Sunday, November 4, 2012

End of life issues in the novel BLUFF

You can reach Lenore Skomal and check out her blog and other books at her website,, or connect with her on Facebook, Twitter, Linked In and Goodreads. Buy BLUFF here.

Long before Terry Schiavo became a household name but right around the time Jack Kevorkian was charged with murder in his first public assisted suicide, my mother died from complications of multiple myeloma. The grueling seven months after her fourth stage diagnosis were sheer hell and had the resulting effect of putting death on the front burner of intriguing topics for the rest of my life.
   Anyone who has ministered to a precious loved one during a terminal illness and the accompanying aggressive conventional medical treatments has undoubtedly pondered, very soberly, what the medical community general refers to as end of life issues. Like most euphemisms, the phrase is meant to ease us into the dark topic of death. On paper, it seems as generous and charitable as putting a favorite family dog to sleep—heart wrenching, but necessary if one wants to be a responsible pet owner.
   But when the doctor entered my mother’s hospital room late in her disease and she lay in the twilight world of a morphine haze, her mouth moving slightly and hands twitching every now and again, he wanted to discuss what she would want if and when the time came and she was being kept alive by life sustaining machines. In fact, he said it right out loud, within inches of this semi-comatose woman.
   Appalled, I whispered in a harsh tone that she might be able to hear him, and he waived that off as being nothing more than wishful poppycock. I wasn’t convinced. I stared at my mother, all 89 pounds of her. Yes, the end was near, but did she need to know that?
    “I want to show you something,” he said, as we followed him down the hallway, through heavy metal electronic doors into a large, dimly lit room. The unsyncopated clicking of multiple ventilators, like drunken cicadas, softly peppered the background noise of this room, punctuated by electronic beeps and the muffled squeak of rubber-soled nurses. Bed after bed was lined up on either side, and the bodies of patients being sustained by medical technology lie dormant, their spirits suspended in some unseen place, waiting. “Do you want this for her?”
   It was a convincing demonstration, and of course, my father signed on the dotted line. With that, I knew nothing would be done to resuscitate this person who meant more to me than anyone else in the world.
   But pulling the plug isn’t so easy to do. Luckily, we never had to do it. Neither for my mother nor for my father would follow her 15 years later after being diagnosed with leukemia. Their bodies simply gave out.
   Since then, much has changed about my own personal views about euthanasia. There was a time when I watched my mother lying on the gently inflating air mattress that softened her sleep, her arms and legs black blue with the internal bleeding that comes along with her cancer and her spine collapsing into itself so she could no longer stand, much less sit up. I envisioned killing her. So desperate was I to relieve her burden that I conjured up ways in my mind—there was no Internet to speak of at the time—to end her life and thus her pain. It tore my insides apart to see her at the mercy of cancer.
   Living through this left me a strong supporter of assisted suicide; so much so that I had a backup plan with a friend of mine, if needed. He and I agreed in a blood pact that we would, if the time came, be the Jack Kevorkian in each other’s lives. This was only strengthened after Terry Schiavo’s case hit the headlines. Euthanasia became a cause for me, and like most causes, it took on a life of its own, so much so that I became myopic. And that’s dangerous.
   Years have a way of softening things. While I am still technically a supporter of someone’s right to die, I’ve come to embrace that it’s a massively complicated matter. And it doesn’t and can’t be boiled down to the manmade quantifier we commonly call “quality of life,” the meaning of which has been erroneously supposed for many years. The doctor who took us touring through the medical intensive care unit that day 22 years ago tossed the phrase around as if we all agreed on what it meant.
    There is no such thing as quality of life without suffering. That’s the truth. Dying, fast or slow, is painful—if not for the person dying, then for those around him. And all the pain pills, rational decision making, form signing and plug pulling isn’t going to allow us to sidestep that.
    I no longer have a death pact with my friend. It’s null and void because I’m no longer certain. The closer I get to my own death, the more aware I am that I don’t know what I want. And if I do contract a terminal illness like my mother, and it means months or years of enduring a journey of excruciating pain, then so be it. Because I can’t see the larger picture at this point, and there’s a freedom in accepting that. So, I’m leaving my options open.  

You can reach Lenore Skomal and check out her blog and other books at her website,, or connect with her on FacebookTwitterLinked In and Goodreads. Buy BLUFF here.


Debby said...

I remember when my stepfather died of cancer that I would not want my life prolonged and I still do not.
debby236 at gmail dot com

Catherine Lee said...

What a painfully thought-provoking post! At age 36, I was diagnosed with leukemia. I checked out a few hospitals for treatment. A nurse at one of the hospitals told us (me & my hubby) to "Forget about treatment. You'll die anyway. Chuck it all and go to Tahiti." WELL, I might consider that advice in my 60s or 70s, but not in my 30s. That was 14 years ago and I have never forgotten what I perceived as HER definition of "quality of life."
catherinelee100 at gmail dot com