I am on day thirty nine of Social Distancing to slow the spread of COVID-19, the disease caused by the novel coronavirus SARS-CoV-2. During this time, I have been home, mostly, alone with my three children attempting to pull myself up by the bootstraps out of a crisis minded schooling model that none of us were prepared for to a thriving and positive life-enhancing homeschooling opportunity for everyone. I am looking at this experience through the lens of knowing that life is fragile and therefore, I want to make the best of every situation. I am not sure if it will be the positive situation for my kids that I am trying to make it. I think they are already annoyed with me and mostly, determined school is better than being with Mom and her positive quotes all day. What I am sure about is that this time has given me, and I am sure everyone, the opportunity to sit deep with my feelings and to further explore a conversation that we should have been having all along. This is a story about how our perceptual filters influence our views on life, death and disease. I have been feeling from others, when I listen to their stories, a sense of urgency and panic. I scroll through my Facebook feed and I see a strange combination of a daily death counts, self-isolation photos, health tips, proper handwashing strategies, full-on panic venting, and a few popup conspiracy theories. I have read story after story about my friends' elderly relatives and their deep fear of what this pandemic means for their life expectancy and beyond that, I can feel their love of their sacred relationships. Yesterday, as I walked through the grocery, I decided I would say hello to people, maybe because I was missing some sense of real outside contact. I noticed despite my best efforts to smile at people from the proper distance, people were glancing down. I am assuming they were feeling afraid to make any form of contact whatsoever either for fear of contracting COVID-19 or for spreading it. I wondered, “Am I the crazy one? Maybe I should be scared?” But I wasn’t. I was happy to be out and about, even if it was to shop for groceries and there was still no toilet paper. As I was waiting in line, I started to think about how we all have these different perceptual filters. We develop our perceptual filters based on our life experiences, our brain chemistry, the actual physical components of our eyes, our sensory systems, and our physical and socially conditioned processing systems. My individual view about life and death is directly influenced by my life narrative. Every event I have witnessed, every story I have heard and every sensation I have felt have entered into my body where they were processed in my brain and then, some part of me determined what was relevant, important and true. That's where perceptions begin. They begin in both our inner and outer-world at the same time. Perceptions are shaped and molded inside of us and then, we project our perceptions out into the world and onto others. I began to explore how I feel about death, dying, and living with chronic disease and how that began when I watched my father waste away from Huntington’s Disease. In the end, my Mother called Hospice so he could let go of the life he had been fighting so hard for. He had lost physical capabilities and the will to hang on. He had been slowly dying of gradual cell death for fifteen years. I watched him suffer in silence and sometimes in fits of rage. And, I also saw him make the best of a horrendous situation by encouraging me to "keep my chin up."
In many situations, the family members decides to use other means of life support to keep their loved ones alive for as long as possible. Some, staying on respirators and other life sustaining devices for years on end because they are unable to breathe, to eat or to speak on their own without the machine. I believe this is a choice that we are all entitled to have but this is not the one that I would want for myself.
As I understand it, right now our medical system is experiencing the biggest crash due to, not only the global pandemic, but due to the way the medical model is set up to extend life for as long as possible and to use all means necessary to save everyone even when it might not be in the patient's best interest. I started to think about how I know I never want to be kept artificially alive for an extended period with a machine that is breathing for me. I told my husband yesterday, “If I am ever severely injured or in critical condition, I want thirty days of artificial life-support max. After that, pull the plug.” I began to wonder, how it was that I could speak so easily on a subject that for most feels so difficult to accept. I realized I had formed this perceptual filter for myself early on.
I began to wonder why I was having these feelings come up now. Then, I realized the power of this pandemic and how it is providing an opportunity if we choose to see it that way for all of us to have meaningful conversations about how we will live, how we will die and what means we will go to, to keep people alive. My first experience with death was when I was eight. I am remembering it now as if it were yesterday. It began with me walking into the hospital room to see one of my most favorite people on earth lying in a sterile hospital room. She was all dressed in white wearing a white hospital gown with a white sheet covering her from her toes to the tip of her chin. She was lying motionless with her eyes closed. She was my only living Grandma. Normally, when I walked into a room, I saw her sitting at the side of the kitchen table, with her legs crossed wearing plaid pants and a black turtleneck smoking these long brown cigarettes. She was an artist who carried herself with sophistication and a look of defiance and grace. She always had the softest spot for me. When I walked in, she put down her cigarette in the ashtray, uncrossed her legs and opened her arms for me to run to her so I could climb up on her lap. One of the things I remember most is that she hand-sewed stuffed animals for me. I still, thirty-five-years later have the dolls she made for me. I remember on one occasion when I spent the night at her house before going to bed, I looked in my suitcase. I was devastated when I discovered I had forgotten to pack my church clothes for Sunday Service. I ran to her to tell her the bad news. She said, "It will be ok. Don't worry. Rest now. And, we will figure it out in the morning." In the morning when I woke up, at the end of my bed there was a white button-up collared shirt and a grey wool skirt waiting for me. She most have stayed up the entire night creating a pattern and sewing it for me because when I put it on it was the most perfect fit. And, now, here she was a lifeless bag of flesh. She was hooked up to ventilators. I looked around the room. I saw a long tube running from between her legs connected to a bag filled with urine. I saw another long plastic tube running from machine to machine. I heard the beeps and the murmurs of people walking by. I listened to the drip-drip of fluid as it traveled from one bag, down a plastic tube and into the needle piercing through her skin. I watched as the liquid flowed from the tube to the needle that was taped across her frail thin arm. I heard the grownups talking about how long they would keep her alive like this. My Mom said, “She would not want this.” My Mom asked, “Do you want to say Goodbye?” I did. I put my hand on her heart. I felt her ribs lift. I said, “I love you, Grandma.” But, I knew it was not her lifting her ribs anymore but a machine pumping her lungs. I placed my hand in hers and I felt the lifeless body. Somehow, I knew she was already gone. It didn’t feel complete until that day at the Funeral Home. I walked in and there she was in an open casket. She was all dressed up like she was going to a party. I noticed her painted red lips. Her jet black hair was curled. She looked so different from just a few days before. I thought, "Maybe she's alive." I walked up to the coffin to check. I put my hand on her cheek to see if she would come back to me but all I felt was cold hard clay. I decided then and there that I too would die one day. To me, life has always been fragile and sacred. Death has never lingered in my perception as a question of if but rather when am I going to pass to the other side. Seeing death early on, has given me the perspective to cherish life for it is fleeting, even if we get a hundred years, that is still too short.
So, each day, I ask myself, “How will I live my life more fully? And, what legacy will I leave behind?”
My Grandmother left me a little white shirt and grey skirt and two hand sewed dolls that are still right here in the room with me.