By Pam Luedtke
My next door neighbor and friend Nicole (not her real name) is afflicted with ALS. If you know anything about ALS (Lou Gehrig’s disease), you’ll know that there is really no hope of recovery with it. Its progression can be gradual or rapid, but either way it leads to a complete loss of muscle function throughout the body, resulting in death. The mind and the nervous system remain intact however, so the person continues to think and feel.
When my friend was first diagnosed, I felt very sad. It was not only that her life would be cut short, and that I would be losing a friend, but mostly I was sad because I sensed the kind of suffering that lay in store for her. Why would anyone have to experience something like this?
My friend and her family faced it bravely enough at first, or tried to. They kept a positive outlook, expected the disease to plateau, and did some traveling with Nicole in a wheelchair. There was also a daughter’s wedding to plan for, and to live for. But the disease progressed rapidly, and within a year, Nicole was almost fully incapacitated and beginning to fail. Her initial courage and optimism gave way to the hard realities of the disease.
One day about four months ago, she was rushed to the hospital with breathing problems. In the ICU, her heart stopped three times. And three times she was resuscitated. It was a traumatic ordeal for her and her family. She survived it, but she could no longer breathe on her own. A decision had to be made. Would she opt for life on artificial support or surrender to nature taking its course?
During this time, I had the sense that my friend was leaving us. I felt the onset of the grief process, with its feelings of loss and sadness. I purchased a sympathy card for the family and thought about what I would say. I felt the sadness, but I also felt a sense of relief, and even gratitude, that my friend was going to be making her exit then, without further suffering or distress.
But this was not how it went. Nicole made the choice for the breathing device; a positive pressure ventilator, which forces air into the lungs through a tube in the throat. With the ventilator, she cannot speak, eat, or drink, but she can breathe, and stay alive awhile longer. And Nicole had decided that she was not ready to die.
Nicole spent the next several months in the hospital, and was just recently moved back home. She lies in a hospital bed in her living room, still hooked up to a ventilator, and a feeding tube, and various other devices and monitors. She is unable to move her body from the neck down, and she is still unable to speak, eat or drink. She receives medication every couple hours to relieve her pain and anxiety. She requires round-the-clock care. Finding the money to pay for this has become an issue for her family and they have initiated a fundraiser.
It has become very difficult for me to see my friend like this. Visiting is hard because communication is so limited. At times, I look out my kitchen window and see her house and sense her suffering right next door. It is heart-wrenching and disturbing. This doesn’t seem to be any way to live. The price being paid seems too great. Nicole has it within her power to make a different choice at any time, so why keep going like this? But maybe that’s just my own discomfort talking. Clearly my friend and her family see it a different way.
Last weekend, I went to see the new Robert Redford movie “All Is Lost”. It is the story of a man cast adrift at sea in a life raft after his boat sinks. It is the story of his grueling fight to survive; to battle through one challenge after the next to stay alive, to keep going, to keep fighting. At one point in the movie, I asked myself. . . why is he doing this? Why doesn’t he give up the fight? Why doesn’t he turn his attention to reconciliation and acceptance, and help himself find the fastest path to surrender?
Like Robert Redford’s character, Nicole wants so badly to be able to go on. This disease came at her from “out of nowhere”, as did Redford’s boating disaster. One day her life was viable, the next day it was not. How does one accept what seems unacceptable? How do we tell ourselves that it’s okay to let go, it’s okay to accept the life “unfinished”? When is enough, enough?
Each one of us, of course, has to make that decision for ourselves. I love my friend, and I honor and respect her choice to live on, and discover what there is to be found with that choice. This is not an easy road for her or her family. I appreciate their resolve, their determination, and their effort. They may very well be finding something in the journey that is not apparent to me.
But within myself, I have grappled with what they have chosen. Ever since Nicole went on the ventilator, it has not been the same for me. I want to offer my help and support, but a part of me wants to pull away. I care about them very much, perhaps more than I realized. I just don’t want to see Nicole or her family suffer any longer. I have felt that if I found myself in the same situation, I would surely have made a different choice. How do I get okay with theirs?
It looks like I have a choice to make as well. Do I continue to wrestle with my thoughts and feelings about what is going on next door? Or do I choose to accept it, as it is, and let it be? It is not up to me to figure out how Nicole and her family can best come to terms with their situation. It is up to me to figure out how I can do so. And to learn what I can from my own process.
For whatever time Nicole has left, I choose to hold her and her family in an attitude of acceptance, appreciation, and caring. Beyond that, there is really nothing else I need do.