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Following Bill Moyers' series 'On Our Own Terms,' Barbara Murock tells the story of her husband's severe illness and death, and her family's transformation
Sunday, September 17, 2000
Sometimes death comes unexpectedly like a thief in the night: an accident, a sudden medical occurrence or through violence. Sometimes it comes slowly, after months and years of dementia and physical decline. Here, there is no preparation, no Kubler-Ross stages of anger, denial and acceptance by the person who dies.
But sometimes, as Bill Moyers explores in his four-part series "On Our Own Terms," which aired last week on PBS, we know when death is on the horizon. Along with sadness and loss is a gift: the opportunity for reflecting on our lives, cherishing our loved ones and dying with comfort measures of our choosing.
Moyers looks squarely in the face of death. In doing so, he captures the love and tenderness, as well as the suffering of the dying and their loved ones. Though I found the series provocative and at times hard to watch, I share a belief in his underlying message: Death affirms life.
My life was changed forever 31/2 years ago when a neurologist tapped my husband Matt's knee with a triangular rubber hammer and diagnosed the spastic jump of his legs as symptomatic of amyotrophic lateral sclerosis - Lou Gehrig Disease. I remember later thinking of the power of that little hammer, silently tolling out his death sentence, echoing across the examining room and breaking my heart.
We'd thought the fumbling in Matt's hands was carpal tunnel syndrome. Instead, we learned it was a relentless, debilitating, irreversibly fatal illness. I was devastated to think that this sweet and gentle 42-year-old man, the partner I loved and cherished would die. How could this happen? We had no warning, had never anticipated nor planned for the possibility of such a crisis in our lives. We had three young children. We were still changing diapers and were just starting to think of braces, not the end of life.
Along with the heartbreak of shattered hopes and dreams, of knowing Matt would never see his children grow up and would leave me alone, was the ominous news that before claiming his life, ALS would rob him of the ability to move his arms or legs, swallow, speak or ultimately, to breathe. Although the prognosis for ALS is 18 months to five years, it soon became clear that Matt was on the fast track with this disease. How could I ever cope with his need for care?
He had always lived intentionally, and he would face the prospect of dying the same way. Six months after his diagnosis, while he could still speak but no longer walk or move his arms, we went away to a retreat center in the mountains of West Virginia. In the solitude of this prayerful setting, he dictated letters expressing his love and hopes for each of our three children. He also made end-of-life decisions.
His decisions reflected his will to live, but not, as he put it, to merely exist. Matt decided to accept a feeding tube when he could no longer swallow, but not to be sustained by a respirator when he could no longer move, talk, swallow or breathe. He wanted to live each day fully, to die at home and to have a simple funeral. And he wanted me to find joy in living after he was gone. I would honor his wishes, but at the time this last request seemed unimaginable.
Courageous as he was in facing decisions about dying, living every day took tremendous courage. Our youngest, 21/2 when illness struck, began using a potty-chair around the same time Daddy did. Most of this child's gains in independence - eating, dressing, toileting, talking - happened at the same time his daddy lost each of those abilities. When our daughter had heart-to-heart talks with her father, Matt, no longer able to speak, held up his end of the conversation using a computer he operated by eye blink.
Our family store of memories now not only includes the birth of a child, a new tooth or the first day of school, but milestones of loss as well, such as: The Vacation When Daddy First Needed a Wheelchair. The Anniversary When I Fed Him His Dinner and helped him stand for what we knew would be Our Last Dance Ever. The picnic where we poured him a beer - down his feeding tube. The 13th birthday the Day After Daddy Died - a very harsh coming of age.
The love and support we received from our diverse circle of friends, colleagues, neighbors and parish was overflowing. People told us again and again that it was a privilege to be able to help in some way and to be part of our lives. I began to accept and not feel diminished by my need for the willing assistance that was offered. I came to feel upheld and strengthened and sustained by love. Instead of experiencing everything as loss, I made a conscious choice to embrace life and to be grateful for the blessings within the loss.
This is not to say that the role of family caregiver is easy. These were the most physically and emotionally challenging days - and nights - of my life.
Simple daily routines took hours of work each day. Even with paid caregiver assistance, and dozens of dedicated friends helping with Matt's care, cooking, cleaning and helping with children, it was exhausting. It consumed my life and tested my strength, my stamina and my faith in myself. And no matter how heroic my efforts, I was losing the battle to ALS. Matt's illness did not narrow him; it broadened him to include more and more people in his life as his need for care grew.
As time went by and he could do less, he began to show signs of deeper spirituality, of an understanding that who he was wasn't measured by our Western culture's emphasis on accomplishment. Being present to life and people was important and valued.
He received everyone in a way that left them feeling they were cared for by him. Many still tell me that being part of our lives changed them. Many of them have since experienced the illness or death of a family member and have reflected that, through Matt, they were better prepared to meet that challenge.
I still wake up some days not believing he is gone. I grieve for this man who was so embarrassingly proud of his children and wish he were here to help me guide them in life.
And I have changed. I never would have voluntarily chosen this path, but I have learned not be afraid to face pain that, along with joy, is part of love - part of life. It was a blessing to being able to accompany this person I loved so much on his final journey, however painful.
Having know such a devastating loss, I now live with an enhanced understanding of how truly precious life is, and have begun, as Matt requested, to embrace joy in living.
Barbara Murock lives in Point Breeze (barbmurock@aol.com). 