6. Elisabeth Kübler-Ross: My Own Grief
I am no stranger to grief, although few people have actually seen me grieving. While I have made a career of dealing with death and dying, I came to my grief late in life. Having spent the last nine years partially paralyzed due to my strokes, I have often felt purposeless, even though I know I am still here for a reason. During this time I’ve had the opportunity to write two more books with my cowriter. There was something about having time to reflect and revisit old stories of loss that triggered my own.
The writing was cathartic, and as David and I talked through the work, there was something about my grief being witnessed by another that allowed it to rise to the surface. I cried many times during the writing of these two books. I had always experienced my work as the doer and creator. Now, being bed-bound, I have felt the pain of all the lives and losses of which I had been a part. My life has always been integrated with death, but I had kept my personal grief at a distance. I have said many times that through my work I have come to realize that death doesn’t exist. I am of course speaking spiritually and symbolically. When a loved one dies, the reality of death on the physical level is all too real.
My first experience with this dramatic contrast between realties was when I was just eight years old. My parents thought I had a cold, but when it didn’t get better I went to the hospital and was put in a room with a little girl about the same age as I.
In this world of people in white lab coats, I knew this little girl was sicker than I ever was. I also saw that she had no visitors. This little girl with porcelain translucent skin hardly said a word to me, but in her silence I understood a lot. After days together, she told me that she would be leaving later that night. I was concerned, but she said, “It’s okay. There are angels waiting for me.”
I had no fear about the journey my friend was going on. It was like the sunset. She appeared to die alone, but I felt she was attended to by others from another plane. While I felt she died without family and friends there, I did not feel much grief, because I had been reassured by her that it was okay. Even so, I thought it was a cold, lonely, sterile death.
In a few years I saw another death. My parents’ friend, a farmer in his fifties, fell from an apple tree and broke his neck. The doctors said there was nothing they could do, and his family took him home to die. He had time for family and friends to visit while his bed was positioned to look outside the wide window at the flowers in the family garden. This kind of death had a peaceful, loving feeling, sad and yet warm, unlike the girl in the hospital. Naturally it is no surprise that in my last years I have been in a room with flowers and a big window to look out of.
My father, Ans Kübler, was a strong man who decided I was to be a secretary. My sister Erika was going to be an academic, and my sister Eva would receive general education.
But I was left with many questions: why was I born a triplet with no identity? It felt as if I’d been born with the loss of a single unique identity, because often my own parents couldn’t tell us apart. I still have no idea why my dad was so tough and my mom was so loving, just as I will never know why I was born a two-pound “nothing” from Zurich.
Many people do not realize that I was famous at birth, but it was not a good kind of fame. Triplets like my sisters and me were on display since we were considered so unusual. You have to remember this was before infertility medications that caused twins and triplets and even quadruplets. All I knew was that our pictures appeared on billboards and I was invisible as an individual. To never feel that I uniquely mattered was a lesson that would help me recognize how much people meant to each other and how every loss, large and small, matters.
I also learned early on not to grieve for myself, not to cry and not to feel. During my childhood we always had bunnies around the house, and I loved each and every one of them. The problem was my father was thrifty, and every six months he needed to roast a bunny for our dinner. I would have to bring the beloved bunnies, one by one, to the butcher. But I always made sure that my own special bunny, Blackie, was never chosen. He was mine, the one love object I had that belonged only to me.
Blackie got pretty fat because I kept giving him extra food, and of course the dreaded day came when my father told me it was time for me to bring Blackie to the butcher. I could not allow it. I begged Blackie to run away, but the more I shooed him away, the more he thought I was playing and would run back to me. No matter what I did he kept coming back, and my pain only escalated when I realized that he loved me too.
The inevitable happened soon enough when my father sent me off with Blackie, making me promise to give him to the butcher. I did it, crying the whole time, and in a few minutes out came the butcher with my dead Blackie in a bag.
“Here’s your rabbit,” he said, handing it over. I felt catatonic when I reached out to accept it. I could still feel Blackie’s warmth when the butcher remarked, “By the way, it’s a damn shame you brought this bunny in now. It was a girl and in a day or two it would have had babies.” That night at dinner when my family ate Blackie, in my eyes they were cannibals. But I would not cry for this bunny or anyone else for almost forty years.
It finally happened in a workshop in Hawaii. During the week, the landlord nickeled and dimed me for everything. For the next five days I felt unbelievable rage toward this man, so much so that I wanted to kill him. I struggled to contain the rage so it would not ruin the workshop, and when I arrived back home, my friends confronted me on my anger. After some resistance I talked out my anger and was shocked to suddenly find myself sobbing. The rage gave way to a deep sorrow underneath, and as I cried, I realized this was not only about the landlord. His cheapness had been the trigger that reminded me of my all-too-thrifty father. I was suddenly that little girl crying over Blackie. Over the next few days I cried for him and all the other losses that had gone ungrieved.
Perhaps the repression of my grief was instrumental in my reaching out to others to find their own. In this way I indirectly healed my own grief little by little. It is my profound desire that through this book other people will feel safer choosing a more direct method to heal their grief.
I think back to after the war when I was young and visited a concentration camp. I was overcome by sadness. The loss was in the air. I looked for something, anything that would help me understand. I looked for some sort of sign of how these people lived in the midst of such confining loss. As I walked through the huge barracks where people were housed in animal-like conditions, I noticed carvings on the walls. They’d written their names, dates, and anything to say they were there and did not want to be forgotten. There was one image repeated over and over again—the image of butterflies. I thought of all the places in the world where you might find butterflies, but never in a death camp. For the next twenty-five years I wondered why there were so many butterflies, and now I know that the butterfly is a symbol of transformation, not of death but of life continuing no matter what.
When I think of my own losses, I can see how I survived them. During my marriage to Emanuel Ross (Manny), I had a miscarriage, but I used my beliefs in a higher power to continue my life and work, undaunted. I then had a second miscarriage. Twice I had been accepted to a pediatric residency that I desperately wanted, and twice I was disqualified because I was pregnant. Because all the “good” residencies were taken, my only choice was a psychiatric residency. I was afraid I would be a woman who would always lose my babies, but life had other plans for me. A year later I had my first child, Ken, and then a second, Barbara. I see today that my life’s work would not have been possible if it were not for this sad twist of fate. This mixture of loss and birth seemed a natural part of my life.
Another tremendous loss was the death of my ex-husband, Manny. Even after our divorce we remained friends and talked weekly. When he died I was devastated, since we had practically grown up together. He was the father of my children, and I have wonderful memories of our times together. One day my grown son, Ken, put on one of his father’s suits and I could almost see Manny again. I also see characteristics of Manny in my daughter, Barbara, and my grandkids. I am struck in my own anticipatory grief how all my losses, even my own death, are intertwined with those who live on.
Years later, in 1994, I bought a three-hundred-acre farm in Virginia. I wanted it to be a place of healing, partially for the care of AIDS babies, and the locals were not happy with me. But I was used to stigmas around death and dying. I saw people dying of AIDS stigmatized the same way I saw people years before stigmatized by society. I had underestimated the hatred for my farm when, in the end, it was burned down by arsonists.
Since there was no use denying the loss of the farm, I accepted it. My life has been many things, but never easy. That is a fact, not a complaint, because I have learned there is no joy without hardships, no pleasure without pain. If not for death, would we appreciate life? I believe our purpose here is to love and be loved and grow. And having said that, there is no pain greater than the loss of a loved one. I have known from witnessing life that everyone goes through hardships. Adversity only makes you stronger. Life is hard, life is a struggle, like going to school where you are given many lessons. The more you learn, the harder the lessons get.
One of the other griefs I have to mourn is the modern medical system in which I find myself a patient. People have said I have denied or discounted my work. That is not the case. I now see it is my mourning the loss of true medicine and finding myself in a world where medicine is about management and not healing. Decisions are not made at the bedside of a patient but rather in an office by someone who has never seen the patient. I am saddened by the loss of the world of medicine I once knew.
I have expressed my sadness, my own grief that as I experience the system as a patient, there have been times I questioned whether I made a difference with my work. I realize in the big picture with all the wonderful patients I have worked with that of course I have. In the small picture, though, I witness the depersonalization of medicine, which I find disappointing and sad. For me, someone who has made a life in medicine, that is a true loss that I am still grieving.
Throughout my life I dreamed of a future where medicine would see the whole person and tend to all of their needs. And yet, even though I have more resources than many others, my insurance company allows only a certain number of physical therapy visits. Nothing is really based on my personal needs.
In 2002, one of my sisters, Erika, became very ill. I flew to be with her and offered her one of my kidneys to hopefully save her life. When she said something like, “If this is my time, then it is my time,” it was easier to be angry than sad. As much as I intellectually understood, I still did not want my sister to die. In fact, I remember our childhood pact that we would always hang on to each other. At birth we came out so close together, I wondered if we would do the same in death. Once she was gone, I realized I was next, and that took me to a deeper level in my own anticipatory grief around my death.
I have been in anticipatory grief for years. This of all times in your life is the time to be your authentic self. Not what others think you should be or what the medical system thinks you should be but yourself, whether it is sad or angry. I now look out of my room as I get close to death. It has been a long time coming. I thought I would die a few years ago and I almost did. But I am still here because I need to learn patience and how to receive love. Being ill for nine years has forced me to learn patience, but I still struggle with receiving love.
I know death is close, but not quite yet. I lie here like so many people over the years, in a bed surrounded by flowers and looking out a big window. A room not much different from that first good death I saw. These last years have been like being stuck on a runway, not allowed to die and leave this earth, but not allowed to go back to the gate and fully live. I am reaching a greater understanding of the pain of anticipatory grief, which also gives me a greater understanding of my patients. In the meantime, I have my kids, my two wonderful grandkids, and I still love my work very much. Writing this book has given me a way to continue to feel useful in my life, even at its end.
The process of dying when it is prolonged like mine is a nightmare. I have struggled with the constant pain and paralysis. After many years of total independence it is a difficult state of being. It has been a long nine years since my stroke, and I am anxious to die—graduate, as I call it.
I now know that the purpose of my life is more than these stages. I have been married, had kids, then grandkids, written books, and traveled. I have loved and lost, and I am so much more than five stages. And so are you.
It is not just about knowing the stages. It is not just about the life lost but also the life lived.