Monday, April 07, 2008

"Write about what you are afraid of...."

The title of this post is a quote from noted author, Donald Barthelme, who celebrates his birthday today.

I got it from Writer's Almanac, which sends me (the poetry freak) a neat little e-mail each day with a new poem. The e-mail also tells me about birthdays of famous writers and other important events in history on any given day.

As soon as I read Barthelme's quote, I thought, "I have to blog about that."

Here is what I am afraid of: I am afraid of pain and illness.

That fear has been present this week, partly as a result of the death of my dear friend's father from Alzheimer's last week, and partly because April has difficult memories attached to it for me. Both my mother and my grandmother were widowed in the same week of April 1997. April has, indeed, been the cruelest month for my family.

**********************************

Like anyone else my age, I have seen plenty of pain and suffering among my friends and relatives. My beloved grandfather took 10 years to say The Long Goodbye. He suffered from progressive dementia during that period, and for the last six years, he was bedridden.

My grandmother--who took her vows of "in sickness and in health" with deadly serious earnest--refused to consider putting him in a nursing home. She took care of him herself all that time---changing his diapers, blending his food into mush when he could no longer chew safely, feeding him spoonful by spoonful, for years.

She was no martyr about it, either. She never showed any signs of irritation or bitterness over the ways in which her life changed in those last 10 years. She loved him, and she took care of him, just as he had taken care of her all her life. (She was only 15 when they married, and their marriage lasted 56 years.) It was as simple as that.

When he had a stroke in 1997, my priest and I were visiting them in the hospital. My priest, a loving, kind, and holy woman, had just asked my grandmother if she was considering hospice. My grandfather's doctor, a small, energetic Indian gentleman walked in just as she said this, and breezily brushed my priest off. "He's not dying! He doesn't need hospice!"

Mind you, my grandfather was completely unresponsive at this point. And this doctor convinced my devoted grandmother to insert a feeding tube into my grandfather. "You don't want to STARVE him to death, do you?!", he admonished her.

It took my grandfather three, long, horrible weeks to die. He never once showed any signs of responsiveness after the stroke--and I have learned since then that forced nutrition/hydration to a body that is dying can actually be very painful.

What was done to him was an act of violence---and my grandmother was violated as well. A doctor, who would not admit that death was eminent, used her love and sense of responsibility to my grandfather to manipulate her into doing something against his best interests. (I still have to pray for forgiveness about my attitude toward this doctor...11 years later.)

My stepfather, Larry, whom I also dearly loved, was diagnosed with cancer that same year. He was 53. By the time they found it, the cancer---which had probably started in his lungs (he was a lifelong and heavy smoker)---had traveled to his colon, liver, and pancreas.

Pancreatic cancer is basically a death sentence---to my knowledge, there were no approved treatments for it in 1997, and I do not believe treatment options or survival rates have improved much since then. Yet, I watched them torture him to death with chemotherapy they knew could not succeed. They just couldn't admit to him that he was going to die.

Death is the enemy in America---and we will go to any lengths to hold it at bay.

I am afraid of illness or dementia. I am afraid of pain. I am not in the least afraid of death. I believe that something comes after death, and, although I have nothing other than a deep feeling in my soul to support the notion, I believe whatever it is will be good.

I wonder sometimes what I will do if I am faced with a decision that will involve pain and suffering. I have a low tolerance for pain. I have watched others pursue aggressive treatment for various life-threatening illnesses, and I cannot---even as the mother of young children---see myself doing the same. (Please understand that I pass no judgment at all on those who do--and I support anyone who desires to take advantage of all treatment options. I just don't think I could do that myself.)

Occasionally, I will have this discussion with others, and they will say "Well, Doxy, you say that NOW. But when your life is really on the line, you will change your mind."

Maybe they are correct...I can't say for sure. But I can say that I fear pain and illness more than I fear death.

I have a Living Will that spells out my opposition to certain forms of treatment---and I have even included my opposition to being fed or hydrated under certain conditions, though there is no guarantee that those wishes would be honored. I have tried to face my fear in a practical way, but it remains. And as older family members begin to fail, and friends face terrible decisions, that fear is growing.

Aging is not for wimps. And I fear that I may be a wimp of the first order.

So what do you fear? Take Barthelme's challenge and write about it.