A day after the death of Theresa “Terri” Schindler Schiavo, and on the eve of what may soon be the death of Pope John Paul II, I have finally coalesced all the things I think have been so wrong about what has happened to our government, our judicial system, and our humanity as members of the United States of America as a whole.
It has been bothering me for months, on and off, since Terri Shiavo became the center of media attention and a poster child for the religious right. I couldn’t put a finger on just what it was; why it was a problem for me to watch the news in conjunction with her “life” and now death. But now I have it nailed, and I want to be sure that I am explicit in explaining my views on the subject, because they relate directly to me and how I want to be treated if I ever comes to this.
As you may already be aware, my mother died when she was 43 and I was 14. The details, still fuzzy nearly 30 years after, remain that she was a sufferer of Chronic Progressive Multiple Sclerosis, and that she died of complications on April 17, 1978.
What this fact fails to convey is that from the time I was approximately five and a half (a year older than my eldest daughter is right now), my mother was no longer a resident of my house. After long and careful consideration, and based on the medical support available at the time, it became clear to my mother that by moving home to her parents, she was acting in the best interests of her children and her husband, who could not continue to care for her in the way she needed.
I recall the day the ambulance came to take her home to Brooklyn. I don’t know if she drove the whole way there or if they put her on an airplane and transported her that way. I simply remember the day my mom left the house. And that memory, coupled with a few isolated other memories of life before she left, and of life after she moved, are all I have left of her.
But more important to this story are the memories I carry of my mother, being cared for in the basement apartment of my grandparents’ brownstone in Williamsburg, the heart of the Hassidic community of Brooklyn. Grandpa Hy was a general practitioner, practicing for his local community. The equivalent of a country doctor, he cared for his neighbors. A deeply religious, orthodox man, he kept his family close about him for as long as he could. Two sisters lived in apartments above, one around the corner until her husband died. That sister, and my Grandma Florence, cared for my mother full time after she returned to the house she left so early in her life.
I can recall the liver, being cooked and then blended down for my mother to eat. I can recall the smell of the egg salad and of pot roast and roasted chicken. I can recall the baby grand piano in the living room, the feel of a sepia portrait when thinking about that house. There were Hanukkah candles and magazines. There was a big, sturdy bed upstairs in the back of the doctor’s office. And there was my mother, in a rented hospital bed, propped up a little and always very near the bathroom. There was a second twin bed right next to hers, where I think Grandma slept, so that she could be nearby.
And I know that my mother lived this way from the time she moved in (except for a brief period of time when she either could or was still willing to sit in a wheel chair), until the day she died.
My mother received hospice care. It wasn’t given at a facility, but it was still hospice care. Were she to become sick today, it might be possible that she could still carry on with some sort of life, but that’s so unlikely, and such fantasy, that I simply don’t think about it.
What I am on about here is that we can call the act of injecting a lethal dose of morphine a humane way of ending the suffering of a dog or cat, but there are those of us who cannot comprehend using the same procedure to end the life of a human being in a similar circumstance.
We can justify carrying out the death penalty for criminals like Timothy McVeigh by using lethal injections. After all, in effect, we are doing to them what they have done to us. But we can’t in good conscience give our loved ones a painless way out, except in Oregon, under special circumstances, and only until the Supreme Court decides whether it is constitutional to allow the practice to continue. Even mentioning the word Euthanasia causes much unrest and gnashing of teeth.
I say that there is something very wrong with this picture.
Medical directives like living wills have been around for at least the last 30 years. I have had mine filled out since Junior High, but did not do a medical power of attorney until my first surgical procedure in 1992. They have gotten much press in the last two weeks, thanks to Mrs. Shiavo’s situation.
Rest assured. Even if my mother was still, somehow, available in the prison cell of her body, she was not even remotely able to communicate. I firmly believe that there was simply nothing for her but to go off into her head for the nearly nine years she lived in that basement apartment.
I have already made my intentions clear elsewhere, but I am stating for the record here, where it is publicly accessible by anyone, that this is my feeling on the subject:
1. If I ever become incapacitated (unable to communicate, unable to care for myself, unlikely ever to recover from this state), I do not want to be alive.
2. If I ever experience a life-threatening state, I do not want to starve to death. I want as much medication as is necessary to end whatever pain I may be in.
Let me repeat: Do not starve me to death. End my life.
3. Do not bury me – Ensure I am gone (remove my heart or some other medically necessary organ so that I will not wake up), and cremate my body. Dispose of the ashes as you see fit – don’t keep me hanging around in an urn somewhere, waiting to be dusted.
4. Do not have a funeral for me. I presently have no use for clergy, though this may change at some point, and will be much happier if you gave me a party in my honor. Sing songs, tell jokes, read books. Enjoy what I leave behind. And mourn if that’s right, too, but don’t do anything in a church – you’d never be able to pick the right one.
Nothing can be more torture that being forced to see my loved ones and not be able to say to them “I love you.” I know that this must have been my mother’s fate, if she was still there at all, because her ability to speak left her long before she died. Do not put me through that same torture. Let me out.
April 01, 2005*