A Survival Story
When writing a story, one first needs to decide when the story begins. That was not exactly an easy task when writing this story. The answer came to me at three a.m., when I was awakened by my current support dog Lucy as she jumped onto my bed. She reminded me that any story about my life has to include the dogs in my life. This story begins with the death of my youngest sister Chris in December, 2013, and the subsequent death of our dog Zoe two months later. My sister Chris understood that I needed to be with Zoe at the end of her life, so she made clear her request that I not come to be with her at the end of her life. There was no doubt in Chris’s mind that Zoe’s death was the more important one for me to be present for. She wanted me to have no guilt about doing what was clearly necessary.
Six weeks after Zoe’s death I found myself in the emergency room diagnosed with a DVT blood clot. For five months I went through horrendous treatments that saw me lose 40 pounds because of a reaction to a blood thinner drug. I was eventually able to rebound, but never recovered the vibrant health I enjoyed before. Many people believed the loss of Chris and Zoe so close together contributed to my decline in health. They were only partially right. As I saw it, my time with Zoe simply delayed the inevitable. I was never happier in my life than those nearly two years with my soul dog. Zoe was instrumental in helping me refine my photographic talents. I believe that happiness delayed what was inevitable, what was already happening in my body. My two losses merely opened the flood gates to what was already there. Over the next five years my body slowly deteriorated as I adjusted to what I partially believed was “just part of getting older.” There was also a part of me that kinda knew that wasn’t true as I observed other people my age. I exercised, spent time in the therapy pool each afternoon and relied on medical cannabis to relieve the pain that slowly got worse over the years. I also had the help of my camera and three photo assistant dogs, Beso, Mae Mae and Lucy, who provided the emotional support I needed to get through hard times. I was unaware of how successful I was in coping with what others would have considered unbearable pain. I’m not sure if I have a high tolerance for pain or if I was just really good at treating it with unconventional methods.
As my disease progressed, my ability to function decreased. The only things that were not truly affected were my ability to take photographs and walk dogs. Photography was not a hobby or a profession, but a necessity. Walking in nature while establishing relationships with wildlife were also an essential part of my healing and my emotional health. For better or worse, as long as I had my camera in hand and a subject in focus, the pain in my body was secondary. In hindsight, I now know that the photo documentation of the Santa Rosa fire and rebuilding served as a major part of my ability to continue to function in spite of a life threatening illness that was taking over my body.
On the evening of February 3, 2019, I noticed that my right leg was swollen. I attempted to put on my support hose, but was unsuccessful. As I bent down to remove the hose, I got a sharp pain in my chest. I walked into the living room to sit in my comfortable chair. After I was seated I got a second pain in my upper torso that felt like a sword had been thrust into my chest. This was the first moment I was forced to acknowledge the possibility that I was going to die. I picked up the phone and called my neighbor Susan who came immediately. She dialed 911. Paramedics arrived within minutes. The life and freedom I had known for 70 years was about to end. As a paramedic slipped a nitroglycerine tablet under my tongue, through tears I watched the neighborhood I had called home for 8 years disappear through the back window. I had a feeling I would never return. I was right. Five months later my rental house was put on the market. I was no longer able to pay the rent. Many of my most valued possessions were sold for pennies on the dollar or simply given away.
I woke up in the ER of Memorial Hospital, wires, tubes and needles connected to various parts of my body. A high pressure mask covered my face, helping me to breathe. A doctor leaned over my bed, blocking out the glaring ceiling lights. He asked my name and birthdate. Then he dropped the bomb. “You have two pulmonary embolisms as well as an incurable form of bone cancer called Multiple Myeloma.” I believe he asked if I had any questions. I had a million questions, but not for him and not in that moment. For a brief second I asked, “why me?”
I had escaped the experience of being hospitalized for the first 70 years of my life, making the experience even more difficult to navigate. I had observed others from the bedside as a caregiver. Suddenly on the other side of the coin, I couldn’t help but see myself in the shoes of those I had attended over many decades. Everything I experienced, I experienced in the shadow of the AIDS epidemic in San Francisco in the 1980s. Everything I experienced I experienced in the shadow of my soulmate Rob’s death from pneumonia, and my niece Cyndi’s death from lung cancer and my father’s death from lung cancer and my numerous San Francisco friends’ deaths from AIDS related pneumocystis pneumonia. I believe a tiny seed was planted in my subconscious mind in the form of a question. Was it my duty to come back from the edge of death to tell all their stories?
The story of my hospitalization can only be told through the eyes of morphine. Much of the story is compressed into small and infrequent periods of consciousness. Everything else is a series of repetitious scenes of hallucinations that resembled the movie “Groundhog Day.”
My first memory after admission to the hospital is of my friend Alyson kneeling beside the bed programing my first smartphone. After three subsequent trips in an ambulance, I became used to seeing the world from a reclining position, watching tree tops and utility poles race by. I could identify the different hospital hallways by the ceiling light fixtures. I became accustomed to the frequent trips to radiology where I would be left waiting in the hallway before being wheeled into the CT scan where I would be carefully lifted onto a cold hard table that made it difficult to ignore the severe damage that had been done to my spine, ribs and sternum. The elephant in the room was the fact that I no longer had any semblance of control over my own life.
Most of all I remember fighting for my life. Three times I came to a place where there was only a question. Nothing else existed but the question. It wasn’t asked in English, or any other language. It was just a feeling that hung over me. An urgent request from another dimension. There was no time for contemplation. The answer needed to be given in haste. “Do you want to go or do you want to stay?” I intuitively knew the answer. “I want to stay!”
I remember sleeping a lot, then waking every four hours for respiratory therapy. They would remove my high pressure mask so I could hold a small tube between my lips, while medicine was pumped into my lungs with a forceful rata-tat-tat. When the fluid in the lungs was broken loose, I would insert a long narrow suction tube down my throat to suck the fluid out. I didn’t think about it. It was just what needed to be done in order to live. Like breathing in and out! I was in the throes of that mystical concept called “the will to live.”
My time in the hospital is a series of brief memories all jumbled together with no respect for timeline or order. I spent a few days in a private room once, while they decided if I was highly contagious. I was not. I remember being impressed by a dinner that included a large piece of salmon cooked to perfection. Not what one expects from institutional food. I remember the first attempt to get me to walk. My beautiful legs had become toothpicks. I had no muscle left. When I attempted to stand on my own I fell to the floor like a rag doll. Red lights flashed and
alarms pierced the hallway as nurses ran to my aid as my heart rate soared. Two people picked up the rag doll and placed him on a nearby chair while he attempted to catch his breath.
I remember long nights of hallucinations, staring at a small light on the bottom of the TV. It came alive in the form of a soldier in armor with a sword, walking from one end of the TV to the other at the edge of an ocean. Other nights were spent staring at a meditation channel that played soothing music while showing a tape of nature settings. Every time the scene and sound of waterfalls came on, I would wake up to pee in the urinal! I felt like I was in a glass bubble and everyone living their normal lives were on the other side of the glass, out of my reach, their voices muffled by the glass.
I felt like an anomaly as I was shifted from one hospital ward to another. Because of my fractured sternum, I was placed in the coronary care unit with those who were recovering from heart surgery. Because of my pulmonary embolisms and multiple bouts of pneumonia, I was transferred to the pulmonology unit. But I finally found a home in the cancer ward on the third floor east. There I found support from others who were suffering from the same trauma I was, in my struggle to accept a scary and uncertain future, if any future at all.
Often I would awaken to the sound of a woman’s voice in the doorway. The introduction was almost always the same. “You don’t know me, but I have followed you for years online and now I’ve come to support you in person during your struggle!” Some referenced my documentation of the Tubbs fire and the aftermath and rebuilding. Others referenced my story of “Zoe The Happy Dog.” Those often came with stuffed toy dogs tucked under their arms as an offering for my alter. And then there were the cards and letters that came each day by the dozens. They were often read to me by yet another volunteer who gave up precious time to read to me while I struggled to hold back tears, overwhelmed by unconditional love and support.
After I was transferred to Summerfield Healthcare Center, I was able to finally get some perspective. One of my neighbors from Oakmont, Benita, met me in my room and helped me get settled in. I already had an incredible support network in the community were I had lived more than 7 years. Now I found myself with two distinct support groups. Those who had joined me from my online presence and those who had stood by me in my struggle to stay in my home throughout the previous years before my diagnosis. I remember my time at Summerfield with a much clearer head than my time in Memorial Hospital. Perhaps that is the difference between morphine and OxyContin.
During my year at Summerfield, I developed relationships that were more like family than friends. Outside the constantly changing parade of other patients, the caregivers of Summerfield were the permanence in my everyday life. I was able to get a first hand experience of what we reference as a second childhood that comes at the end of one’s life, when we become dependent on others for things we can no longer do for ourselves. I intuitively came to understand that if I would ever get out of Summerfield, I would have to first break my dependence on others.
The first six months of institutional life were a back and forth struggle between the nursing home and hospital, with three close calls with death. It was now difficult to see a life outside those two institutions. A part of me had come to terms with the idea that I would spend the rest of my short life in Summerfield. Returning to anything similar to the life I had before was a very frightening prospect. I had been a fiercely independent person before my diagnosis. I had never faced anything so challenging as a diagnosis of incurable bone cancer. It brought me to my knees. My spirit was broken and I found myself, for the first time in my life, resigned to the fact that I was almost totally dependent on others. From that place I could not envision regaining control of my life. I had placed myself in a mental prison where I spent my life sentence observing, through the bars of my imaginary cell window, a unattainable life of
freedom others lived just a few feet away. I longed to have that life again, but no longer believed it possible.
Even when imprisoned, one still has the desire or will to survive. My survival and mental health depended on my contact with the outside world. I felt sorry for all the people who had been institutionalized before the invention of the internet. I was sad for all my fellow inmates who never had the pleasure of dog visits, both live and stuffed. I lived for the mail deliveries everyday. The stories written by someone’s hand pushing a pen across a piece of paper brought me so much joy. The idea that someone loved me enough to devote that time exclusively to me was a vital part of my survival. Holding the cards and letters in my hand, I could feel the energy pulsating through my fingertips.
Each time my friends from Oakmont and San Francisco visited, I wanted them to stay forever. I cried when they left to go back to their normal lives outside the prison. I enjoyed the gifts of outside food and drink like a child in a candy store. I appreciated neighbors who would visit, then take my laundry home with them. I was blessed to have complete strangers become close friends who would walk with me or drive me to my weekly chemo treatments as if they were family who had known me since birth. I was overwhelmed by the kindness of my online friends who smuggled cough drops, ginger chews, prunes, bran cereal, dark chocolate and other assorted medicines into my closet.
For the first six months of my incarceration, it was difficult to imagine a life that would be as free as the life I had lived before. I was tethered to my bed by the tube that provided oxygen to my lungs. I had to learn to walk again on legs that would no longer support my weight. I held onto all the positive things I could find in order to survive mentally and physically. They had a cumulative affect. During the second six months I slowly awakened to the idea that perhaps escape was possible after all. I slowly weaned myself off the oxygen and began to walk the hallways everyday. The real turning point came when four friends from San Francisco visited. Before they left, I posed for a picture with three of them in the parking lot. When I saw the picture I was shocked into action. There I was, the shortest person in the picture. The bone cancer had reduced my height from about 5’10” to 5’4”. When I graduated from High School I was 6’1”. But I also thought I looked like the oldest person in the picture. I immediately put out a request on my Facebook page for someone to cut my hair, which hadn’t been cut in almost a year! The day of my haircut was the true turning point in my struggle to return to my former life. A Santa Rosa hairstylist, Loretta Kirkeby, whose mother was in a room down the hall, volunteered to cut and bleach my hair. Suddenly I could again see the person who had lived that other life before my diagnosis. I was again able to look at myself in the mirror.
Spurred on by my haircut, I began to exercise more. I left the facility each day to explore the neighborhood above Summerfield. Then one day I put my small camera in my pocket and took the first photo since my diagnosis. Every two days my friend Cindy came to walk with me. I had a goal of walking at least three miles a day. Some days I made it to five miles. One day, in a conversation with a woman who lived in the neighborhood, I was told the second hill was too steep for me. The next day I climbed the second hill and made it to the end of the street. On days when the pain was almost unbearable, I whispered my supportive mantra. “This will save your life! You are walking to save your life!”
When I thought about my eventual move to San Francisco, it was impossible to imagine a normal life again while taking opioids. I had been taking 30 mg of Oxycontin twice a day for nearly a year, and Dilaudid during the day for severe pain, as well as 10 mg of Valium each night. Determined to become opioid free, I began a two month process of titration off the controlled substances. This turned out to be one of the most difficult things I chose to do. The withdrawal symptoms were severe, even though I had chosen to do the titration slowly. I spent many sleepless nights even though I had noise reduction headphones and a face mask. My muscles ached and I was easily agitated. Sometimes I awoke shaking and sweating uncontrollably. Then I caught a bug that was going around. I got a severe case of bronchitis that required two rounds of antibiotics. In this state he fear of going back to the hospital, the fear of not being able to move to San Francisco and the fear of dying were all magnified by the withdrawal from the opioids. So I walked. I walked my way back to health. When I couldn’t sleep, I walked. When I became agitated, I walked. When I thought I couldn’t make it to the end of the road, I walked to the end of the road! When I arrived halfway up the steepest hill, out of breath, I rested a few moments, then walked the rest of the way to the top. I became an expert in understanding the difference between what I imagined from fear and what was really possible. I constantly whispered to myself, “you are doing this to stay alive!”
On Monday, March 16, 2020, I walked out of Summerfield Healthcare Center for the one hour drive to San Francisco where I would live with my friend Bob. I went from more than one year in a nursing home, to the first day of a “stay at home order” during a worldwide pandemic. While most other people saw the stay at home order as a restriction of their daily life and freedom, to me it looked more like a liberation. I was liberated from three meals of institutional food each day. I was liberated from the background drone of multiple televisions sets on as many different channels. I was liberated from waking up multiple times each night by nurses and CNAs changing my roommate’s beds. I was liberated from the smell of feces and urine. And now my emotional support dog is not just a casual sometimes visitor. She is on duty 24/7.
Each day my health improves as I return to the yoga, Chinese Medicine, Medical Cannabis and other practices that served me so well throughout my life. I’ve learned to carry my camera in a way that does not compromise my posture, as I walk through the streets of San Francisco. My mask is on and social distancing is practiced religiously. No one who stands on the abyss, looking into that great mystery called eternity, ever returns to the life they had before. Now, more than ever before, I ask the question, “why am I here, what is my purpose in life?” One thing is crystal clear. My life will be lived with a camera around my neck and a dog at my side.
154 total views, 1 views today