Over the past several years following my diagnosis with an incurable and degenerative disease, realizing that I will not live forever and probably die sooner than I would have imagined, I offer the following thoughts and experiences.
Death Is for the Living.
Although in one sense death is the "great divide", in another sense it is also part of being alive. To avoid thinking about our death is to avoid experiencing life to the fullest. What most of us fear, I think is not so much death itself but the pain and suffering, physical, emotional and spiritual which comes before it. All of us, I suppose, in one way hope that we will die suddenly and painlessly. On the other hand we also worry that if death comes this way we would have no chance to say our goodbyes, make amends, or otherwise get our affairs in order so we can continue to control things from the grave.
I imagine that my death, by the time I am actually there, will be a welcome and peaceful release. Although at this moment I am very much alive and glad of it, thoughts of my death are both comforting and daunting. I especially don't like the thought of leaving everyone and everything I love "behind". But, if my idea of time and eternity turns out to be correct, I will not be losing anything. From the perspective of the other side of the divide, we will all "arrive" in eternity and the full experience of God's presence simultaneously.
Keeping death "daily before our eyes".
St. Benedict recommended for his monks to make meditation on their death a daily occurrence. I must have retained this beautiful thought from the time of my religious conversion in early adulthood and few years of monastic life. I have always thought about how and when my death would come and how I would handle it if I had any sign that it was imminent. Having done this, on and off, throughout my life, i.e. mentally preparing myself for the "big one", has enabled me to cope with my own present physical decline. It was a surprise, but not for long, as I reminded myself that difficult things do not happen only to me. They are universal experiences to which I and everyone else are subjected.
I am not recommending a morbid obsession with all the bad things that could happen. I am suggesting a realistic appraisal of how life goes, while at the same time appreciating the gifts available in every moment. Part of the process of preparing for one's own death is a mental task. Another part is the willingness to experience whatever comes along without dreading it ahead of time. This is a spiritual skill which comes with time, desire, intention and prayer. Be careful what you pray for. It won't always be fun but it will always carry with it an opportunity to keep growing up, i.e. to be realistic and idealistic at the same time.
One way to follow this wisdom is to think of dying as many deaths, beginning with birth. Birth is a kind of death, to the perfect security of our mother's womb. It begins a whole life of "dying" to the illusions about the security and predictability of life. It continues every time we are faced with the opportunity to let go of the old and welcome the new. When we resist this process we preserve the illusion that our life here and now is permanent. When we welcome these changes, painful as they often are, we take another step in the direction of the final death, the entrance into the ultimate reality of eternity. A close friend of mine with a debilitating and incurable cancer wrote to me about this recently, "Still, I would go in a heartbeat w/out fear, not hating earth, but loving heaven more."
No matter how much we try to keep this fact in mind, we seem to be surprised every time another event challenges it. The Buddha was supposed to have recommended to a woman in an inconsolable grief that she go around the village collecting three mustard seeds from every house in which there had been no deaths. She came back empty-handed and grateful for the experience. She had discovered that she was not alone, that loss and death are universal experiences.
Death, Alone and Together
In one sense we must all face our own death alone. No one can do it for us. This may be one of the most frightening aspects of thinking about and experiencing our death. On the other hand, we also know that no one ever really does anything alone or isolated from the human community. Living and dying are corporate experiences. The way each of us face our own death with courage, calm and acceptance profoundly affects how the rest of us will be able to do it also.
The best "preparation" for death is a life lived with and for the body of Christ, within the oneness of all creation. This is not something that we can begin only when we think we are getting closer to death, when we are aging or seriously ill, or otherwise exposed to danger. If we wait until then, chances are it will be too late although in another sense it is never too late to get with the program.
Welcoming Life and Death
In light of the death of Pope John Paul II this week and recent discussions about moral and ethical decisions regarding life support, I offer the following comments based on my personal experience with a degenerative and untreatable disease.
The situation for most people with ALS is unique in that we retain full cognitive and sensory abilities, but lose the ability to communicate what we are thinking, feeling and needing as well as the ability to swallow and breathe on our own. There rarely is any "persistent vegetative state" unless something else occurs (heart attack, stroke, etc.). We know this ahead of time and are free to decide whether and how we wish to be kept alive. This includes decisions about whether to make use of other means of breathing (mechanical ventilation) and getting adequate nutrition and hydration (abdominal feeding tube).
Several months ago I chose to have a feeding tube surgically inserted, anticipating the time when I will not be able to swallow. I also use a breathing assist machine (BiPAP) at night to avoid respiratory failure during sleep and facilitate a good nights sleep. Both of these feel like friendly devices which make life more comfortable and livable.
Many people with ALS decide to do neither and simply allow themselves to die in the normal course of the disease when further treatment would be useless. This does not seem to be any different than someone with a terminal cancer, diabetes or chronic heart disease. I respect the right and moral choice of a person with a terminal disease to refuse further unnecessary treatment and to die as pain-free as possible.
We have always made a moral and ethical distinction between taking a life (as in assisted suicide) and allowing someone to die in the normal process of living. I believe that this position is quite clearly "pro-life". To affirm life is to welcome death as the entrance to new life.
Loris Buccola
February 2005
Revised April 2005
Death Is for the Living.
Although in one sense death is the "great divide", in another sense it is also part of being alive. To avoid thinking about our death is to avoid experiencing life to the fullest. What most of us fear, I think is not so much death itself but the pain and suffering, physical, emotional and spiritual which comes before it. All of us, I suppose, in one way hope that we will die suddenly and painlessly. On the other hand we also worry that if death comes this way we would have no chance to say our goodbyes, make amends, or otherwise get our affairs in order so we can continue to control things from the grave.
I imagine that my death, by the time I am actually there, will be a welcome and peaceful release. Although at this moment I am very much alive and glad of it, thoughts of my death are both comforting and daunting. I especially don't like the thought of leaving everyone and everything I love "behind". But, if my idea of time and eternity turns out to be correct, I will not be losing anything. From the perspective of the other side of the divide, we will all "arrive" in eternity and the full experience of God's presence simultaneously.
Keeping death "daily before our eyes".
St. Benedict recommended for his monks to make meditation on their death a daily occurrence. I must have retained this beautiful thought from the time of my religious conversion in early adulthood and few years of monastic life. I have always thought about how and when my death would come and how I would handle it if I had any sign that it was imminent. Having done this, on and off, throughout my life, i.e. mentally preparing myself for the "big one", has enabled me to cope with my own present physical decline. It was a surprise, but not for long, as I reminded myself that difficult things do not happen only to me. They are universal experiences to which I and everyone else are subjected.
I am not recommending a morbid obsession with all the bad things that could happen. I am suggesting a realistic appraisal of how life goes, while at the same time appreciating the gifts available in every moment. Part of the process of preparing for one's own death is a mental task. Another part is the willingness to experience whatever comes along without dreading it ahead of time. This is a spiritual skill which comes with time, desire, intention and prayer. Be careful what you pray for. It won't always be fun but it will always carry with it an opportunity to keep growing up, i.e. to be realistic and idealistic at the same time.
One way to follow this wisdom is to think of dying as many deaths, beginning with birth. Birth is a kind of death, to the perfect security of our mother's womb. It begins a whole life of "dying" to the illusions about the security and predictability of life. It continues every time we are faced with the opportunity to let go of the old and welcome the new. When we resist this process we preserve the illusion that our life here and now is permanent. When we welcome these changes, painful as they often are, we take another step in the direction of the final death, the entrance into the ultimate reality of eternity. A close friend of mine with a debilitating and incurable cancer wrote to me about this recently, "Still, I would go in a heartbeat w/out fear, not hating earth, but loving heaven more."
No matter how much we try to keep this fact in mind, we seem to be surprised every time another event challenges it. The Buddha was supposed to have recommended to a woman in an inconsolable grief that she go around the village collecting three mustard seeds from every house in which there had been no deaths. She came back empty-handed and grateful for the experience. She had discovered that she was not alone, that loss and death are universal experiences.
Death, Alone and Together
In one sense we must all face our own death alone. No one can do it for us. This may be one of the most frightening aspects of thinking about and experiencing our death. On the other hand, we also know that no one ever really does anything alone or isolated from the human community. Living and dying are corporate experiences. The way each of us face our own death with courage, calm and acceptance profoundly affects how the rest of us will be able to do it also.
The best "preparation" for death is a life lived with and for the body of Christ, within the oneness of all creation. This is not something that we can begin only when we think we are getting closer to death, when we are aging or seriously ill, or otherwise exposed to danger. If we wait until then, chances are it will be too late although in another sense it is never too late to get with the program.
Welcoming Life and Death
In light of the death of Pope John Paul II this week and recent discussions about moral and ethical decisions regarding life support, I offer the following comments based on my personal experience with a degenerative and untreatable disease.
The situation for most people with ALS is unique in that we retain full cognitive and sensory abilities, but lose the ability to communicate what we are thinking, feeling and needing as well as the ability to swallow and breathe on our own. There rarely is any "persistent vegetative state" unless something else occurs (heart attack, stroke, etc.). We know this ahead of time and are free to decide whether and how we wish to be kept alive. This includes decisions about whether to make use of other means of breathing (mechanical ventilation) and getting adequate nutrition and hydration (abdominal feeding tube).
Several months ago I chose to have a feeding tube surgically inserted, anticipating the time when I will not be able to swallow. I also use a breathing assist machine (BiPAP) at night to avoid respiratory failure during sleep and facilitate a good nights sleep. Both of these feel like friendly devices which make life more comfortable and livable.
Many people with ALS decide to do neither and simply allow themselves to die in the normal course of the disease when further treatment would be useless. This does not seem to be any different than someone with a terminal cancer, diabetes or chronic heart disease. I respect the right and moral choice of a person with a terminal disease to refuse further unnecessary treatment and to die as pain-free as possible.
We have always made a moral and ethical distinction between taking a life (as in assisted suicide) and allowing someone to die in the normal process of living. I believe that this position is quite clearly "pro-life". To affirm life is to welcome death as the entrance to new life.
Loris Buccola
February 2005
Revised April 2005
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