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.
Saturday, August 22, 2009
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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