THE GIFT OF COMMUNITY

Today is Spa Day and I went into Holy Cross feeling like a truck had run over me; I had not recovered from Sunday's gathering. And then it turned out that my blood test revealed that my platelets were too low to be able to give me the Velcade. This apparently is a normal part of the ebb and flow of the treatment and we will simply wait for them to build back up. It was just somehow mildly disappointing since I am anxious for this treatment to knock the myeloma into remission as soon as possible.

Yesterday we had our monthly Community Cook-Out with about one hundred people attending. I was full of energy throughout last month's event but yesterday I began the day tired. I finished my shower just before people were scheduled to arrive and sat out in the back garden under the huge Sea Grape tree cooled by a delightful cross breeze. I hadn't meant to remain there but suddenly people were coming out and talking with me so there I did remain for about another three hours. I had previously determined that I was going to alter my way of being at this Cook-Out. Instead of stationing myself in the kitchen as was my custom where I would receive people and the food they brought, and where I would spend most of the Cook-Out saying hello and good-bye all day in mini-conversation as people arrived, ate, and left in endless rotation, I planned to be present in a different way. So I spent the afternoon in the garden having real conversation with people and only entered the kitchen to prepare my own dinner plate. Either way is perfectly fun and good but yesterday was certainly much more relaxing and physically comfortable for me. And there were no problems in the kitchen as people who knew the routines greeted and assisted new guests. Nevertheless,by seven o'clock I was totally exhausted and I chose to leave for an hour to lie down for rest before returning to my guests. Despite a full night's sleep I awoke this morning with the exhaustion intact.

Jeff and I began the Cook-Out almost a year and a half ago and only missed one month due to some construction I was having done. It has been remarkably successful in its execution. There are now about four hundred people on our Facebook guest list and the list keeps growing as regulars bring their friends. We had determined that what was missing in this Gay Mecca was a non-alcohol/non-drug event which would build community and relationship and fun. The last thing Fort Lauderdale needed was another cocktail pool party. So we have created a successful ongoing community event that works beautifully exactly as we wished it to be through our intention. Initially we provided grilled meat for the first two or three Cook-Outs but were soon dissuaded from the work attached to that idea. Now we provide the grill and they may bring meat if they wish. Most people bring a salad or casserole, or appetisers, or a dessert which makes it much more of a community endeavor and frequently provides for an amazing array of truly delicious food. We invite people to bring drinks of their choice and have never mentioned alcohol one way or another. And almost everyone brings beer or wine but it has never been the focus or the backbone of the events. This last Cook-Out was the best yet. It was a beautiful day and people were everywhere having conversations in the kitchen, the loggia, corners of the garden, on the dock, or playing Boggia Ball and Bean Bag Toss on the lawn, or Wii Bowling in the Pool House. For the duration of the afternoon there was a delightful, playful energy in every corner of this gorgeous property.

Several months ago, during one of the Cook-Outs I reflected upon why I was doing this, because it does take expense and work. And I came to the awareness that while I love the serenity of being here alone or with one or two others, it was also a prefect location to share with a community of people. Both Jeff and I are very much committed to facilitating the development of deeper and richer relationship and community among people, and gay people in particular. And in some ways even more importantly, it has brought a wonderfully playful aliveness into my life which balances the more reflective times. Given the limitations of my physical reality it is such a gift to have this wonderful energy come to me in my own home. It has also produced an unanticipated but extraordinary additional consequence for me as well.

I have been in a deeply personal, platonic friendship with Jeff over the course of the last ten years. It has been a major learning and growth-producing experience for both of us; never easy, often fun, and always confronting. And now we find ourselves living together in a time of acute crisis in my life, and thus our lives. The risk to both of us is slipping into dependency/co-dependency as he serves more and more as a health care support for me. Burn-out hovers in the air. He seeks to maintain the independence of his own life while remaining in close relationship to me and supporting me in times of acute need. I seek to maintain as much of my own autonomy and independence as possible all the while respecting his life apart from me and the demands of my illness. It is yet another and often demanding challenge on this weird and breath-taking journey I am taking.


What I never anticipated when we began the Cook-Outs was the number of truly good-hearted people that I would meet who would come forward to support both Jeff and me during this time. Jeff is spending the next week with his family in Massachusetts and literally dozens of people have asked to support me in any way they can while he is gone. And Mr. "Thanks, but I can manage" has accepted and begun to ask for what I need or want. So I have people who will walk Lucky, drive me to acupuncture, and come over to take me out or to make meals at home with me. I can see the palpable relief that this gives to Jeff and I feel very deeply the security of knowing that I am not alone and somehow required to "carry-on" regardless of how I feel if I don't have Jeff around to rely upon.

These are more of the flowers of love I find growing along this path of living with cancer upon which I tread. Such beauty takes my breath away. And so, once again, I am deeply, deeply grateful.

MY SECRET GARDEN NO MORE

It is a very still and somewhat humid morning as I come out to the terrace to write. The river is a glimmering mirror and not a single palm frond moves. It is all peace and beauty. I feel shakey from yesterday's exertions but I had a full night's sleep and I just feel good. The neuropathy still makes my feet feel like they are in shoes filled with sand and is beginning to affect my fingertips with a slight numbness but I grow accustomed to it and barely notice it when I am otherwise focused as I am now. Yesterday I spent most of the day on the boat with Alan and Danny. Alan had taken a boating safety course with me last summer so I invited him to learn to drive and care for the 30' Bayliner which belongs to my brother but which we now both share. My brother is spending the summer at his home in upstate New York and I am neither strong nor agile enough to take it out myself. After cruising the Intercoastal Canal for a few hours we stopped to eat at a waterside cafe. It was a perfect day. I had none of the usual side-effects and mostly had this wonderful sensation of just being normal.
The happiness and gratitude I felt was so strong it lingers yet.

This is in sharp contrast to the days since my last post. I had intended to write sooner but I was just too sick. What I discovered was that the Velcade regimen and its side-effects is cumulative. It has become increasingly difficult. In addition to the intense and prolonged constipation/incontinence cycle I also experienced a debilitating level of exhaustion that was unmitigated by rest. But most frightening were the days of inexplicable fevers as high as 102 degrees which did eventually disappear with antibiotics. This all took place during the week that I was "chemo-free". Perhaps it was the result of withdrawal from the intense amount of steroids that I take as part of my chemo regimen. I don't know. I just know it is not a fun part of the ride.

Right now the stillness of this precious morning is broken by the carrillon of the neighborhood Prep School playing "As the Saints Go Marching In". I am so fortunate to live here. It gives me goose bumps. It is truly Paradise Point!

And yet, no small irony, three days after posting Bumper Sticker Bible, I was hit by some major elephant shit here in paradise. Paradise Point, my beloved property is in fact a pennisula bordered on one side by a canal and on the other a river. At the end of the penninsula there is a simple cement bridge surrounded with ten foot chain link fencing. Neighborhood boats, including mine, pass from the local canals under this bridge to get to the river and beyond. It was buit by a developer fifty or more years ago to enable him easier access to the property on the otherside of the canal. And then abandoned and neglected. It is the orignal bridge to nowhere. It is in poor condition and needs to be removed.

However, my land slopes up to the top of the bridge where I leveled an area for a small stone terrace and buit a"secret garden" that is partially, somewhat mysteriously, hidden from view of the rest of the property and is nonetheless enticing for it. It is enshrouded with lush vegetation including six mature coconut palms. There is always a breeze in this shaded haven and therefore a perfect place to meditate or counsel another as both Jeff and I have done at times. It is guarded by a four foot, beautifully weathered statue of Francis of Assisi which I bought in 1982 and kept in my Boston garden as a memorial to my mother who had just died from the same cancer I have.

During the week I was so sick I was informed by the State Flood Control Department that they were removing the bridge next week and excavating all the land coming into my property for thirty feet! That would entirely destroy the garden including ALL the trees and replace it with a downward sloping bank composed of "rip-rap" which I understand in this case to be bags of cement. So my property would no longer culminate in an exquisitely lush garden but in a gully of cement bags. And the soul of this wondrously sacred place would be ruthlessly extinquished. In many ways the horror of this plan is too much for me to bear with what I am dealing with on my plate already. The very thing that I use to support me in remaining positive through this health ordeal is being utterly destroyed by
an unnecessary and insensitive plan designed by perfectly decent people who have no regard for the impact upon me at all. And given the current economic debacle, I have no means in any way to restore what is being destroyed. Dealing with this in my current condition is easily the most distressing challenge of my life.

And deal with it I must. And I will. I have begun by asking my friend, George, who was one of my original partners in Treetops many years ago and has just moved here full time, to partner me in negotiating with Flood Control. I know that I am not at the top of my game and that I need assistance in anticipating and understanding all the implications of what Flood Control intends to do. He readily agreed to help me do that and to try and negotiate a more palatable solution to their current plan. I am very, very grateful to him. My intention is to approach this entire matter from a positive, non-adversarial perspective. It is not that the other, darker side does not live within me as well, I just refuse to give it a voice. I am intending to preserve something profoundly sacred so I will not use profane means to accomplish my task. There are no bad people here just a very, very, ill-considered plan.

The boys across the river have begun their volleyball practice. They are very disciplined and very serious. There is never any shouting and all one ever hears is the twack of the ball. I have come to love this sound and the youthful exuberance it represents. But now I have to leave the peace and delight of this riverside perch and prepare for my Spa Day to continue the chemotherapy and accupuncture of this cycle.