Taking My Own Temperature

Today is a day of mixed emotions for me. It marks a turning point in my life, that very hump which many of us approach with anxiety, or look back on with wistfulness. Today marks that middle point: I am halfway to 90 years old.

Of course, what this means is that -- in the simplest terms -- I have fewer days ahead of me than I have wasting behind. In earth days, at least, I have used up most of my heartbeats. It is all rather disconcerting, if I just look at things in a particular way, a particular jaundiced way.

Today's topic is not going to be about my mid-life crisis (which began when I was 21). But it is about death and dying. I do not see how this essay can avoid being personal. For what follows is intensely personal. Those of you who are faint-hearted may want to go elsewhere. This is about guilt, death, anger, loss, and judgment. It is not about luck or hot girls or big money (or wild success in all three). It is about everything we wish we never had to know.

Never Forget A Birthday

On September 17, 1997, my 68-year-old father suddenly died next to his bed. He was found kneeling, his arms crossed, his head down on the coverlet. He looked exactly like a sweet old man in prayer. It's just that he was cold, the temperature of things.

I would speak at his funeral, and pray at his interment, on my 36th birthday, September 21, 1997.

On October 4, 2000, my only sibling, Patti Ann, five years my senior, was suddenly struck with a massive heart attack 2 months after her 44th birthday. She would lie in a comatose state for several difficult days. I would speak at her funeral, and place her body in its grave next to my dad, on October 10 -- my father's birthday.

It is easy to remember these dates.

A Vegetative State

My sister's cardiologist (who is now my cardiologist) tells me that he still shows slides of my sister's heart tissue at medical conferences as examples of a heart that failed and no one knows why. It was perfectly healthy, he tells me. It just stopped.

When Patti Ann's heart stopped she was being driven by her son to a doctor's appointment for discomfort in her chest. Things went dark for her at the most remote spot between her home and the hospital. It took too long to get help; motorists stopped and worked in vain; she was defibrillated four times in the ambulance.

My arrival at the hospital was as quick as quick could be. First I had to pick up my mother -- wheelchair-bound, suffering from "Parkinsonism" and bi-polar disorder -- at her home. We then sped 17 miles to the medical center and rushed (as fast as one can pushing a wheelchair) into the emergency room. But my sister was already in Intensive Care. Doctors talked softly to us; the neurology tests showed massive brain damage; there was no sign of neural activity.

As I entered my sister's room, I noticed her best friend, Dee, holding vigil. With arms scarred from slashing herself, Dee was a bona-fide schizophrenic who was intensely loyal to my sister. Dee was talking to Patti Ann, her voice raised against the din of machines breathing for her friend, machines moving even the mattress to prevent bed sores and atrophy; to keep fluids moving. My first impulse was to run, to flee the scene as quickly as possible. But I had to remain.

And remain I did, though I would go home to sleep when Dee would watch my sister some evenings. But I cannot tell you the torment that I was under; the stress was unbearable. For I kept hearing that my sister would not want to "live like this;" she would not want to linger in a vegetative state. Doctors told me there was nothing of value coursing through her brain; there was no electricity in her circuits. Dee and my mother would say the same sorts of things, things I was not sure of myself. O, the tears, the wailing, the doubts that assailed me. I had no bearings, no sense of direction. This was all uncharted terrain for me. How I wanted a map!

Finally, after several days of abject torture; after calling my dear college friend, Mike, a neurologist at a Maine hospital, I gave the order, the hardest orders of my life. Disconnect, I said, and do not revive. I signed the papers; a nurse put a tag on my sister's chart: DNR is all it said.

And then, pure hell. You see, removing life-support systems (I did not remove the feeding tubes) initially brings improvement to a patient's status. Fluids start to flow, blood pressure improves. There is suddenly a sign of life. In the face of all this, my heart was wrecked. I was confused, even at times delirious. But I would pull myself together; I would be strong. I would pray for my sister, I would confess my sins to her; I would absolve her of her own. I would sing in the dark. And I would fend off demons.

And that is what I did.

Two Last Nights

Two nights before my sister died, I sat next to her in the silent hours and watched as a male nurse gave her a quick sponge bath. Even in the eyes of a sadist the man was clearly too rough; I stopped him gently, saying, "Sir. I would appreciate it if you would be more gentle with my sister. She has had something of a hard life." The nurse then stopped and -- I am not making this up -- said to me, "We've all had hard lives." He then proceeded to tell me his conflict with his father, how his dad did not accept his "alternative" life-style; how he had been misunderstood all his life. I was hurt, dumbfounded. But I was not so hurt or dumbfounded that I could not speak to the cardiologist and the director of human resources at the hospital about such horrific and self-centered care. I never saw the nurse again.

The next day I gathered around my sister with my mother, my wife, several friends of the family, and Dee. There I would wait for the inevitable, but it did not come. What did come was something altogether unexpected. For while sitting near Dee, I could see a strange transformation occurring, but not in my sister. Dee was suddenly getting bigger, broader, her shoulders were expanding outwards. She was tense, her breathing was awkward and irregular. And then she spoke.

Dee had left the room. In her place, George, some sort of male persona emerging from the depths of Dee's schizophrenic soul, suddenly filled the room. "He" began to speak and squirm; there was a hint of belligerence in his tone. To my right I had a dying sister; to my left I had a full-blown schizophrenic episode. Some remote part of me was tempted to laugh, but I could not. Instead, I battled against the demon swelling in my own breast, a demon of rage and incredulity. This assault from dark psychological forces outside of Dee's control was nearly too much for me as I strained to protect the sanctity of my sister's last minutes of life and this hallowed time for my family. I wanted to shriek; I wanted to pull hair. But I did neither. Instead, I asked Christ for wisdom, for guidance. Meanwhile, Dee/George left the room with someone; a scene was brewing outside. In a minute, George/Dee would return, taking up too much space; too much energy. Finally, at the moment when I sensed a lull in infernal forces, I gently placed my hands on Dee's tense shoulders, saying, "George? You are not needed right now. Who I really need right now is Dee. Could you please leave and get her for me? We all really need her right now." At that, George left the room. 30 minutes later, Dee walked in, having subdued George in some very remote place.

The next morning my sister would not be revived.

Why Tell You Today?

The point of this story is not so I can let you too far inside my heart. Nor is it to assault you with the complexities of my family. Had my dad been alive and strong at the time my sister had her heart attack, no doubt things would have been easier for me. But he wasn't, and there I was, left to fend off my own demons and bushwhack my way through unmapped lands.

My real purpose is to discuss the state of my sister's brain. You see, new reports are showing something that I've long feared: people in a vegetative state may still be fully conscious. A recent Wall Street Journal science column discusses a case reported earlier by Science magazine, about a woman who was fully vegetative but was undeniably using her brain WILLFULLY as she responded to mental exercises she was told to try by doctors. "Imagine yourself playing tennis," they said, and she would use that part of her brain associated with such activity. Following other prompts, she would switch to a different part of her brain. And in all instances these were not mere autonomic functions; these parts of the brain were used by an act of volition: she was trying and choosing!

Add to this the results found when giving Ambien -- a sleep inducing drug -- to comatose patients. When this has been tried, some patients who have been comatose for YEARS suddenly wake up and begin talking, only to fall back into a coma. What, pray tell, is the sum when all this is added together? You got it. My own sense of guilt.

You see, I am harrowed by thoughts that my sister was not really gone. I am harrowed by thoughts that I was not at my attentive best: schizophrenia, parkinson's, bi-polar disorder, a wheelchair, a crazy nurse. All these dulled me. And while I pleaded with the doctors to tell me the truth; when I asked them whether they were reluctant to revive my sister because she was without health insurance (they assured me, and I believed them, that they would and could not morally or legally do such a thing); when I searched the cosmos for guidance and found none that was clear and self-evident, I may have made a decision that was not one bit clear or even right.

My larger point is this: the battle happening all over the world in the hearts of many men and women faced with similar decisions must never be inflamed by outside stresses. These decisions must be made in sanctity and security. They must be framed in trust, they must be made with all available information. I never once saw my sister's EEG; I never demanded to know whether what I was being told was the final word. Why? Because grief and anger and confusion clouded my very soul.

And for me, a man who is pro-life to the very pith and marrow of his being, I cannot tell you how unsettled these days, these days of birth and death, make me feel.

Peace to you all, this glorious day.

©Bill Gnade 2006/Contratimes - All Rights Reserved.

The two poems, linked to above (this one, and this), have not been published before, though they have been read at public readings. ICU was also read before an audience of poets and novelists at Colgate University in 2002.