and finally, tears come

Our marriage ceremony was Saturday afternoon. As I mentioned, it was an intensely small and intensely loving affair. We cut short our dinner so that Cen, Robert, and I could dash into Arlington for Daniel's memorial service.

What a time that was -- the place was packed. There were two ministers, both close friends of D. Graham gave the eulogy, a long-but-could-have-been-longer portrait, full of love (and it was the love-him-as-he-was kind, not the adore-him-on-a-pedestal kind). Many people gave shorter speeches, trying to make sense of it all. There was some beautiful music (including the Ash Grove and the King of Love My Shepard Is, both, I learned, favorites of D), and poetry and other readings.

Truly a full day. I felt deeply at the service, and perhaps a little watery-eyed, but mostly quiet. In the last couple of days, however, I've noticed myself being a bit weepy, perhaps during those in-between moments. I've certainly been thinking a great deal of Daniel as I try to understand his absence. I feel like I've entered another stage of understanding.

Funny, two people asked me "whatever will we do without Daniel?" Clearly, the world is a poorer place without him. My answer, which was probably totally inadequate but the best I could do, was that we each incorporate a tiny piece of him -- we think about his good works and are inspired to continue them in whatever small way we can. It's our way of keeping him alive in our hearts, for as long as we can, or perhaps a way of keeping a small part of him within ourselves.

There is of course no sense to any of this -- his brief illness or his death -- but I do feel that my heart is slowly catching up with my head-full-of-facts.

I continue to hold his caregivers -- especially Graham -- in a special place in my heart. I know them all to be true heroes.

surprise...

Well, this was indeed a day of joys and sorrows, in true Unitarian tradition. Today was Robert's and my wedding day -- we eloped right into the living room downstairs. Our friend Cen performed the ceremony, beautifully, I might say. We had readings from Rumi and Gibran and Sappho. Everyone present said something. We had champagne, and then we went out for Indian food. Very simple and small. Very loving and warm. The news is now public, but we'll probably make a more official announcement in the coming weeks.

I may write more about the day tomorrow.

another completely random memory

Just remembered it this morning, in fact.

Daniel loved shiny things. For a while, Robert and I collected interesting shiny things, ridiculous little objects with no value and no meaning, as if we were crows. We had a spot for them in my car, in the otherwise unused ashtray. Perhaps it was our way of carrying a little bit of Daniel around with us wherever we went.

It's odd, isn't it, how these connections between people flow.

commitment ceremony, daniel

Four years ago Thursday, Daniel performed Robert's and my commitment ceremony. I was just rereading his words. He spoke of our committing to each other, marking a milestone along our journey together, while the larger community of friends gathered and friends not present made a commitment to us. He said:

Friendships are the sacred threads that weave the web of life, and the ties of friendship can help to bind our seemingly fragmentary lives into something like whole things. Part of living in community, however defined, is supporting each other through all of the things life brings to us. Moments of rich reward, ... times of sorrow and loss, and everything that spans the spectrum in between. The everydayness and the extraordinary, the peaks and the sloughs. We all need one another in all of these times.

So true. I am grateful to Daniel for performing our ceremony and managing to capture in words all that we felt on that lovely day. He will be in our hearts today, as present as he can be from his resting spot in Maine, as we experience the moments of rich reward and the moments of sorrow and loss, a great deal of life in one short day.

words are coming

When I said that I didn't have words about Daniel, I meant that I had thought a lot about our last encounter, and I'd worked through much of it. Graham helped enormously with that process. And I was flooded with images of him, some horrible imaginings that came to me in the middle of the night, some peaceful connections while he was in the hospital, some of Daniel when he was healthier. But that was it.

Yesterday, I had some memories, mostly fun ones. We've spent at least one Thanksgiving, maybe more with him. For several years, we attended his seders -- fun affairs held on a convenient night, not dictated by the calendar. Daniel had an assortment of haggadahs (some of which Robert and I gave him one Christmas). We'd each take one or more. I usually took the "angry lesbian haggadah," which, depending on my mood was either dead on or hysterically funny, and one other one. Then we'd go around the table and read our section, and if anyone else's section was different, that person would speak up. The discussions were fascinating and I learned so much. (This is what you get when a bunch of former divinity students get together. What a great place to be a fly on the wall.)

We were privileged to spend time with Daniel at his family camp in Maine, a grand old house on a lake that itself has seen many tragedies. We spent mornings in our pjs in the kitchen and cooked huge dinners which we ate on the porch. Daniel's sister and mother are there; Daniel will be there as of today.

And Daniel had so many communities from which he developed friendships -- English dance, LCFD dance, divinity school, workplaces, the greater gay community, the Unitarian church, political action groups, and probably others. He was constantly finding friends and bringing them home, introducing them to other friends. And yet last night, during the early part of visiting hours, I recognized very few people. A wide net indeed.

And his stuff! Graham had books, Daniel had things (and many of them were large) -- many family heirlooms. He also had china; he wanted his every day china to match, so he had a lot of it, maybe 12 place settings. And I remember helping G&D pack their Morrison Ave house and then unpack in Wakefield. I did a lot of unpacking in the kitchen, but I concentrated on a generous built-in china closet in the dining room, artfully arranging items so they could be showed off. The next time I visited, the entire closet was crammed with twice as much stuff, and it's possible that more was in boxes. There's a storage room off the mudroom which contains vases; Robert calls it the vaseoleum.

Last night at visiting hours, I mentioned to D's brother-in-law, Jeff, (the new husband of D's angel-sister Rachel) that there's a huge community of dancers who would love to help. When Daniel was starting to get sick, he had started the process of selling his house. I asked Jeff how they were going to handle all the stuff, and he admitted that they'd need some help. I said that it would be healing for me, and possibly others, to help with the last packing. So perhaps I and other dancers will work on that in the coming weeks, when the family is ready to call us.

I'm still not making sense of it, and I know that. As Robert said, sometimes we'd see Daniel several days in a row (perhaps at a dance, then at a party, and he might drop by to visit). And then we wouldn't see him for months (though I did have a fairly regular email correspondance with him; I tried to have a phone corresondance, but he was rarely home). So, except for dance camp, it's as if we're continuing to have a normal relationship with him, minus the email. I feel that I'm entering into that new space, but am not quite there yet. Perhaps tomorrow night, the memorial service will help.

Daniel has died.

Daniel Eaton Pentlarge
January 7, 1958 -- September 21, 2004


I don't have a lot of words right now. So I'll use what Graham wrote:

Shortly after 1:00 p.m. this afternoon, my former partner and closest friend, Daniel Eaton Pentlarge, died at Mount Auburn Hospital in Cambridge, Massachusetts. He was forty-six years old. The exact cause of his final illness and death is still under exploration; what is clear is that his body failed to mount an effective defense against a catastrophic fungal infection of the lungs.

Born in Boston, Daniel was a proud resident of Worcester until his adulthood, and a proud resident of Boston thereafter. Disappointed in his lifelong dreams of Unitarian Universalist ministry, he went on to become an important lay leader in every congregation of which he was a member. He frequently worked in social services, and had a special empathy for plight of the mentally ill; most recently, he was an administrator at Kurzweil Technologies.

I am glad that I had some part in introducing him to contra dance and English Country dance, both of which brought great joy to his life. Some of you may know Daniel as the author of "Be a Dance Angel," which is an important distillation of his strong views about the creation of community through social dance (CDSS News Mar/Apr 2004, #177).

Daniel was cherished for his compassion, wit, geniality, and intelligence. We are all impoverished by his death.

dance camp

Dance camp was lovely as always. The callers were superb, the music was wonderful. We were in a new place which was fine, but not spectacular. (And of course, the monsoon on Saturday made running between buildings a little tough.) But the real treasure was in the people, many of whom I"d never know if it weren't for our twice-yearly camps.

I spent a lot of time with G, Daniel's former partner. I've missed him a lot since he moved away. It seemed to me that we spent very little time talking about daily life stuff. Instead, we got right to the big stuff. (For one thing, he's part of the very small "inner circle" for Daniel, and has been visiting him from his home about 100 miles away.) I don't know if we said it all, but we said a lot. I'm quite pleased to see G standing on solid ground, making a new and important life for himself. I don't think I've ever seen him so peaceful, and that in the middle of Daniel's crisis.

I surprised myself by deeply feeling Daniel's absence at this camp. I realized that he's been such a big part of camp for several years now.

I also talked to David F, whom I've known for a while, to Andre, the brother of someone I know better. And Michael H, whom I've seen quite a bit but never conversed with. We had a marvelous conversation about his life work and how he can start doing it and where he might live that has meaning for him. And I talked to Dawn about travel, and a host of other people too.

All these people are dear to me, and the connections so important. I start out at dance camp feeling eager to go, but reluctant once I arrive. And then slowly, I open up, possibly through dance, until I'm in a loving space, one with fewer barriers than everyday life. When I leave, I'm often near tears at the thought of not having this for another half year or more. I still haven't figured out how to recreate that magic in daily life, but I'll keep working on it.

OK, gotta go swimming, so will leave off for now.

daniel is still with us

Daniel is still with us. Yesterday, I wrote to a friend,

At dance camp, I was able to spend some time with G [Daniel's former partner], a real treat for me, and I hope for him too. He got at least one phone message that essentially said "Daniel is still alive." I try to think about where Daniel is right now that the fact of his being alive is news. I try to imagine what he's experiencing and what he might remember, should we go to the next stage and there's more (happy) news. I try to imagine what getting better might mean and what he might have to learn in the process. I hope that he's not scared right now, that he feels peaceful and safe.

I greatly admire those who are making this journey with him -- his doctors, nurses, sisters, G, and other loved ones.

dancing the weekend away...

We're off for a weekend at dance camp, our twice-yearly gathering with friends, loved ones, and potential new friends. It's like being a kid again -- you get fed by the camp staff, there's singing, crafts (we make name buttons), swimming (usually), hiking (on our own), and activities (dance, dance, dance). We also have a variety show (which is purposely not called a talent show), and we sleep in cabins and dorms. Oh, and on Sunday mornings, we worship at the altar of English dance. Sometimes we go to the church of Michael; this time, we're scheduled to go to the church of Graham. Looking forward to the renewal.

job update

I started my new job on Monday, so I've been there all of two days. These people are like the old Rational folks -- HAIR ON FIRE. Things happen quickly, and there are few barriers that I've noticed to getting work done. Nearly everyone in the company sits within shouting distance (not that anyone does shout -- it's fairly quiet; people seem to use instant messaging), making communications quick and easy.

First impressions:

• People are nice, but not terribly social. I'm going to have to get over being shy if I want to make any work-friends there. I'm making a little bit of progress on that front and need to do more. And I'll have to make a point of eating in the lunchroom from time to time -- at least weekly if not more often. That's where a lot of the engineers seem to gather and they're a little social there. (They still mostly talk about work, which is fine. They seem to have interesting discussions.)
• The product is complex, but a lot of the hard stuff seems to be reserved for admins. I'm starting to form a framework of the kind of work I'd like to do there. But that of course is dependent on what the real customers feel are their pain points, and any new work coming up. My two goals right now are to do some initial interviews about what people (especially those with customer contact) are hoping to see in the documentation and to learn the product.
• My boss is great. I'm getting to know him little by little. Yesterday, I was concerned about some issues with paperwork, and he agreed about some of the points. But he finally said, "listen, I'm thinking long-term. When I move on to my next position, I'm going to want to take the best people with me. Why would I want to cause you to mistrust me if that's my long-term goal?" Wow.
• There's also another boss, not actually my boss, but someone I both sit next to and will interact with a lot. She's done a nice job of taking me under her wing, but so far, I haven't leaned on her very heavily.
• Oh and I should mention that the place is incredibly diverse. Women are in fairly short supply, though they seem to have important positions there (except that there are no women engineers, and no women execs). The execs are mostly white guys except my boss. But in the rest of the company, we have folks from many different countries and with lots of different skin colors. In so many companies, the "diversity" is just non-white uniformity. I'm impressed by this aspect of the place.

So far, so good. No regrets yet. I'm looking forward to what's next.

life, death, both

Wow -- 47 degrees this morning. Still haven't admitted that fall is barrelling down on us, so I haven't started closing the windows at night. I will admit to a small bit of decadence, though. I turned my floor on this morning. I have a heated floor in the new bathroom and I'm very much looking forward to taking a shower in a few minutes and stepping out on warm tile. Toasty toes.

Daniel is still with us, "stable," as my correspondant calls it. I assume that means that he's still unresponsive. But they're giving him platelets and dialysis. There's a plea for blood and platelet donations, but even though it's for Daniel, I'm not sure I can do it. I often think of other things to do (besides feel massively guilty) around blood donation time, so maybe I'll think of something this time too.

Oh, and I hope NOT speaking of which, there was a great article in the paper yesterday about hospice, an institution I think a lot about. Traditionally, hospice has been reserved for people who have gotten to the point in their disease that they can turn away from healing and move toward dying. So entering treatment typically means no longer receiving treatment except for comfort care. But it also means that people often don't get a lot out of hospice services because they sign up so late in the process -- often in the last week of their lives. (I actually knew someone who was in hospice for just a week, another person who was there for just a few days.)

The new trend is to allow some overlap -- some treatment along with preparation for possible end of life. I think this is a healthy approach; I remember long conversations with one friend about living his life on two paths -- preparing for the worst and hoping for the best. This approach seemed to help a lot. He could work on getting better while still putting his affairs in order. Toward the end, he didn't have to scramble; everything was in order.

I hope this new trend takes off. We rarely see things in black and white. It's too hard to predict the future, for one thing. Miracles DO happen, and hope is such an integral part of living a full life, even at the end of that life.

daniel's adventures...

Well, Daniel is still with us on this amazing roller coaster adventure. It was hard to interpret the last email about him, but apparently he's not entirely in hospice, from what I'm reading. He's "unresponsive" (which may mean he's in a coma), he's not as heavily sedated as he was, but he's being kept "comfortable" on a mild dose of morphine. His kidney's don't work right now, so he's received dialysis, and his immune system is in disrepair.

And one of the lines in the email was that we're all still hoping for a "miracle." I think the concept of "miracle" takes on new meaning at times like this. It sounds like at least several minor miracles have already happened and it remains to be seen whether there will be others. We all hope so.

grimmer

The email about Daniel today said that he's not going to make it but they'll keep him comfortable. There are many things to be grateful for -- his excellent medical care, the attention to his changing needs, and his circles of family and friends -- many many people care for him and have been sending him supportive and loving thoughts.

It is nearly time now to turn our attention to his caregivers, heroic people who have accompanied him on his journey. Soon, their paths will diverge; his survivors will need to walk back toward light and life, and make sense of what it all means.

As Dave Barry would say, "I'm not making this up."

Maybe I should check the political affiliation of my doctors? How frightening.


News article:

POPLAR BLUFF, Mo. (Reuters) - President Bush offered an unexpected reason on Monday for cracking down on frivolous medical lawsuits: "Too many OB-GYNs aren't able to practice their love with women all across this country."

The Republican president, long known for verbal and grammatical lapses, included the anecdote about obstetrician gynecologists in his stump speech attacking Democratic presidential rival Sen. John Kerry and his running mate, Sen. John Edwards, a former trial lawyer.

At a rally of cheering supporters in Poplar Bluff, Missouri, Bush made his usual pitch for limiting "frivolous lawsuits" that he said drive up the cost of health care and run doctors out of business.

But then he added, "We've got an issue in America. Too many good docs are getting out of business. Too many OB-GYNs aren't able to practice their love with women all across this country."

Unfazed, Bush went on to deride his rivals as "pro-trial lawyer," and concluded, "I think you've got to make a choice. My opponent made his choice, and he put him on the ticket. I made my choice. I'm for medical liability reform now."

big sighs of relief

Two major things happened today.

Most importantly, Daniel is apparently still with us. He made it through the night and I haven't yet received *that* dreaded phone call. From what I understand, he's in a form of suspended animation. He's on a ventilator. He's also heavily sedated so that the ventilator can do its job with no interference. I've been trying to imagine what it would be like if my whole job were to breathe, or allow a mechanical device to help me breathe. Breath in. Pause. Breath out. Pause. Each breath a minuscule but crucial step toward the possibility of coming back.

Of course, this is our job every day, but one of many, and one we take for granted nearly all the time. Breath in. Breath out. Breath in. I'm hoping that in the coming days, weeks, and months, Daniel will add more jobs. For now, he's "stable," though, a very good thing. I think I'll hope for some more "stable" for a while.


On a completely different note, I appear to have a new job. My partner, B, will not be coming with me (sniff!!!), but it sounds like I'll get to work part-time (after some intense ramp-up time) and we'll find a virtual B, not as good as the original B, though. Not bad. Not bad. I'm amazed at how hard we worked to get this job, and I'm very impressed at how hard the people at the company worked to get us. I hope they're pleased with the results.

Oh. The company is Idiom, a "mature startup" with fewer than 50 employees, though they're trying to grow. Interesting product, fascinating and enthusiastic people.


With these two pieces of news, I feel like a tremendous weight has been lifted, like there's some new energy somewhere in there. Hooray. And onward.

no news is ...???

Well, the news about Daniel got a little worse today around 1pm, or maybe I just heard more of it. It sounded like the family had been summoned and there was just watchful waiting. And then... nothing. I'm hoping that no news is indeed good news, at least for now, at least for this minute, and the next. Fight, Daniel, fight!

Disconnected and grim news

Many things happening this weekend and I can't say much more than that. Suffice to say that I'm feeling a little weird, a little down, somewhat disconnected, in fact a lot disconnected. I keep feeling that "the connection is broken," but it is and is not a specific connection. It's an odd feeling. Lots of weird dreams last night, with appearances from people with whom I haven't been connected to in a while, but from whom I haven't had a specific break. Some of the discombobulation involves my sitting and waiting. For other parts, the ball is in my court and I'm not particularly moving, at least not right now.

My friend Daniel and I actually did have a rupture -- I felt dismissed by him late this spring and as a result haven't been in touch, though I've certainly been thinking about him. We have been close at times. In fact, he performed Robert's and my commitment ceremony four years ago and did an admirable job. Earlier this spring, I was actually rather stunned to find myself sitting on the outside of his circle when moments earlier I was inside.

Well, by my calculations, Daniel has been in the hospital for over a month. I didn't hear about it when he first went in. But since I found out, I have tried to stay updated about his condition and to offer my support to those who are closer to him right now, including his former partner and dear friend, G.

He was quite sick and quite weak, but started to make some good progress and was even moved to a "normal" room, if any such thing still exists. Apparently, last week, he suggested that it might be nice to see me or hear from me. And of course, last night, I finally had the wherewithal to start working through the small circle of caretakers to ask if he still had the same wish.

This morning, I got the following email:

Daniel is back in CCU and he is not doing well. His breathing was getting more and more difficult and he was put on a ventilator last night. The doctors have been unable to determine what process is going on and so don't have any specific way to treat it.
At this point it seems that the only way things will resolve is if Daniel is strong enough to fight off whatever is going on. He is in a very weakened state and it is unclear that he will be able to do that.

Very grim news indeed. I've been feeling stunned all morning. The connection tightens, the connection loosens a little. Right now, I am hoping that Daniel has some hidden reserve of fighting strength and that he's able to overcome this setback. I know that he has a huge community of caring friends who are all hoping the same thing.

Anatomy of hope

Oddly enough, this weekend, I finally picked up Jerome Groopman's latest book, The Anatomy of Hope. JG is a hematologist and oncologist and both performs research and sees patients. His book aims to explore the role of hope in healing. Some of the patients described had hope and died anyways; others needed to be encouraged to find hope somewhere before they could proceed with healing. And one in particular had no hope whatsoever, believing that she had brought God's wrath on herself and didn't deserve to hope or to live. Some of the people in the book were doctors, themselves, people who treated the very illnesses they were suffering from. And JG describes his own personal hopeful journey, an experience that I'm convinced makes him an even more compassionate doctor.

The book falls down in two places -- one a rampage against so-called "mind-body" studies. This may just be a matter of semantics -- there are certainly people out there who promote the idea that if you only believe enough in your own healing, it will happen. This view was prevalent in the early, more hopeless days of AIDS; Louise Hays, I believe, was a leader in this area. OK, I'm willing to trash that movement also; I'm not particularly invested in that "blame the victim" game. But the mind-body movement that I'm familiar with is actually very much in keeping with Groopman's approach, and I wish it hadn't been swept up in his disapproval.

The other area where I found the going a bit rough was in the later chapters where Groopman felt that he needed to describe the scientific ramifications of hope. After all the warmth in the earlier part of the book, the cold, clinical description just didn't do much for me, though it was interesting. I just felt like it was part of a separate work, like Groopman had to include it to validate his study of hope as a scientist.

I did, however, enjoy reading about his relationship with his patients and his growth as a person relating to patients. He talks about how in medical school, and even afterwards, doctors were encouraged to focus on the clinical aspects of a patient's progress, but to avoid all discussions having to do with emotion or spirituality. Having been around a fair number of hospitals, I'm especially grateful that he's grown away from what he was taught. He concludes that it is appropriate to focus on the less clinical aspects of a patient's healing. Or perhaps I should say that I'm grateful that he's recognized that emotions, spirituality, faith, and hope are integral components of a patient's healing, as defined for that particular person. And that perhaps is one of the most striking, yet unspoken, conclusions -- that healing does not necessarily reflect a "successful" clinical outcome.

This book is a keeper, one I expect to return to multiple times as life circumstances change.

More information: http://www.jeromegroopman.com

busy week

It's been a busy week. Robert moved, though I admit I was more helpful during the packing and supervising-of-movers phase than I've been during the unpacking phase. I haven't been exactly unhelpful during this last phase, though, and I expect to do more this weekend.

In addition, my little consulting gig heated up this week. These things are unpredictable, but two articles suddenly needed intense attention (I'm still finishing one up). There may be more next week.

And the job I've been applying for has required some attention -- lots of discussion with B throughout the week. Yesterday we went in for a third interview, got all jazzed up by what we saw, and got an offer which we won't take in its current form. Darn. And I was practically drooling, too. So B and I will need some more phone time, and soon, because we've said we'll get back to the manager by today. It's clear that the answer is "No," but I want to make sure we say it right.

There have been a few more items I've needed to attend to in the midst of this flurry. Unfortunately, a hospitalized friend has not been getting any attention from me at all, though he has been much on my mind. The good news is that his condition seems to have been upgraded from terrifying to worrisome but improving.

Moving and Milestones

Today, Robert moved into my house, soon to be "our" house officially. This event marks several significant milestones.

• Of course, it's a huge milestone in our relationship. After years of not living together, we're confusing all our friends by exploring what life is like when we're both based in the same house.
• It means that the construction project on the house -- the one that's been going on since December -- is winding down. The entire house is now livable after months of disruption that seemed to move in outbreaks from room to room and floor to floor. Just last week, the master bathroom was finished. And now there are just a few small matters to attend to.
• It's been ten years to the day since Robert moved to his apartment, probably the longest he's ever lived in one place. What a great way to celebrate -- by moving! I hope he (and we) get to live here even longer.

The move went smoothly; the movers were cheerful, careful, witty, and very pleasant. The piles they left behind were surprisingly small. Robert should be substantially settled in by the end of this long weekend. And Robert and I seem pretty relaxed and content despite our anticipation of high stress levels.