From My Perspective – Living Death

Over the last few weeks, American news media has been intensely preoccupied with the case of Terri Schiavo, a topic that has touched many and prompted vigorous and acrimonious debate. Her life and death struggle has sparked important dialogue in many homes, including my own. I cannot begin to imagine how difficult her life has been over the past 15 years. If, as some believe, she was aware and conscious of what was going on around her, that makes it even worse. I cannot begin to think of myself or a loved one, existing, helpless, at the mercy of those around me, unable to express my desires, unable to say what I’m feeling or what I need.

I was once in a situation many years ago that I can use as a comparison. I had been very ill, in a crisis state, and when I woke up in the hospital recovery room, I was alone, except for a nurse. I was hooked up to a respirator, which left me unable to speak. The room was excruciatingly warm (or at least, I was), and I desperately wanted to communicate that to the nurse who was monitoring me because I thought I was going to suffocate from the heat. Although I was attached to various tubes on both sides, I managed to move my arms enough to flip off the blanket covering me, hoping to get some relief and let in some cool air onto my overheated body. The moment I moved the blanket off me, the nurse immediately replaced it, tucking it in firmly at all sides. I desperately struggled, trying to communicate to her with my eyes and finger movements that I was hot and could not tolerate the blanket. With as much movement as I could muster in my fingers, I again tried to flip the blanket off, only succeeding in moving it a few inches. Again the nurse tucked the blanket in. This struggle had made me even more uncomfortable and hot, and again I fought to move it off. The nurse became quite irritated and reprimanded me, telling me that the blanket needed to stay put. She pulled it up even more firmly around my shoulders. After several more feeble attempts, I finally gave up. I lay there in helpless silence, tears rolling down my face, mutely accepting the fact that I was not going to be able to communicate my needs to that nurse, knowing that I would have to remain subject to her whims. I felt like I was going to suffocate, but I was powerless to change the situation. The feeling of having total consciousness, yet being forced to lay there without any control over what was happening to me, was indescribably horrible.

If Terri Schiavo was able to experience these emotions, I can’t help but feel that it was unbelievably cruel to keep her alive in that helpless state. To be at the mercy of those around me… to not be able to communicate even my simplest needs… I could barely tolerate it for those few hours until the breathing tube was finally removed — but for 15 years?

On the other hand, if Terri was in a “persistent vegetative state,” as her doctors ruled, then I’m not sure what to think. What is there to be gained by sustaining existence for an individual in this condition? In many ways it seems selfish, clinging to an unreasonable hope. As a parent, I ache for Terri’s parents, who kept hanging on to any shred of hope that Terri might come back to them. I wonder if I would feel the same, were it one of my beloved daughters. Yet, as a parent, do I have the right to force my child to keep breathing, enduring a life of complete helplessness? Do I have the right to inflict my own needs on her and force her to stay alive? Do I have the right to make a life or death decision for someone I love?

Adding to the complexity of this drama, countless individuals and organizations have used Terri’s suffering to advance their own political or social agenda. It seems to me that the only person really thinking for Terri was her husband, who made the decision on her behalf to end the torture.

Watching this drama play out on national television has motivated me (like many others) to write my own living will; to define in detail what I want done if I ever should find myself in a similar situation where I’m unable to make the decision for myself. It’s not a conversation most of us want to have with our loved ones, but a necessary one.

Quality of life is at the heart of the debate, and it has nothing to do with living with disabilities, as some would have you believe. I have many good friends who suffer disabilities of different degrees of severity. I would never presume to judge what they consider quality of life, nor would I ever presume to suggest that an individual has no quality of life simply because they are disabled. But my own experience has led me to conclude that quality of life takes priority over remaining alive simply for the sake of life itself. What is of utmost importance is individual free will, and I believe each individual should have the right to decide their own destiny and write their own quality of life definition. If, as Terri’s husband alleges, it was her decision not to be kept alive by artificial means, this should have been the deciding factor (as the courts ultimately ruled).

When I was a teenager, my grandfather had a stroke at age 70. When the stroke had hit him, he had fallen to the floor, weak and paralyzed, yet still able to speak. He told my grandmother that he could not move, but she didn’t believe him initially. By the time the ambulance finally arrived at the farm to transport him to hospital, he was almost completely helpless, unable to speak, move or respond.

I remember all of the family rushing to the hospital, as he lay in a coma. We didn’t know what to expect, and thought he might die. I stood by his side, stunned, watching the nurses administer to him when suddenly he began to cry out for my grandmother. I realized that, even though he was paralyzed on the outside, he was very much aware on the inside.

In the years that followed, my grandfather continued to “exist”, even though everything else changed around him. My grandmother died, the farm was sold, nothing of his former life was left. His body was paralyzed and movement limited, but for the first few years he retained his mental agility. He knew who we all were, understood his surroundings, and was able to be part of the community in a limited way. But he soon lost this as his physical body slowly deteriorated. I would go to visit him, and he had no clue who I was, nor was he able to even hold a meaningful conversation. It made me so sad to watch him decline, and I vowed to never live that way myself if it was under my control.

My aunt became the primary caregiver for my grandfather at the auxiliary hospital that became his home. She related to me how he would sometimes scream out in pain and frustration, asking God why he was being forced to stay alive in this helpless condition. He would beg her to let him die, to please not make him stay alive. But euthanasia was not an option, and my grandfather was forced to continue to exist until his physical body finally gave up 12 years later. For me, my grandfather died the day he had the stroke. In that helpless shell of a body, he was no longer the same grandfather I knew and loved.

Writing a will is a difficult enough procedure–no one wants to think about dying. Writing a living will is even more difficult because no one wants to even imagine what life might be like living in an uncertain physical condition, or with a severe disability. Many people with disabilities manage to have a very high quality of life. Many do not. What it should come down to is personal choice. No one should be able to decide for me whether I’m obligated to stay alive, regardless of the quality of that life. I do not want to remain alive, helpless, desperately trying to communicate my simplest needs to those around me, yet unable to do so. Nor would I wish this on anyone I love.

There are many other debates that surround this very sad story. First and foremost is the topic of euthanasia, along with compassionate care for terminally ill, definitions of disabilities and brain death, and the ethics of withholding treatment. The latter includes food and water, and many argue (quite rightly) that euthanasia would have been a more compassionate route than starvation in Terri’s case. Unfortunately, our society has not yet managed to resolve these ethical and moral dilemmas, so families will continue to face the same heartbreaking choices Terri’s family did.

The legacy Terri Schiavo has left behind is that many people, including myself, will have this necessary dialogue with their families — making a decision regarding their future. What is most important is the right each of us have for self-determination, the right we each have to control our own destiny, the right to decide for ourselves what direction we wish to go, whether it be life or death.

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