Oh yes, I’ve known troubles.
There have been times, I didn’t want to go on.
Hope abandoned me by the side of the road.
Faith wouldn’t answer my pleading.
Love gave me my walking papers.
The pain was so intense it drove me to the ground.
Aimless, empty, and alone I reached up for help.
Meaninglessness overshadowed me and cut me off.
But I knew, you were still there.
I couldn’t hear you, or see you, or touch you.
But I knew, you were still there.
I hung in there.
I believed the picture I was seeing was incomplete.
I trusted this too shall pass.
Some here today just might be feeling this way.
Feeling hopeless, helpless and out of control,
Washed down the river of life.
Let them know peace.
Let them know love abides with them.
Let them know troubles don’t last forever.
How many of you have seen the movie, “Million Dollar Baby?” I wasn’t planning to see it as I dislike boxing. Mary Baxter alerted me to its relevance to my topic this morning so Philomena and I went to see it a couple of weeks ago. Without giving away some surprise twists, one character suffers a spinal injury and becomes a quadriplegic. The controversial part of the movie deals with the portrayal of that character, lying in bed hooked up to a ventilator, in a state of helplessness and hopelessness.
The disability rights community strongly objects to this portrayal of someone who has just become disabled. The character gets no counseling that we observe. Little emotional support is offered. Inadequate care leads the character to develop bedsores. While the character’s helplessness and hopelessness works effectively to support the plot, the movie reinforces disability stereotypes.
What stereotype? It is better to die than be profoundly disabled.
The purpose of my remarks this morning is to challenge that perspective. I firmly believe people should be able to determine the course of their lives and choose death if they believe their quality of life is unacceptable. AND I also firmly believe in encouraging people, even in the end stages of their lives, to choose life. I believe continuing to live should be a choice AND I strongly encourage everyone to choose it. I don’t believe I can pass judgment on another person’s situation because I cannot be inside their skin. But from everything I’ve learned and experienced studying the death and dying process from the outside, there is tremendous benefit to oneself and others by choosing to continue living until one’s last breath is released.
The counterpoint to the hopelessness of being a quadriplegic portrayed in the movie was Christopher Reeve. His C2 spinal cord injury was the result of a freak accident. The horse he was riding came to a dead stop right in front of a jump. His hands were tangled in the reins so he couldn’t break his fall and landed on his head. He was fortunate to survive the surgery that took bone from his hip to reconstruct his neck and stabilize the injury. His paralysis shocked the world. How could this have happened to Superman!
Profound spinal cord injury could happen to any of us from a fall or a traffic accident. Different from a genetically transmitted disease, we are all at risk of physical injury if we get out of bed in the morning. Any of us could fall down a flight of stairs and find ourselves paralyzed for life. So this is why I find Reeve such an engaging study of facing profound disability … and choosing to live.
When he woke up in the hospital, living well with disability was the furthest desire from his mind. He writes in his book, Nothing is Impossible: Reflections on a New Life,
The moment I understood the gravity of my situation my immediate reaction was that such a life was unacceptable, even though I knew absolutely nothing about living as a vent-dependent quadriplegic…My role as a husband and the father of three children would be severely compromised, because paralysis had suddenly transformed me into a forty-two-year-old infant. I thought it would be selfish and unfair to remain alive.
I imagine many of us would react this way. When presented with this kind of loss, grief seizes the mind and will not let go. Reeve wrote candidly about his anger at the limitations he faced. Only seeing his wife and children broke his desire to escape his body. He later expressed indescribable gratitude remembering his wife kneeling at his bedside saying, “You’re still you, and I love you.” He credits her love, the love offered by family, friends and complete strangers from around the world with saving him from the desire to end it all.
Choice entered into his decision to live. His wife, Dana, offered him this shrewd deal. If he wanted to die after two years, she would support him in choosing that path. But until he had fully explored his new state and the possibilities for his new life, she encouraged him to do everything in his power to live as well as he could. That included extensive physical therapy to regain the ability to move his head and a few muscles in his shoulders. That included using electrical stimulation to work his muscles so he wouldn’t lose muscle mass. That included weight bearing exercises to prevent bone loss. During that two-year period of adjustment, Reeve discovered a new, very meaningful life worth living dedicated to seeking recovery for people with spinal cord injuries.
Reeve’s story is a good one to carry around in our minds to challenge our stereotypes about disability. And he is no freak. The disability rights organization, Not Dead Yet, quotes these hopeful statistics from peer reviewed journals:
<![if !supportLists]>· <![endif]>86% of spinal cord injured high-level quadriplegics rated their quality of life as average or better than average. Only 17% of their ER doctors, nurses, and technicians thought they would have an average or better quality of life if they [became] quadriplegic.
<![if !supportLists]>· <![endif]>The duration of disability was positively related with acceptance of disability in persons with spinal cord injury-related paralysis. Severity of disability was of no importance in accepting life with a disability.
<![if !supportLists]>· <![endif]>In a study of life satisfaction of quadriplegics, fewer than a third of those who used ventilators expressed dissatisfaction with their lives. There is evidence that life satisfaction scores are higher in persons who have had more time to adjust to disability.
<![if !supportLists]>· <![endif]>Three-quarters of persons with spinal cord injuries rated their quality of life as good or excellent. Amount of paralysis made no difference, but people who used ventilators rated their quality of life higher than those not needing ventilators.
Disability, in reality, is like any profound change in our lives. The death of a loved one, the loss of a job, a marriage or becoming a parent – they all require numerous adjustments that challenge our attachments and aversions. I couldn’t imagine having to change a baby’s diaper multiple times a day and be responsible for its every need 24/7 before Andy arrived. I didn’t think I could be happy living through a Rochester winter or a Florida summer. How could I be happy if I had to eliminate from my diet many foods that gave me pleasure? In reality adjusting to disability follows the same grieving process of any big life change. And if you stick with and work through the emotions of that grieving process, the outcome can be acceptance, peace and a high quality of life.
Let’s go a little deeper now. What about the more extreme cases. I’m thinking of the case in Florida of Terri-Schindler Schiavo. She collapsed for an unknown reason in 1992 and suffered severe brain damage that has left her in a permanent vegetative state. What complicates the situation is her capabilities for movement. She can open and move her eyes, move her fingers a little and does appear to smile. So far, she cannot communicate anything consistently with any of her ranges of motion. She cannot consistently smile, move a finger or track an object with her eyes. Brain scans show very limited brain activity that doesn’t respond consciously to stimulation.
The question that has caused so much controversy in this case is whether she would have wanted to be supported in this state with a feeding tube and whether she has or is capable of developing any higher level consciousness than reflexive response. The husband feels her spoken (but not written) desire to die if she were to end up in a state like this should be honored and the feeding tube removed. Terri’s parents feel just the opposite. Even at this compromised quality of life, she would wish to continue to live with the hope that she may recover some ability to communicate. The conflict between them put the case in court. The court, after carefully reviewing videotapes of Terri and hearing from five doctors, two from each side and one impartial court appointed doctor, (I’ve read the decisions) has decided the right thing to do is to remove her feeding tube and allow her to die.
This case has riveted the attention of the right to die, pro-life and the disability communities. All three have powerful arguments to make in this case. I would find this a torturous decision to make as a judge but I would have decided differently in this case and I underline in this case. Here’s why.
Ray Blanchard arranged a meeting for me last week with the executive director of Community Hospice, Phillip De Sorbo. We had an illuminating discussion about what quality of life can include when facing death. From his experience, he described people who initially desired the refusal of any artificial support later changing their minds and wanting that support. He also described people who wanted everything that could be done to keep them alive changing their minds and allowing nature to take its course. He emphasized the difficulty of accurately predicting in advance what people would want at any step along the way. If Christopher Reeve had made out a living will, he would have prohibited his doctors from saving his life. Yet he was able to have very good quality of life that he cherished up until he died.
What makes these cases so difficult is uncertainty. There are many cases of people given up for lost who come back and recover. One story I found was of a Unitarian Universalist in Florida named Russ Cooper-Dowda. Russ describes her situation as follows:
… I was considered allegedly as good as dead. But I had a single nurse who believed I was still "in there" and able to communicate. With my inked finger and her paper on a clipboard, we proved I indeed had opinions about whether I should live or die.
There was controversy as to whether my recognizable writing was communication or seizure activity until the BIG meeting. The doctors and my husband, who were spending an ever-lessening amount of time with me, granted that gathering as a courtesy to my mother and the nurses who felt I did not deserve to be written off.
At the end of the meeting my then-husband held up a message board to prove I couldn't use it. When asked to communicate something, I laboriously said to my spouse who was not allowing the most basic of care, "D-I-V-O-R-C-E Y-O-U." The doctors all laughed and attributed my phrase to more seizure activity.
Then my mother took the board and asked me to repeat what I had just said. I did so with, "D-I-V-O-R-C-E H-I-M."
There was never a question after that as to whether I could think or respond to my environment. The divorce allowed rehabilitative care, which brought me to being able to write the sentence that ends right now at this period.
Christopher Reeve after five years suddenly discovered he could move parts of his body that were considered medically impossible. His recovery of very limited movement and sensation in his body changed all the prevailing ideas about what recovery is possible for those with spinal injury. We are at an exciting time in the discovery of new therapies to assist paraplegics to walk again. It may be that some discoveries in the next ten years may allow Terri to also improve her quality of life.
And I still believe people should, as much as possible, be allowed self-determination. I close with two examples from my ministry in Florida. In the first month of my ministry in Port Charlotte I got a call from Mary. Her husband had a degenerative disease and did not want to become dependent on anyone. At the point he started to loose control of his hands, late at night he went to his garage, put a gun in his mouth and pulled the trigger. When the sound of the gunshot awoke her, she knew what had happened.
It is my belief that if he had had the option of terminating his life at his discretion, he might have chosen to live and see if he could adjust and find meaning in the dying process. This has been the experience of doctors in Oregon. Many more ask for a lethal prescription than actually fill it.
I pair that story with the experience of another member of that congregation I loved very much. A heart medication he was taking destroyed his kidneys forcing him to go on dialysis three times a week. Dialysis keeps people alive but doesn’t work as well as our kidneys do and can cause complications. After several years of this therapy, and after living a long, good and happy life, Henry decided he’d had enough. His quality of life had become unacceptable. He stopped dialysis and died a week later. I honor and respect his choice to control the time of his death.
My challenge for you this morning is to recognize that good quality of life can be independent, for the most part, of ability or disability. The guidance I offer is to follow your heart and resist being controlled by your fear. Look for and follow the decisions that bring more love into the world. Each one of us can be a gift of love to the world no matter what our ability or disability. Even Terri in her compromised state can bring love into the world too.
This is the spiritual task of
This is the spiritual task of dying well.
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In reality we are all disabled in relation to each other.
I can’t run a marathon, walk a tightrope, or climb a rock-face.
Yet I can show gratitude and kindness
I can offer encouragement and a smile.
Sources of meaningful engagement with life are limitless.
We are much greater than our imaginations.
We have greater potential than our pasts.
Our future is never absolutely determined by the present.
Trust the Spirit of Life to open the way
When the next breath seems impossible.
Copyright © 2005 by Rev. Samuel A. Trumbore. All rights reserved.