First, I would like to say I am not sad, nor maudlin, nor depressed, nor frightened, nor facing a life-threatening illness. Instead, I am in the midst of the happiest and richest years of my life (to date) and am able at this point to look at this topic optimistically…and further, want to really acknowledge those who have taken it upon themselves to be the Docent’s of end-of-living journeys. I use the word Docent because the metaphorical relationship to those who guide us through museums, telling the stories and histories of great works of art, being an expert in pacing and explanation…it seems to fit with the Hospice nurses I have met and those involved in Palliative Care. They are guides while they are caregivers; they see art where I might see fear; they see what is in order and what is beautiful and train the eyes and ears of those less knowledgeable. For me, today, it seems to fit.

All of that said, I would never have expected to be as familiar with the death and dying process as I am now. I had anticipated for years the inevitability of my grandparents dying…then, as I got older, my own parents. However, going through the end of life process is so very different that just “dying.” I am acutely aware that in the same way living is a process that exists in space over time, so is the deathing process in space over time. It has a physicality about it that can neither be avoided nor denied. But, the process of dying is only entered when one does not end life abrubtly…suddenly.

My own mother died somewhat knowing that this could be what was up for her…but, her dying was so sudden neither she nor any of us could take it on like an event. It was over before it got started. I have thought for many years that she won the game of life because, had she not died, she would have been told she had terminal cancer… the ending would have been the same, but the process so very complex and difficult. My Father and Dallas’ parents both had longer lives, longer to deal with the end of life…the epilogue that spelled out new terms for living, that negotiated a different day-to-day perspective, that demanded a strength of spirit from all of us to walk through this holding hands until we had to let go.

So, what is it that Hospice and Palliative Care offers to this bookend of life? Regardless of the rhetoric and liturgical explanations of what death is in relationship to life, the reality (from where I see it today) is that we each will live until our last breath. I will be alive and conscious to some degree until my body stops… And, the question I have had and continue to ponder is how I will handle my own awareness of entering this epilogue of life, the chapter that is headed up “The End of Susan’s life.”

My sister-in-law, is a Hospice nurse. Susan Talon-Mazer…the docent of life to her patients and their families, she has brought such conscious value to how life is lived each day. She has also brought that sense of being present to her kids and husband…and to Dallas and I. I know that I cannot know what she knows about dying, but we are all blessed by what she knows about living. When my Dad was in the last hours of his life, I called her on my cell phone. She asked that I put the phone up to his mouth so that she could hear his breathing. She then knew what stage of dying he was in; She guided me as to how I could best mid-wife him into his next life. Only one who embraces this part of life can understand this part of death…the entry.

I hope that as I live the next few decades (being optimistic), at the end of it all, I have a caring docent to walk me to the other side. If my husband precedes me or follows me, that neither of us will have to walk through this denying what it is or the privilege of this process.

What has your experience been with Hospice? With watching the magic of palliative care clinicians and nurses invest in the comfort that makes life livable? How has it felt to you to be with someone when they died…or knew that they were dying? If we had to draw the picture out, how would we each graduate from the High School of Life…to go on and to carry-on..?

Next week, I am presenting at the second annual conference on Environments for Aging in Tucson, AZ. I have been preparing for this event for a long time…and, yet, it is one of the most difficult for me to do. Aging is personal. It is not something I detach from. Well, I really don’t detach from anything. Rather, I attach in different ways to different experiences I have not personally had. In this case, Dallas and I are aging…trying to keep our sense of humor about it…and we both have had long and profound experiences in walking our parents through to the end of their aging process. That is why this conference has different meaning for me. I just know too much.

Our experiences relive themselves as I develop my presentation on designing for the hearing impaired elder. So many jokes about hearing impairment. So many times we would get frustrated, “Dad, you are not listening!” So many times we would not want to hear the same story for the millionth time, or, so it seemed. Now, we understand and now is too late to redo how it was.

We actually tended to our parents in ways that make us feel good. We just know that had we known what we know now…had we known how the end of the story would play out, we might have responded differently…or we may not have.

I wrote a paper on environment, perception, and aging for my PhD work. It was like this presentation. While academic, on one side, it was also very personal. None of us, if we are fortunate, will get out of this life without getting old. The only way to skip it is to get out early. Seems like a dire alternative to not looking good. And, looking good is relative, isn’t it?

Earlier this month, we went to Detroit to celebrate my harp teacher’s 80th birthday. This was one we were not going to miss. Liz Ilku had survived eight decades and came out wanting a big bash. When I met her, she was 37 and I was 17. She had two babies, had been principal harpist in the Detroit Symphony for 13 years, and was gorgeous and talented…and became my heroine. I had been playing the harp for only three years and had not yet heard anyone thrill me the way she did. That thrill is as alive for me today as it was then.

Then, she began a second career, a real career in healthcare. She had a bad bout of encephaiitis.meningitus, collapsing on tour and taking almost two years to return to her career. Her husband, only a few years later, at the age of 42, was diagnosed with Parkinson’s disease. Later in her life, she had two bouts of cancer, dermatamyacitus, took some terrible falls, and began to see her own small body yield to spinal stenosis. Thus, her career as a patient, a survivor, knowing how the Emergency Room feels, how recovering from Chemo feels, how being on steroids for five years feels. This was the second career that she did not count on.

That is why we had to be a this party. And, that is why, when all is said and done, if we are fortunate, we will live long enough to struggle with out hearing, walk slower, joke about the meaning of “Depends,” and be grateful that we are still around to play our the last chapters of our lives.

By the way, n the middle, on her 70th birthday…after the first bout of cancer and her two falls, she recorded her first CD: A jazz CD. We flew out for the CD release concerts…for the same reason that we came to this party. How could we miss it?

March is spring…and the budding trees can bloom again. Clearly, the older the tree, the more blooms to have, and the more we become bonded to what they bring us each year. That is what I hope. That as we each get older, our blooms are counted on by others…and the winters of life pass and we each look forward to Spring again.

As I said in my newsletter message, the month is filled with holidays, beginning with Ground Hog Day, (here) the Nevada State Caucus, then Super Tuesday, then Valentine’s Day, then President’s Day, then, all together, Black History Month. What I find to be difficult is that the healthcare issues so critical to each of us does not have a “day.” After all, for all of these days…three day weekends, dinners honoring someone who has contributed notably to the community, television monopolies of elections and debates…the fact that millions do not have insurance, are under-insured, or are otherwise unable to access the care they need, draws cursory dialogue when, if a whole day were devoted to health and wellness, it might bring more attention to what we don’t do the rest of the year.

I am admittedly being somewhat sarcastic. I realize that isolating one day among other “one days” is hardly enough to alter the collective consciousness needed to transform our relationship to health. However, it is no more or less feasible to impact decision making than any other proposal to date.

Lee Kaiser, in 1990, said that assumption that managed care could fix what was then a faltering system was like rearranging the deck chairs on the Titanic. The question now is if even knowing that we are sailing the healthcare ship called Titanic is having any impact at all.

There is hope, however. The hope does occur at the bedside, when a nurse’s hand holds the hand of a patient or family member; when a physician walks into a patient’s room and uses her skill and compassion to relentless persue life and living on behalf of her patient. We hear about it all the time…when noticing how reconnecting with our own humanity, sharing the fears and anxieties, the losses and gains in the human process becomes the currency exchanged from heart to heart.

I am hardly cynical as I know at this moment, more people in high places are well aware of the problems now and ahead. I also know that more hospitals are investing in wellness than ever before. So, let us continue to celebrate all the holidays in February, the flowers that blossom…and know that for each month, the opportunity for healing ever present.

For the last three years, Dallas has been performing with the Swedish Indian-Jazz Fusion group, Mynta. He left on Monday, January 21st, for New Delhi, and wrote the following as the first of several entries reporting on his experience. I share this because he is so brilliant and rich in describing his experience and because so many enjoy his writings..

Blog 2

January 23, 2008

Blog summary: After a ten-hour United Airlines flight from SF to Frankfort, a three hour layover in Frankfort, a six-hour Lufthansa flight to Delhi, arrival in Delhi, the first day, the first concert.

A Special Feeling

Years ago, when Susan and I were regularly working as entertainers on cruise ships, we had the memorable experience of sailing out of San Francisco under the Golden Gate Bridge. It was the most amazing feeling…to watch the Golden Gate recede in the distance…to know that we would be totally out of touch (at least for a few days) with telephones, bills, friends, work, i.e. all the components of day to day life. That’s why cruise ships are such a popular type of vacation setting.

I had a similar feeling when I finally took off from San Francisco yesterday, after my unexpected 16 hour layover there. Settling in for a ten-hour flight, I first caught up on reading some of my backlogged Sunday New York Times Magazines and book review sections. The one from Jan. 6 of this year was devoted to Islam…very interesting. At some point, I slept for three hours or so. When my brain started to reach overload, I switched to reading the Funny Times. Finally, when I couldn’t read any more, I pulled out my IPod and listened to some new music I’d recently loaded that I had not gotten around to ever listening to in its original CD format.

Thoughts on Thinking

Two quotes in the Funny Times struck me, here quoted as I best remember them:

George Bernard Shaw: Most people never stop and think. The more ambitious ones have perhaps one thought a month. I personally have been making a good living for years from having a new thought on the average of once a week.

Leonard Bernstein: Opportunity occasionally knocks. But most people expect it to drag them out of bed and make breakfast for them.

Ultimately, a ten-hour plane flight offers the opportunity to just think. (Whether the resulting thoughts will be original or not is another matter.) I thought about my upcoming tour. I thought about specific pieces that I will be expected to play flawlessly that I haven’t played for a year. (This was like a mental music rehearsal.) I thought about several of the varied responses I’ve already received from the blog I wrote in the SF hotel room. I thought about my wife, family, friends, how lucky I am to be able to make this trip. I thought about the mentalities of different geographical locations. On the one hand, our modern lifestyle of work, schedules, cell phones, etc. is found throughout the industrial world. On the other hand, Germany feels different from the US. India feels even more different. I realize that as a result of my extensive travels, I am something of a cultural chameleon, adapting to wherever I am, just like I regain my Southern accent when I go back to Georgia, and then lose it again when I leave.

Time to think…what a delicious luxury! I don’t know why I get so caught up in life that when I am forced to be still and think, it feels like I haven’t done it for awhile. Susan and I have been going to the health club and exercising regularly for the last three months. It feels good. Maybe we should try to carve out some daily time for reflection, meditation, or just plain old thinking. Other people do it. Why is it so hard to balance everything that one ideally would like to do? Sometimes I feel like life consists of isolated moments of clarity separated by days, weeks, and months of semi-consciousness or worse.

A Small Political Act

In my three hour layover at the Frankfort airport, it was always my intention to purchase some rum at the duty free shop for my Indian host and friend Kirit. My choice was Havana Rum, imported from Cuba. It’s so ridiculous that the US restricts its citizens from traveling to Cuba or buying Cuban exports. And so in my mind, my little purchase was a protest against that policy. I have no idea if the Cuban rum is better or worse than the Jamaican rum for sale on the same shelf. I will hopefully taste it at the party that Kirit is arranging for day after tomorrow, at which Mynta will perform.

Airline Comparisons

Departing Reno was traumatic on several accounts. Besides the flight being late, the United check-in counter was staffed by one single stressed-out agent. The new system is that passengers must first check-in on the video kiosks prior to receiving their luggage tags from the attendant. Since I was flying internationally with a paper ticket, I was unable to use the kiosk. I waited for what seemed like quite awhile, while the agent distributed the luggage tags to the passengers who were using the kiosk check-ins. I tried to get her to check me in, but to no avail. Finally, the lady said to no one in particular, “I’ve been working non-stop for eight hours…I’m now off duty!” With that, she left the thirty or so people waiting stranded at the counter. It was outrageous. Finally, from the back room, two new agents came forward to wait on me and the other frustrated passengers. At that time, I was still thinking that I had the chance of making my original flight connection.

Unfortunately, United Airlines compares very unfavorably to Lufthansa. The two airlines use identical planes, the Boeing 747-400 jumbo jet. The 747 has to be one of the best American products of all time. After reigning as the world’s largest commercial jet for twenty years or more, it is finally being overtaken by the even larger European-made Airbus A-380. The United jet was only half full, while the Lufthansa jet is packed. On United’s ten hour flight, we were served only bags of pretzels and a ridiculous sweet roll (which I refused) at the beginning of the flight, and an ice-cold turkey sandwich for “breakfast” before landing. Beer and wine cost $4 and $5. Meanwhile, on the packed Lufthansa flight, I’ve been given a free beer already (a good German one in the bottle), and a hot meal is forthcoming. How bad does the US airline service have to get before management notices that their flights are half full while their competition is filled to capacity? It’s similar to the American automobile manufacturers resisting fuel economy, and then they’re surprised that Toyota has overtaken GM and Ford as the new world’s largest auto company, years ahead of Detroit in developing and marketing fuel-efficient hybrid technology. It’s sad.

I was just handed a hot hand-wipe in preparation for meal service. In other words, the service is great. The contrast with US air carriers continues to annoy me. Is this another sign of the irreversible decline of American culture?

Arrival in Delhi

After my delay in SF, it was anticipated that I would arrive in Delhi (around 1am) at the same time as the Swedish guys. But in Frankfort, I got a text message from Christian that they were delayed and would not arrive until the next morning. And so, I arrived in the middle of the night, stood in my first crushing Indian line, and thankfully retrieved my luggage.

Like other Indian airports, the New Delhi airport charges an admission fee to anyone wishing to enter the baggage claim hall to meet their incoming passengers. So the first line of greeters consisted of representatives from the Hyatt (and similar ritzy hotels) as well as industry and government greeters. As one leaves the hall, one sees a throng of people waiting outside, looking for their arriving parties. Many are waving signs. There are guards at the entrance to hold back the outsiders. It feels like one is about to dive into a raging river of people. I stepped into the river with trepidation. My uncertainty lasted only a moment until I saw a guy holding a sign with my name on it. He was the driver hired by our local concert organizer. The driver didn’t speak English, and so we drove the half hour stretch to the hotel in silence.

Seeing the streets of Delhi late at night, totally deserted, is a stark contrast to how they look in the daytime. Unlike Calcutta and Bombay, I did not see anyone sleeping right on the sides of the road. We did pass one slum, a “shanty-town” collection of hovels made of cast off building materials, cardboard boxes, and scrap tin. One of them even had electricity, no doubt stolen/hot-wired from a neighboring business line. A few packs of dogs roamed the streets. As we got closer to the hotel, the layout changed to a more orderly spacious grid of wide streets and buildings. This is a legacy of the British presence, and is unique to New Delhi in my Indian experience.

The hotel was a modest, relatively clean, zero-star-rated establishment. I fell into bed around 4am, to be awakened in what felt like an instant later, at 8:30am by the arrival of the Swedes. My intention was to stay awake throughout my first day in order to force my body onto Indian time, a 13&1/2 hour change from Reno. I phoned Kirit, who promptly sent his driver to pick me up, to shift out of the hotel to his house. The Swedes were exhausted and planned to sleep until the afternoon.

It was great to see my friends, Kirit and Kitty, again. Susan and I had stayed with them on two previous trips. It is always great to be able to feel at home with friends in a foreign country. Close to their house, I was able to fulfill one of the main missions of my trip: to shop for Susan and purchase more of the Indian clothing that she has taken to wearing almost exclusively these last few years.

Mynta’s First Concert

For the second year, our Delhi concert was outdoors in a restaurant courtyard with in the grounds of the historic Lodi Gardens. Adjacent to the restaurant is the tomb of the emperor Lodi. His sarcophagus is surrounded by other smaller graves. An Indian fellow standing nearby asked me if I knew the story of the graves. Answering no, he proceeded to explain that in the those early days, it was customary that when the emperor died, his family had to join him in death, which accounted for the smaller sarcophagi. I asked, you mean they killed the relatives? The man answered, no, they were taken alive and forced into the coffins, which were then closed upon them! I have not been able to verify this story, but it’s a good story nonetheless.

Our concert was the opening event for a four-day festival: Jazz, Blues, and Beyond. The promotion for our event was incredible! The band’s picture was in the daily newspaper announcing the concert. Then at the venue, there were at least four television crews and many print journalists lined up to interview us. Christian and I did a live evening news cutaway for a local station. The lady interviewer was very glamorous, asking us questions such as, how do you like India. What did she expect us to say? We heard afterwards that the same station had broadcast three of our pieces in their entirety, interspersed with our interview, with the broadcasted segment totaling 20 minutes in all. Print reviews are bound to follow, but it’s doubtful that we will ever see them.

The concert itself went very well, considering the fact that we had absolutely no rehearsal and had not played together for nine months. The audience of around two hundred was great…very receptive to our Indian-jazz fusion. I had a number of old friends in the audience, several of whom have visited us in years past in Reno. We expect that if we can mount a tour every year, this venue will be a recurring one for us.

Tonight, we will play a private home concert at a mansion inhabited by a cousin of Kirit, whose husband is a government minister. The house is a relic of the British raj period, situated on a huge garden in the midst of the New Delhi diplomatic neighborhood. This home concert will hopefully open up additional contacts to future events on future tours. For the band, it will be a rehearsal, minus Fazal, our tabla player, who had to return to Bombay today.

Tomorrow, we fly to Bangalore for the biggest concert of the tour. We will have a different tabla player (since Fazal is booked elsewhere), as well as an additional Indian percussionist playing the mridangam. But our biggest guest will be vocalist Shankar Mahadevan. He is a former member of Mynta, but has developed into one of India’s biggest pop stars. He can command a personal fee of ten grand for Indian concerts on a regular basis. But he is currently occupied writing Bollywood hit songs and recording on a practically daily basis. The bottom line is that Shankar is an incredible musician. He will appear with us without any rehearsal. We will play some repertoire from the time when he was a Mynta member. But we will also play songs which he has never heard, which he will pick up with one hearing and sing along with the melodies besides scatting in Indian style. This will be an outdoor concert with approximately 3000 in attendance.

That Nevada is having its first ever political caucus four days following Martin Luther Kings, Jr.’s birthday has significance. It is also significant that elections around the world have been horrifically blemished with violence, death, assassination, and fear. For what it looks like here, this caucus is the first hands-on opportunity for individuals to feel Democracy in the moment. We get to go somewhere, stand somewhere, raise our hands and be counted. And, no one here is afraid to show up. At the same time, the focus of this election continues to be a toss up between health care and the war in Iraq.

Nevadans for Healthcare has been relentless in putting out comparisons between all candidates of both parties regarding how to solve the health care crisis. It seems that the focus remains pointed to economic solution for what may appear to some to be an economic problem. Leland Kaiser, healthcare futurist, in 1989, said looking to managed-care to solve the health care crisis (as it was then) was like rearranging the deck chairs on the Titanic. That is true to the issue of using the insurance based model we have now. It is also true if the problem is assumed to be money when it is one of values.

Making small changes, however, could optimize the massive investment now made in the US in health care. Single, standardized forms, a single clearing house for insurance payments, and a limit on the profits allowed to Insurance companies would help but are highly unlikely to occur. All of these would still not solve the basic flawed values that have made health care a profit-making, market driven industry rather than one based on service, skill, and the human right to be cared for when ill.

I am interested in how you would solve this problem. It seems to me that denying anyone health care, needed hospitalization, basic health services, and needed medications for lack of insurance is far worse that giving care to everyone, having equal access, and having the public invest in the health of its members rather than shareholders. Further, I am confused about the perceived difference between public health and public health access.

Market-based systems are biased towards those who have the means to enter and meet the market price. Whether this is better than standing in a need-based cue for care, or having the option of public vs private care…one would have to tell me why denial of access is better.

To the legacy of Martin Luther King, Jr, I would suggest that the fact the the poor face more difficult and health-challenged lives would have been his next cause as the next civil right: the universal and equal rights to healthcare.