September 8, 2010
Beth was the most remarkable person I have ever met. I first heard of her in spring 1991 in an article in the Sunday section of the Marin Independent. At the time, I was living with my partner, Jim, in an apartment in Tiburon, California, on the edge of Richardson Bay with a view from the Bay Bridge to the Golden Gate Bridge. In the evening we could sit on our deck and admire the view of San Francisco while waves lapped against the beach beneath our feet. Life was good for Jim and me. We had satisfying work and a wonderful group of friends. Yet with all this, I remained angry that I had been infected with HIV.
I don't mean by anger an emotional response to an insult that was to plague me beginning in 1994 as a result of my developing HIV Associated Dementia, which I have written about in earlier blogs -- a soul-deep anger at the Universe that seemed to have violated its contract to treat me benevolently. Before my HIV diagnosis, I believed that we lived in the best of all possible worlds and that behind all the blessings of this world there was a loving and kind god. My HIV diagnosis in September 1984 was a deathblow to that belief system. I became very depressed, which in some ways is anger directed internally.
An HIV diagnosis in 1984 when I was diagnosed was a death sentence. In 1991 when I read about Beth in the Marin Independent, the local weekly gay newspaper, the San Francisco Bay Guardian, had a four page spread in each issue that listed the names of those who had died of AIDS that week. Our doctors gave us no hope of treatment soon enough to save us.
In the Marin Independent article, Beth recalled that as her husband of forty years lay dying in 1985, he told her he had lied to her about having cancer. He said he was bisexual, that he had AIDS, and that likely so did she. At this news, Beth said she became very hurt and then very angry; but, nevertheless she felt she had an obligation to continue to tend her husband, who was blind from Cytomegalovirus (CMV) retinitis and was suffering from a toxoplasmosis infection of the brain.
After her husband died and the flurry of activity surrounding his funeral was gone, Beth said she became furiously angry at her husband for deceiving and infecting her, at herself for allowing his deception, and at god for making a world where such deception and HIV infection could occur. Added to his anger was fear of the certain death that followed upon an HIV infection. This anger and fear grew to consume her and closed her world to everything but anger and fear.
By chance, she picked up a copy of the San Francisco Bay Guardian which contained an article about Dr. Jerry Jampolski and his Center for Attitudinal Healing in Tiburon, California, which had started a study and support group for people with HIV. The Center had for many years been involved in helping persons with life threatening illnesses let go of anger and fear, and find peace. Dr. Jampolski in the article said the first question we must ask ourselves was, "Is there another way of looking at the world that changes our experience of life?" Beth said that question was an epiphany that made her want to find a way out of the anger and fear that were her life. Beth called the Center the day she read the article and asked to join the HIV group.
One of the basic tenets of Attitudinal Healing is forgiveness of ourselves and others rather than judging. Another closely related tenet is to let go of the past and the future. As she discussed these tenets with the members of the group and began to apply them in her life, she learned to forgive her husband, herself and god. She also learned to live in the moment without fear of the future or anger at the past; and, perhaps, most importantly, she found a peaceful acceptance of the moment.
Her story shot through me like a thunderbolt. How, I wondered, could someone who had been so hurt by a loved one and god, learn not to be angry or fearful? Was there a better way as Dr. Jampolski asked? I realized in a flash of insight that since my diagnosis in 1984, I had been angry that I had HIV and fearful that I would most certainly die. I had let anger and fear control my experience of life. The week I read Beth's story in the Marin Independent, I attended my first session at the Center.
When I met her in 1991, Beth was a grandmotherly lady in her late sixties. She was short and stout with boyishly cut salt and pepper hair. She had a girlish laugh that brought out her dimples. She dressed in loose fitting clothes, most of which she made from cloth she wove herself on her loom. Her hands were small with smooth skin that belied her age. She was an artist who had worked for Disney for many years where she had drawn Lady for the film Lady and the Tramp. Beth and I formed an instant bond.
I had just started taking art classes each Saturday morning and was laboring to master drawing the nude. Beth was working in pastels and acrylics at the time; she offered to help me with color, which I gladly accepted. She lived in a townhouse in Sausalito that had a stunning view of Richardson Bay. In addition to her painting, Beth was also a weaver. Her loom was set up so that she could gaze out at her view, with her easel close at hand. We spent many long afternoons discussing art as she sat at her loom or worked at her easel. We also talked about how anger and fear had made our lives difficult.
She told me that forgiving her husband for lying to her about his bisexuality and infecting her with HIV had been far easier than she had expected. In the Attitudinal Healing group sessions, she had listened as one after another of the gay male participants spoke about their fear of coming out to their families. I told the group of my experience in my teens with a psychiatrist who wanted to hospitalize me to treat my homosexuality. Many of you may have read about that experience in my blog "My Journey to Gay Pride". Beth told me the group had opened her eyes to how difficult her husband's life must have been as a closeted gay man. She said her husband had been a loving companion and a great father to their four children.
Beth said the hardest thing to do was to forgive herself for being blind to her husband's bisexuality. How, she asked herself, could she not have known in the forty years of their marriage that her husband was attracted to men? How had she allowed her body to react to her husband's lovemaking which had infected her? Beth said the simple sentence "Is there another way of looking at the world that changes our experience of life?" had given her the key to forgiving herself and letting go of the anger that had consumed her.
We often find that forgiving others may be hard but it is far less difficult than forgiving ourselves. The anger that grows from the seed of the failure to forgive ourselves colors our experience of the world. In my 26 years with HIV, I have seen how anger has destroyed the lives of so many people with HIV. Anger is a natural reaction to HIV; it is part of a healing process everyone with an HIV diagnosis must pass through. However, for many people with HIV, anger becomes a constant state of being.
In my opinion, it is vital to practice forgiving ourselves every day and to learn to experience the moment by letting go of the past and the future if you are to get past anger. In the process of learning to live in the moment we must also learn to be aware of the whole of our lives; in that way one may be in the moment and see the moment as part of a continuum from past to future.
I am currently studying Man's Search for Meaning by Viktor Frankl in which the author writes about his experiences as a prisoner in Auschwitz during WWII. Frankl writes that prisoners knew their sentences to the camp had no definite end. This lack of a known end to their sentences caused them to lose all hope of a future which led to apathy, anger, and a tendency to live in the past, mainly reliving old regrets. Many people with HIV have the same experiences of having a sentence without end and, I believe, the same symptoms.
It is easy to see HIV as a sentence to unending suffering without meaning; but as Frankl writes, we must find a meaning in our suffering if we are to transcend that suffering. As I have written earlier, I believe that an HIV diagnosis can bring about a renewed desire to find the meaning of our lives and to quicken our thoughts into deeds. In a similar vein, Frankl writes that the thought of escaping the camp allowed him to transcend the indeterminate nature of his sentence and to keep a hope of the future.
Over the next few years, our group at the Center for Attitudinal Healing worked through the premature and unnecessary suicide of one of our members, the death by Kaposi's of another, another who died of Toxoplasmosis, and then the diagnosis, in 1994, that Beth's immune system was collapsing. Protease Inhibitors, notably Crixivan, had been approved for compassionate use in terminal AIDS patients; however, Beth's insurance provider would not approve her use of Crixivan. Beth became the lead patient in an action against her insurer to require the approval of Crixivan, which was won.
Prior to Beth beginning Crixivan, she was being prepared to die by a therapist who encouraged her to draw her thoughts about death. I shall never forget her pastel drawing of her soul bounding like a dolphin in the bow wake of a sailboat. Crixivan caused nothing short of a resurrection for Beth. She began to gain weight and color came back to her cheeks. Sadly, her poor body could not stand the harsh side effects of Crixivan and her health soon began to decline again. She was approved again for hospice care and began anew to prepare for death. Beth died shortly thereafter.
I shall never forget Beth. She taught me to forgive and find peace, to love and to live in the moment, and to live without fear or anger. Whenever I see a sailboat cutting through the waves, I imagine Beth bounding like a dolphin in the bow wake.