Tuesday, March 22, 2005

Culture of Life and Death

<>You can’t really believe this isn’t a political issue.
I mean, it shouldn’t be. But it is. It’s been turned into one, and that’s why you’re hearing about it.
I’m appalled that it’s being billed as a right-to-life issue. Does any one of those people really believe that they would want that for themselves? This has nothing to do with a so-called “culture of life.” It’s about an issue some people thought would polarize us more, and bring more conservatives on board. And maybe it did, but I don’t think it’s coming out the way they wanted. Turns out, the vast majority think Schiavo should be let go. Including Republicans and Democrats, church-goers or not.

I’m lucky that my parents already know not to keep me on that kind of life support like that. We’ve had a lot of talks, and even some things in writing, some hard decisions made, who will be in charge, make decisions for you? Funnily, most of us chose my sister for that task. I don’t even understand all the terms and variations of life-support and states of life and consciousness. Who cares? Technology will change those rules. The important thing is the quality of life.

I can’t say I was lucky exactly, but maybe in a way, that I learned a lot about dying from my aunt a couple of years ago. It was around this time (March 29th, 2003) that she finally passed away. Carol had been an activist for cancer and death and dying issues for years; when it came for her, it seemed a little too suitable. She knew the stages and all the things the doctors should have had to tell her. She would only allow laughing in her hospital room. She had my grandparents bring her peanut butter and vegetables that the nurses would keep for her. There wasn’t talk about when she was going to get better, all the things we’d do. Why lie?

Later, she was released from the hospital and sent home to my grandparents’ house. Why stay in the hospital? Just so the nurses are there to drag your life as long as possible? She was moved into the ground floor bedroom and spent the last several weeks there. Getting around a bit, running out of breath all the time. Her lungs were failing her at the same time that the ovarian cancer attacked her. One night an ambulance was called to revive her. She made her sisters promise never to do that again. Ambulances and hospitals are harsh things. Even the gentlest nurse or the coziest hospital bed, it’s not your family and home. It’s not restful. It’s not where you want to live or die. Mary was chosen to be Carol’s decision maker and guardian. She was most available and able. Carol had plans for her funeral, she probably had had them for years. She wanted to be buried in a pine box, a very simple casket, in her bicycling clothes. She had an Emily Dickinson poem chosen for her prayer cards. She dyed her hair bright green since it would fall out anyway. She counseled those who grieved early. She laughed at her death, on its way. All of this under my grandparents’ roof.

The time came and no ambulance was called. We were all on our way from various parts of the state anyway, to see my cousin’s daughter in a local play. Carol held on as long as she could, but when we got there, she was gone. When we came into the house it was a little quieter than usual and most of the people were in Carol’s room, some on the bed next to her, some in the chairs, waiting with Carol. People trickled in and out and hushed. We ate a talked a little. And finally, my grandmother thought that she should call someone from the mortuary. Things became a little painful when they arrived, as my grandmother became distraught that she couldn’t find her shoes to walk out with the body, and flitted around the back of the house not knowing what she was supposed to do. “I should go out with them. That’s my baby. Shouldn’t I? Should I? What am I supposed to do?”

I don’t know what a mother is supposed to do when her daughter gets carried away.

It’s probably one of the most painful things I’ve ever experienced.

But it happens. My grandparents learned volumes from Carol. She guided them lovingly through the dying process, and made us all better people.

Carol’s death touched hundreds or maybe thousands of people. She’d been very active with cancer patients and survivors, hospice care, the deaf community, and lately Murder Victims Families for Reconciliation. I can’t remember exactly, but I think it was about 13 years between her breast cancer and the ovarian cancer/pulmonary fibrosis that final killed her. She had inspired thousands, and touched millions through her work. If you have cancer or are close to someone who does, you are probably benefiting from her work. My grandmother received emails and letters from strangers all over the place, condolences and stories of her impact on their lives. A woman none of us knew came to her funeral because she had met Carol when she herself had breast cancer and didn’t know what to do.

If you haven’t talked with your family about your wishes for your death, do it now. It’s an uncomfortable discussion. It’s a complicated one. At the very least, name someone whose judgement you trust, to make those decisions for you. I don’t think there’s a person on the planet who would choose to be kept on a life support system for 15 years as a vegetable. It’s no good for the person who’s dying, and it’s even worse for the people who love them.

I want to make my own “culture of life,” and it sure as hell doesn’t include laying unconscious in a bed for 15 years. I’ll live my life now, thank you very much. When it comes time for me, my family know to pull the plug. I’m an organ donor, and I want to be cremated. I know there will be songs and drinking at my funeral. You can cry, but there should be some laughter too. If anyone wants to know, I had a blast.


<>Charles: don't croak too soon. I still need you around. But, you are right, don't keep me alive with a tube up my kiester, pumping it in and out. If I can't feel my penis, pull the plug on me.

but YOU! better be around. I wanna get so drunk I piss myself at your wedding, and I wanna be the first to barf on the floors in your next home.

i think I am about to lose my office betting pool. I put my money on the Pope going before Terri.
Posted by Charles on Monday, March 28, 2005 at 8:40 AM

Freakishly, I suspect the pope has another month in him. I have no idea why. By all counts, he ought to have gone off by now. I'm a little perturbed that he's clinging so to his life. I mean, what is he afraid of? Doesn't he have himself all spiritually in order? Does he doubt his afterlife?

Anyway, I'll be in Rome soon, so I'm partially wishing to hit it at a really interesting time. Maybe I could go see the smoke signals and all that.

Posted by Rebecca on Monday, March 28, 2005 at 10:04 AM

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