In 1979 I moved from Indiana, my home state, to CA., a state I experienced briefly when I enlisted in the Navy at age 18. I told myself as I walked the streets of San Francisco, “Carol, one day you will live near the Golden Gate Bridge.” I was happy to have left Indiana as it was a state that held very dark memories for me. Now at age 75.11, I have experienced writing my “life story.”
The only member of my family that I actually said my “goodbyes” to was my Dad. I went back to Indiana just to say goodbye to him. I visited no other living relatives. My mother had already died; it was sudden and myself and my six brothers were given 5 minutes with her to say our goodbyes. She and I had always had been upset and angry with each other from the moment I was born. I won’t speculate on why it was so difficult for the two of us to get to “love.” However, when I reached age 12, I realized I was a lesbian (that’s a book in itself), and a wall of disconnection began to be constructed by myself. It was the very early 1950’s and anyone who was homosexual had to hide in a deeply painful dark close. Even though the words were unspoken, I felt a great loss of “mothering” even stronger in my soul. I now understand such behavior could have been for many reasons, but I blamed myself for her sorrows.
However, when I did have a chance to say my goodbyes to my Dad, I came to his hospital bedside as a trained death and dying, grief counselor with long experience in the AIDS epidemic. I lived in a small community on the Russian River in a little town called Guerneville. A community that was about an hour and a half drive from San Francisco, the center of so many cases of AIDS in the early 80’s. I had experienced the death by cancer of one of my five sister-in-laws in Indiana and it was Elizabeth Kubler’s book on death and dying that helped me through that very painful experience. With each of these experiences could come an entire book on how much I learned about a part of life that no one avoids…death.
While everyone in her family and mine were avoiding my sister-in-law, I was full of feelings I had never acknowledged before in my life. I began to remember how I used to go pick-up the baby birds that fell from the tall building across from our house on the red cobblestone street where we lived. Everyday in the hot and humid temperatures of Indiana in the summer, the birds would fall from their nests and lay there with only a few feathers beginning to grow on them. I would fill my coffee can with them and then go bury them in the cemetery across from the alley behind our house. I would tell no one and I felt no fear only sadness as I shed tears I didn’t understand. There was no talk of death and dying around children; no one to help us understand why someone or something died.
So by the time I went to sit at the bedside of my father’s hospital room, I had more understanding about death and dying. He was very happy to have me there and relieved that he could finally ask someone to clean his false teeth for him. I think almost everyone in my family eventually had tooth loss, as I have had. The experience with him taught me that one day I too may have to ask someone to clean my false teeth for me. I think we always trusted each other with our secrets. He was the one who stood by me when I revealed my being a lesbian when my mother was damning me and threatened to have me sent to a reform school. My Dad suggested I leave home and it was the motivation for joining the Navy at age 18. He knew she would never accept that part of me.
I eventually earned a teaching degree and a Masters in Counseling. These credentials helped me to work with people needing help. However, it was the experiences of working with hundreds of young men and women dying of AIDS in the early 80’s that presented me with the challenge of learning how to help. I learned right along with them to have that “last conversation” with lovers, partners, family members, etc. The first part of helping them was to encourage them to learn to love themselves first as many who are gay and lesbian have this as a huge challenge. Once they understood this was the most important person to comfort and have the “conversation” with, then they could face saying goodbye to the people in their lives with whom they loved so dearly.
Some of the people I worked with took their own lives and few would understand why this would be their answer to suffering with HIV/AIDS in the early days of the epidemic. It was a death sentence and still there is no cure, but help for longer survival. It was only the clusters of helping organizations, for the most part, who reached out to those needing compassion and help in place of judgment and damnation. Even as I separated from my family of origin, I gained many new family members as we held each other in our hearts as they shared their journey of facing death and dying. I made sure “saying goodbye” was a priority with friends and family if it was at all possible to do and if clients wanted this important part of their journey to be completed. With this disease occurring for individuals, they often were forced to reveal that they were gay or lesbian at the same time. There were times when I was asked to be part of a family meeting so the person with HIV/AIDS did not have to do it alone. No matter the outcome, the person who was dying felt more ready to accept their death with dignity as an important part of who they were was revealed to their family members.
I think one of the most important thing we did as a part of the AIDS agency I worked with was to create a “parents” group wherein mothers and fathers would meet other parents whose sons and daughters were dying of AIDS. It was rare in those days to have fathers willing to come to meetings, but no matter the parents who did share their common challenge of losing a child were supported and not alone through such a great loss no matter the reason.
My family members have all died now and I realize there was never a time when I could have met with all of them as a family to say my goodbyes. We never really were together as a family throughout our lives. This seems to be the story of many families as I listen to other’s stories. The result is so many people are left in grief and the grief many never be resolved. I have gone on attempting to “resolve” the issues I am left with. This is still my responsibility as a member of my family who lives on and as a more conscious person do this important work for my life. Hopefully all this continuing grief work now will be helpful when I say my final goodbyes to those I love in my life.
The agencies and groups which were formed fairly quickly by all volunteers in the beginning as it took many years for Federal funding to face the reality of this virus. These agencies had the foresight to know those affected with HIV/AIDS would need comfort in all the forms it is needed by human beings who are affected by a life-threatening disease. The agencies still do their work of supporting human beings and also attempting to educate all of us on how not to get infected by the virus; there is still no cure for this virus. It’s helpful to honor all those who have died of this virus by educating yourself on how it can be transmitted and sharing the facts with others you know.