Accepting Death while Embracing Life

Accepting Death While Embracing Life
By Elizabeth Vega

Hope is a fluid strength. It is capable of bending around obstacles and smoothing off the rock edges of extremes. In black and white arguments, hope is every other shade -- it is the colors within the complexity. So why then in the Terri Schiavo case are we choosing to focus our eyes on the black and white? Because it is simpler to stand on the edges, than walk and feel the power of dimension and breadth. It is easier for our politicians to argue for a single individual than for them, to implement compassionate thoughtful policy that will impact the population. It is easier to see an issue through the narrow lens of a single family instead of taking the time to understand how our community collectively approaches suffering, death and life.My abuelita used to say La Vida is joy and sorrow poured together into a single cup. Sometimes we can pick out the differences, but it can be an endless waste of time trying to discern where one begins and the other ends. For this reason it is best to let all La Vida has to offer simply wash over us. We can not individually or collectively choose to bypass our sorrow by beating death. We will never ever completely understand death, trying to exercise our power by clinging to the notion that we as a society can somehow define life and moreover define “quality of life” will not change this. There are no easy solutions. We as human beings are constructed of bones and muscles as well as minds and spirits. Medical science does not hold all the answers, and neither does religion, in the wake of the unknown our best navigation is often our hearts.
I know this from my own experience walking the tightrope between science and spirituality. In the days before my daughter’s birth an abnormal ultrasound flipped my world upside down. I scrambled to pick up pieces. For days, I listened to the parade of doctors who walked through my door. Each was armed with a case study. They would stand by my bed, clear their throat and say, “We saw a case just like this.” They then presented an ambiguous offering of information that usually brushed against the grain of the physician who had come before. One would say, “We put a shunt in and they were fine.” The other “case study” had “zero quality of life.” These physicians gave me lots of options, but while they spoke with authority they offered few certainties. I don’t blame them for not providing answers I just wish they had been more honest about the fact that there were some things they simply didn’t know.
In the fray of voices shouting about Terri Schiavo, I choose to hear the hushed tones of an operating room broken by my daughters cry-- a cry that came a full 20 minutes after she was pulled from my body. Confident that souls are endlessly wise we trusted our daughter to choose for herself. We had asked that she not be resuscitated. Our medical staff honored our wishes. I know it was difficult for them to step back. Then a miracle, Gabrielle went from blue and lifeless to literally coming to life in her father’s arms. She was content and sucking a bottle an hour later. More doctors with more bad news came 24 hours later. Gabrielle was born with a fast growing brain tumor. The part of her brain not destroyed by the tumor had been crushed by fluid. She technically had less than ¼ of her brain. According to doctors, she would have a non-stop reflex called a neurological cry. She would be in a vegetative state. Nevertheless options were offered. Surgery could be performed although it offered only a 5 percent chance of survival. Chemotherapy would mean there would be a 99 percent chance she would be completely brain dead. I found myself wondering just how I should play the numbers. It was like playing god with a blindfold on. I chose neither option. Instead, I put medical science aside for a moment. When in the dark your heart is a reliable compass.
The heart sees things the mind doesn’t. When I see the pictures of Terri Schiavo, staring into her mother’s eyes I am immediately taken back to the intensity of my daughters gaze. Only two days old Gabrielle would study my face. Our eyes would lock and something small and quiet was exchanged. Gabrielle had perfect hands. Her tiny feet were miniatures of my grandmother’s with the second toe stretching out past all the others. It was a sign of intelligence and continuity -- my grandmother had died just nine months before. Gabrielle clearly wasn’t perfect. Her head as my sons so astutely pointed out made her look like the cartoon character “The Brain.” I laughed at their honesty. Truthfully I never really noticed after the first time I held her. Gabrielle spent her life doing a lot of things she shouldn’t. She did not have a neurological cry instead she spent her waking hours quiet and alert, checking out the world. On her brothers’ suggestion, she tasted cotton candy. Only seven and five they were aware of the medicinal power of sugar. Gabrielle heard lullabies and poetry, smelled flowers and saw colors. Instead of waiting for death we chose to show her all life offered by bringing her magnolia blossoms. My daughter with only ¼ of her brain responded in kind. She used every ounce of spirit within her to reach up and touch my face. You see there is no accounting for the will of a soul and the affects of love can’t be categorized scientifically.
Like Terri Schivo parents I also had to fight. I fought Gabrielle’s doctors -- the very ones who told me she couldn’t be doing any of the things I saw her do. The ones that thought they were being kind by inserting reality in my hopes. The ones who passed off everything she did as reflex. I fought these same doctors so I could take my daughter home so she could die. It was a frustrating dichotomy. They urged me to let her stay in the hospital and argued that by pulling out her shunt she would die in days instead of months. I asked them pointedly just how she would die. They told me the shunt would cause an infection the fever would come next. She would become septic. I was persistent. What if we pulled out the shunt and let her die naturally at home? The tumor would cause pressure, the pressure would cause a stroke and she would drift off to sleep. Fate had put me in the wrenching position of choosing the best death for my child. I chose grace, gentleness, dignity and love. This decision meant I battled the doctors – the same ones who wouldn’t allow me the indulgences of hope -- just so I could bring Gabrielle home. I asked for hospice. My doctors cringed uncomfortably and offered me visiting nurses instead. I loudly demanded hospice. I knew intuitively that they were better equipped to offer support in dying - not just physical but spiritual and mental support as well. I argued for two days with my physicians. They were finally persuaded by this simple truth. If I as Gabrielle’s mother could accept that my daughter was dying then so could they. What the medical staff didn’t understand is that I could accept death while simultaneously embracing life-- one with quality and meaning. Only 25, I knew then that hope and reality are not mutually exclusive.Hope is what sustained me while I made numerous difficult choices for my daughter. I didn’t doubt for a single minute that she was going to die but my heart as well as my daughter’s response affirmed that life in the midst of dying is its own miracle.
As human beings we are naturally equipped to face death, but the joy of this is that we can live and celebrate right until the end. We can navigate sorrow and come out on the other side better and whole. I know this from experience as well. When my daughter died at 16 days old in her father’s arms, I grieved. My arms ached with the need to hold her. Was it hard? Yes. I suffered, cried and got genuinely mad at God. But eleven years later what remains are the gifts and lessons my daughter taught me. I touch these often, most recently on Monday when I witnessed the beauty of La Vida through the eyes of one of my dying patients.
Several weeks ago, I asked Barbara what she wanted to do with the time she had left. Her eyes glimmered with possibilities. “I would love to ride a horse one last time,” she said. I didn’t know if it was possible but I promised her I would try. While the Supreme Court grappled with the definition of life – I watched a woman who could barely walk hobble up a ramp so she could mount a horse. She had serious doubts whether she could do it, but hope kept her trying. I watched her relinquish control and give into trust. Volunteers and her family literally supported her while she sat down on the horses back. Her son gently guided her weaker leg over. Barbara sat up and realized she was on horseback. A triumphant, gleeful grin made its way across her face. In the tumultuous world of cancer and terminal illness, La Vida still offered wonderful surprises. Barbara rode for 45 minutes and during that time those present savored her healing – one that could not be defined within the lines and pages of a medical textbook. There are things we can’t imagine as we walk to death’s door but we have to allow our minds and hearts to journey there. As a society we need to stop talking about life and actually start living it. This bears with it a responsibility to also embrace death. We need to stop stashing death behind closed doors and in institutions and invite it into our homes. Instead of seeking technological miracles and holding on to them with all our might we need to accept that death is not defeat because as human beings we will most certainly die. When we refuse to engage our mortality, we misplace our compassion and humanity. When we hide from our broken hearts and the strength of all its pieces contained we forget our openness. If we chose only joy, we miss the beauty of complexity. If we cry only sorrowful tears we miss the joy streaming down our face. We flatten out our human experience by choosing a singular extreme. So instead of debating the politics of a feeding tube, let us choose to remember that as human beings we suffer pain, we become ill, we die. But we also hope, laugh, celebrate; we can know the joy of caring for one another, and the sorrow of walking them gently to the other side. Let us remember La Vida. When we do dying will become as much of an art as living. Then we all will be healed because it is only then that we truly reside in all our humanity.