My sister gave me a book that I love, called OFFERINGS: Buddhist wisdom for every day. It has sayings, paired with spectacular photographs, for each day of the year. In it, Jack Kornfield (one of my favorite Buddhist teachers), has written,
"Ours is a society of denial that conditions us to protect ourselves from any direct difficulty and discomfort. We expend enormous energy denying our insecurity, fighting pain, death, and loss, and hiding from the basic truths of the natural world and of our own nature."
Is it any wonder that people turn away, or respond awkwardly to us, when we are in the midst of such situations of insecurity, pain, loss and dying? If we are experiencing, right in front of them, the fundamental "truths of the natural world and of our own [mortal] nature," - if we are living out their worst nightmare,- and they are conditioned to protect themselves, how can they not want to look away? Perhaps we have come to represent the pariah, the outcast, the denied one -- the shadow, who lives in each one of us. That is certainly an unwelcome reminder. It isn't personal; I could even say it's universal.
Kornfield also wrote:
"When we let go of our battles and open our heart to things as they are, then we come to rest in the present moment. This is the beginning and the end of spiritual practice."
Let me say here that it didn't feel spiritual to me, at the time, nor did it seem like "rest in the present moment," but it did seem clear to us that we had no choice but to "let go of our battles," to fully face and accept what was, in order to spare Katie additional suffering and to help her through it. I opened my heart as much as I could to let love flow in, through and out, to surround her with a feeling of safety, security and total love. We tried to ease her way, to make her passage as gentle & painless as possible. We wanted her to have the maximum of love and fun that she could in the days she had left on earth. We wanted her to be free from fear, and have her own way as much as she could.
When thinking about the events of this time last year, these Buddhist teachings seem particularly relevant.
When we had time to discuss the situation alone with Nurse S. and Dr. P. on July 20th and the days after, the options that they offered us in the way of help for Katie consisted mostly of medication to ease the pain and inflammation that were part of having tumor present in her bones and on her spinal cord. There were many other contingency medications that were prescribed and that we took home with us, but we didn't understand their purposes until later, and by grace, we didn't need them.
One option that the doctor offered to us was to take Katie to the University of Washington Medical Center (part of the Seattle Cancer Care Alliance) for radiation treatment. This would not have cured her tumor, or killed it; it would have been chiefly for the purpose of reducing bone pain. In return for this possible benefit, she would have to endure daily trips from home to Seattle, on the ferry, to a facility that she didn't like, and be subjected to radiation --and all of the preparation and side effects that come with that treatment. We felt that this was, in her case, not a compassionate choice. Katie was weak, and getting weaker each day. She was taking pain medication around the clock, which was supposed to be able to control the bone pain.
The doctors knew, by this time (and contrary to their initial impressions), that this was a very fast-growing tumor, and we decided that spending days in radiation therapy would be days spent in misery...perhaps when Katie did not have many more days to spend on earth; they knew that she was going to die, but they did not know when. Since there was no possibility of cure, we declined the radiation treatment, and we have never regretted it. Acceptance of what was happening before us "in the natural world," that someone we loved was indeed dying of a presently incurable and irreversible disease, helped us to make this decision.
We had a wonderful hospice nurse, who came to our home 2 to 3 times a week to check on Katie's condition, adjust her medications as necessary, provide nursing care (if needed), and to support us as a family. We also had a lovely social worker provided by hospice as part of their services. Our friends and family rallied around us. Meals were offered. Errands were run. Helpful visits were made, and other visits were not made, out of great love and self-restraint on the part of the "non-visitor." Most of the time, Katie did not want to see anyone other than immediate family (and fewer people than you could count on one hand). It was too hard on everyone, and Katie KNEW. She was 12, going on 17, mentally.
Thomas Merton, a 20th Century Catholic monk (and prolific writer) said, "To be grateful is to recognize the Love of God in everything."
I do not always feel grateful.
Many days, I feel shocked, hurt, angry and resentful that Katie is no longer with us, no longer here to enjoy what "should be" the rest of her life, if life were as it "should be." Yet, it is in observing the many things which merit gratitude, and happened during this awful tragedy, that I find some of the greatest comfort. It seems that, for me, looking for/recognizing/observing the Love of God is the only way to make any sense at all of what happened; the only thread, the only life-ring, the only thing holding me above the black waters of "non-sense." Because most of this doesn't make any sense at all.