hospice

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Make a Little Trouble Out There

“Whatever you choose, however many roads you travel, I hope that you choose not to be a lady. I hope you will find some way to break the rules and make a little trouble out there.”

Nora Ephron

To the 1996 Wellesley graduating class

There are certain famous people who, when they die, I feel the loss personally, though I never had a personal relationship with them.

Nora Ephron is one of those people. I loved reading everything she wrote, loved seeing every movie she wrote and/or directed. Loved Love, Loss, What I Wore, the play she and her sister Delia co-authored (based on a book by Ilene Beckerman).

She made feminism fun, someone wrote. She did, because her form of feminism included romantic comedies, and saw the value of a good marriage.

Take a leap with me now, if you will.

We just came through an election (in case you didn’t notice). The choice was clear to me: the old paradigm (Traditional) versus the new paradigm (Traditional Shmraditional: Let’s Get Real About Reality).

Single women voted overwhelmingly for Obama, because, the ladies of Fox News proclaimed, they were selfish. They thought only of themselves and their birth control pills. In their worldview, married women voted for Romney because they had children and so were concerned about the future—the future of their children.

Their children, I would point out. Not children. Their children.

This of course assumes that none of those single women who voted for Obama had children.

Traditional shmraditional: Let’s Get Real about Reality.

I spent the weekend before Thanksgiving at a retreat. Many of the participants were gay men who were in their early to mid thirties. They were born, I realized, about the time (late 1980) I began volunteering with the Hospice program at San Francisco General Hospital. Earlier that year, a small article, published deep in the first section of the San Francisco Chronicle, noted that a number of gay men had been diagnosed with a type of cancer that had previously been seen primarily in elderly Italian and Jewish men. It was Karposi’s sarcoma.

Soon after that came the articles about a mysterious gay cancer, then gay-related immune deficiency syndrome (GRID), and speculation about reasons for this phenomenon. Poppers? Drugs?

Soon after that, San Francisco General Hospital was inundated with what became the AIDS epidemic, and young gay men began showing up as hospice patients. In 1983, an AIDS ward was established at SFGH, not to isolate AIDS patients, but rather to ensure that the emotional as well as physical needs of patients were met.

It broke the model of hospital wards: the rooms that were normally reserved for staff (one for nurses, the other for physicians) became a community room where patients and staff socialized. Staff was encouraged to engage with patients, to not distance themselves, to shed tears with them, hold them when they cried, laugh with them when it was time to laugh. Staff supported each other. They were encouraged to take care of themselves, to acknowledge the toll it took on them, and take a break when needed.

This was at a time when terminally ill patients, regardless of the illness, tended to be isolated—treated as failures by the medical model that put physicians at the top of the delivery system.

I wrote an article for the hospice newsletter about the ward. Over a three-hour period I sat in the community room, listening to patients talk about their experience on the ward—friends decorated their rooms, patients became active in their care.

The AIDS epidemic raised bigger health issues, the clinical coordinator who developed the ward believed. He believed that the AIDS ward could serve as a model for how health care can be delivered.

It’s funny how memory works. I had forgotten about my visit to the AIDS ward until the retreat. The experience of this generation of gay men was far different from what was happening to their age group thirty years ago.

I was single during that time. I had no children. I don’t know whether not having children freed me to get as involved as I did with hospice. I also worked with the Gray Panthers, advocating for nursing home reform, advocating for changing the way the medical community delivered geriatric health care, standing up against age discrimination. I also worked at a center for independence of the disabled, where I became involved in advocating for removing impediments that banished people with disabilities to the backrooms of our society.

I did all of this because I was concerned about the future—mine and those who came after me.

I have stepchildren now. Our Thanksgiving was one of the smallest it has been in a number of years. Two of my stepdaughters were there, my step grandsons, my husband, and the son of a friend who now lives in Texas. Normally, I relish a large crowd, but this year, the intimacy of it comforted me. The people seated at the table loved and cared about each other. They wanted to be there.

I care about their future. Their future includes good health care, security in age, a world in which women have control over their reproductive health.

Being concerned about one’s children is natural. But to think that all one has to be concerned about is one’s own children is to doom oneself to a La Brea tar pit.

Women, real women, care about the world, as well as their families. They know that they are interdependent.

The ladies of Fox News don’t understand that. They chose to be a lady, to accept the status quo, to possess love of family, and definition of family, as a value that they and they alone possess.

Gay marriage was barely a dream thirty years ago. Gay adoption hardly on the horizon.

With this election, I think we chose shmradition over tradition. A black family lives in the White House. Gay marriage will soon, I think, be a nonissue. There will just be marriage—a commitment between two people who love and are committed to each other. Some married couples will want to raise a family, others will choose to remain childless.

The people who have taught me the most over my life are the ones who made a little trouble out there—the ones who threw tradition aside, who risked disapproval so that the human heart could experience the breadth of humans being human.

Put on your hats and gloves, straighten the seam in your hose, and go make a little trouble out there. The world is ready for the heart of a woman to forge her path in life.

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Beauty, Peace and the Grandeur of Death

’There were no human voices, no everyday sounds,’ she wrote.
‘There was only beauty, peace, and the grandeur of death.’”
From “Errand,” by Raymond Carver

My friend George died at 5:20 in the evening on Thursday December 3, 2009. He was sixty-three.

I met George when we were among the first group of volunteers for a hospice program at San Francisco General Hospital. It was early 1980.

We worked with people for whom economic circumstance made daily reality an uphill struggle. Our job was to help people through the system so their dying had some dignity. My first patient was a woman who was diagnosed with oat cell cancer just as she emerged from rehab.

At monthly support meetings we talked about our patients, exchanged ideas for how best to support them, and drew strength from each other. Death, we learned, was intimate, and we were privileged to be a part of that intimacy.

It was in this context that I became friends with George. A friendship forged in the intimacy of pausing to recognize that death has come and gone and a life has ended—what Raymond Carver refers to in his short story “Errand,” a story about Chekov’s death, as the “grandeur of death.”

Shortly after we began volunteering, what started as random articles on page fifteen of the San Francisco Chronicle about a strange trend in cancers found in young gay men, morphed into more alarming articles about a “gay cancer,” and then became the tsunami that was AIDS.

San Francisco and the General were ground zero for confronting the tsunami head on. While gay men died in shameful isolation in hospitals around the world, the General created an AIDS Ward that was revolutionary in the way it treated people who had terminal illnesses.

The room usually reserved for doctors and nurses became a place where patients and medical staff met over coffee. The emotional chasm between patient and physician or nursing staff did not exist on this ward. Since AIDS at that time was such a devastating disease, cut a swath through an otherwise young and healthy population, success was not measured in cure, but rather in how to maintain quality of life even as it was ebbing.

Staff did not draw away or reject patients as death drew near. They stayed close, opened their hearts. The system was set up to welcome compassion—including compassion for those who provided care.

The hospice program continued to serve all of the population at General as it integrated the AIDS patients, usually young, otherwise healthy men.

George was gay. As long as I knew him, he never tried to hide it. But I think that for him as well as a lot of gay men, being gay had to take on a new meaning of identity—the response to the disease was delayed because it was largely affecting gay men, who deserved to die because they committed acts that were an abomination against God.

I think it was that commitment to his sexuality as well as what he learned in those early years at General, that drew him to Maitri, first as a volunteer and then as a board member. He became the voice of conscience about who they needed to remember to serve: those who would otherwise not be served.

Perhaps because he was gay, George saw and embraced the beauty in women in a most unique way. My personal experience is this:

In the early nineties, while riding the California Street cable car he saw a woman and thought, I really like her energy. “As the car passed by her,” he said, “I realized it was you, Karen.”

For the first time in my life, I felt—desirable—not because he desired me, I knew he was gay, but because he recognized something in me that I thought was forbidden to be: a woman in charge of her own destiny.

I suspect that the reason gay men and strong independent women connect so well is that we have both had to overcome notions that our very beings were somehow a threat that might unravel social conventions and bring a society to its destruction.

Those notions are probably true. Our very beings do unravel those social conventions that bond people together through hatred for and fear of the other. By thriving, we are living proof that being authentic is more life affirming than is surrendering to hatred of yourself.

George and I kind of lost contact over the past few years. My move to Livermore put more of a physical distance between us and that seemed to also put a distance in our relationship.

In retrospect, I think my part in the distancing had to do with facing childhood demons—demons I thought I had dealt with during the thirty-four years I had been gone. These demons were not easily dissuaded. For those who followed my blog over the recent months, these were demons who were not happy about being written out of my story. Facing them was like running a gauntlet with them throwing old messages of fear and loathing at me.

My rage was fully engaged.

I have no idea how this affected my relationships. But I know that in August, 2008, when I met George for coffee shortly before he was due to check into the hospital for his hip replacement operation, I was depressed. Felt like a loser.

It was during his hospitalization for his hip replacement that George learned he had a sarcoma in his pelvis. Sarcoma, a soft tissue cancer is very nasty.

When he called to tell me his diagnosis, I asked, “How are you?”

I don’t remember his answer exactly, but it was clearly polite, designed to protect me.

“No,” I said, “How are you?”

He exploded in anger. “Oh, I can’t go there.”

He apologized for his outburst, but that kind of set the stage for our relationship over the following year. I spoke with him one other time, and he was angry with me then, too. I suspect that the awkwardness between us was born in the context of our initial friendship—a time of facing death head on.

I don’t think George was ready for that. And I could never find a way to meet him authentically while I was acutely feeling the prospect of losing him.

Finally, late this last summer, the chasm began to be bridged. But I was still on the periphery of his life. That felt peculiar to me, because of the intimacy we had had over the years.

It pained me. I feared that I had misread our relationship over the years—a fear that spilled over from the final year of my mother’s life.

George weighed heavily on my mind and heart. Then I remembered the story he had told me about being on the cable car, and wrote a draft of a poem that came out of that memory.

When I spoke to him the Friday before Thanksgiving, he seemed like the George I had known over the years. Whatever shield he had put up to cope with his illness and impending death had come down, as had my fear of misinterpreting our relationship.

We found a project to work on together—preparing for publication the blog he had posted that tracked his journey from diagnosis to search for wellness to acceptance that he would not recover from the illness to his preparation for death.

I prepared a design for the publication and sent it to him. The next time we talked, it was clear that he was starting to drift. “I know I haven’t been there for you, Karen,” he said.

I assured him that he had always been there for me.

It occurred to me that in this brief exchange, we had acknowledged the distance that had occurred between us and that it didn’t matter. What mattered was the connection, and that distance had not broken it, only covered it in the fog of everyday living.

I don’t regret the distance—our lives just took us in directions that created the fog. We each had to pay attention to what our lives demanded.

Maitri was home to George in his final days. His request was that following his death, he lie in repose there for three days. His request was based, as far as I know, on several traditions that believe that the soul stays connected to the body for three days after death.

I received the call about George’s passing on Thursday evening as we were having dinner with our friend, Rob. He had come over for dinner and to play music with Tom. The two (Tom on piano, Rob on saxaphone) played for me, their music carrying me through the first shock of grief and loss.

I woke on Friday and knew that it was important for me to sit with George.

The staff had prepared his body, washing it with water scented with cinnamon and vanilla. He looked very natural lying in the bed, a soft green comforter covering him. His mouth, as rigor set in, had formed the beginning of a smile. He looked as if he was at peace with himself.

Others had come to sit with him as well. As we spoke, I kept expecting him to open his eyes and join us, felt that in many ways he was there with us.

I will miss George. I want more. I want more of those times that George and I talked on the phone, met over dinner, went to the symphony together. We came away each time energized, with new insights about the course of our lives.

I want more.

One of the gifts George gave me was to help me send my demons scurrying. His dying forced me to see that life has an expiration date—and that it was time for me to embrace my life, instead of keeping it at arms length through guilt and shame. Without guilt and shame to nourish them, demons quickly fade away.

It feels strange to have someone who shared a particular moment in a time of my life gone. George was a touchstone. I fully expected that we would grow old together, sitting on the park bench like bookends.

I carry those memories of times we shared alone now.

I believe that, as a culture, if we can figure out how to have compassionate birth and compassionate death, that everything else will fall into place.

George did his part through his actions in life and his dying to show us what compassionate death means.

And on Friday, as I sat with George, there was only beauty, peace, and the grandeur of death.