August 29th, 2009:
Over the past couple of weeks, I've been reading two divergent autobiographies: My Life in France, by Julia Child and A Tale of Love and Darkness by Amos Oz. It's interesting to meander through the lives of these two very different people while I'm also creating this blog which has as it's foundation, the autobiography of the end of my life.
Julia's story is about her liberation by the sensory. She's forty, a virgin and marries a man who's steeped in the pleasures of food, wine, the arts, the flesh. He understands that she has a deep ability to experience pleasure, and their early story is about how he awakens her at a fundamental level of savoring, tasting, smelling, evaluating her experience based what her body tells her. Once awakened, she trusts her destiny and works extra diligently to learn the techniques needed to purchase the best ingredients and learn the cooking skills so that she can replicate the sensational food that's available in French restaurants whether exalted or humble. Cooking leads to writing leads to her ability to project enthusiasm and teach cooking on television. Julia learns that her deepest passions are gifts that can be shared, and she is very generous. Her unfolding and expansion as a transmitter not only of French cuisine but also of a palate that appreciates culture is foreground to the dour Pasadena Republicanism of her father, Richard Nixon, and the turmoil that swept through the Cold War State Department that employed her husband. Fortunately, pleasure and good eating wins in this struggle. At least for the people who read, watch, listen to and cook with Julia.
Amos Oz has a more harrowing cultural legacy weighted onto his shoulders from a young age. Born into a family that fled Northern Europe in the mid-30's and moved to Palestine as part of the Zionist dream, the parents, relatives and friends that young Amos grows up in were vastly cultured, recently poor and totally unprepared for moving as assimilated or practicing Jews into the desert landscape of the Eastern Mediterranean. At the time of his youth, the Holocaust is in full roar although the dimensions of this disaster aren't fully apparent in the early 1940's. As a young man, he comes of age during the 1946 War of Independence and the creation of the state of Israel, a return of homeland after thousands of years of Diaspora. Oz's work traces how, as a child and adolescent, he navigated the deeply eccentric habits of his neighbors and family. The various levels of suffering by people unable to cope with emigration to Israel and yet with no plans to move anywhere else constellate around the ultimate rejection of living: at age 12 his mother commits suicide. The story of these European Jews in the first and second generation, carries the story of how Israel was populated by people whose hopes for a better life were often dashed by the experience of actually living in the real city of Jerusalem, not the golden city of Zionist dreams. As he grows away from his family and becomes part of the struggle to establish Israel, Oz also matures into a man who has witnessed the destruction of his family without being destroyed himself.
These two diverse and powerful authors work with different legacies of oppression to find a better way in the world. They embody cultural transformation. Their inner needs to have lives that include rejoicing and freedom to make choices push their destinies. It wasn't until this evening that I found myself venturing some comparisons between their achievements and this blog. There's the common ground of autobiography. My legacy is that after doing end-of-life care giving for some thirty years, I'm now facing the end of my life. That's the focus of the blog: how do I use the life I have remaining to prepare for dying? And what's being released in this awareness of less time to live? How is my life changing? What am I doing differently?
Those questions carry not only my own decisions and hopes, but they are set against a background of grim fear about the fact of dying. At this point, the blog becomes an invisible net where everyone who reads this starts to add their issues of apprehension, unfinished business, awe, denial, family legacy of dealing with death and much, much more. That's outside the perimeter of the blog but just outside. For everyone, the blog triggers their seismic reactions to death.
I see my end-of-life autobiography as holding how I've been inspired to express myself at a time when many people assume that expression shuts down. Today, my friend Philip was visiting and he said, "I admire your faith." He certainly wasn't referring to a conventional religious faith of any sort on my part. What I understood him to say was: You have trust in this process. You trust your body. You trust the larger universe that holds us. It was an honor to hear this, and I think that's the direction of this blog: it's about how I move out of this life with joy and all the other feelings that arise.
Saturday, August 29, 2009
Thursday, August 27, 2009
August 27th, 2009:
For the past week or so, walking has become increasingly difficult. On Monday, as I began walking down Market St to lunch at the Ferry Plaza, my hip was really not wanting to move in any direction. It hurt. I tried walking slower, but still, the effort seemed larger and more ponderous than I'd experienced before. These days I always carry morphine in case I need break through pain relief. On Monday, I didn't take the morphine, I just kept walking. Bad idea. The pain did not let up for a couple of hours. By then, I had dosed myself with four morphine sulphates and presently, I felt a lot better. For those who have never taken morphine before, I can attest that it does not create dopiness. At least not for me.
This Wednesday, Eileen Lemus and I were at the UCSF Oncology Clinic for the first appointment with Dr. Jahan in some seven weeks. The only thing I had to report was the difficulty in walking and the increasing role of morphine for some days. He was totally supportive of taking morphine as much as needed. As he said: "That's what it's for." Meaning, immediate pain relief, when required. So, I will work with myself to be more enthusiastic about taking the pills. I know how much I like the results.
Additionally, Dr. Jahan asked if I'd be interested in talking with Dr. Alex Gottshalk, a radiologist who I had met last Fall when we were originally considering surgery for my pelvic tumor. "Radiology might shrink some of the tumor?" I asked. "And give you several months of relief," Dr. Jahan added.
Well sure! What possible harm in talking about getting more months of walking? That possibility of prophylactic radiation raised my spirits immediately. Dr. Jahan cautioned that radiology in the perineum and pelvis is extremely touchy because that part of the body is packed with vital organs and passages. I would not want to burn any tissue that would cause discomfort or damage during the last months of my life. Still, Dr. Gottshalk is a real pro. He and the other surgeons originally decided not to operate on me because the odds were too great that vital pelvic organs would be either removed or compromised. We are talking tissue that you don't want to try living without such as the prostate, the rectum, urethra, bladder, etc. It's not that those organs are infected with cancer, but they are so close to the cancer that the doctors would want to take them or parts of them as well. My quality of life would plummet. Don't want that.
This is the first time in six months that I've considered medical treatment, and frankly, I'm excited. I'll keep you posted about the visit to Dr. Gottshalk. For sure there will be new scans to determine how much the cancer has grown. Additionally, there will be the doctor's evaluation of what parts of the tumor he might radiate, which parts not. Or, as happened last Fall, he may send me home with no plan of tumor reduction. That could happen as well. But the hope to walk for more months is a powerful lure. Yes, yes, let's talk.
For the past week or so, walking has become increasingly difficult. On Monday, as I began walking down Market St to lunch at the Ferry Plaza, my hip was really not wanting to move in any direction. It hurt. I tried walking slower, but still, the effort seemed larger and more ponderous than I'd experienced before. These days I always carry morphine in case I need break through pain relief. On Monday, I didn't take the morphine, I just kept walking. Bad idea. The pain did not let up for a couple of hours. By then, I had dosed myself with four morphine sulphates and presently, I felt a lot better. For those who have never taken morphine before, I can attest that it does not create dopiness. At least not for me.
This Wednesday, Eileen Lemus and I were at the UCSF Oncology Clinic for the first appointment with Dr. Jahan in some seven weeks. The only thing I had to report was the difficulty in walking and the increasing role of morphine for some days. He was totally supportive of taking morphine as much as needed. As he said: "That's what it's for." Meaning, immediate pain relief, when required. So, I will work with myself to be more enthusiastic about taking the pills. I know how much I like the results.
Additionally, Dr. Jahan asked if I'd be interested in talking with Dr. Alex Gottshalk, a radiologist who I had met last Fall when we were originally considering surgery for my pelvic tumor. "Radiology might shrink some of the tumor?" I asked. "And give you several months of relief," Dr. Jahan added.
Well sure! What possible harm in talking about getting more months of walking? That possibility of prophylactic radiation raised my spirits immediately. Dr. Jahan cautioned that radiology in the perineum and pelvis is extremely touchy because that part of the body is packed with vital organs and passages. I would not want to burn any tissue that would cause discomfort or damage during the last months of my life. Still, Dr. Gottshalk is a real pro. He and the other surgeons originally decided not to operate on me because the odds were too great that vital pelvic organs would be either removed or compromised. We are talking tissue that you don't want to try living without such as the prostate, the rectum, urethra, bladder, etc. It's not that those organs are infected with cancer, but they are so close to the cancer that the doctors would want to take them or parts of them as well. My quality of life would plummet. Don't want that.
This is the first time in six months that I've considered medical treatment, and frankly, I'm excited. I'll keep you posted about the visit to Dr. Gottshalk. For sure there will be new scans to determine how much the cancer has grown. Additionally, there will be the doctor's evaluation of what parts of the tumor he might radiate, which parts not. Or, as happened last Fall, he may send me home with no plan of tumor reduction. That could happen as well. But the hope to walk for more months is a powerful lure. Yes, yes, let's talk.
Wednesday, August 26, 2009
August 26th, 2009:
In the past week, I've completed two major milestones on my project plan. This may sound a bit corporate, but knowing how to organize tasks is a skill that I learned in the workplace, and I'm happy that it serves me. The first effort was hosting the party for some 21 people at Maitri, catered by the chefs at Boulette's Larder. The second big completion was shooting the video of my final words to all my friends. Both events brought me new challenges and the resulting excitement of getting the job done.
To organize the dinner, I first needed to present my concept to the owner's of Boulette's. Part of their business model includes hosting private dinners at the restaurant for up to 24 people. This is the only time they serve dinner. I wanted them to do the cooking, but I didn't want to invite all my guests to the Ferry Plaza, much as I love the restaurant's location. A big part of my agenda was to get people who had never been to Maitri across the threshold. So, I made my presentation and explained that I'd be moving in to Maitri for my final days of health care. They responded. They understood my agenda. They agreed to bring their expertise across town and cook on site.
Then, I sat down with Amaryll, the resident genius of Boulette's cuisine to plan the menu. Doing my best to channel the dining spirit if not the food knowledge of my friend Margaret Hess, we started at the center of the meal. "What would you like for the entrees?" Amaryll asked. Scanning back through my palate's Rolodex of wonderful lunches, my first request was ivory Alaska King salmon. That brightened her up considerably. "Good! It's light, delicious and perfect for a summer menu. Plus I should be able to get it although it's the end of the season." Crossing my fingers that I wouldn't have to explain to my guests that the ivory salmon wasn't available, we moved forward. This time, Amaryll sang praises of the Becker Lane pork loin that she had access to along with Chez Panisse in Northern California. I'd been wow-ed by how savory this meat was in a salad not more than a week prior. Good, we had our foundation food. Moving to the beginning of the meal, we agreed to start with the best heirloom tomatoes topped with buratta so fresh it virtually drooped off the fork. Then the supporting vegetables and sauces for the entrees followed by citrus meringue tarts for dessert. A meal of intense summer flavors but without undue weight. Menu planning done in under 20 minutes.
The other part of the preparation involved meeting Amaryll at Maitri so that she could look at the kitchen and know that the space would work for her. She is such a pro. I walked her back to the Maitri kitchen and as she approached, she announced, "Oh, sure! This will be just fine." When I asked her how she knew that, she smiled and said, "Great stove, good prep areas. That's all I need. Plus someone to wash the dishes." And that was the bulk of the effort that I expended for organizing the dinner.
With the video project, my labor involved writing the script and then translating it for voice. Once the camera was rolling, I needed to read text on the teleprompter while translating my voice into a conversational tone. Amazingly, all of these learning curves were absorbed and accomplished.
Now, I look forward to a pause in big tasks for a while. One of the things that's been true of me for many years is that I identify with the work I do. Work has given me purpose, meaning and validity. However, I am more than the tasks I sign on for. And one of the best ways for me to explore and experience my non-work self is to lighten up on all my doing. I was talking with my therapist about this yesterday. I told her how much I wanted to steer clear of big projects for a while. There's still plenty of effort and organization that I bring to everyday life. I continue to go to work (for two more weeks!!), I still brush my teeth, cook, clean, etc. I'm not walking away from from the maintenance tasks that can be so detailed and worthwhile. But there has been a lot of creative effort recently, and I'm ready for a break.
In the past week, I've completed two major milestones on my project plan. This may sound a bit corporate, but knowing how to organize tasks is a skill that I learned in the workplace, and I'm happy that it serves me. The first effort was hosting the party for some 21 people at Maitri, catered by the chefs at Boulette's Larder. The second big completion was shooting the video of my final words to all my friends. Both events brought me new challenges and the resulting excitement of getting the job done.
To organize the dinner, I first needed to present my concept to the owner's of Boulette's. Part of their business model includes hosting private dinners at the restaurant for up to 24 people. This is the only time they serve dinner. I wanted them to do the cooking, but I didn't want to invite all my guests to the Ferry Plaza, much as I love the restaurant's location. A big part of my agenda was to get people who had never been to Maitri across the threshold. So, I made my presentation and explained that I'd be moving in to Maitri for my final days of health care. They responded. They understood my agenda. They agreed to bring their expertise across town and cook on site.
Then, I sat down with Amaryll, the resident genius of Boulette's cuisine to plan the menu. Doing my best to channel the dining spirit if not the food knowledge of my friend Margaret Hess, we started at the center of the meal. "What would you like for the entrees?" Amaryll asked. Scanning back through my palate's Rolodex of wonderful lunches, my first request was ivory Alaska King salmon. That brightened her up considerably. "Good! It's light, delicious and perfect for a summer menu. Plus I should be able to get it although it's the end of the season." Crossing my fingers that I wouldn't have to explain to my guests that the ivory salmon wasn't available, we moved forward. This time, Amaryll sang praises of the Becker Lane pork loin that she had access to along with Chez Panisse in Northern California. I'd been wow-ed by how savory this meat was in a salad not more than a week prior. Good, we had our foundation food. Moving to the beginning of the meal, we agreed to start with the best heirloom tomatoes topped with buratta so fresh it virtually drooped off the fork. Then the supporting vegetables and sauces for the entrees followed by citrus meringue tarts for dessert. A meal of intense summer flavors but without undue weight. Menu planning done in under 20 minutes.
The other part of the preparation involved meeting Amaryll at Maitri so that she could look at the kitchen and know that the space would work for her. She is such a pro. I walked her back to the Maitri kitchen and as she approached, she announced, "Oh, sure! This will be just fine." When I asked her how she knew that, she smiled and said, "Great stove, good prep areas. That's all I need. Plus someone to wash the dishes." And that was the bulk of the effort that I expended for organizing the dinner.
With the video project, my labor involved writing the script and then translating it for voice. Once the camera was rolling, I needed to read text on the teleprompter while translating my voice into a conversational tone. Amazingly, all of these learning curves were absorbed and accomplished.
Now, I look forward to a pause in big tasks for a while. One of the things that's been true of me for many years is that I identify with the work I do. Work has given me purpose, meaning and validity. However, I am more than the tasks I sign on for. And one of the best ways for me to explore and experience my non-work self is to lighten up on all my doing. I was talking with my therapist about this yesterday. I told her how much I wanted to steer clear of big projects for a while. There's still plenty of effort and organization that I bring to everyday life. I continue to go to work (for two more weeks!!), I still brush my teeth, cook, clean, etc. I'm not walking away from from the maintenance tasks that can be so detailed and worthwhile. But there has been a lot of creative effort recently, and I'm ready for a break.
Tuesday, August 25, 2009
August 25th, 2009:
Today, Beth Pielert, my personal filmmaker, and her crew came over to shoot the video to be shown at my memorial service. I had worked on the script for five or six weeks, drafting and enlarging the text until it seemed comprehensive. The intention of the film is to tell people what I feel that I've learned in this life. Also, why I wanted to learn it. What old habits and beliefs I wanted to unlearn, and new connections that I wanted to make.
I could not have written this material a year ago, nor would it have occurred to me to launch such a project. A year ago, my only problem was getting through my upcoming right hip replacement. But in the past few months, I've taken a radically different view of my mortality as well as my understanding of who I am and what I incarnated to accomplish. Given this shift in identity, the script for the video seemed easy to write.
However, once the script was on the page, it was still written narrative; meaning, people don't talk that way, at least I don't. Then the task became to convert the writing into spoken sound. This involved reading the sentences out loud. When text sounded clunky and awkward, I'd rewrite it to accommodate the voice. After a few passes, the new script had a vocal life that carried the context but didn't sound like I was reading from a book.
Three weeks ago, Beth came to my apartment and explained how the filming would proceed. She suggested that I read my material from a teleprompter which would be a new experience for me. I quickly agreed since another option was to memorize three plus pages. Another option was to free-form my talk based on key concepts; that didn't feel like it had enough structure for me. With the teleprompter, I agreed to read the material from start to finish, twice. One reading in close-up and the second reading at a distance. Additionally, she'd take the camera through my apartment, filming the rooms with their glass, textiles, rugs, etc. Being a novice to film, it came as a surprise to me to realize that shooting the raw film was step one. In step two, she'd edit the film to do voice over, selecting the best angle and the most compelling reading voice and other techniques that make her a talented filmmaker.
At 9:00 a.m. this morning, the crew arrived and lugged up the cables, lights, monitors, voice equipment, cameras etc. The set up took longer than the actual filming, but that's because Beth had a very clear idea of what she wanted for sound, clarity of image and other details that I don't even know about. It was fun to hear the crew speaking the in foreign language of film; so many terms, expressions, jargon.
Then, time to start rolling. Laura who ran the teleprompter did a very fine job of making sure that I had plenty of text to see on the screen. My task was to avoid reading the text as if it was a book. Instead, I had to learn in a flash how to make the text sound as if I was speaking conversationally. Here's how that was accomplished. In front of me was the teleprompter screen with the scrolling script. Behind the teleprompter was Beth, working the camera. But I couldn't see Beth. All I could see was the teleprompter screen. "Talk directly to your friends," Beth and Laura advised. "Imagine that you're speaking directly to people you know and love. You wrote this text from your heart. Connect your heart to their hearts."
And it worked! As I started to read, I sensed people on the other side of the teleprompter. I didn't consciously select them, but there they'd appear for a while, then they'd fade and someone else would take their place for me to tell my story to. There was never a crowd, usually no more than two or three at once. It amazed me. Some of my listeners had died years ago, others were at the Maitri dinner last week. And so it went, a slowly moving parade of people I love who stopped in to listen as I told my story. As I connected with my deepest friends, my voice calmed, the words became clearer and easier to understand. The delivery worked. After two passes through the text, Beth announced that she was not only satisfied, she was happy with the results. "You got me toward the end, George," she said. "I had tears."
So, almost an hour of raw footage now sits in the camera. Next stop: editing, the cutting room floor and the integrated video. What an exciting project this has become.
Today, Beth Pielert, my personal filmmaker, and her crew came over to shoot the video to be shown at my memorial service. I had worked on the script for five or six weeks, drafting and enlarging the text until it seemed comprehensive. The intention of the film is to tell people what I feel that I've learned in this life. Also, why I wanted to learn it. What old habits and beliefs I wanted to unlearn, and new connections that I wanted to make.
I could not have written this material a year ago, nor would it have occurred to me to launch such a project. A year ago, my only problem was getting through my upcoming right hip replacement. But in the past few months, I've taken a radically different view of my mortality as well as my understanding of who I am and what I incarnated to accomplish. Given this shift in identity, the script for the video seemed easy to write.
However, once the script was on the page, it was still written narrative; meaning, people don't talk that way, at least I don't. Then the task became to convert the writing into spoken sound. This involved reading the sentences out loud. When text sounded clunky and awkward, I'd rewrite it to accommodate the voice. After a few passes, the new script had a vocal life that carried the context but didn't sound like I was reading from a book.
Three weeks ago, Beth came to my apartment and explained how the filming would proceed. She suggested that I read my material from a teleprompter which would be a new experience for me. I quickly agreed since another option was to memorize three plus pages. Another option was to free-form my talk based on key concepts; that didn't feel like it had enough structure for me. With the teleprompter, I agreed to read the material from start to finish, twice. One reading in close-up and the second reading at a distance. Additionally, she'd take the camera through my apartment, filming the rooms with their glass, textiles, rugs, etc. Being a novice to film, it came as a surprise to me to realize that shooting the raw film was step one. In step two, she'd edit the film to do voice over, selecting the best angle and the most compelling reading voice and other techniques that make her a talented filmmaker.
At 9:00 a.m. this morning, the crew arrived and lugged up the cables, lights, monitors, voice equipment, cameras etc. The set up took longer than the actual filming, but that's because Beth had a very clear idea of what she wanted for sound, clarity of image and other details that I don't even know about. It was fun to hear the crew speaking the in foreign language of film; so many terms, expressions, jargon.
Then, time to start rolling. Laura who ran the teleprompter did a very fine job of making sure that I had plenty of text to see on the screen. My task was to avoid reading the text as if it was a book. Instead, I had to learn in a flash how to make the text sound as if I was speaking conversationally. Here's how that was accomplished. In front of me was the teleprompter screen with the scrolling script. Behind the teleprompter was Beth, working the camera. But I couldn't see Beth. All I could see was the teleprompter screen. "Talk directly to your friends," Beth and Laura advised. "Imagine that you're speaking directly to people you know and love. You wrote this text from your heart. Connect your heart to their hearts."
And it worked! As I started to read, I sensed people on the other side of the teleprompter. I didn't consciously select them, but there they'd appear for a while, then they'd fade and someone else would take their place for me to tell my story to. There was never a crowd, usually no more than two or three at once. It amazed me. Some of my listeners had died years ago, others were at the Maitri dinner last week. And so it went, a slowly moving parade of people I love who stopped in to listen as I told my story. As I connected with my deepest friends, my voice calmed, the words became clearer and easier to understand. The delivery worked. After two passes through the text, Beth announced that she was not only satisfied, she was happy with the results. "You got me toward the end, George," she said. "I had tears."
So, almost an hour of raw footage now sits in the camera. Next stop: editing, the cutting room floor and the integrated video. What an exciting project this has become.
Saturday, August 22, 2009
August 22nd, 2009:
After the first hour at the Maitri dinner on Thursday night, after people had had a chance to meet each other, take the tour, watch the video and move into the dining room for dinner, I took a moment to welcome everyone. It wasn't a planned speech that I gave, although I knew where I wanted to start.
"I want to welcome all of you this evening to Maitri. I've invited you here because I want you to have an opportunity to visit my new home. I'm not moving in yet, but I will move in. It's a wonderful place, and it matters to me that you experience these rooms now, before I become a resident."
And then, I went off in a direction that still surprises me and has given me a lot to think about. The rest of the welcome was totally unplanned, but expressed a part of me that wanted voice.
"When I bought the Glen Ellen property with Ann, I looked forward to remodeling my home there. I had never crafted spaces and rooms. I'm used to decorating rooms, but shaping space is different. I found that I have a hunger to do this. It's a whole new direction of creativity for me. At some point in feeling the remorse of knowing that I would never alter the Glen Ellen house to the vision I had designed, I realized that over a decade ago, I had helped to architect the plans for Maitri. I sat on the Maitri committee that worked with the architectural firm to define the blueprints for our new residence. I went through the agony of realizing that we couldn't have a roof garden because we couldn't afford a quarter million dollars for an elevator to go up another story. I participated in the brilliant agreement to shape all rooms around a double atrium bisected by a diagonal glass hallway. I agreed with the design that brought light into every resident's room. That's part of the genius of Maitri, there's lots of light."
As I found myself getting into the history of being on Maitri's architecture committee, I could feel a holographic shape of the residence in my chest, sitting comfortably inside me like a little scale model of the actual building. All of a sudden, it seemed very important to have had an active role in building my final home. Why? Somehow, knowing that I worked on Maitri's floor plan makes it easier to live here. I helped configure the place, and now it's like being in my body which I cherish.
One of the reasons this is so surprising to me is that I've never been terribly interested in building my own place until fairly recently. My first few years growing up in a suburb of Portland Oregon was followed by moving into the large country house where my parents resided for over fifty years. Although we took great care of this house, we never remodeled, added on, subtracted or did anything other than maintain its good condition. When I moved to San Francisco, I lived in apartments and again, took good care of them but never added a coat of paint in the years I lived in one place or another. Finally, in my current apartment, I did paint the walls the whitest of whites to set off the art work and installed track lighting. I realized that I felt comfortable living in an art gallery and that's what I got.
But with the Glen Ellen property, I needed to make decisions about improvements. I read a couple of books that said: talk to the place. Ask the ground and the walls and the roof and the windows what they wanted to become. Work with the building and listen to its yearnings. What a fascinating process! After my cancer diagnosis, I put aside any plans to improve the house before my death.
But there, waiting in the background, was the work I had already done with Maitri and the architects who guided our planning effort. I had already been part of a group that spoke to an undefined space. We had already moved bedroom spaces here and there for maximum effectiveness. We had worked with numbers of bathrooms, location of offices, size of dining room.
As I reflect on the deep importance of moving into a place that I've helped design, it's clear to me that there are some odd features that now make total sense. Foremost, it didn't occur to me that I'd be moving into a group living residence this early in my life. I didn't plan on moving into a residence dedicated to people with HIV. I had no plan to scale down to a small bedroom and jettison most of my rugs, glass, photographs, textiles, clothes, paintings. And yet, I'm delighted with all of these changes. I look forward to moving out of my art gallery into a more quiet zone. Yes, there will be some art but not a lot. Plus, I'll have new focus in my new home. There will be people all around. I'll have a TV and a DVD player for the first time in my life.
But most important at this point is the sense that I am living in a place that I helped to envision and build. That has huge consequence for me, and I had no idea of any of this until I was standing up in the dining room at Maitri last Thursday evening, welcoming people to my new home.
After the first hour at the Maitri dinner on Thursday night, after people had had a chance to meet each other, take the tour, watch the video and move into the dining room for dinner, I took a moment to welcome everyone. It wasn't a planned speech that I gave, although I knew where I wanted to start.
"I want to welcome all of you this evening to Maitri. I've invited you here because I want you to have an opportunity to visit my new home. I'm not moving in yet, but I will move in. It's a wonderful place, and it matters to me that you experience these rooms now, before I become a resident."
And then, I went off in a direction that still surprises me and has given me a lot to think about. The rest of the welcome was totally unplanned, but expressed a part of me that wanted voice.
"When I bought the Glen Ellen property with Ann, I looked forward to remodeling my home there. I had never crafted spaces and rooms. I'm used to decorating rooms, but shaping space is different. I found that I have a hunger to do this. It's a whole new direction of creativity for me. At some point in feeling the remorse of knowing that I would never alter the Glen Ellen house to the vision I had designed, I realized that over a decade ago, I had helped to architect the plans for Maitri. I sat on the Maitri committee that worked with the architectural firm to define the blueprints for our new residence. I went through the agony of realizing that we couldn't have a roof garden because we couldn't afford a quarter million dollars for an elevator to go up another story. I participated in the brilliant agreement to shape all rooms around a double atrium bisected by a diagonal glass hallway. I agreed with the design that brought light into every resident's room. That's part of the genius of Maitri, there's lots of light."
As I found myself getting into the history of being on Maitri's architecture committee, I could feel a holographic shape of the residence in my chest, sitting comfortably inside me like a little scale model of the actual building. All of a sudden, it seemed very important to have had an active role in building my final home. Why? Somehow, knowing that I worked on Maitri's floor plan makes it easier to live here. I helped configure the place, and now it's like being in my body which I cherish.
One of the reasons this is so surprising to me is that I've never been terribly interested in building my own place until fairly recently. My first few years growing up in a suburb of Portland Oregon was followed by moving into the large country house where my parents resided for over fifty years. Although we took great care of this house, we never remodeled, added on, subtracted or did anything other than maintain its good condition. When I moved to San Francisco, I lived in apartments and again, took good care of them but never added a coat of paint in the years I lived in one place or another. Finally, in my current apartment, I did paint the walls the whitest of whites to set off the art work and installed track lighting. I realized that I felt comfortable living in an art gallery and that's what I got.
But with the Glen Ellen property, I needed to make decisions about improvements. I read a couple of books that said: talk to the place. Ask the ground and the walls and the roof and the windows what they wanted to become. Work with the building and listen to its yearnings. What a fascinating process! After my cancer diagnosis, I put aside any plans to improve the house before my death.
But there, waiting in the background, was the work I had already done with Maitri and the architects who guided our planning effort. I had already been part of a group that spoke to an undefined space. We had already moved bedroom spaces here and there for maximum effectiveness. We had worked with numbers of bathrooms, location of offices, size of dining room.
As I reflect on the deep importance of moving into a place that I've helped design, it's clear to me that there are some odd features that now make total sense. Foremost, it didn't occur to me that I'd be moving into a group living residence this early in my life. I didn't plan on moving into a residence dedicated to people with HIV. I had no plan to scale down to a small bedroom and jettison most of my rugs, glass, photographs, textiles, clothes, paintings. And yet, I'm delighted with all of these changes. I look forward to moving out of my art gallery into a more quiet zone. Yes, there will be some art but not a lot. Plus, I'll have new focus in my new home. There will be people all around. I'll have a TV and a DVD player for the first time in my life.
But most important at this point is the sense that I am living in a place that I helped to envision and build. That has huge consequence for me, and I had no idea of any of this until I was standing up in the dining room at Maitri last Thursday evening, welcoming people to my new home.
Tuesday, August 18, 2009
August 18th, 2009:
On Thursday evening, I'm hosting a dinner at Maitri for 21 people most of whom have never been to the residence. As my life has moved from middle age to later, I have increasingly stepped back from entertaining other than having maximum two other people at my apartment. I don't host dinners although I love to cook. I don't invite a group over for stand up visiting. My excuse has been no formal dining room, but that sure doesn't get in the way of other people I know.
While I was growing up, my family enjoyed party-giving. My Mom was a fine cook and whether it was outdoors in the summer or indoors through the rainy winters, she loved to invite other families or groups over for dinner. And we often were invited to dinners and occasions with other families. During my group living with Stu and Cris in Portland we did a lot of our communal bonding over food and used the meals to explore the Pacific Northwest bounty: chantrelle mushrooms, fresh salmon, etc. Plus, we started a tradition of legendary Seders for Passover. Food and intimacy were well established for me.
However, when I moved to San Francisco, I scaled down in the numbers of people I invited into my various apartments. That's when the one to two person limit started. Plus, I got swept up by the tsunami of exciting restaurants on both sides of the Bay. It was much more gratifying and theatrical to order off the menu at Chez Panisse or Masa's than anything I was likely to muster at home. So cooking became a private event and my talents were focused on that most difficult of accomplishments: cooking for one.
As an adult, I've always felt comfortable in the kitchen. I love the prep, touching everything and smelling it before heat changes the texture and aroma. I typically review a recipe the first time I cook something and that's the last time I follow directions. Once I've cooked something, it's in my body memory and I start improvising. As a result, I am both reasonably fearless and highly limited; meaning, I don't look at a lot of new recipes so my repertoire is held back. I have good manual skills, but have never taken the next step of going to cooking school where I could really expand my dexterity with food and utensils.
So out of the blue about two months ago, my friend David Goldsmith suggested that I host a party where I get all of my friends together. He said that he'd been hearing about all these people I know for years, but never met any of them. As my health declines, he wanted to know who else would be involved in my care. I have to say, my response to this was really churlish. I thought, "Sheesh, it's not my job to organize a support group. I'm moving into Maitri where I'll be cared for. It's everyone's responsibility to have their own support. I'm busy. I don't wanna." Something like that. I was not receptive to his suggestion.
A few nights later, I was having dinner with my friend Traci Teraoka who I'd served with on the Maitri Board. "If you're going to move into Maitri, why don't you have a dinner there for your friends before that happens?" she suggested. I listened and thought, "What's knocking on my door here? Two pushes for creating a group in one week." Although I eagerly initiate one-on-one contact with people and have a vigorous schedule of lunches and dinners, I have never exercised my talents for gathering groups together. For groups, I expect to be invited.
As David's request rubbed against Traci's suggestion, I rethought my posture. Why not do something new? If I were to have a dinner what would be the pretext? And who would I invite to cook the meal? Answers were immediate. I wanted to mix two groups of friends. First group were my inner core of caregivers such as Eileen Lemus, Ed Joy and Gaetano, people who I've asked to handle my medical and financial affairs. The second group were people that I wanted to visit me at Maitri once I move in, but who had probably not been to the residence. The dinner would be a celebratory time prior to deep decline in my health. We would be at Maitri but none of us would be overwhelmed with my illness. Everyone could hopefully step into the beautiful environment, enjoy the vibes and not be overly stressed. As for the chef--no contest--I wanted to ask Amaryll Schwertner whose cooking at Boulette's Larder had been knocking me out for the past two years.
And so it has come to pass. This Thursday, 21 of my friends many old, some new will converge at Maitri for an hour of stand-up meeting. Then we'll proceed into the dining room for a very fine meal. I would have invited many more people, but the tables had a limited number of seats. I am looking forward to this evening in so many ways. I know from personal experience that when an interesting collection of people gather, chemistry happens. David will get what he wants. I'll have fun. Other people will have a chance to say, "Oh, I've heard a lot about you..." And off we'll go.
I was talking with my therapist today about the creativity that has been surging in me since I started to accept my terminal diagnosis. I've been on the Maitri Board for many years now, and I've been to many Maitri dinners. During all those years, I've adamantly refused to organize a dinner myself. Didn't want to do that at all. Now, I've changed my posture completely and feel wonderful for it.
On Thursday evening, I'm hosting a dinner at Maitri for 21 people most of whom have never been to the residence. As my life has moved from middle age to later, I have increasingly stepped back from entertaining other than having maximum two other people at my apartment. I don't host dinners although I love to cook. I don't invite a group over for stand up visiting. My excuse has been no formal dining room, but that sure doesn't get in the way of other people I know.
While I was growing up, my family enjoyed party-giving. My Mom was a fine cook and whether it was outdoors in the summer or indoors through the rainy winters, she loved to invite other families or groups over for dinner. And we often were invited to dinners and occasions with other families. During my group living with Stu and Cris in Portland we did a lot of our communal bonding over food and used the meals to explore the Pacific Northwest bounty: chantrelle mushrooms, fresh salmon, etc. Plus, we started a tradition of legendary Seders for Passover. Food and intimacy were well established for me.
However, when I moved to San Francisco, I scaled down in the numbers of people I invited into my various apartments. That's when the one to two person limit started. Plus, I got swept up by the tsunami of exciting restaurants on both sides of the Bay. It was much more gratifying and theatrical to order off the menu at Chez Panisse or Masa's than anything I was likely to muster at home. So cooking became a private event and my talents were focused on that most difficult of accomplishments: cooking for one.
As an adult, I've always felt comfortable in the kitchen. I love the prep, touching everything and smelling it before heat changes the texture and aroma. I typically review a recipe the first time I cook something and that's the last time I follow directions. Once I've cooked something, it's in my body memory and I start improvising. As a result, I am both reasonably fearless and highly limited; meaning, I don't look at a lot of new recipes so my repertoire is held back. I have good manual skills, but have never taken the next step of going to cooking school where I could really expand my dexterity with food and utensils.
So out of the blue about two months ago, my friend David Goldsmith suggested that I host a party where I get all of my friends together. He said that he'd been hearing about all these people I know for years, but never met any of them. As my health declines, he wanted to know who else would be involved in my care. I have to say, my response to this was really churlish. I thought, "Sheesh, it's not my job to organize a support group. I'm moving into Maitri where I'll be cared for. It's everyone's responsibility to have their own support. I'm busy. I don't wanna." Something like that. I was not receptive to his suggestion.
A few nights later, I was having dinner with my friend Traci Teraoka who I'd served with on the Maitri Board. "If you're going to move into Maitri, why don't you have a dinner there for your friends before that happens?" she suggested. I listened and thought, "What's knocking on my door here? Two pushes for creating a group in one week." Although I eagerly initiate one-on-one contact with people and have a vigorous schedule of lunches and dinners, I have never exercised my talents for gathering groups together. For groups, I expect to be invited.
As David's request rubbed against Traci's suggestion, I rethought my posture. Why not do something new? If I were to have a dinner what would be the pretext? And who would I invite to cook the meal? Answers were immediate. I wanted to mix two groups of friends. First group were my inner core of caregivers such as Eileen Lemus, Ed Joy and Gaetano, people who I've asked to handle my medical and financial affairs. The second group were people that I wanted to visit me at Maitri once I move in, but who had probably not been to the residence. The dinner would be a celebratory time prior to deep decline in my health. We would be at Maitri but none of us would be overwhelmed with my illness. Everyone could hopefully step into the beautiful environment, enjoy the vibes and not be overly stressed. As for the chef--no contest--I wanted to ask Amaryll Schwertner whose cooking at Boulette's Larder had been knocking me out for the past two years.
And so it has come to pass. This Thursday, 21 of my friends many old, some new will converge at Maitri for an hour of stand-up meeting. Then we'll proceed into the dining room for a very fine meal. I would have invited many more people, but the tables had a limited number of seats. I am looking forward to this evening in so many ways. I know from personal experience that when an interesting collection of people gather, chemistry happens. David will get what he wants. I'll have fun. Other people will have a chance to say, "Oh, I've heard a lot about you..." And off we'll go.
I was talking with my therapist today about the creativity that has been surging in me since I started to accept my terminal diagnosis. I've been on the Maitri Board for many years now, and I've been to many Maitri dinners. During all those years, I've adamantly refused to organize a dinner myself. Didn't want to do that at all. Now, I've changed my posture completely and feel wonderful for it.
Sunday, August 16, 2009
August 16th, 2009:
After being back in San Francisco for a couple of days, I'm thinking back to my trip to Portland with it's many highlights and unexpected directional signals. In no particular order, here are some of the most memorable times on that important trip:
Sitting no more than two yards away from my father in his apartment and listening to him tell me with no filters and full heart: "I love you so much!" Sitting there and believing him tell me this after waiting some sixty years to hear it. How lovely! The strength and purity of my Dad's conviction really came through. We talked about whether this would be my last visit and if I would ever see him again. By the end of the trip, I felt secure that I would be able to return at least one more time to visit him.
Going into the Eighth St. Grille in Portland's Pearl District with Willem, his mom and his godmother Christine. Once Willem had been seated in his high chair, this kiddo who is a couple of weeks shy of two looked at the waiter and said, "Grilled cheese, please!"
Getting ready to head out to the Farmer's Market for some produce shopping one morning and realizing that my right leg and pelvis really hurt. The prospect of walking around in downtown Portland seemed very daunting. I realized that I didn't have the stamina to go into the world that morning, then I became overwhelmed by the possibility of not being able to walk some day soon. I felt like I was heading into a dark future. What a cruel, abrupt stop after a lifetime of hiking, strolling, walking, ambling, etc. No more leg power. I cried while being held by Kris. That's what I needed: comfort and empathy. I stayed home that morning, rested on a chaise lounge overlooking Portland and watched a remarkable cloudscape for an hour or so. I rested, my body unwound from the pain and tension, and by the afternoon, I was fine. I guess that's how I'll accept whatever my body does with the growing tumor and other debilitation: have moments when I open to the fear and then ease back out. As with having anticipatory grief, this is anticipatory fear and acceptance.
Portland was so generous with people. I spent time with people I've known since I was a little kid. People including Jacob Avshalomov who conducted the first concert I ever went to back in 1952. John Baker whom I've known since I was six and who has been such a comrade as a friend and fellow gay man. Tom Talbot who I went camping with as a boy scout, and anticipated sitting next to every morning on the bus to high school. Leonora Guinazzo, my Spanish teacher in high school who virtually insisted that I start exploring the larger world outside America. My college friend Jolly Butler who has been such a fine companion intellectually and emotionally for the past forty years. Cris Maranze and Stu Levy whose cultural gifts were as wide-ranging as the history of great photographs and the song book of The Grateful Dead, and who taught me that roommates could also be soul mates (if you were really, really lucky).
It was good to travel back to the city that nourished me for the first thirty years of my life. It is so green, so beautiful, so placid and also full of purpose and health. Yes, I would like to go back very, very much. At least one more trip, please.
After being back in San Francisco for a couple of days, I'm thinking back to my trip to Portland with it's many highlights and unexpected directional signals. In no particular order, here are some of the most memorable times on that important trip:
Sitting no more than two yards away from my father in his apartment and listening to him tell me with no filters and full heart: "I love you so much!" Sitting there and believing him tell me this after waiting some sixty years to hear it. How lovely! The strength and purity of my Dad's conviction really came through. We talked about whether this would be my last visit and if I would ever see him again. By the end of the trip, I felt secure that I would be able to return at least one more time to visit him.
Going into the Eighth St. Grille in Portland's Pearl District with Willem, his mom and his godmother Christine. Once Willem had been seated in his high chair, this kiddo who is a couple of weeks shy of two looked at the waiter and said, "Grilled cheese, please!"
Getting ready to head out to the Farmer's Market for some produce shopping one morning and realizing that my right leg and pelvis really hurt. The prospect of walking around in downtown Portland seemed very daunting. I realized that I didn't have the stamina to go into the world that morning, then I became overwhelmed by the possibility of not being able to walk some day soon. I felt like I was heading into a dark future. What a cruel, abrupt stop after a lifetime of hiking, strolling, walking, ambling, etc. No more leg power. I cried while being held by Kris. That's what I needed: comfort and empathy. I stayed home that morning, rested on a chaise lounge overlooking Portland and watched a remarkable cloudscape for an hour or so. I rested, my body unwound from the pain and tension, and by the afternoon, I was fine. I guess that's how I'll accept whatever my body does with the growing tumor and other debilitation: have moments when I open to the fear and then ease back out. As with having anticipatory grief, this is anticipatory fear and acceptance.
Portland was so generous with people. I spent time with people I've known since I was a little kid. People including Jacob Avshalomov who conducted the first concert I ever went to back in 1952. John Baker whom I've known since I was six and who has been such a comrade as a friend and fellow gay man. Tom Talbot who I went camping with as a boy scout, and anticipated sitting next to every morning on the bus to high school. Leonora Guinazzo, my Spanish teacher in high school who virtually insisted that I start exploring the larger world outside America. My college friend Jolly Butler who has been such a fine companion intellectually and emotionally for the past forty years. Cris Maranze and Stu Levy whose cultural gifts were as wide-ranging as the history of great photographs and the song book of The Grateful Dead, and who taught me that roommates could also be soul mates (if you were really, really lucky).
It was good to travel back to the city that nourished me for the first thirty years of my life. It is so green, so beautiful, so placid and also full of purpose and health. Yes, I would like to go back very, very much. At least one more trip, please.
Friday, August 14, 2009
August 14th, 2009:
Next time I go away for a few days, I will be explicit about when I leave and when I return. It was both touching and startling to return home from Portland last night to numerous messages from people wondering if I had moved deeper into my illness. I'd been on a tear with the blog at the beginning of the month and then, with no big warning, the postings stopped. Ten days of silence after a lot of loquacity. Yes, I am fine. Yes, I was out of town. No, I don't have a laptop, and I didn't post any entries while I was on vacation. Thanks to all you you--those of you who expressed your concern, and those of you who knew that I was away from my computer.
As several of you requested, there will be a formal handover of the blog at some point when my ability to post does degrade and evaporate. I would like for you to have continuous updates about my health. However, I hope that giving this site to another writer is a long way off.
Although I'll say more about Portland and the many highlights of the visit, I would like to summarize the trip now by saying that I flew North to say good bye to all my friends up there. People I'd known since grade school, my Dad and little Willem who is not yet two years old. I thought it would be hard to see everyone for the last time, but I didn't want to shirk the responsibility. One thing I have learned from almost 30 years of end-of-life care is how to say goodbye. However, after a few days, it became clear to me that this was not the farewell tour. Rather to my surprise, I knew with increasing certainty that I would have at least one more trip in late September or in October. I could be wrong, but my certainty was such that I told several people--my Dad, my friend Jolly, Willem's parents--that I would be back. I felt like I could make that commitment. What a lovely surprise!
And now, for a wonderful vignette from the beginning of the trip while I was flying North and looking out of the window of the airplane onto the slopes of Mt. Shasta. As I stared down onto the snow fields and remaining glaciers, I remembered back to August 24th 1987. I had gone to stay in Mt. Shasta City with a meditation group I belonged to at that time. We had traveled to the mountain to celebrate the Harmonic Convergence, and we were there with hundreds of other New Age types, hippies, visionaries and others willing to harmonize. On the day of the convergence, over breakfast, we decided to climb the mountain. By 10 a.m. we had set out in our tennis shoes, driven to the top of the ski valley parking lot and started on the trail head to the summit. We kept a steady climbing pace, stopping for lunch and then continuing upward with remarkable determination.
At around 3 in the afternoon, we reached an enormous ledge covered with huge boulders that had melted out of glaciers. To go further would have required climbing gear which none of us had. Although we were certainly light-hearted, we weren't foolish. We accepted that we'd climbed as high as we could. We decided to have a siesta and then start our descent. Quickly, we all found places to nap for a bit. My choice was a huge rock with a chaise-like curve to rest in. I climbed aboard and promptly fell into a deep sleep.
I awoke in a state of total bliss, staring into cloudless blue sky and permeated with knowing that throughout the universe, everything was love. Love. Just love. Everything that had form or space between form held love and was love. I knew this was absolutely true, and I would guess the experience lasted for several seconds. It wasn't long. But it was enough. And then, particulars started to press onto me. I could see the edge of my visual field. I realized I was looking at the sky with my eyes. That I was lying on a large rock. That there was wind. And birds in the air. And arms that I could prop myself up with. Slowly, I came back into my body's awareness, but without loosing the certainty of what I had just experienced.
We assembled. All of us had felt something extraordinary during that rest time. We gathered into a circle, gave thanks as a group and started our descent. Flying over Mt. Shasta last Saturday, I looked for the shelf of rock on the West side of the mountain, the platform where I had received the most inspired awareness of my life. Couldn't find it from the airplane window. No matter. It was fine to have reconnected with that pivotal event in my life as the plane continued on to Portland.
Next time I go away for a few days, I will be explicit about when I leave and when I return. It was both touching and startling to return home from Portland last night to numerous messages from people wondering if I had moved deeper into my illness. I'd been on a tear with the blog at the beginning of the month and then, with no big warning, the postings stopped. Ten days of silence after a lot of loquacity. Yes, I am fine. Yes, I was out of town. No, I don't have a laptop, and I didn't post any entries while I was on vacation. Thanks to all you you--those of you who expressed your concern, and those of you who knew that I was away from my computer.
As several of you requested, there will be a formal handover of the blog at some point when my ability to post does degrade and evaporate. I would like for you to have continuous updates about my health. However, I hope that giving this site to another writer is a long way off.
Although I'll say more about Portland and the many highlights of the visit, I would like to summarize the trip now by saying that I flew North to say good bye to all my friends up there. People I'd known since grade school, my Dad and little Willem who is not yet two years old. I thought it would be hard to see everyone for the last time, but I didn't want to shirk the responsibility. One thing I have learned from almost 30 years of end-of-life care is how to say goodbye. However, after a few days, it became clear to me that this was not the farewell tour. Rather to my surprise, I knew with increasing certainty that I would have at least one more trip in late September or in October. I could be wrong, but my certainty was such that I told several people--my Dad, my friend Jolly, Willem's parents--that I would be back. I felt like I could make that commitment. What a lovely surprise!
And now, for a wonderful vignette from the beginning of the trip while I was flying North and looking out of the window of the airplane onto the slopes of Mt. Shasta. As I stared down onto the snow fields and remaining glaciers, I remembered back to August 24th 1987. I had gone to stay in Mt. Shasta City with a meditation group I belonged to at that time. We had traveled to the mountain to celebrate the Harmonic Convergence, and we were there with hundreds of other New Age types, hippies, visionaries and others willing to harmonize. On the day of the convergence, over breakfast, we decided to climb the mountain. By 10 a.m. we had set out in our tennis shoes, driven to the top of the ski valley parking lot and started on the trail head to the summit. We kept a steady climbing pace, stopping for lunch and then continuing upward with remarkable determination.
At around 3 in the afternoon, we reached an enormous ledge covered with huge boulders that had melted out of glaciers. To go further would have required climbing gear which none of us had. Although we were certainly light-hearted, we weren't foolish. We accepted that we'd climbed as high as we could. We decided to have a siesta and then start our descent. Quickly, we all found places to nap for a bit. My choice was a huge rock with a chaise-like curve to rest in. I climbed aboard and promptly fell into a deep sleep.
I awoke in a state of total bliss, staring into cloudless blue sky and permeated with knowing that throughout the universe, everything was love. Love. Just love. Everything that had form or space between form held love and was love. I knew this was absolutely true, and I would guess the experience lasted for several seconds. It wasn't long. But it was enough. And then, particulars started to press onto me. I could see the edge of my visual field. I realized I was looking at the sky with my eyes. That I was lying on a large rock. That there was wind. And birds in the air. And arms that I could prop myself up with. Slowly, I came back into my body's awareness, but without loosing the certainty of what I had just experienced.
We assembled. All of us had felt something extraordinary during that rest time. We gathered into a circle, gave thanks as a group and started our descent. Flying over Mt. Shasta last Saturday, I looked for the shelf of rock on the West side of the mountain, the platform where I had received the most inspired awareness of my life. Couldn't find it from the airplane window. No matter. It was fine to have reconnected with that pivotal event in my life as the plane continued on to Portland.
Tuesday, August 4, 2009
August 4th, 2009:
At three this afternoon Eileen Lemus and I met each other going into Maitri and we proceeded up the stairs to start my intake interview for eventual admission. We met with Daniel Hill the Intake Coordinator and Grace Molyneaux, the nurse who manages the medical side of the residence. One of Maitri's treasures is the meditation room, a beautiful place filled with art from many sacred traditions and a fine outlook into the garden. That's where we settled in for our time together.
There was a bit of adjustment as I put my role of ex-bedside volunteer and current board member off to the side. I presented myself as a person with cancer who would be needing hospice level care in the upcoming months. I'm happy to say that a major success of today's visit rotated around that shift in roles for me. I've had practice imagining leaving a home in the past few months by starting with closing down my fantasies of a life in Glen Ellen. Now, without force, I've begun to visualize myself out of my apartment and into a room at Maitri. However, I lacked concrete images. I go to Maitri for board meetings and parties. The last time I was in a patient's room was late at night, and Percy was actively dying. He got all my attention. It didn't occur to me to look around and wonder what it would be like to live in the room.
Grace suggested that after we'd had a chance to talk, we visit a couple of the rooms where resident's were out for the afternoon. It really mattered to me today to get a physical sense of the space I'm going to move into. Then, into the intake process. We walked through what Maitri needs from me now: my medical records, my durable powers of attorney. They explained that I should alert my insurance about my need for hospice benefits. We talked about how emergency pain management would be handled as my health becomes more fragile. My health care team of primary care physician, oncologist will expand to include the Maitri medical staff and a pain management specialist from Hospice By The Bay. Eileen had some excellent questions about how the rooms are configured. Answers include: each resident has a private room although two rooms share a bath and toilet. Shouldn't be a problem for me. I've had very successful group living experiences in my life, and I've liked sharing a home with most of my partners over the years. Well, not all of my partners, but most of my partners.
We talked about moving into Maitri when I'm still ambulatory, and clearly this is the biggest unknown. There's no way of anticipating given my health today what will trigger my need to leave this apartment. However, when that need arises, then there will need to be some serious coordination. I am so glad that I've already assigned away my possessions. I'll have a transition where all my treasures pour out of this apartment to their various directions. Hopefully that will be a process where I can participate. Also, hopefully, there will be an available bed at Maitri. If not, then I'll go to another facility for a time before moving into my final room. Of course I'll be able to take provisions for this last move. A good chair for my friends to sit in when they visit. A laptop to stay in communication electronically. I now have an iPod that Ruth thoughtfully gave me to store the music that will sustain me. I'll get to buy some new clothes such as pyjamas and a robe. I can bring a few pictures and maybe a textile or two. Rugs? Probably not. Point being, there will be a major whoosh as most of my possessions veer off and I am left with a lightness that's appropriate and desirable. I have always enjoyed divesting even as I was collecting.
We finished up with the paperwork and started off to the field trip of two rooms. And at this point the magical moment of the visit occurred. On the way to the first room we passed a nurse's station and there, sitting on a couch was Stephen, one of the residents. He had a nice light about him, frosted hair and an elfish sense of humor. As I introduced myself, he told me that Maitri was a wonderful place. I easily agreed with him. Then he asked, "What are you doing here?" Without thinking, I replied, "Well, I'm auditioning the place. I hope to move in here, so we're going to look at a couple of rooms." He seemed a bit stunned. "You are going to move in here?" "Yup," I replied. "So if you're here too, we can get to know each other. That would be fun." "Yeah!" he agreed. Then, goodbyes were said and we moved on to the room visit. Daniel was astonished by that exchange and said, "I can't believe you did that. I was about to introduce you as a board member!" "Well," I ventured, "Coming out as a wanna-be resident seems more appropriate today. I hadn't realized how much I've already accepted this new identity as someone who will live at Maitri."
For the record, the two rooms were just fine. They are spacious, and I felt immediately comfortable knowing that there would be plenty of space to spread out and settle in. I will say it again: it's an immense relief to know that I will be cared for by people I know and love. As my physical self declines, it's an extraordinary luxury to have such quality of life supporting me. As my friend Ulrike said in a recent letter, "You know, your body may be dying, but your awareness is not." Yes, yes, a thousand times Yes to that truth about my life.
At three this afternoon Eileen Lemus and I met each other going into Maitri and we proceeded up the stairs to start my intake interview for eventual admission. We met with Daniel Hill the Intake Coordinator and Grace Molyneaux, the nurse who manages the medical side of the residence. One of Maitri's treasures is the meditation room, a beautiful place filled with art from many sacred traditions and a fine outlook into the garden. That's where we settled in for our time together.
There was a bit of adjustment as I put my role of ex-bedside volunteer and current board member off to the side. I presented myself as a person with cancer who would be needing hospice level care in the upcoming months. I'm happy to say that a major success of today's visit rotated around that shift in roles for me. I've had practice imagining leaving a home in the past few months by starting with closing down my fantasies of a life in Glen Ellen. Now, without force, I've begun to visualize myself out of my apartment and into a room at Maitri. However, I lacked concrete images. I go to Maitri for board meetings and parties. The last time I was in a patient's room was late at night, and Percy was actively dying. He got all my attention. It didn't occur to me to look around and wonder what it would be like to live in the room.
Grace suggested that after we'd had a chance to talk, we visit a couple of the rooms where resident's were out for the afternoon. It really mattered to me today to get a physical sense of the space I'm going to move into. Then, into the intake process. We walked through what Maitri needs from me now: my medical records, my durable powers of attorney. They explained that I should alert my insurance about my need for hospice benefits. We talked about how emergency pain management would be handled as my health becomes more fragile. My health care team of primary care physician, oncologist will expand to include the Maitri medical staff and a pain management specialist from Hospice By The Bay. Eileen had some excellent questions about how the rooms are configured. Answers include: each resident has a private room although two rooms share a bath and toilet. Shouldn't be a problem for me. I've had very successful group living experiences in my life, and I've liked sharing a home with most of my partners over the years. Well, not all of my partners, but most of my partners.
We talked about moving into Maitri when I'm still ambulatory, and clearly this is the biggest unknown. There's no way of anticipating given my health today what will trigger my need to leave this apartment. However, when that need arises, then there will need to be some serious coordination. I am so glad that I've already assigned away my possessions. I'll have a transition where all my treasures pour out of this apartment to their various directions. Hopefully that will be a process where I can participate. Also, hopefully, there will be an available bed at Maitri. If not, then I'll go to another facility for a time before moving into my final room. Of course I'll be able to take provisions for this last move. A good chair for my friends to sit in when they visit. A laptop to stay in communication electronically. I now have an iPod that Ruth thoughtfully gave me to store the music that will sustain me. I'll get to buy some new clothes such as pyjamas and a robe. I can bring a few pictures and maybe a textile or two. Rugs? Probably not. Point being, there will be a major whoosh as most of my possessions veer off and I am left with a lightness that's appropriate and desirable. I have always enjoyed divesting even as I was collecting.
We finished up with the paperwork and started off to the field trip of two rooms. And at this point the magical moment of the visit occurred. On the way to the first room we passed a nurse's station and there, sitting on a couch was Stephen, one of the residents. He had a nice light about him, frosted hair and an elfish sense of humor. As I introduced myself, he told me that Maitri was a wonderful place. I easily agreed with him. Then he asked, "What are you doing here?" Without thinking, I replied, "Well, I'm auditioning the place. I hope to move in here, so we're going to look at a couple of rooms." He seemed a bit stunned. "You are going to move in here?" "Yup," I replied. "So if you're here too, we can get to know each other. That would be fun." "Yeah!" he agreed. Then, goodbyes were said and we moved on to the room visit. Daniel was astonished by that exchange and said, "I can't believe you did that. I was about to introduce you as a board member!" "Well," I ventured, "Coming out as a wanna-be resident seems more appropriate today. I hadn't realized how much I've already accepted this new identity as someone who will live at Maitri."
For the record, the two rooms were just fine. They are spacious, and I felt immediately comfortable knowing that there would be plenty of space to spread out and settle in. I will say it again: it's an immense relief to know that I will be cared for by people I know and love. As my physical self declines, it's an extraordinary luxury to have such quality of life supporting me. As my friend Ulrike said in a recent letter, "You know, your body may be dying, but your awareness is not." Yes, yes, a thousand times Yes to that truth about my life.
Monday, August 3, 2009
August 3rd, 2009:
I had no particular plans for what to write about today until I heard myself musing about various remorses and losses weaving through this time. That's become an accelerated part of my life in the past weeks. Right now many people I know are in Santa Fe at the opera, and in a normal year, I would be there too. And in a couple of weeks, I had plans to go to Seattle for the Ring. Not this year. Not ever again. No more live performances of the Ring for Geo. As I was riffing through my inventory of giving up, I kept circling around a particularly keen loss. I am struggling with not having a chance to help raise my godson Willem. That's been the magnet for my attention today.
Not being a living, active godfather to Willem has an unexpected sharpness and poignancey that surprises me each time I feel it. Perhaps because I never created any solid plans for having children--although at one time in my life I was an expectant father--I had put to rest my thoughts of being a parent several years ago. During my past life regressions, it helped me to learn that I'd been a nurturing, happy parent many times. Even today, I can go to that place in me that loves children and knows how much I love to raise them. After Willem was born, I went over to meet him and I have to say, I arrived expecting to be charmed and to celebrate that he'd arrived. I had no idea that he would immediately exert such a powerful hold on me. I did not expect to feel so personally attached to him. How could a month old baby do that? In this case the answer was: easy.
When his parents Kris and Darius asked me to be Willem's godfather, I was deeply honored. How exciting to know that I would have a place in this child's life as a spiritual advisor and guide. For the first months of his life, his godmother Christine and I would visit him once a month for "Willem night." Willem would play with us for a couple of hours at the beginning of the evening before going off to sleep. Then the adults would join together for dinner and talk about Willem. Always so much to say about his growth, his special characteristics and emerging individual self. Since Willem moved to Portland around the time of my first chemo treatment, I have only had a chance to see him once when I went up for my Mom's memorial service at the end of March. At that time, Willem had grown hugely. He'd graduated from crawling to walking. He had started to speak enough to point out the window and say "squirrel" when a gray squirrel ran across the lawn. That seemed quite brilliant to me.
As I'm writing this, I'm realizing how I keep Willem alive in my apartment in San Francisco by putting up pictures of him here and there where I am likely to see them. For all the joy that I feel by looking at him and reminding myself that he is here, I haven't done much planning about our future. I haven't fantasized about what I'd like to offer him as the future unfolds. That seems like an appropriate reaction, given that much of my work in the past months has been to drastically scale back my expectations of how much time remains to me.
The sharp "Ouch" that I mentioned in the beginning of this entry comes from being certain that I know Willem. I know him and I love him and he's arrived in this life just as I'm about to leave. I want more living time with him. I want to teach him things I know, and I want to learn from him. I want to be dazzled as his character and talents and hopes emerge. This is not going to happen. What will happen in the next days is that I will fly to Portland and have another visit with him. It will be such a comfort to reel in more time with him and give my time to him. That's what I can do in the short term.
Even though he's one of the newest people in my life, Willem is already teaching me huge lessons. Like how to love and let go. Recently, several people have said that they are having a hard time with the fact that I'm dying because they don't want me to leave their world. At first, I was honored by the sentiment, but I didn't deeply get it. Now, via the poignancy of realizing that I will not have time and experience with Willem, I understand that feeling much more closely.
I had no particular plans for what to write about today until I heard myself musing about various remorses and losses weaving through this time. That's become an accelerated part of my life in the past weeks. Right now many people I know are in Santa Fe at the opera, and in a normal year, I would be there too. And in a couple of weeks, I had plans to go to Seattle for the Ring. Not this year. Not ever again. No more live performances of the Ring for Geo. As I was riffing through my inventory of giving up, I kept circling around a particularly keen loss. I am struggling with not having a chance to help raise my godson Willem. That's been the magnet for my attention today.
Not being a living, active godfather to Willem has an unexpected sharpness and poignancey that surprises me each time I feel it. Perhaps because I never created any solid plans for having children--although at one time in my life I was an expectant father--I had put to rest my thoughts of being a parent several years ago. During my past life regressions, it helped me to learn that I'd been a nurturing, happy parent many times. Even today, I can go to that place in me that loves children and knows how much I love to raise them. After Willem was born, I went over to meet him and I have to say, I arrived expecting to be charmed and to celebrate that he'd arrived. I had no idea that he would immediately exert such a powerful hold on me. I did not expect to feel so personally attached to him. How could a month old baby do that? In this case the answer was: easy.
When his parents Kris and Darius asked me to be Willem's godfather, I was deeply honored. How exciting to know that I would have a place in this child's life as a spiritual advisor and guide. For the first months of his life, his godmother Christine and I would visit him once a month for "Willem night." Willem would play with us for a couple of hours at the beginning of the evening before going off to sleep. Then the adults would join together for dinner and talk about Willem. Always so much to say about his growth, his special characteristics and emerging individual self. Since Willem moved to Portland around the time of my first chemo treatment, I have only had a chance to see him once when I went up for my Mom's memorial service at the end of March. At that time, Willem had grown hugely. He'd graduated from crawling to walking. He had started to speak enough to point out the window and say "squirrel" when a gray squirrel ran across the lawn. That seemed quite brilliant to me.
As I'm writing this, I'm realizing how I keep Willem alive in my apartment in San Francisco by putting up pictures of him here and there where I am likely to see them. For all the joy that I feel by looking at him and reminding myself that he is here, I haven't done much planning about our future. I haven't fantasized about what I'd like to offer him as the future unfolds. That seems like an appropriate reaction, given that much of my work in the past months has been to drastically scale back my expectations of how much time remains to me.
The sharp "Ouch" that I mentioned in the beginning of this entry comes from being certain that I know Willem. I know him and I love him and he's arrived in this life just as I'm about to leave. I want more living time with him. I want to teach him things I know, and I want to learn from him. I want to be dazzled as his character and talents and hopes emerge. This is not going to happen. What will happen in the next days is that I will fly to Portland and have another visit with him. It will be such a comfort to reel in more time with him and give my time to him. That's what I can do in the short term.
Even though he's one of the newest people in my life, Willem is already teaching me huge lessons. Like how to love and let go. Recently, several people have said that they are having a hard time with the fact that I'm dying because they don't want me to leave their world. At first, I was honored by the sentiment, but I didn't deeply get it. Now, via the poignancy of realizing that I will not have time and experience with Willem, I understand that feeling much more closely.
Sunday, August 2, 2009
August 2, 2009:
I had a very social yesterday where I reconnected with three important people in my life who I hadn't seen for too long. No misunderstandings between us, we were all busy off in other directions for the past couple of years. In both instances, I had a chance to appreciate my current position of managing my health.
The first visit was with my past life hypnotherapist Marilyn and her husband Frans. In the past weeks, Marilyn and Frans had heard about my cancer diagnosis and had the opportunity to catch up via this blog. They invited me over to their home in the Oakland Hills for lunch on what turned out to be a very fine, sunlit day. Frans picked me up at BART and as we were driving to their house, he said, "It's clear from seeing you right now that you know what you want for yourself." I was startled by how much I enjoyed hearing this. There is a part of me that is hungry for approval and support right now. It's not just about being validated for my choices, but also the trust that I am able to take care of myself under difficult circumstances. True, I hear this from most people who I'm in direct contact with. I also found myself reflecting that I am grounded in my knowing most of the time, but I also have times when I don't know what I wants and times when I'm totally open about changing my mind.
Once at their home, I settled into a long-overdue visit with my hosts. They caught me up on the psychic work they'd recently pursued, travel plans and their ongoing life together. Then, we spent some time in trance where they placed their hands on my chest, invoked energies and gave me a very fine healing that warmed me physically and psychologically. During this silence, I felt how much I've been avoiding just letting myself experience the pain of this time. Not so much the physical pain because that is well-managed by my medication, and frankly, I don't think my life would be improved if I felt that in all it's force. Yes, I know my pelvis can generate suffering, but will I be a more integrated person for giving up my opiates? Probably not. Rather, the emotional pain of letting myself grieve and rage. It still amazes me how much my early learning to hold those feelings in has maintained during this illness.
Afterward over a very fine lunch in their garden overlooking downtown Oakland, the expanse of the Bay and the panorama of San Francisco, I told Marilyn how much I was looking forward to do more past-life work with her. I'm glad to know that we can start in the early Fall when I have the time and they are back in the Bay Area. Past-life regression has been such a valuable source of information for me about this life. And this is certainly a time in my life when I feel more curious than ever about how I am dealing with issues that originate not only in this current existence by prior as well.
Home in the mid-afternoon, I had time for a nap before my friend Garrik arrived from Sacramento with his Mom. I met Garrik on a flight back to the States from London in the late 90's. As he said, "We were high from the moment we met," meaning at least 38,000 feet in the air. Born in Odessa, Soviet Union and raised in Moscow, he came to the West in the early 1980's, studied Chiropractics in Germany. Eventually he located in Sacramento and built a practice for his healing talents. I've always admired his ability to thrive and contribute in many cultures.
As I caught Garrik up on my history of getting a diagnosis, going through chemo and going to the other side of the pendulum swing by visiting the Optimal Health Institute, I moved to the part of my story where my body told me in late April that I was on my path. My path wasn't to end my tumors growth, rather my tumors would lead me into creatively spending my last months well for myself and for others. I explained that currently I was receiving no treatments and that I had a very high quality of life. This will not last forever, and for now, the quality is very high indeed.
After dinner with Garrik and his Mom, I returned home to settle into being alone. What came to me after a day spent with three healers all of whom have strong opinions and beliefs about helping people be cured from illness is that I am following a path that's been revealed to me. Interestingly, I regard myself the way I was taught to treat my end-of-live care clients when I learned bedside care in the early 80's. I offer no medical solutions to myself because I haven't studied medical solutions. I make room for my body to reveal the stages of illness and health. A month ago when a tumor fractured my rib, the message from my body was that I have bone cancer. After immediate relief from anti-inflammatories, I've had no treatments. This brief emergency has been followed by a long, much-appreciated plateau of health, well-being and productivity. I heard Frans' words, "It's clear from seeing you that you know what you want."
True, there are things that I know that I want. This past week in therapy, my therapist suggested that since there's such intensity of learning going on for me now, we accelerate our sessions to twice a week. She proposed that it would be an opportunity to focus more on the messages from my body that are so hard for me to hear and the feelings that carry those messages. After a lifetime of learning how to avoid hearing my body and my feelings, we can work to open up those channels. So yes, that's what I want more of: more access to the voice of my body and the voice of my feelings.
I had a very social yesterday where I reconnected with three important people in my life who I hadn't seen for too long. No misunderstandings between us, we were all busy off in other directions for the past couple of years. In both instances, I had a chance to appreciate my current position of managing my health.
The first visit was with my past life hypnotherapist Marilyn and her husband Frans. In the past weeks, Marilyn and Frans had heard about my cancer diagnosis and had the opportunity to catch up via this blog. They invited me over to their home in the Oakland Hills for lunch on what turned out to be a very fine, sunlit day. Frans picked me up at BART and as we were driving to their house, he said, "It's clear from seeing you right now that you know what you want for yourself." I was startled by how much I enjoyed hearing this. There is a part of me that is hungry for approval and support right now. It's not just about being validated for my choices, but also the trust that I am able to take care of myself under difficult circumstances. True, I hear this from most people who I'm in direct contact with. I also found myself reflecting that I am grounded in my knowing most of the time, but I also have times when I don't know what I wants and times when I'm totally open about changing my mind.
Once at their home, I settled into a long-overdue visit with my hosts. They caught me up on the psychic work they'd recently pursued, travel plans and their ongoing life together. Then, we spent some time in trance where they placed their hands on my chest, invoked energies and gave me a very fine healing that warmed me physically and psychologically. During this silence, I felt how much I've been avoiding just letting myself experience the pain of this time. Not so much the physical pain because that is well-managed by my medication, and frankly, I don't think my life would be improved if I felt that in all it's force. Yes, I know my pelvis can generate suffering, but will I be a more integrated person for giving up my opiates? Probably not. Rather, the emotional pain of letting myself grieve and rage. It still amazes me how much my early learning to hold those feelings in has maintained during this illness.
Afterward over a very fine lunch in their garden overlooking downtown Oakland, the expanse of the Bay and the panorama of San Francisco, I told Marilyn how much I was looking forward to do more past-life work with her. I'm glad to know that we can start in the early Fall when I have the time and they are back in the Bay Area. Past-life regression has been such a valuable source of information for me about this life. And this is certainly a time in my life when I feel more curious than ever about how I am dealing with issues that originate not only in this current existence by prior as well.
Home in the mid-afternoon, I had time for a nap before my friend Garrik arrived from Sacramento with his Mom. I met Garrik on a flight back to the States from London in the late 90's. As he said, "We were high from the moment we met," meaning at least 38,000 feet in the air. Born in Odessa, Soviet Union and raised in Moscow, he came to the West in the early 1980's, studied Chiropractics in Germany. Eventually he located in Sacramento and built a practice for his healing talents. I've always admired his ability to thrive and contribute in many cultures.
As I caught Garrik up on my history of getting a diagnosis, going through chemo and going to the other side of the pendulum swing by visiting the Optimal Health Institute, I moved to the part of my story where my body told me in late April that I was on my path. My path wasn't to end my tumors growth, rather my tumors would lead me into creatively spending my last months well for myself and for others. I explained that currently I was receiving no treatments and that I had a very high quality of life. This will not last forever, and for now, the quality is very high indeed.
After dinner with Garrik and his Mom, I returned home to settle into being alone. What came to me after a day spent with three healers all of whom have strong opinions and beliefs about helping people be cured from illness is that I am following a path that's been revealed to me. Interestingly, I regard myself the way I was taught to treat my end-of-live care clients when I learned bedside care in the early 80's. I offer no medical solutions to myself because I haven't studied medical solutions. I make room for my body to reveal the stages of illness and health. A month ago when a tumor fractured my rib, the message from my body was that I have bone cancer. After immediate relief from anti-inflammatories, I've had no treatments. This brief emergency has been followed by a long, much-appreciated plateau of health, well-being and productivity. I heard Frans' words, "It's clear from seeing you that you know what you want."
True, there are things that I know that I want. This past week in therapy, my therapist suggested that since there's such intensity of learning going on for me now, we accelerate our sessions to twice a week. She proposed that it would be an opportunity to focus more on the messages from my body that are so hard for me to hear and the feelings that carry those messages. After a lifetime of learning how to avoid hearing my body and my feelings, we can work to open up those channels. So yes, that's what I want more of: more access to the voice of my body and the voice of my feelings.
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