele in the 10 months between her cancer diagnosis and her death. She replied that she had no choices, so she could hardly be brave. But some people do display more equanimity during an illness than others. I think it's important to distinguish how people live and how they die. You're alive until you're dead, and if somebody wants to admire something about the way I live now, that's fine. But to ascribe to me a strength that will help me "beat" cancer; or to think that I have any happy choices in anything that's happening to me; or to describe me as being enjoined in some kind of war that I can win or lose based on my character -- it's all silly. How I live each day is all that matters -- it's all that ever matters for all of us. And when friends and family look at me and say, "I couldn't do what you're doing," well, guess what, if it happens to you, you won't have a choice but to "do it." And you'll probably continue to be much the same person you were before, except that you'll have to cope with a sometimes deadening passivity.

I'm fortunate to have friends and family who listen, offer specific help, make themselves available and don't mind my bossing them around to reach things for me, make my bed, fold laundry. They're free with hugs and laughter, and that keeps me going.

Pollyanna moments:

• I had a marvellous day yesterday after a slow and difficult start (hard to get out of bed sometimes). Two old university friends took me out for Indian food in the wheelchair, and then we got in a BMW convertible and cruised out to the Scarborough Bluffs with the top down in the wonderful 20 C weather, exploring some lovely neighbourhoods and looking at misty Lake Ontario. It was glorious. In the evening Helen helped me go out to the spring concert of the Metropolitan Community Church (there's another performance tonight), in which my friend Karen H. was singing -- she and I were choir buddies in Rainbow Voices when it was still running -- and there were some great guest performers including the wonderful gospel/blues singer Jackie Richardson. I had a great time.
• My sister and her kids visited me for two days and we went through some old keepsakes: my old Girl Guide uniform, "mod" neck chokers I wore in the hippie days, the white confirmation dress my mother sewed for me, the back brace I wore when I was 9, the first blouse I sewed in Home Economics class, stuff that I guess will get tossed when I'm gone, though maybe my niece will take some of it. I got to watch a lot of strange (to me) TV with the kids: iCarly, Sponge Bob Square Pants, Home Alone. And we went down to the Beach with the wheelchair, and walked in the sunshine. It was such a treat to feel the warm air, even poisoned as it is with exhaust fumes blasting off Lake Shore Boulevard, followed closely by the lovely east end sewage treatment odour. That's my Toronto.
• Liz brought me homemade chocolate chip cookies, homemade mushroom soup, great bakery croissants and pain au chocolat, and chocolate gelato. Nothing tastes quite right at the moment, but I still manage to worry down lots of food.