risa's pieces

And the next blog will be ...

2011-02-13T16:41:00.000-08:00

Moving to: https://risaden.wordpress.com/

Visit often!

Closing Up Shop

2010-08-26T10:15:00.000-07:00

I've been thinking for some time now about getting rid of stuff. Mostly just thinking about it. I disposed of quite a lot of furniture, books, and sundry duplicate items when I sold my home in Pennsylvania and moved to Seattle. But I carried a truckload--literally--of possessions cross-country, and now two years down the road, I have begun to re-acquire "things", especially books, which now line a whole wall in my living room. And this, despite living in a city with the world's finest libraries.

My niece, who spent a Junior semester abroad in Bolivia and Peru, told me that the people she met during her months there didn't have or use forks. "Everyone has a bowl and a spoon. That's about it. You don't need a fork, really. Forks are kind of pretentious. The people there are just not materialistic," she explained. I'm guessing there is a bit more to the story, but the idealization of living contentedly from spoon to mouth is a lovely one, to my imagination anyway.

There are two reasons for my concern with my own accumulation of things, although they do merge at a future point. First is the rational goal of simplifying my life. Owning fewer possessions, wanting less, living a smaller life, being happy with less, eschewing acquisitiveness, spending less, preparing for a less "thing-filled" aging. Learning to live with less income is an imperative that is no longer lurking around the corner, but has come in the door to greet me. After all, I don't have the job security that I once took for granted. Preparing for a simpler life leads quite naturally to the impending task of preparing for my death.

For many of us at death, possessions float into a world of limbo. Even the most meticulous of planners are likely to leave behind many possessions without a plan for their disposition. The piles of bills and bank statements. The duplicate herbs and spices. The broken TV set. In my case, a large file drawer containing a lifetime of handwritten journals and writings. I would like to spare my son, and others who may have to help him with the task of closing down my home after my death, the emotionally draining burden of going through my stuff and deciding what to do with it.

I have closed shop--so to speak--twice in my life. I've helped with this task many times, but on two occasions it fell entirely to me to close down a home and decide how to deal with another person's possessions. One, my best friend, the other, my mother. Both experiences were harrowing, each in its own way.

Jon lived in the East Village, NYC and died of complications of AIDS in the summer of 1993. Although he had given explicit instructions outlining his political will following his death (please see Jon Greenberg's funeral procession at ACTUP NY's site on Political Funerals), he left no legal will, no advance directive, nothing to guide me in the protean after-death tasks other than an unspoken but clear understanding that I would take care of the details. In his last days in the hospital, he wrote checks to pay his bills, put them in stamped envelops, and asked me to mail them. I did so reluctantly, aware that I would need any funds he still had to help with cremation expenses and to hold on to his apartment for at least another month so that I could close it properly.

On the day after his memorial event in Thompkins Square Park, I invited his parents into his apartment to talk and share our grief. In the short version, his mother accused me of 'stealing' her rightful experience of caring for Jon during his illness while his father appraised his stereo speakers. Only years later have I begun to soften my feelings towards them and their private grief. Meanwhile, I held open house for two weeks, letting friends come and take what they would.

I never relinquished Jon's journals, which I was unable to read until several years later--the grief was too close. Jon came to NYC as a young gay man in 1978 and journaled about his emotional and spiritual life from 1978 to a few months before his death in 1993. I continue to struggle with these journals, and my efforts to publish a series of poems that I wrote as a result of having to handle and hold this burning treasure.

My mother's apartment was a mess at the time of her death at age 82. Thankfully, she was able to stay in her own home until the end, and we had months of really good time together as her illness progressed, but the usual well organized person she had always been dwindled over months or years so that after she was gone it was impossible to figure out what papers were important and which were decades-old bills and bank statements. It was a jumble. It was an emotional train wreck to go through, finding surprises, evidence of my own existence that startled or embarrassed me, evidence of her life that I knew nothing about. My brother was only minimally and peripherally involved in the task and at the end, I had to pay someone a handsome sum to cart the detritus away, feeling guilty, spent, and confused.

Even the recent death of my sweet companion Jezebel-the-cat has left me alone with her possessions, a cupboard full of kitty treats and canned Fancy Feasts, two carry-ons (one in pink-and-green stripes), and other cat paraphernalia. I should take it to a shelter, and will some day, but don't have the heart to yet.

As for me, I am preparing to pare down, wade through, and as consciously as possible, trim the sails. Before I die.

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Here is a practical and informative blog about cleaning out a house after a death.

Planning to Die

2010-08-03T08:22:00.000-07:00

Since I lost a job in palliative care, I've been at a loss for blog material. Or not so much lack of material, but an absent platform. I haven't stopped thinking about end-of-life care, not at all. But for a while there I felt disempowered to write about it. Of course, I have continued to volunteer for Compassion and Choices, and help people who wish to use the Death with Dignity Law in Washington State. After a year as a volunteer, I am now helping to train new volunteers. I have also begun the process of becoming a hospice volunteer. I don't want my skills, knowledge, and passion to be wasted.

Contact with people who are planning their own deaths is so intimate, it's hard to share. In Palliative Care, even Hospice Care, the conversations about death are precious and rare, little gems in the midst of ongoing conversation about illness, redemption, and symptoms. As a volunteer working with people who wish to control the circumstances of their deaths, the entire focus of conversation is planning to die, with little gems here and there about life and its struggles.

I posted one blog on a hastened death, mainly to portray how sacred, safe, and peaceful these deaths can be. Some poems have emerged from this experience. But as a rule, I don't expect to blog about it further. It feels too private and rare to share in a blog.

So what to blog about so that I can stay connected to this community of palliative care bloggers--a group I have utmost respect for. And miss having a dialog with. And with this thought, I realized that I would like to share my own process, at age 60, presumably in good-enough health, of planning for my own death. I think this is a topic I can write about for the rest of my life.

So look for the first installment, coming soon. Meanwhile, indulge me in leaving poem.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The Three-Part Breath

After a cleansing round
of Dirga Pranayama, the three-part
breath, our yoga teacher says,
Pause and trust.
There will always be another
inhalation. In repose, I try
to meditate on emptiness, rely
on the next lungful,
ignore my prattling mind
with its endless to-do lists.

But instead I brood
over an ailing friend
who gasps for each breath,
gathers morphine and valium
plans to claim his deliverance
from respiration. He lingers only
long enough to square affairs.

I hear his whisper in the studio’s
stillness. In preparation for death,
breathing is the last thing
you forget to do.

Harvey Pekar died this morning

2010-07-13T11:12:00.000-07:00

Harvey Pekar was just a guy who thought that everyone--even a schlub like him--has an interesting life, worthy of documenting, which he did brilliantly in his comic books, American Splendor, published between 1976 and 2008. He was, according to his self descriptions, an eccentric, grumpy, chronically underemployed guy who thought his everyday struggles with life in Cleveland, his car, shopping, his wife and family, cancer, and sundry everyday kind of stuff were amply worth chronicling.

He certainly experienced his share of suffering, but he was also remarkably resilient and creative. He had the exact modicum of self respect needed to survive. He possessed a strong desire to be who he was and a total absence of pretense.

He wrote about his life. Without expecting or not expecting anyone out there to care.

His life reminds me that every life is splendid.

Some data from the Washington State Death with Dignity Act

2010-04-26T16:37:00.000-07:00

I have previously blogged about a hastened death that I witnessed.

I thought some might be interested to know what we have learned in Washington State during the first year with our new law. The Washington State Death with Dignity Act was passed by voter initiative on November 4, 2008 and became law on March 5, 2009. In the language of the Act,

"The law allows terminally ill adults seeking to end their lives in a humane and dignified manner to request lethal doses of medication from physicians."

All of the data cited here can be viewed on Washington State Department of Health Web Site where statistics for the first year are reported.

The number of requests for medication is not known, although I personally know that many persons seeking to use the law never made it through the process which requires having two physicians agree, making three requests (2 oral and one written), and a waiting period. In some parts of the state, there are no participating physicians, meaning the law is meaningless to many who would like to use it.

The health department only receives and collects data for persons who complete the complex process and actually receive the medication for use in hastening their death. In the first year of reporting, 63 persons received lethal doses of medication (either secobarbital or pentobarbital) and 47 of these died during this time period. Of those who died, 36 died following ingesting the medication and 7 died without taking their medication. Status for 4 of the deaths is unknown at this time (whether or not they took the medication or died without it).

Of the 47 participants who received medication and died during the twelve months from March 5 2009- March 5 2010:

their ages ranged from 48-95 years
79% had cancer; 9% had neurological conditions such as ALS (Lou Gehrig's disease) and 12% had other chronic illnesses such as lung and heart disease.
98% were white, non-Hispanic
46% were married
100% cited loss of autonomy among the reasons for requesting medications; 91% cited loss of ability to enjoy life; 82% cited loss of dignity
94% of the deaths occurred at home
72% were enrolled in hospice at the time of death

The time to unconsciousness following taking the medication ranged from 1-20 minutes and the time from ingestion to death ranged from 9 minutes to 28 hours. Most died in less than 90 minutes. Three persons vomited after taking the medication and five awakened after ingestion, although all persons ingesting the medication died.

As an aside, I am aware that not all of the participants were given pre-medications to prevent nausea and vomiting, and some were unable to ingest all of the medication. Of the deaths that have been attended by volunteers of Compassion and Choices (accounting for about 80% of them) all took pre-medications and most died within 20 minutes.

Post-Death

2010-03-26T12:24:00.000-07:00

In response to a recent post, a reader left me this question: "I do wonder though, with as much as you know about death, what do YOU believe happens to the individual, after death, if anything?"

I'm pleased she asked. This gives me the opportunity to think carefully about how to share my personal thoughts about the post-death situation. Working in end-of-life care, I have often been asked similar questions. What do you believe?

I'll start by saying that I think of beliefs in general as simply strongly held opinions, and that when pushed, I admit to having no strong beliefs whatsoever. How can we really know anything for certain about this life, much less life of any other sort? Added to the reality that contradictory beliefs abound about everything.

Consider medicine, for example. Think for a moment about medical beliefs that underlied medical care in the 18th or 19th century. Do we believe they hold true today? More to the point, some medical practices from last year are out of date today based on research that may be "disproven" tomorrow. That's why in science, we call everything a theory. Until proven otherwise. Which itself is quite a conundrum if not an outright oxymoron. Or think about the range of religious beliefs, all of which are held so strongly that wars explode over these beliefs century after century.

Ok, so putting beliefs aside for a moment, what about the after-death question? I do in fact have a fairly nuanced view about it, but first let's do a miniscule review of beliefs about the question. In list form, so as not to belabor the point: (And who am I to try to list religious beliefs about death- may G-d forgive my impertinence.)

•Christian- there is a Day of Judgment and the afterlife is spent in heaven, hell, purgatory, or some combination there of.

•Buddhist- reincarnation or transmigration of the soul--taking on a new body after bodily death.

•Hinduism- reincarnation with possible escape from the cycle of birth-death-rebirth at some point through karma.

•Muslim- belief in the Last Day, when the world will be destroyed and Allah will raise all the dead for their judgment.

•Jewish- I can't do justice to Jewish beliefs about the afterlife (only because I am Jewish) but there is a Midrashic belief about reincarnation in the body in the Messianic age. Thus, orthodox Jews will have amputated limbs saved until death so they can be buried intact. Cremation is not allowed for this reason, also. However, most non- orthodox Jews believe that we live on in the future generations' memories of us. Heaven and hell are sort of optional.

•Secular and ethical- belief in the importance of creating meaning in the present life rather than having answers to questions about the meaning of death and the afterlife.

Beliefs about death are fascinating, layered, complex, and a pervasive element of human thought and community. They are not going away, folks. So it's good to have one's own thoughts on the subject. It is good, I say, to think about death.

Ok, so what do I think happens after death of the body? I came to the following ideas after reading Carl Jung's writing about the collective unconscious. Jung was far more nuanced in his understanding of our questions, particularly as we age, about the meaning of life and death, than his contemporary Sigmund Freud. (It always slays me that I have chosen a Christian over a Jew in my own path to understanding how to think about this quesion--as opposed to what to think about it-- but please, this is quite an aside.)

Jung distinguished the collective unconscious from the the personal unconscious of Freudian theories, in viewing the presence of a collective repository of unconscious material (below or beneath awake consciousness) in all organisms with a nervous system- i.e., in humans, apes, cats, worms, etc. The collective unconsciousness guides a species in its behaviors and understandings. Jung was particularly interested in dream material, in as much as it added to or drew from this repository.

So I like to think that when I die, my body will decompose and add to the repository of matter. I am still under the impression that the theory stands: matter and energy are neither created nor destroyed, only changed in form. (I can't decide about cremation for myself- but that's another whole post).

And my unconsious material (encompassing the concept of my energy or my soul) will drop into the collective unconsious of humanity. In my fantasy, this repository exists as a location of sorts, a murky river-like tunnel (worm-hole?) throughout the universe. I don't find it credible that the ego or self survives bodily death, it just makes no sense to me, so the lovely (or perhaps frightening) idea of seeing those who have died before us in the afterlife holds no purchase with me. (Although I often envy those who can hold tight to this belief, and derive comfort from it.)

My life assignment, then, is to live in such a manner that my unconsious material will add to the collective unconsious in a positive way rather than a negative way. To strive towards peace and gratefulness and humility and generosity and compassion in my daily life so as to tone my unconsious material in that direction. So that after I die, my material will add to, rather than substract from, a future for those who come after me.

I can't say I have great hope for our future as humans. But that doesn't relieve me of the responsibility, in this life or after my own death, from struggling in the direction of my own life values. While I claim no strong beliefs-- I'm the religious right's worst fantasy of a cultural relativist--I do have strong values.

Where things stand

2010-03-21T10:35:00.000-07:00

It's surprising and lovely that some of you have asked me to keep posting on this blog and I very much wish to do so. I have been posting occasionally at Open Salon with a more quotidian focus, but I have wanted to maintain this blog for posts about end of life issues. And there's the rub, although I hope I can push myself through the block.

Having lost my job doing palliative care, I have lost a great deal more. Perhaps more than I want to admit to myself. And in the interim since that loss and today, I have turned over another decade, I am now 60 years old. There are two paths I might follow here to explain my situation.

On the one hand, I am working again as a nurse practitioner at Planned Parenthood. I have learned a few interesting things about young people, and have even blogged about it. The best thing I can say about my current employment situation is that I am very grateful to have a job. However (and this is only me, only my feeling, keep in mind) the work feels meaningless. If I stretch, I admit to myself that I provide needed services, a sounding board, consul and advice, and appropriate medical care to women and men in that phase of life we call "the childbearing years." I provide care to people who are mostly young and sexually active. The problems that accrue from choices about sexuality are in my face literally. A sixteen year old with herpes. A bisexual man whose wife is pregnant. Genital warts. Abortion. Women on hormones, women with hot flashes, women with weight gain and depression from birth control methods. Men considering vasectomy, men with HIV infection. It's not an unfamiliar world, I worked for many years in women's health and HIV care. So I have to face why this work has so little meaning for me now.

Leaving that aside for a moment (perhaps for another decade), I feel very fortunate to still have a role in end of life care, as a volunteer with Compassion and Choices. As a client services volunteer, I am assigned clients who wish to pursue their right to hasten their deaths using the death with dignity legislation passed in Washington a year ago. I am their companion through the process, helping them to talk about their end of life concerns, end of life tasks, guiding them through the understandably cumbersome requirements of the law, steps towards obtaining a lethal dose of barbiturates, to use or not as they choose, and attending them at the time of death, if they request. I have attended several hastened deaths now, and have had many conversations with people facing death and their choices.

Choice is certainly a common theme here. The right to control our sexuality, our reproduction, the birth process, the death process. It's all cut from the same cloth, right? I think so, it feels so to me. Yet it is still death that is calling me. Not living, but dying. I am not interested in sex these days, for many years now, living alone happily and feeling that the loss of sex is just another loss along the road. The road towards death. I heard someone on the radio talk about our human prospects for immortality and I thought, Feh!

Morbid, huh? I do think that's what I don't like about the job. Too much about living and the concerns of living, while I am so much more comfortable dwelling in the concerns about aging, bodily disintegration and disability, preparing for death, dying, mourning loss, understanding life from this perspective. Understanding death as a part of life. An appropriate concern. A useful paradigm for my life as it is now.

Well, that's where I am, grateful for a job, yet wanting to go back to my home at the end of the road. So many people work in jobs that don't suit their longings. So many people have lost jobs in the past few years, many never to work again. To be hired at 60 is almost remarkable. I never fail at being grateful.

But still.

It's that time again!

2010-02-07T09:33:00.000-08:00

Grand rounds are here again, this month hosted by Jared Porter at Alive Hospice Blog.

There are quite a few new (to me!) blogs noted, and some very moving pieces. Go check it out!

When work gets in the way

2010-01-28T19:39:00.000-08:00

Yesterday, I was trying to remember what event brought me to palliative care. I can identify so many moments when death and dying have saturated my life. Over nearly 40 years of working in health care, I have always chosen employment in setting of huge, often life-and-death intensity—abortion clinic, home birth, prison, HIV clinic, Emergency Department, hospice, palliative care.

Along the years, I’ve also amassed somber personal losses: my father died when I was 23 without reconciliation between us; I lost custody of my son to his father; in the 90s a close friend died of breast cancer, my best friend died of AIDS, and my friend and colleague Bayard Britton was murdered by antiabortion terrorist Paul Hill. Loving music and literature, I had a youthful obsession with the loss of so many talented musicians and writers to drugs and suicide. Now I am the elder generation in my family, and death is no stranger. Instead of ignoring death, I became fascinated with it.

But the actual moment I was searching for was this: I went on a silent retreat in the winter of 2004 with a group I was meeting with at the time. In the sweet silence, I felt a calling to become a chaplain. At the time, I had no idea where this came from; I certainly had never had the thought prior to that moment. It was simply what it was—a calling.

I acted on it by enrolling in a Masters program in holistic spirituality at Chestnut Hill College, a small Catholic college in Philadelphia, where I studied for two years. I enriched this learning by attending a program in Jewish spiritual direction. Shortly after starting that program, I decided to take a job as a hospice nurse, and then continued over the next 6 years to work in hospice and palliative care. I tried to complete my studies, but work got in the way. I also was accepted to a program in clinical pastoral education at the hospital in Pennsylvania where I was working in 2007; again the job got in the way—my boss would not approve the time for me to take part in that program.

Still my greatest support during my years in this field has always been the chaplains. If we don’t understand death as a spiritual event, then we don’t understand death at all. Now that my time is not filled with the medical aspects of death and dying, I can almost hear that still small voice calling me again. Who knows what will happen next? I can only say that remembering how I ended up in this field has brought me a slice of peace.

Still blogging

2010-01-23T19:53:00.000-08:00

My first efforts at blogging were on My Space in 2007; in 2008 I moved over to Google’s BlogSpot because I liked its features better; and then I started posting on Open Salon almost a year ago. Now I maintain two blog sites.

The impetus for blogging has primarily been to share my perspective and experiences providing palliative and end-of-life care as a nurse practitioner, as well as to convey the effect of doing this work on my own psyche. My initial intention was simply to post whatever I wrote to both blog sites, hoping to increase my readership and engagement in the discussion. Both of my blogs are called Risa’s Pieces, and both bear my full name.

But more and more, I am using my BlogSpot space to blog about palliative care and the OS blog to report on my life’s journey. I have found a community of precious comrades working in and blogging about palliative care who primarily visit me at theBlogSpot site; and too, I have found a community of wonderful blogging friends at OS that are interested and supportive regarding my day-to-day struggle of living. I didn’t used to think there was a need for this compartmentalization—ideally the paths would intertwine, certainly they still intersect. But without a work life in palliative care, it felt as if I had lost my calling and had little to say, other than to share my disquieting journey through unemployment and job seeking. I even changed my bio on the OS blog to say: not sure what this blog is about anymore.

I am writing today to say that I am determined to continue to write about palliative care and at the same time I feel the need to write about my personal journey. So I intend to continue to blog about palliative care—in the broadest possible sense—at BlogSpot and flesh out my personal stuff on OS. It is too defeating to think that without working in the field I suddenly have nothing to say. I want to write about palliative care even if I have to make a metaphor of it in order to stay the course.

I am beginning to think I may not be able to continue to work in the field I so love. Yesterday I told a friend that I might take a part time job with Planned Parenthood because I can't find a job in hospice or palliative care in Seattle. She asked if staying in Seattle was more important to me than staying in palliative care, since certainly there are opportunities outside of Seattle. I said, "I don’t want to leave palliative care, but I just can't imagine picking up my life and moving it again right now." As she knew, I sold my home and left a job, family and friends on the East Coast, to take a job out here, which ended after only 15 months. Besides, I have come to really love this area. She could understand my weariness in that regard, and the conversation went on to other things. But it gave me pause.

Before my third and most recent job rejection, I wrote to one friend: It might be better if I didn't pursue death so aggressively. But I am hopeful for the hospice gig.

After the let down, I sent this note to another friend: Well I didn't get the hospice job, and I am applying for a part time gig at Planned Parenthood. Gee, I thought I had a calling to end-of-life care. I guess I wasn't listening right. I'm supposed to be sticking my hands inside women's vaginae. What do I know???

~~~~~~~~~~~~~~~~~~~~~~~~

Let's be clear, I have a long history with women's health and experienced great passion for it during the early years following Roe v Wade, 1973. I had a world of personal experience by the time I was twenty—an illegal abortion at 18, a home birth (well actually a birth in a bare hotel room in Kabul, Afghanistan at 19, but that, as they say, is another story), STDs, patronizing gynecologists. A proud moment for me was, after a doctor refused to remove an IUD that I felt was dangerous to me, I yanked the damn thing out myself. Later, I learned how lesbians were treated within the health care system.

Women's health was my first health movement experience. In fact, my career path is only understandable if you follow the politics. Growing up in a liberal Jewish home, I engaged in civil rights and anti-war activism in my teens, but it took a women's movement to create space for women's contributions to those causes. More than that, it took a women's health movement to uncover how women's bodies define our sphere and to begin to unshackle women’s potential from our biology. The women’s health movement incorporated a gay and lesbian health movement, which in turn laid the groundwork for the vibrant spectrum of AIDS activism in the 90s. It was taking care of people with HIV/AIDS that led me to understand palliative care, we had no good treatments, suffering was enormous, young men and women were dying, and health care providers either turned their backs or rolled up our sleeves and tried to figure out how to be of help.

Dealing with death became my own personal struggle. And it was this landscape and history of health movements going back many decades that gave impetus and meaning to the incipient palliative care movement in the US today.

I think I still have things to say about death and dying, about the health care system that complicates and despoils these ordinary, universal experiences. I still have stories to tell, connections to make visible. I should not allow myself to be silenced simply because I don’t have a job in the field. Writing is its own work.

At the same time, there is so much more than death for me to think about, to study, to interact with, and to write about.

It's that time again!

2010-01-07T20:25:00.000-08:00

Another great-grand Palliative Care Grand Rounds, this one hosted by our fearless leader, Christian Sinclair, over at Pallimed.

Be sure to check out this fab assortment of great thoughts and deep sentiments. Do it now!

On my reading list

2009-12-19T12:43:00.000-08:00

I have just now read Home by Marilynne Robinson, swallowed in a single sitting, impossible to do otherwise. My eyes burn, my throat is dry and raw from setting down the book now and again so I could pace the room for a moment, moaning and wailing, blow my nose, and then pick it up again, not stopping with this procedure until it was done.

I have an image of myself, alone in a cold and spare room, hands held high and open to heaven, waiting for some answer, some revelation, some strength to understand my place. And this room repeats again and again throughout my life as if time itself were made of a succession of this same pose in an uninterrupted track of rooms where I stand alone, arms reaching for what I cannot know or understand, what I have lost and feel unable to retrieve, for my inability to reach what I most need, and the knowing that I will never touch it again, and will in time, stop reaching for such an elusive prize. Mixed in the jumble where I say to myself that nothing is ever lost, it’s just not where I can ever see or touch again, a feeling, a knowing that the world goes on without me, exists regardless of how I try to be part of it or refuse to take my place at the table. This is what I felt so strongly while reading this astounding book, a communion with the spaciousness of time and place and the smallness of a person sliced so thinly within that continuum. What we are allowed to see within the narrow requirement to follow the physical laws of time and place, what we don’t allow ourselves to see because of our fear or arrogance or timidity or ignorance.

Like a human, I have committed a mortal sin and I don’t know what it is, so there is no possibility of forgiveness or repair. That is the condition of living within these rules. That is the reason I rebel and fight these rules. That is why I am best left alone to ponder these questions. That is what I hear like an echo in this book where home is the setting of life’s drama and potential and the novel’s characters drop truths like stones into a bottomless void, while concealing both facts and feelings, as if this were the only way to go on breathing in time and space.

I do suggest you read this book.

Another grand, grand rounds

2009-12-02T09:35:00.000-08:00

Check out December's Palliative Care Grand Rounds at Jerry's blog, Death Club for Cuties. And while your browsing, read his posts, he has great insight and a fabulous sense of macabre humor.

News—bad or good, depending on how I choose to view it

2009-11-29T13:41:00.000-08:00

I learned last month that I will be joining the ranks of the unemployed at the end of this year. This was a terrible shock to me, not because it was so unexpected (although it was completely unexpected), but because I have so loved this job that I moved across the continent to take only a year ago. I believe I have done good work, managing an outpatient palliative care program that was, by anyone’s standards, very successful. Nonetheless, it appears that this work is not sustainable, it does not generate much income and it does not support the more substantial task of managing a hospital based palliative care service. It speaks to the reality that health care services are fragmented, that continuity of care has been lost in our current manner of providing healthcare, and the efforts to paste back some of the linkages between hospital and home are mostly fledgling and unsupportable. So, after a year I have been asked to resign my position so the practice can look for someone more suitable to its needs.

I’ve waited a month to write this because I wasn’t quite ready to broadcast the truth. I’ve just felt too ashamed and embarrassed to let people know. Although I suppose there were some clues that it wasn’t working out flawlessly, stupidly, I really had no idea, thought things were going well. Hell’s bells. I guess I just have had a knack for working for persons with huge personalities; have to just chalk this up as another episode where my intensity clashed with a rigid ego, and as usual, I’m the one packing.

So what am I going to do? I’ve taken stock. I should be eligible for unemployment compensation, which will be a great help if I do not find another job right away. The timing was favorable in some ways, as just after the shock of learning that I am losing my job, I attended the second part of the Harvard Palliative Care and Education Program in Boston and during the week there, I felt an enormous amount of support and encouragement. It seems very likely that I will be able to find work in my field, just have to suck it up and do the thing again, change my life totally once again. Actually, I’m starting to get up to speed. I’ve had one job interview and another one next week, two more planned for the following week. It is likely that I’ll find another job in palliative care in Washington and stay here. I love the Pacific NW, and even though I may not find a job in the Seattle area, and may have to move again, I‘ve decided that I want to stay in this area.

So that’s the story, folks. Just wanted you to know. I’m fine. If you know me, you know I’m open to change and am good at rolling with the punches. This situation reminded me of Ede, my mom, who after many years of stable employment, in her late sixties lost first one job and then another, wasn’t ready to retire, so found one last job, retiring in her 70s. I'll turn 60 in February, and am certainly not ready for retirement, at least not financially! I’ll let you know the next chapter after I’ve written it.

5 Questions

2009-11-25T08:46:00.000-08:00

A palliative care blogger's thanksgiving. Here.

Palliative Care Grand Rounds: October 2009

2009-10-12T21:39:00.000-07:00

Geripal- A Geriatrics and Palliative Care Blog hosted Palliative Grand Rounds this month. Check it out, it showcases some really great blog posts!

kol nidre

2009-09-26T19:46:00.000-07:00

Kol Nidre

There are many ways observe the Jewish faith. The most observant go to shul daily, some three times a day, for prayer. There is the Shabbos Jew, who goes to Shabbos services every week on erev Shabbat, Friday evening, and again on Saturday morning, perhaps on Saturday evening, to usher to Sabbath out with the fragrant havdalah service. Lately, Shabbos services have been abbreviated to Friday nights, or even twice a month in smaller congregations. These are different ways--perhaps degrees--of practicing the faith.

Then there are the Jews who only go to shul on the high holy days, that is, on Rosh Hashanah and Yom Kippur. You have to pay for tickets for these popular services, they are long affairs, with much standing, prayer, meditation, and socializing. Then there are those whose only absolute must-attend service is on erev Yom Kippur, which this year is tomorrow evening. This is when the Kol Nidre is chanted. It is such a beautiful melody, so evocative of centuries of Jewish faith that many of us cry when we hear it sung.

Rosh Hashanah is the celebration of the new year in the Jewish calendar, and Yom Kippur is the "Day of Atonement" when Jews fast and publicly announce our personal and collective guilt and sins, ask for forgiveness and to be "written in the book" for another year of life.

Kol Nidre is an odd prayer, sung not in Hebrew, but in Aramaic (the common-people language that Jesus is thought to have spoken) asking for release from all vows and oaths that we have not kept, and may not keep in the coming year. There are many rabbinic and esoteric (and of course, some antisemitic) explanations of this prayer, but I think it is a lovely way to remind ourselves that we are human and do not, cannot, always keep the promises we make. As the day is spent in repentance for acts of commission and omission, the failure to do all that we hoped to do is certainly a source of regret and sadness.

I certainly regret promises that I did not keep this year. There is the funeral that I promised to attend, but was unable to because I had to work that day; the promise that I would bring a patient a Reuben sandwich , and then forgot, and he died before the next time I planned a visit. My list of small promises not kept is quite lengthy. In my work-life, people often die before I can do what I hope to do, offer to do, vow to do to make their life a little sweeter.

We dip apples in honey on Rosh Hashanah, hoping for a sweet year. Most of us want another year, although I know many people who hope to die, rather than endure another year of suffering. We cannot assume that we have another year to live, or that the year will be good. Certainly we cannot assume that we will be able to fulfill all of our promises this year. I am learning to promise less, so I will feel less regret. Still, I will go to shul tomorrow to hear Kol Nidre chanted as it has been done for centuries, bringing past into present, absolving me for being human, imperfect, less than my promises suggest.

Seattle Air

2009-09-21T16:43:00.000-07:00

Today I noticed the air in Seattle. It’s soft, spongy, almost silky. As waters in different places differ to the mouth, local air has a unique sensation against the face, upon bare arms. The soothing Seattle air makes me happy I moved here. It’s the kind of surprise that keeps me plodding on through my life, taking risks, hoping for the salvation of discovery. Not same-old, same-old every day, but something entirely fresh and welcome to consider.

Yesterday, in yoga, during shavasana—the corpse pose that conclues every yoga class—I spun off and left my body. This is not an experience I have often, maybe once in a decade. I don't know if most people do or do not have out of body experiences, but in my experience they can be quite seductive. Floating away from the body, hovering nearby, observing all, fully at peace. As the singing bell sounded, softly, softly, a little louder, a little louder, I knew that I was much too far away to re-enter gently. I crashed back into corporeality. There was a dense and painful impact in all of my senses. I was unable to wiggle toes, roll on my right side, and sit up. I felt totally miserable because for a moment, I’d had the sense that I could be alive without my body, without the cumbersome, achy, pain of this body. And yet, I know that I don’t really believe that the consciousness I know as “me” will survive the life of this body. Recovery, re-entry took a while.

Later, continuing with my plan for the day, I picked up Pete from the nursing home and we went shopping at the Village Thrift Shop, Pete making good progress with his cane, 79 years and more spry than I expected. And I needn’t have worried that we would have trouble finding the place. As we circled a promising perimeter, Pete would say, "hmm this looks so familiar" and then lean out the open window and ask for directions willy-nilly at every corner, until someone told us how to get there. I got a parking spot right in front of the store. Pete bought a winter coat and scarf, a spiffy blue sweater, and two pairs of shoes. Very good taste, I thought. We stopped at Rite Aid and he picked up underwear and socks. In less than 90 minutes we were back at the nursing home, Pete humming as he put his new things in the half closet he shares with a roommate.

Here's the thing. Pete moved to the nursing home from the hospital and never once got to go back to his apartment and get his things. He has been without shoes for 5 months, shuffling along in plushy slippers that someone at the home found for him. No one—and this includes me—thought to take him shopping for basics. He had money, but no wheels. He was pretty happy about the outing. To tell the truth, so was I. It’s like the soft Seattle air. The sensation of weightlessness for a moment. The idea that there are discoveries yet to make. Alongside the drudgery of the body, decaying day by day, until it goes. I think it might be enough.

Reform? No. I still want Revolution.

2009-09-12T19:19:00.000-07:00

So is it accepted that health care reform should not include "undocumented" people living and working in America? Why not? I can't understand any of this mess. I thought the point was not insurance reform--what a joke--but making sure that each person in this country has access to health care services. To me that means every man, woman, child. Anything less than that is just not good enough, I say. I hate to be confronted with the selfish faces of those lucky enough to have access by private insurance or a government program, but who are not crying out for universal health care. As if it is OK to just leave a huge population to fend for themselves without health care. Without a flu shot. Without a mammogram. Without a doctor or nurse who knows their names. Without pain relief or treatment for diabetes. Without any choice but to show up in the emergency room with pneumonia or a broken wrist or an ear infection. Or to die. What's that about, if not pure selfishness?

Palliative Care Grand Rounds: August 2009

2009-08-03T19:16:00.000-07:00

Welcome to the seventh issue of Palliative Care Grand Rounds, a potpourri of insightful, relevant, challenging, oft-times poignant and always well-written postings from the blogosphere. PGR appears the first Wednesday of each month. As your host for August, I admit I have given you a considerable assignment for your mid-summer reading. But there were just so many blogs I wanted to share with you! I don't know where to start! And if you enjoy what you read, don't forget to leave a comment of appreciation--and tell 'em where you heard about their post. (And please forgive my inability to to get the formatting right!)

A number of blogs this month have taken eloquent exception to the outrageously stupid characterization by certain Republican politicians that having end-of-life conversations with patients is tantamount to euthanasia. In his blog, David Fisher, a family physician, does a good job of explaining the proposal to reimburse physicians for having an "advance care planning" discussion with their patients once every 5 years. Fisher even had a run-in with Rush Limbaugh on the topic! Marya Zilberberg, a hospital intensivist, offers a frontline corrective to the Republican nonsense in her blog, What's really killing grandma at Healthcare, etc. Her typical scenario: "The family when consulted of course opts for "everything" without a clear understanding of what that "everything" entails."

Buckeye Surgeon weighs in too, with feeling, "I can't tell you how many times a month I find myself seeing a demented patient in the ICU on pressors, intubated, gorked out, sustained solely by machines and no one knows what to do, no one in the family is prepared to "make the big decision" because no one ever thought to ask the patient when she was lucent: what do you want us to do when you're deathly ill and are unable to make decisions for yourself?"

In his blog, Medical Futility, Thaddeus Pope reflects that patients want guidance from their physicians, pointing out that there is nothing wrong with end-of-life persuasion. And certainly not least, Drew Rosielle, founder of our beloved Pallimed, chimes in with this advice:"I say Be Out, Be Proud, Superb End-of-Life-Care for All - No Apologies!" I agree!

David Cox, blogging at Open Salon, and not a healthcare provider, doesn't mince words when he offers his take on how the wheels of healthcare spin along regardless of the condition of the patient. Describing his father's death, he says, "The surgeon's bill for the operation was over $35,000, and along with the hospital's bill the total was over a hundred thousand. All to keep a dying man alive for twelve more hours."

But if you're not convinced (preaching to the choir, here), Martin Welsh, another doctor, now also a patient with ALS (Lou Gehrig's disease), gives a moving narrative of what it means to think about end-of-life issues when he says, "Today, I find myself facing the kind of 'quality of life' issues I discussed innumerable times with patients." Speaking of ALS, hospice doc Bob Sawicki found himself uncharacteristically watching ESPN on July 4th, appreciating a tribute to Lou Gehrig, 70 years after he made his famous farewell speech at Yankee Stadium. His meditation that "not much has changed" is quite moving.

GeriPal (a blog combining geriatrics and palliative care) has posted two recent blogs about hospice care in the elderly. Nurse Practitioner Patrice Villars critiques the "morphine-and-lorazepam-fix-everything" mentality and reminds us that end-of-life care for the elderly requires a special set of skills and knowledge. Physician Eric Widera rants about innappropriate medications in the hospice setting. His "top 3 potentially inappropriate drugs for use in hospice patients" are: colace, statins, and multivitamins. Physician Roseanne Leipzig wholeheartedly agrees that the health care system deserves failing grades in geriatric care, in her Op Ed piece in the NY Times. Her story of "killing grandma" is the real deal.

Caregivers have a lot to teach us about palliative care. In Alzheimer's: A Caregiver's Story, Open Salon blogger, aim describes being a paid caregiver as a labor of love: "I could not have done this job without allowing myself to fully love him. Now I'm learning how to let go, painfully, one step at a time." In Words from a Witness, Kristin tells of reaching an emotional breaking point as a caregiver for her mother, watching her mother languish in a wheelchair with escalating pain. Hospice volunteer Monique, also blogging at Open Salon, reflects in Visits with Mr. 'M' on the social function of smoking at the nursing home. And, if you haven't yet discovered Gail-Rae's blog, I urge you to visit The Mom and Me Journals. It's a thoughtful, intense, creative, and well-researched gem that you will want to come back to again and again.

Here are some stories about how different people approach dying. I adored this story of the Sisters of Saint Joseph, living in a convent in Pittsford NY, who approach caring for each other at the end of life with the equanimity and faith that was undoubtedly the original impetus for hospice. As Sister Mary Lou Mitchell explains, "We approach our living and our dying in the same way, with discernment." And in Pallimed Arts and Humanities Blog, we hear the story of musician and songwriter Warren Zevon who was diagnosed with mesothelioma and refused any treatment, preferring to finish his final album in the time he had left. In her blog The Good Death, Jessica Knapp shares an email with us from a woman diagnosed with stage IV rectal cancer who, following surgery in 2005, followed a palliative care approach rather than any further cancer treatments. "Had I opted for chemo, followed by liver resection, and then hepatic artery infusion, I would have been long dead", she muses.

On to a few blogs by those angels, hospice nurses. With her usual wry humor, Deathmama tells us about a drunken tuck-in, a nurse fight (sorry, no fistacuffs), arming with pepper spray for psychotic house calls, and Michael Jackson's death, all during a week of 9 deaths. A bit less jaded, NurseTeeny, still a nursing student, explains her intention to become a pediatric palliative care nurse. Teresa Yarbrough, in Alive Hospice Blog, tells us the about the inspiration that brought her, roundabout, to hospice nursing. And hospice RN, Sarah Skiba, in her blog, A Journal of a Hospice Nurse, writes about patients who ask "why is it taking so long to die?" Neuroscience ICU RN Jerry, in his blog Death Club for Cuties (gotta love that moniker), is an ELNEC (End of Life Nursing Education Curriculum) trainer, so I am giving him honorary hospice nurse designation here. In this post, Jerry uses the metaphor of Two Paths through Pines, when talking to patients about comfort measures. With a lovely picture to boot.

Docs get plenty of kudos from me too! In Two Women Blogging, Jay tells us the blessings of a long day of conference calls and home hospice visits. Lovely writing here, as in: "I stood a moment and felt my soul start to uncrumple." Speaking of palliative care docs, don't forget to nominate your favorite! The Hospice Foundation of America Caregiving Blog announced a new award for physicians who show examplary care in advancing end-of-life-care.

Not to leave out social workers! In her blog, Confessions of a Young (looking) Social Worker, LeighSW, a hospice SW, blogs about the special sadness of working with a family about to lose a 13 year old girl and how they make funeral plans, in Small Coffins.

Here is a blog I rate for creativity and loose associations that make me ponder life and death . Shrimplate, an Emergency RN, has a unique way of rambling provocatively about everything, including end-of-life care. She warns, “Before you get so sick that you have to go to the local emergency department, you first have to build a hospital and train and hire the staff.” This, in the midst of telling a story about a makeshift urinal that got stuck.

I hope everyone that hasn't already done so will take a look at the site How We Die. It includes a collection of personal stories, blog-like enough so I thought I would include one here. Cody Curtis 52 years old and diagnosed with cholangiocarcinoma, tells us about considering hastening her death using the death with dignity law. “The outcome is clear in my case. If you’re willing to look at what’s likely to happen, it’s fairly awful. People with this kind of cancer die of massive organ failure and it’s not pretty. The hardest part about the Death with Dignity stuff is deciding when to take the drugs."

Thanks to all my palliative care pals who sent me suggestions for this month's Grand Rounds! For good reading and great commentary, follow your prior hosts of grand rounds!

Christian, Drew, Thomas, and Lyle at Pallimed

Deathmama aat Dethmama Chronicles
Jessica Knapp at The Good Death
Thaddeus Pope at Medical Futility
Angela Morrow at About.com The Palliative Care Blog

Tim Cousounis at http://palliativemedicine.blogspot.com/

PCGR now has subscription options; you can follow by email or RSS feed.

The next PCGR will be out September 2nd and will be hosted by LeighSW who blogs at Confessions of a Young (looking) Social Worker !

Don't forget to check it out!

I died as a mineral and became a plant, I died as plant and rose to animal, I died as animal and I was Man. Why should I fear? When was I less by dying? -Rumi

Palliative Care Grand Rounds

2009-07-25T19:55:00.001-07:00

OK you guys, any of you that read my blog: I'm doing Palliative Grand Rounds for August. See here for details. Send me those blogs that you think are remarkable, sharable, full of palliative care wisdom! Now! Do it now!

A Day in the Life

2009-07-25T17:28:00.000-07:00

People ask me what Outpatient Palliative Care is. What do I do? Today was a typical day.

Two of my patients are in the hospital. I'll see them first. Then I can go to the nursing home and do my home visits.

RB, 26 years old, wants to go home, has no idea--none--how sick he is how close he is to maybe not leaving the hospital alive. Septic emboli throughout his chest, heart valve about to blow, but can't be repaired, fungus growing in his brain. Yesterday I filled out the POLST form with him--Physician's Orders for Life Sustaining Treatment. We will not resuscitate him if the valve blows or he has a devastating stroke--either is possible. We will let him die, because if those things happen, resuscitation will not bring him back in any meaningful way. I don't even want to think about him dying now, so I haven't really had that conversation with him. That conversation is about much more than code status, you see. Besides, he doesn't look that sick and he is going stir crazy in that bed. He wants to tell his physicians what drugs to give him--pain meds, benzos, sleep aids. In turn, they are asking me what to do. Because I know him from clinic, because these are drugs that I prescribe for him. On the outside. We are all afraid he might walk out of the hospital AMA--against medical advice, despite the reality that he can barely walk after 2 weeks in the hospital. The resident asks me if we could send him home on hospice, but, like I said, I'm not there yet. I am rooting for him. Maybe it would be ok to sedate him a bit, at least he would stay here.

LK, 62 year old schizophrenic woman living in an adult family home found out she had laryngeal cancer and freaked out, landing in an involuntary admission to the psych ward. I know her from clinic too, where I manage chronic pain from peripheral neuropathy. She is having angry outbursts, unable to contain her emotions, making threats, feels that everyone wants to kill her, but also is having trouble breathing and sleeping. She did agree to some chemotherapy, but it's not going to buy her much time. Besides, they had to give her steroids prior to chemo, and steroids make sane people act crazy. My job- to talk to her about end of life issues. I think she trusts me, but this week is not the right time for this conversation. Best to work on her anxiety and insomnia first. Unfortunately, she doesn't have much time.

PJ with end-stage lung disease calls to tell me she has green sputum again. I go to the nursing home to visit, prescribe antibiotics and cough syrup, order sputum cultures, sit with her a while. "Am I going to have to go into the hospital?" she asks me. I answer, "I don't think so. I think you'll do just fine on the antibiotics." We've been arounsthis block many times over the past 8 months. Once when I didn't think there was a new problem to treat, I told her not to worry, I said, "You're not sick." She paged me later in the day, panicky. "If I'm not sick, are they going to kick me out of the nursing home?" She can walk about 12 feet without almost collapsing from breathlessness. In this job, I learn over and over, you have to be careful what you say.

Another nursing home patient, LF. She is a 70 year old Croatian woman who speaks some English but is hard to understand because of esophageal cancer. Today, I sat very close and listened very carefully. She had a lot to say. A long sad story. I feel most useful when I just listen.

Next, a home visit. KD, an 85 year old feisty woman with end stage heart disease. Living alone, daughter lives nearby. Has been doing ok, but has gotten weaker, now out of breath on her oxygen with conversation. Isn't eating or bathing. And her oxygenation is bad enough to be causing some confusion. Refused hospice last month, but today is agreeable to having a nurse visit twice a week. At first, in her usual way, she is cheerful and upbeat, but then turns solemn. "Aren't you supposed to be able to give me something, some pills, so I can die now instead of dragging this out?"I can't because I am not a physician, but living in Washington State, where this is her legal right, I have to take this request seriously. Later today I will notify the medical director at the hospital and call Compassion and Choices, who will send someone out to explain the process to her. I’ll call her old primary care doctor and ask if he is willing to help her, but when I reach him, he says no. When I explained to her daughter that someone would be calling her to schedule a visit, she was very anxious. "Do I have to be there?" Meaning, when she dies. No, she won't, volunteers are available to sit with patient's who decide to hasten death in this way. But I reassure her, "I don't think she is going to live long enough to go through with it." But I'm not sure how reassuring that is.

Last home visit. RB, 60 year old man with end stage liver disease from hepatocellular carcinoma, which comes from chronic infection with Hepatitis C, which comes from shooting drugs and is made worse by heavy drinking. He is really pissed at me, my last note mentioned that he is still drinking (he is still drinking) and his doctor and the social worker more or less ganged up on him in clinic last week. "Damn, I thought that was between me and you. I need someone I can just talk to. I'm going to die anyway. I thought you understood." There were beer cans everywhere, but he was so right, it was a violation of trust, although I didn't realize that when I wrote my note. I guess I just didn't believe anyone would give this guy a hard time about it. Dumb of me. He accepted my apology. I think we're ok. Did he fill out the health care proxy form I left with him? "I lost it,” he said, "give me another one and I'll fill it out". I think he wants me to visit again next week.

Still missing you

2009-07-12T09:00:00.000-07:00

For Jon Marshall Greenberg, God is gracious.
February 22, 1956 - July 12, 1993

Journal entry, undated, in the year of his death, 1993
I have been learning, since I first opened that door, to handle spiritual reality for increasingly longer periods of time. It’s wild in there. I can now handle it for almost three seconds.

Jon taught me everything I live and know about death and dying. He taught me many other things, but for this lesson, I am daily thankful. I am relieved, even grateful, to find no cure for life, to come to know life as death’s bas-relief. You may balk at this statement, but sooner or later you will confront its veracity. You may rage at human transience; I would gently suggest that you confront your simple mortality. Your wellbeing, your growth, your soul, your comfort, your legacy, your journey towards death depend upon this dictim. This is needed, even essential--at least in the complex world we inhabit, at least as much as women need midwives and doulas to transition into motherhood. I hold these views because of my friend Jon, who deserves credit for so much in my mature life. Jon didn’t want a cure, asked us to burn his body in the street and eat his flesh, dutifully confronted us with out own forthcoming mortality. Every day, I wish to remind myself of how often I fell short of being the kind of friend he needed. Although I didn't know it at the time, I had magic-wand ambitions, hadn't yet learned the value of presence and silence. The gift of time. The measure of comfort and being-with. I hadn't lost the need to fix things in my own image, didn't receive these gifts, embody these skills (if I even have) until after he left.

But I did carry on. And I do resist a cure for what ails me, what I am dying of, what I am made of. I resist the very notion of cure as it is presented in so-called western medicine. I prefer to sit with people who long for cures, but must settle for life-as-it-is, helping, if I can, transform horror, by improvisation, into a soothing lotion rubbed onto the naked body, sealing in the private journey and cherishing what is out of reach, a final untouched meal.

Some of my poems about Jon can be read here.

Another Great Grand Rounds!

2009-07-03T18:39:00.000-07:00

Tim Cousounis at Palliative Care Success has posted the July edition of Palliative Care Grand Rounds. Go check it out! And please send me your most interesting palliative care blogs for the August edition!

Scribbles from 2 days at the trauma conference

2009-06-06T14:58:00.000-07:00

DAY 1

Preventing falls? C-PAP or tai chi?
Probably not.

Ice cave collapse
Finding myself in the crevices/between places
Where I do not belong

Radio this morning: Air France jet disappears on route.

Shaken-baby syndrome
Blast injuries
Death—it’s just the tip of the iceberg
Acute stress disorder
Emotional recovery
Exposure therapy
Maslow's hierarchy
Desensitization
Thought stopping
Cognitive restructuring
Safety in the world
All things undone

Feeling hits me
Life is a trigger
Reminds me of my essential loneliness
Inability to connect/to be with/to belong
To become
Reminds me of death
Reminds me of the essential misunderstandings that encase a life/mine

Things unsaid/said wrongly
The problem of re-reading
The problem of hope
The problem of expectations and false maneuvers
Hidden motivations

It’s all memory anyway
Nothing really happens. Or is that.
Dissociation. Speaking.

Hemipelvectomy.

Where do I belong, hanging
Between life and death, favoring
Death, always favoring death because
Death always prevails. Always.
And time is such a useless concept in the face
Of death. How could it matter, if I am going to die
Anyway. There is the odd concept of waste. Waste of time.
Wasted food. Wasted resources. Waste of energy.
But if energy-matter can neither be created
Or destroyed (and how could that be so?)

Then what is waste?
Wasteful/useless
The same? Or different?

Top 10 Trauma Center topics
*hemostatic dressings
*trauma systems designs
*goal-directed resuscitation
*human genome response to injury (why am I not surprised by this?)
*factor VIIA
*artificial fascia
*endovascular surgery
And a couple more I don’t remember

Learnings? Not sure what I learned today.

DAY 2

Can’t explain these sudden dives and tumbles, feeling bad about self
Comes and goes
Best to learn to “live” with it.
Life is short.

Fresh whole blood in Tikrit
Routine, every day volunteers
Sitting in the mess tent with nothing else to do
Injury severity score

But how do they get used to war?
Even as medical providers?
Is it no different than getting used to:
Death in the hospital?
Abortion?
Assisted death?
Trauma care in general?
Palliative care? Ah, palliative care!

Mixtures of fluids is tricky, surprising, potentially fatal.
(so you see, the trick is understanding data on your own terms)
Hypotension is bad for the injured brain.
But who pays the oxygen debt?

98,000 deaths a year from medical errors
Now, everyone is scribbling

Now on to child abuse
(as about 1/3 of the audience gets up and leaves the auditorium)
“The enemy of good is better” James C. Carrico, MD
Why don't they listen to this guy?

Right and left do make a difference
The racemic mix just didn't work as well.
But no one noticed.

Life imitates science.
Watching the young woman on the aisle
Tuck her bare feet under her bottom, comfy.

Antioxidants improve resuscitation outcomes
The age of the blood affects outcomes.
You don’t want old blood.
Gene-banger. What’s that?
This is a young man’s game, methinks.
If the gut works, use it.

Neuropraxia
Transient quadriplegia
Plexopathy
Nerve root injury
Funiculi
Foraminotomy
Transfusion-related acute lung injury
Platelets must be stored at room temperature, higher risk of transmission
No longer using plasma from females
Older blood-more likely to die—third speaker who says this!
Cryoprecipitate
Second impact syndrome

Lunchtime. I hate small talk, choose to take a walk rather than sit at a table with strangers eating hotel food. Am I an arrogant shit? Probably. But, trauma conference—focus is on war and sports injuries—why am I here? Would rather write a blog than talk. Arrogant shit? No doubt.

Trauma surgeons with their PP slides of bloody flesh, distorted faces, missing limbs--these bring pain into vision. But few outside this club can look. I suppose that I can sit with strangers after all, these comrades who can look at carnage, and then eat lunch.

Preventing ventilator-related pneumonia.
The ventilator bundle.
They look much better, after we place the trach.
Really cute speaker, little crush here!

Thinking about when I wanted to die for every misstep, every miscalculation, every misunderstanding. Now I don’t think about wanting to die,
because I know that I will soon enough. No matter what.

So that’s why I do this work? So I won’t think about suicide as an option?

2009-06-03T16:37:00.000-07:00

The June edition of Palliative Care Grand Rounds is now up here, at Angela Morrow's About.com Guide to Palliative Care. Once a month, someone hosts this interesting group of recent blogs about death, dying, hospice and palliative care. Go and check it out!

Palliative Care Grand Rounds is hosted on the first Wednesday of every month and rotated through various palliative care blogs. For issues 1-4 of Palliative Care Grand Rounds (PGR), visit the the PGR homepage.

Keep an eye out. I'll be hosting PGR one of these months!

Another doctor murdered

2009-05-31T21:34:00.000-07:00

I didn't know George Tiller, but I did know John Bayard Britton and David Gunn. The connection? All three were physicians. All three provided abortion services. And all three were murdered--that is, shot to death at point blank range--by so called "pro-life" killers.

George Tiller MD was shot this morning by another antiabortion murderer in his church in Wichita, Kansas, where he served as an usher. I was in New York City on the July morning in 1994 when Paul Hill shot my friend and colleague, Bayard, along with his bodyguard, to death in front of an abortion clinic in Pensacola, Florida. He was wearing a bullet-proof vest, he knew the risks. He would have rather retired, after a career in family practice, but he was one of fewer than a handful of physicians in Florida who was willing to perform abortions at the time, and he felt it was the right thing to do.

Back in the early days of legal abortion, Bayard gave me a gun, "for protection". Not so odd, it was Florida after all. And we were under siege, getting picketed every week, bomb threats called into the clinic, personal threats to the staff and our family members. These folks called themselves the "Army of God." Meglomaniacal Murderers would be a better fit.

I still have the gun, a lady's .22 revolver, a lightweight. It reminds me of Bayard after all these years. Probably couldn't kill someone with it if I tried. If I wanted to. Which I don't.

I'm just saying.

He died. This morning. About 2am.

2009-05-25T09:31:00.000-07:00

Pager bleats its rising and lowering notes (de-da-do-da-de). Familiar as my name, but as I am wading from sleep to wake, I seem to think that a fire truck, siren blaring, is racing down my street. Fire? Should I wake up? I snap back to me, awake, trying to make out the number back-lit on the tiny screen in the dark bedroom. It's the nursing home, telling me he has died. It's 2:15 am.

I ask for the story, how were his last hours, minutes? Was he in pain? Was anyone with him? When someone dies overnight, the staff never seem to get what I'm asking. I always end up making someone feel defensive. Or maybe that's just projection. I certainly feel sad, bad, horrible that I wasn't there. I know. I know. I did what I could. In this case, it just didn't feel like enough. Or I just got too attached this time. This time. This one. Yes.

I call his daughter. "No, no! I really wanted to be there. I was so exhausted, I came home to sleep for a few hours. I feel horrible that I left." So we both feel horrible, console one another. She certainly rose to the occasion, did everything she could to help him, while no one else in the family even visited.

The hardness was that he didn't want to die, wasn't ready, much too young, much too much undone, had just started over, this thing caught him in the neck and strangled him without so much as a warning punch. And the pain. Was terrible. Even on the highest doses of opioids I have ever prescribed. Pain mixed with fear, anger, angst. I think I loved him for these few weeks, a helpless sort of love because I couldn't make it better. I thought.

Daughter said to me: "He liked you. Really liked you. That's a big complement, you know. He sees right through shit, and you were real to him."

Thank you. Thank you for reminding me that it's ok to get attached. To feel a death so strongly that it takes your breath away. Secretly hoping it will happen soon, never happen.

So much, so hard to describe. So hard. Over now.

I never got back to sleep.

Collecting Pain

2009-04-13T08:14:00.000-07:00

All of us. Each of us.
With our distinct faces,
Our unique thumbprints,
Our own affliction.

For a long time
I have collected pain
And now I don't know
What to make of it.

Isn't this enough? To
Enter this world through
Our own mother's body?
But we are lost.

Grief waits in the alley
For the ambush.

What she said

2009-04-02T20:48:00.000-07:00

I've been visiting her for several months, mostly working on her chronic pain. Sometimes, before a visit, I think about how hard it is to sit with her. She is really depressed. And really in pain. Some of it is existential, but most of it is physical pain from underlying physical pathology. Our work together has gone like this--little gains, then big setbacks. Trodding along trying to help. Showing up, but wondering if it mattered, since her pain is as bad as it was when I met her. Now she has been skipping dialysis, ending up in the emergency room with potassium levels high enough to stop her heart. Her nephrologist doesn't understand why she keeps skipping appointments. He is worried about her. A whole slew of people are concerned. As they should be.

So I asked her, what happens? And she told me. I just can't stand the sessions. It starts out ok, but then I get sick. And wiped out. And the worst thing is the pain in my legs is about 100 times worse after dialysis. Every time.

I told her that pain during dialysis was not so uncommon. There are many reasons for this, in her case I thought maybe the opioid she was taking was "washed out" by dialysis, and sort of threw her into a pain crisis after dialysis.

And this is what she told me:

After so long, I almost can't believe that there is a reason for it. But just this week, one of the nurses at dialysis told me that other patients miss dialysis appointments for all kinds of reasons, but often it's because of pain. I'm not the only one. I can't believe no one told me this before. It's important to feel that you're not alone with these problems. I feel a little bit like some freak, somehow, a noncompliant, aberrant misfit. Even if I were 100%, going to dialysis isn't easy. I've been doing this for 9 years. Being in constant pain makes it so much harder to go to dialysis. It helps to know that there are others having similar problems. It helps that someone wants to help with the pain. It helps keep me from falling into that shell where I just feel so alone with this. It helps allay some of the anxiety and depression that goes along with the pain and lowers my resistance to the pain.

What could I say after that? But I managed to say this much: I don't know if I can help to lessen the pain. I don't have that many more tricks up my sleeve that are safe for you to try. But I haven't given up. I won't give up. And I won't abandon you.

Sometimes we lose sight of how much acknowleging pain and sitting with a person in pain is worth. And really, anyone can do these things. Me. Or you. For example.

Killing me softly

2009-03-22T10:25:00.000-07:00

I was talking with my colleagues the other day about the new Washington State Initiative (dubbed I-1000 on this past November’s ballot)—the Washington Death with Dignity Act, usually referred to as physician-assisted suicide. The act went into effect on March 4th and for medical providers, it’s not just a personal consideration or a philosophical discussion. Everyone on the palliative care service has already been involved in patient-initiated discussions about it. I am a nurse practitioner and the act as written only allows physicians to prescribe lethal doses of medication to terminally ill patients who then must act on their own to decide if and when to take the medication and die a bit earlier than they might otherwise. I wish that the act included nurse practitioners, as I don’t believe that there are enough physicians in this State who are prepared to act in concert with this law. If I were allowed, I believe that I would be able to.

The act was passed by 60% of Washington State voters. Still, it allows for physicians, other health care providers, as well as institutions (hospitals, nursing homes, etc) to Opt Out. No one is forced to participate, either for personal, religious, political, or practical reasons; the act cannot force a single physician in the state to do the people’s bidding. If a hospital opts in, it does not guarantee than any of its staff will respond to requests by actually writing prescriptions. If a hospital opts out, it thereby forbids its physicians to provide life-ending medications when acting as an employee or staff and can terminate the staff privileges of doctors who do so.

I have a problem with this, as it will tend to isolate and make it all the more difficult for those who do want to act on behalf of patients who make the request. In Oregon, the only state in the US that has allowed physicians to prescribe lethal doses of barbiturates to terminally ill patients, only a handful of physicians have actually prescribed medications for this purpose. This is not to say that other health care providers abandoned patients, did not listen and empathize, or did not try their best to alleviate suffering. But at the end, most sent the patient to someone else to get what she came to them asking for. And the medical profession, including hospice and palliative care organizations, are playing it safe on this one. I’ve heard the arguments:

--We can always relieve pain and suffering, no one should have to resort to this act.

--The act potentially will exploit the most vulnerable among us.

--Most people who want to commit suicide are depressed and if treated for depression, would not choose to die.

I feel that these arguments are arrogant, even if well intentioned. Those of us working with chronically and terminally ill people at the last months of their lives know that we are not always able to make life bearable for those suffering. The Oregon experience has shown us that those asking for life-ending medications are well educated and resourceful people. The most common attribute among them is willfulness and the need for control in an unbearable situation.

Although the scope differs, the situation is otherwise similar for women seeking abortions. I worked in a women’s health center in Tallahassee Florida during the decade after abortion was legalized in by the Supreme Court in January 1973. My center eventually had to sue doctors in the local community who refused to provide abortions, but were harassing our doctors who traveled in from other communities. Tragically, a friend and colleague, Bayard Britton (John Bayard Britton MD) was murdered along with his bodyguard by the antiabortion activist Paul Hill in Pensacola, Florida in 1994. Bayard was wearing a bullet-proof vest, he knew the risk he was taking, but he also knew that some doctors had to provide abortions if the law was to have any meaning to women. I also knew Dr. David Gunn, who was also murdered in Pensacola prior to Bayard’s murder. There were so few doctors at that time in the entire state that were willing to perform abortions, they were not hard to pick off.

My team is struggling with the issue. I don’t know if it is right or wrong to hasten death in this way and I don’t know if I will ever know. I have the sense that there is no way to make a moral issue out of how to best alleviate human suffering. I suppose it is because I will never truly understand human suffering that I am drawn to try to alleviate it. If you wish to use the concept of God and the idea of a reckoning after death, then I guess we will have to wait to know if living according to our best understanding of what is good, was good enough. We might find out that it is as wrong to kill and eat animals as it is to torture prisoners. At their best, ideas about life remain relative to our ability to understand them. As for me, I don’t believe in a God who wishes for us to suffer and judges us for doing what we can to help others.

Death and Dying: A literary reading list in 5 parts

2009-03-01T20:57:00.000-08:00

Part 1: Suicides

There is but one truly serious philosophical problem, and that is suicide. Judging whether life is or is not worth living amounts to answering the fundamental question of philosophy. ~Albert Camus

Each victim of suicide gives his act a personal stamp which expresses his temperament, the special conditions in which he is involved, and which, consequently, cannot be explained by the social and general causes of the phenomenon. ~Emile Durkheim

Write something, even if it is just a suicide note. ~Gore Vidal

Snow, Orhan Pamuk(2002, translated 2004)
The idea that suicide might spread contagiously like the plague had first been suggested after a girl traveled all the way from Batman to Kars just kill herself. … Ka thought it strangely depressing that the suicide girls had had to struggle to find a private moment to kill themselves.

Returning to Earth, Jim Harrison (2007)
Here I am on the sofa at age forty-five and I have Lou Gehrig’s disease. …
We’re going to the place Donald wishes to die. When he dies we’ll bury him. That’s all. Of course it’s illegal but fuck everyone.

The Bell Jar, Sylvia Plath (1971)
Wrapping my black coat round me like my own sweet shadow, I unscrewed the bottle of pills and started taking them swiftly, between gulps of water, one by one by one.

Veronika Decides to Die, Paulo Coelho (1999)
In a world where everyone struggles to survive whatever the cost, how could one judge those people who decide to die? No one can judge. Each person knows the extent of their own suffering or the total absence of meaning in their lives. Veronika wanted to explain that, but instead she choked on the tube in her mouth.

After Ikkyu and Other Poems, Jim Harrison (1996)
If you had hung yourself in Argentina, you would have twisted counterclockwise.
We can’t ask if it was worth it, can we?

Prisoner’s Dilemma, Richard Powers (1988)
The photo makes it obvious. Dad wants to go down. … He simply wants the sharp, stabbing pain and will sooner die of it than mask it with analgesics. He demands to feel the genuine and valuable signal of something gone wrong that needs correcting. He wants death by loneliness to add to his vita. It is not too auspicious a biography, as biographies go. But with the right death, it could become the corrective biography for his time, an era when the unexperienced life has at last gotten the uncontested upper hand.

Unfinished Business

2009-02-24T19:28:00.000-08:00

Today when I visited, I sat by her bed again, quietly, with my hand resting lightly on her thigh, hoping she would awaken, but unwilling to wake her. She looked peaceful, almost secretly cheery. I looked around the snug, comfy bedroom for clues about her last week. Her glasses and a Snickers bar with a bite missing at the bedside table. On the wall was a page torn from a coloring book, a princess with tiara, colored flawlessly. Underneath, she had written, “I am so happy”. This was not there last week.

She was having trouble dying. The cancer that was torturing her body had left her swollen and lethargic. But then, she would have these incredible bursts of lucidity. Her blue eyes flashed and she told me about the sad, difficult times, and then--as if slaloming along the zigzag course of her life--about the happy times. Always she spoke of her son. Who hadn’t called.

She slept most of the time, she wasn’t eating, barely drinking, hardly peeing at all. Three weeks ago I wrote “actively dying” in my note, two weeks ago, “dying at her own pace” and last week, “seems to be having trouble dying.” She was staying with a friend, with hospice coming in to help care for her. She was comfortable physically, but there were times when in her sleep she called out for him. Sadly, she had no idea where he was, no clue, no contact information. He had stopped calling more than 5 years ago, right after college, when she was drinking heavily and he was tired of it all. He couldn't possibly know that she was here with a friend, because she had moved from Kentucky only 6 months ago, when she already knew she was dying.

--So it was nothing short of a miracle that hospice had found him. That he had called over the weekend. That they had spoken of love and regret, of forgiveness and hope. Nothing short of a miracle. She can die happy now. She can die now.

My Living Will

2009-02-22T12:26:00.000-08:00

My purpose in writing this living will is to provide guidance as to my desires in the event of my illness or disability such that I become unable to manage my affairs or make known my desires and wishes for myself. To the extent possible, I assign durable power of attorney to make medical decisions on my behalf to my son, Misha. Misha has indicated that he will faithfully follow my preferences regarding my advanced directives, which are that no medical interventions be performed to prolong my life in the event of end-stage chronic illness or a cardiovascular event, serious accident, or other life- threatening situation. To this list, I would add that in no circumstances would I wish any artificial means of prolonging my life in the event of a brain injury, traumatic or otherwise. I would not want any procedure, medical intervention, or artificial form of feeding or hydration to prolong my life. I would not want dialysis for chronic kidney failure or for acute kidney failure in the setting of other life-threatening illness or injury. I would not want blood products, antibiotics or medications that are not needed for my comfort. I request appropriate comfort measures without regard to the possibility that such measure may hasten my death. If it is possible, I would much prefer to die in my own home with hospice care. However, I do not wish for my end of life care to cause undue distress for my family; therefore, if it is not practical for me to die at my home, I would like hospice care in whatever setting that I am being cared for. In addition, I accept that it is reasonable to prolong my life temporarily for a very brief period of time if doing so would allow those who love me to have a sense of closure regarding my life.

In the event that my son is not available to speak for me, I ask that the spirit of my living will be honored by any physicians or other medical providers involved in my care.

Branching Uncertainty

2009-02-18T19:43:00.000-08:00

One morning many years ago while lying in bed, I felt a lump in my breast. It had not been there before, and it did not feel normal to me. I decided that it was cancer. After all, my aunt had died of breast cancer when she was only 35, and my mother had gone through a lumpectomy and radiation for breast cancer only seven years before. It was my lot to have cancer myself with this history. For a brief moment, I felt uncanny relief. For how many years had I fretted over this? Uncertainty was a weight that never strayed far enough away. In that moment, knowledge was sufficient to lift the burden.

But just as quickly, questions formed. Certainly I would never permit chemotherapy, or would I? How could I find a decent breast surgeon in the god-forsaken town I lived in? Could I continue to work? If I had to quit working, how would I support myself? Would I die of this?

Within three weeks, I was forced to reassess. Witlessly callous, a doctor declared that it was "nothing" but sent me for a mammogram. But it wasn't nothing, it was what it was, a fork in the road, an opportunity to ask myself difficult questions, to answer without the benefit of facts and prognoses. Although I didn't respond with such equanimity at the time, I have learned to indulge in the "what ifs" of life more and more as I get older. It is this rich imaginative internal conversation that I find so revealing. I learn things that I didn't know about myself. Before certainty, I know that as things progress—for better or worse—I will not have access to the naïve wonder of what all of this really means to me. I do not know what might be in store for me. For me, that is an awesome time for looking inward.

Fortunately, the mammogram also was "negative". I decided that there was no cancer. Relief, like a flood, washed me clean of worry. But this was a brief spell of relief also. Could there be a mistake? Would next year be too late to treat what I thought I had found this year? If I was simply wrong, what did that mean? I had decided that I had breast cancer, if only for three weeks. Was that long enough to let my guard down, and allow a cancer to begin? Or would my vulnerability to the suggestion of cancer simply stay with me until, in my own incompetence and neurosis, some doctor would, in fact, misdiagnose cancer and subject me to unnecessary treatment?

The crux of the dilemma was with my inability to handle uncertainty. But I have come to appreciate that there is no certainty, or no "certain" truth. I decided that I had cancer, I later decided that I did not have cancer. I made a number of other decisions based on each of these potentially false decisions. Each question raised at least one additional question. But more ominous, each answer to a question seemed to generate a branching network of new questions.

Upcoming, Part 2: Another View of my Left Breast

Hours-to-days

2009-02-13T18:37:00.000-08:00

She enters the house on wings
aiming to land discreetly
among the flocks of mothers
lovers, neighbors, sons.

She carries buckets, dressings, diapers.
Ready to lay bare with a soft approach.
Gathering offerings, blending with soap,
sips of water, quiet touch.

They need knowledge of a kind
not previously imagined. They want
to know when. And how to wait. What to say.
Things the doctor forgot to explain.

She tells them what she sees: weeks-to-months,
days-to-weeks, hours-to-days.
Once, she said: Now, right now.
And sent a gangly grandson

To fetch the preacher, as she stood
by the bed holding the hand of
this 62-year old man with fuzzy hair
and heartbreak eyes, wishing that his

Daughter would glide into the room
instead of calling everyone to Come quick!
She finally had to say, He’s gone.
The child burst open then.

Although he wasn’t really gone.
His something was still in that room.
She could feel it hover and lift. Yes, lift
right out of his body. A warmth, a presence.

Still wanting voice.

Don't make it easy, please.

2009-02-11T20:11:00.000-08:00

She was 36, by far the youngest in the assisted living facility. She was everybody's "pet" driving her motor chair in a zig-zag path down the corridor, stopping to personally greet each old woman or man along the way. I met with her and her husband. She laughed brashly, smiled charmingly, and showed a vital interest in, well, everything. After he left, she told me, He has a girlfriend. That's ok, she said. I have a boyfriend here too. She was kidding. She had a wry sense of humor.

She had the bad luck of a rapidly progressive case of multiple sclerosis. She had moved into the assisted living facility about 12 months before, at a time when the decision to pay for the level of care she needed was more affordable than bringing full time care into the home. And so, this couple lived separately, consuming more than 50% of his salary for her care. I had been asked to visit her because, in addition to the MS, she had a cardiomyopathy--a weakness of her heart muscle--that had required placement of a pacemaker about 10 years prior. At her last pacemaker checkup, she was told that she would need to have it replaced in the next few months--the battery was nearing its end of life. And if I don't replace it? she had asked.

By the time I met with her, her mind was set, this was not a "counseling" session, she told me firmly, she did not need to discuss the decision itself. Her mind was made up. Her husband too felt that her decision was solid, well considered, and one that we would have to respect. It was not what he wanted, but he accepted that what she wanted mattered most. She had spoken to her cardiologist. She had talked to her primary care doctor. They were reluctantly in agreement that she had the right to make this decision, although they had each tried, in their own way to talk her out of it. She told me that she had given this plenty of thought. She said that this was not depression speaking, it was very much what she thought was the best path for her. In fact, no one thought she was depressed. There was nothing really complex to discuss.

She did have questions. What will happen? How long will it take? Could we keep her comfortable? Could she die here, where she now called home? What did she need to do to make sure that no one could override her decision?

She made the visit easy for me in that sense. I got her a bracelet with DNR/DNI engraved on it. She signed a living will, which we had witnessed and notarized. She and I both signed a Physician's Orders for Life Sustaining Treatment (POLST) form clearly indicating her wishes. No CPR. No intubation. No tubes. I reviewed her advance directive and "do not hospitalize" order with the director of the facility and discussed how we could arrange end-of-life care there. I made copies of all of the forms and sent them to all of her doctors, placed a set in her facility record. She held the originals. I agreed to visit periodically and to order hospice care as soon as there was any sign of the pacemaker failing. For now, she would continue to live her life as fully as possible, given her disability. She expressed intense relief when these tasks were completed. I have more important things to do, she said.

She made the visit easy for me. In that sense. And she broke my heart.

What do we mean when we talk about autonomy?

2009-02-08T16:35:00.000-08:00

She was admitted to the hospital just before Christmas after swallowing a lethal dose of Tylenol, but she survived with medical intervention. Her reason? She was tired of being chronically sick, worried about her impaired mobility, afraid that she would have to leave her home. She felt that this was her best option for having some control over her last months. After she was stable, she was placed involuntarily on a psych hold, awaiting a court date to see if she could--as we say--be released safely back into the community. In the hospital for more than 4 weeks, she had a number of typical complications, including a foul case of antibiotic-induced diarrhea. She was pretty miserable, but sharp as a tack. She had had an interesting life, but most of her friends were dead, and she was not in touch with any family. She had paid her rent through the end of March, her hedge-bet in favor of going back home. Her medical problems qualified her for hospice care, but she was afraid to even talk about hospice, as she felt "they might hold it against me". She felt ashamed and inhibited, eager to talk about her life, but hesitant to express her present state of distress. She was released to a nursing home on January 19th , court date still looming over her.

A social worker visited her at the facility, felt that she was depressed and recommended ongoing counseling. He based this assessment in part on a self-administered survey in which she circled yes to "feeling lonely, sad, blue, or depressed"; "anxious or worried"; and "having thoughts of dying or committing suicide." She also assented to the following: "feeling like something bad is going to happen". This was on January 22. She died of chronic heart and lung disease on January 24th in the nursing home. Thankfully, her advance directive was honored.

On February 2, this note was placed in the medical record: "Request that the restrictive order be dismissed. Patient has expired."

three-cat night

2009-02-05T19:53:00.000-08:00

The house was dark and cluttered, close to what I would have to call dirty, smelled of cigarettes and fried fish. Her partner told me she hadn't really woken up all day, but I was welcome to try to waken her. He pointed. After drifting through the kitchen and into a closet, I asked him for some directions. That's how dark it was. He walked me through three rooms to the very back of the house and flicked on a shaded lamp that might have had a 10 watt bulb in it. She was in her own bed, in her own bedroom, which was completely dark, heavy curtains drawn, thick flannel pajamas on her bony flesh. It was a cocoon, a cave, an inner sanctum. It was warm and she was warm and, surprise! There were three cats curled up in the bed with her. A soft comforter, a soft bed, a quietness that was so seductive I wanted to crawl into bed with her. She didn't say much. I didn't say much. I didn't listen to her lungs or look into her mouth or palpate her belly. I just sat on the edge of the bed and felt her warmth. She looked at me, started a sentence or two, neither went anywhere, and closed her eyes. This was a deep and wonderful sleep.

I remembered how much my mom resented the hospital bed with its flimsy plastic mattress and hard cold metal railings. It was so hard to keep her clean and dry that I had one delivered, but she hated it, hated it, hated it. I still wish I hadn't let it cross the threshold. Even though she never slept in it, it must have made her feel like she was in the hospital, when really, she was home. People often say, I want to die at home in my own bed.

I called hospice. Please cancel the hospital bed, I said.

Her Pain

2009-02-04T08:31:00.000-08:00

We talked about her pain. An old pain from a ulnar fracture when she was ten. The new pain in her belly from pancreatic cancer. Pains in-between. Small heaps of pain, if she separated them into categories: physical, emotional, existential. But they couldn't really be separated. Blinding migraines, suddenly returned. Her first born, a crib death. Knowing she would die before her oldest child completes high school. Regrets about not taking care of her father when he was dying. An old shoulder injury. Estrangement. Anger. Fear. Putting these pains together, they became a mountain of pain, and she cried. Frankly, I did too. We cried. Shared some silence. Then I asked if she wanted me to increase her pain medications. Yes, without hesitation, yes. I wondered, Why do you always tell the nurses you are not having pain, when they ask? She said, it makes me feel like a loser to admit it. It seemed like a funny answer. We laughed.

Drifter

2009-02-02T16:02:00.000-08:00

He was a drifter sort of guy. He mentions fishing boats and lumber yards, an estranged wife and grandchildren that he adores, but never gets to see. He is thought to be a problem because he comes to emergency rooms all around town complaining of pain. He skips appointments with his regular doctors, although he can't name who they are, and comes to the ER needing belly taps. He has chronic end stage liver disease. Yep, from drinking a lot for a long time. From shooting heroin and getting hepatitis.

I met him as a patient in the hospital. A sweet guy, I thought. A drug addict, yes, but sweet, grateful when I sit and talk with him, wanting to follow a plan, willing. But he had no place to live, could not make it to clinic, forgot appointment dates. So he kept going into ER's asking for pain meds and belly taps. Got a reputation. Frequent flier, the term for it. Narcotic-seeker. I told him to come see me in clinic, I would be happy to give him the narcotics he obviously needed. He came. He also showed up in the ER the next day asking for pain meds. He was having trouble breathing.

I convinced him to go on hospice. He agreed. For a while the hospice nurse met him in the lobby of his friends apartment, where he stayed sometimes. One day, she brought him to the inpatient hospice unit, from there we arranged for a nursing home. One where I know the staff cares about their patients. The hospice nurse and social worker, myself, the nursing home staff became a consistent presence for him, getting to know him. Hospice brought him clothes, his had gotten lost along the way. He ate a lot of popsickles. Sometimes he wanted to talk and we listened. He didn't ask for much.

But he really wanted to smoke. So we found another nursing home that would let him smoke and moved him in there. Still the same hospice team, still me. He never got a chance to have a smoke, though. He died two days after we moved him there. He never would tell us how to contact his family. He didn't see his grandchildren again. He had no possessions really.

This guy thanked us, whatever we did for him. He told each of us, that cared for him during those last weeks: "I've never been treated so well in my life ." We each felt the same pang, hearing that.

Why does a guy have to die to get treated well? That's what I want to know.

Wild Geese

2009-01-16T08:45:00.000-08:00

I find it upsetting that geese are being labeled combatants in the plane crash in NYC yesterday. Even NPR was calling it a "double bird strike". Did the birds attack the plane? I hardly think so. Did they even "run into" the plane? More likely, the plane ran into them. It just seems that we have become so terribly war-habituated that we use such cavalier military language about geese. It saddens me. I was, however, heartened to hear that Sea-Tac Airport, here in Seattle, has a full time biologist whose job is to keep both the wildlife and the people life safe.

Wild Geese

Mary Oliver

You do not have to be good.

You do not have to walk on your knees for a hundred miles through the desert,

repenting. You only have to let the soft animal of your body

love what it loves.

Tell me about despair, yours, and I will tell you mine.

Meanwhile the world goes on.

Meanwhile the sun and the clear pebbles of the rain are moving across the landscapes,

over the prairies and the deep trees,

the mountains and the rivers.

Meanwhile the wild geese, high in the clean blue air,

are heading home again.

Whoever you are, no matter how lonely,

the world offers itself to your imagination,

calls to you like the wild geese, harsh and exciting--

over and over announcing your place

in the family of things.

imagining death

2009-01-14T08:26:00.000-08:00

If we could explain life, we could explain death. Mostly we take life for granted and deny death. But in rare exquisite moments when we see life for the miracle it truly is, it becomes possible to imagine death. And when we can imagine death, it becomes a gift, like life itself.

How did this happen?

2009-01-10T08:10:00.000-08:00

This week I met with the family of a man in his late sixties who had had undergone emergency surgery for a bowel obstruction and then had a cardiac arrest after surgery and now was in a vent-weaning facility. Second wife, three adult children, one adult grandchild. The patient was lying in bed attached to the ventilator by his tracheostomy, otherwise appearing serene and unbothered. Completely unresponsive, and no wonder, he was receiving a considerable load of sedating medications. When the sedation level was lowered, to test his potential to breathe on his own, I am told that his appearance changed totally, breathing rate increasing into the 50's, anxiety and panic transforming his expression. Still his physician remained hopeful that he was making some progress towards weaning from the vent.

The family was lovely and in agreement about wanting what was best for this man. They had no doubts that he was receiving excellent care. One of his daughters was a social worker who worked in a nursing home who told me that she often helped her elderly patients to fill out advance directives. The patient and his wife both had spoken about what they would not want done in an event just like the one I am describing. He had a written, legally recognized advance directive saying that if a trial of artificial ventilation did not suffice, he would not want prolonged ventilation, would not want dialysis, would not want to be fed through a tube. But here he was, after a long hospitalization, now in a hospital devoted to long-term ventilation care, sedated, with a trach, on a ventilator, with a feeding tube.

The wife told me that he had an "ominous" feeling about the surgery and had reminded them of his advance directive as they wheeled him into surgery. The family agreed that his health had been very poor over the past year, due to chronic heart, lung, and kidney disease, and that he often talked about not wanting to live if he would have to reside in a nursing home. They had only recently been told that if weaning from the vent was successful, he would face another 6-9 months of rehabilitation during which he would need to be highly motivated to relearn to walk and do ordinary self-care activities. Knowing him, they doubted that he would have this motivation. He had been miserable during cardiac rehabiliation after a previous heart attack. In fact, it is not an exaggeration to say that this family was wracked with guilt that they were doing exactly what this man had told them he would never want.

How did this happen? Of course, I have changed the details of the story, but it is one that I frequently come across in my work. I don't know the answer, but I do think part of the problem is that we fill out advance directives (those of us who do this task at all) with our minds. Emotionally, we have no sense of what we are saying or doing. We do not go that extra mile to really imagine being in the situation we are saying no to. The persons that we ask to speak for us in our extreme vulnerability have no idea what we are really asking of them. And then on top of this, no one along the way sits down and describes how the "rest of the story" is likely to unfold. Families get told that "the kidneys are doing better today" or that "he has a good chance of breathing on his own if we give him a few more weeks". The most likely outcome--that he will go from the hospital to a vent weaning facility for four months and then to rehab for 9 months and possibly never return to being able to dress himself--is not revealed. It's the combination of "piecemeal" optimism, inability to predict outcomes very well, and the failure to find out from the family what an acceptable recovery really would look like for this individual that combine to create unbearable pressure against following the directives that we agree to adhere to in the name of patient autonomy.

Perhaps we all lack the courage of our convictions. Or perhaps there really is no such thing as autonomy, no value in advance directives. I am thinking today, at least, that there really is no such thing, it's an illusion that we are all complicit in. Outcomes, decisions, stories, families, healthcare providers, lab results, God, CT scans, emotions, legacies, factors innumerable ... somehow combine in an unpredictable forcefield along a path that no one controls.

Today, I can't think otherwise. How else can I understand this story?

Strategy for a job interview

2009-01-04T10:49:00.000-08:00

I came out to Seattle last June to interview for my present job. Planning to come for the interview was enormous—even more enormous than the burdensome task of selling my home and moving cross-country. As much as I wish to be diplomatic, do not wish to burn bridges, I also don’t want to forget that I left a good job because I was unhappy in that job, unhappy with my role and the way I was treated as a subordinate rather than as a colleague. Unhappy that I could not offer my whole person, could not bring all of my talents with me to work every day. Unhappy to feel so severed from myself.

But I finally got it. And it was not too late. The stuckness was suffocating me. Causing memory loss. Self-loss. My important work set aside, perhaps to be lost, like thoughts mislaid or excommunicated.

And so I asked myself: Can I do this? Not just change jobs, but change my entire life again? I had to remember the feelings I had lived with for so many months, not feeling good about myself; my gifts being stifled and unwanted; feeling rejected, angry and depressed. And it was not too late. I had it in me to leap across the continent. Still. Amazing to have forgotten. More amazing to remember.

Memory, but of what? The who I am and where I can be her. Losing sight of myself is why I have failed in relationships, failed in jobs, perhaps even in friendships. In that sense, I am grateful for being able to feel so much discomfort, rather than being able to stifle it. I was thrilled to recover the instinct to locate myself across the divide of dissociation where presence takes flight, and towards the path of being my own companion again. Accompanying myself as scenes shift, as pressures mount, as difficulties arise. I am grateful that I want this life and have not settled for less.

This week I came across these jotted notes, "Strategy for a job interview":

· Feel a strong desire within
· Be humble
· Be aware
· Be appreciative
· Be reflecting
· Use your imagination
· Don’t know everything
· Be curious
· Be attentive
· Feel a deep love for adventure
· Share the spiritual wisdom that you possess

Not bad advice for living. And here I am in Seattle, settling into a life here, liking the job very much, a bit overwhelmed, very grateful.

My twenty years, Doubt, and increments of better

2009-01-01T17:09:00.000-08:00

Another year. One year ago, when I began blogging here, I wrote:

Though not inherently an optimist, I'm prone to think a new year may bring positive change. How do arbitrary thresholds hold such hope? Perhaps it doesn't matter, if indeed we ever get the opportunity to start over, we should grab it. Truth is, I don't know how to believe in beginnings or endings, since I have found little proof for either concept over the course of my little sojourn here. My days are saturated with relentless questions: Why me? Why this place? Why this life? Why now? Why not? I am torn between wanting to be worthy of the gift of this life and wanting to retreat into timeless indifference. I want to abdicate because it's all too hard, too painful, too exhausting. Yet I desperately want to cross the threshold somehow. I want gratefulness and generosity to win. For all of us.

Another year, I have some days off work. Some time. Funny concept, owning time, as in: I have some time. Makes me wonder: how much time? Crossing a time boundary reminds me again that time is a construct, and therefore not really real. Thomas Mann, in Magic Mountain provides a marvelous meditation on time.

And what is the cause of the enervation and apathy that arise when the rules of life are not abrogated from time to time? It is not so much the physical and mental exhaustion and abrasion that come with the challenges of life; the cause is rather something psychological, our very sense of time itself--which, if it flows with uninterrupted regularity, threatens to elude us and which is so closely related to and bound up with our sense of life that the one sense cannot be weakened without the second's experiencing pain and injury. ... Emptiness and monotony may stretch a moment or even an hour and make it "boring," but they can likewise abbreviate and dissolve large, indeed the largest units of time, until they seem nothing at all. Conversely, rich and interesting events are capable of filling time, until hours, even days, are shortened and speed past on wings; whereas on a larger scale, interest lends the passage of time breadth, solidity, and weight, so that years rich in events pass much more slowly than do paltry, bare, featherweight years that are blown before the wind and are gone. What people call boredom is actually an abnormal compression of time caused by monotony--uninterrupted uniformity can shrink large spaces of time until the heart falters, terrified to death. ... Habit arises when our sense of time falls asleep, or at least, grows dull; and if the years of youth are experienced slowly, while the later years of life hurtle past at an ever-increasing speed, it must be habit that causes it.

Yesterday I was looking at some of the predictive models we use in palliative care to assist with making survival prognoses. Now, I should point out, these models are pretty useless until the last months of life. In other words, there are so many intervening variables that impact on one's survival over years, that prediction is neither accurate nor always even a useful construct. That is, until the very end, when those familiar with death can see her approach. But, however useless, I plugged some of my own data into a heart failure model. I learned nothing useful or interesting from this exercise. But I stumbled on the realization that very likely, I am living my last twenty (or so) years of life. This is not surprising, if I live 25 years, I will have outlived both of my parents' ages at their deaths. What was startling, however, was thinking about how really short twenty years is. If 20 years is a quarter of a life, than three-quarters of my life have passed. I can imagine twenty years, I have already lived almost three bundles of them. A good life: four score. And of course, this prediction is more of an outside guess, not a conservative one. We say (even when we don't believe its truth) "anything can happen any time." My son will be the age I am now, when I die. Ah, I could go on ad nauseum, but you probably get my drift.

Today I went to see Doubt. I hope you see it. It was serenely intense and disturbing. Reminds me how little certainty we obtain in a life; how much we demand certainty from life. Reminds me to accept uncertainty, help others to accept uncertainty. How little we really know. The line (repeated twice) that caught me most off guard was spoken by Sister Aloysius (Meryl Streep). "When you take a step to address wrongdoing, you are taking a step away from God." Think about that.

So little time, how to make it better, how to fill it rather than empty it? That is the question I am asking today. How, in small increments, can I make whatever time I have here, alive and here, full?

What I wish for me, I also wish for you.

My New Year’s Eve

2008-12-31T15:45:00.000-08:00

Last day. Of what? Now
I see how time runs its race.
Sixty years. Nothing.

Restaurant chatter
I, without company, eye
eggs, draft these haiku

Foam-topped latte warms
Lips, tongue, palate, throat, bosom.
Finding its own path.

I recommend the
Veggie-Potato-Soufflé
At Sunflour Café

Eating alone takes
no time at all. Being
without conversation.

So willing to be
Alone. Negotiations
all inessential.

By this I mean I
prefer my own company
best of all. Always.

Haircut. Amazing.
How young I pretend
to pretend to be.

On the salon stool
I hear myself embracing
Angers of long past

After breakfast and
haircut, I will fry chicken
for tonight’s party.

Resolutions? How
Shall I walk a single block
Without a promise?

It feels natural
To wander uncertain paths
Knowing there are maps

On my reading list

2008-12-30T16:47:00.000-08:00

I've been reading The Magic Mountain, written in 1924 by Thomas Mann. In brief, it is the story of a privileged young man who goes to a tuberculosis sanitarium to visit his stricken cousin, and ends up spending years there--finding it impossible to leave a world where illness is center stage. He shuns the banal world of family and work and instead spends his time having lofty thoughts and conversations about the meaning of .... everything. I've wanted to read it for some years, but I finally bought it after I came across the just published first volume of Susan Sontag's journals, Reborn: Journals and Notebooks, 1927-1963 issued by her son, David Rieff.

Sontag wrote about many things--essays, stories, novels, extended conversations--but so often the tie-in was the body and medicine. She wrote Regarding the Pain of Others; Illness as Metaphor; AIDS and its Metaphors; Death Kit, a Novel. Apparently she was very affected by The Magic Mountain, reading it and arranging for herself a private meeting with Thomas Mann when she was quite young. I read Illness as Metaphor and AIDS and its Metaphors during the years I was immersed in AIDS, but I'm not sure that I understood her ideas until some years later. Reading her son's memoir of his mother's last illness and death--and now reading The Magic Mountain--deepens my understanding. Or gives me more to think about, another layer. For starters, the issues I think about every day, issues dealt with in medicine--and particularly in palliative care--are nothing new. The arguments, the conundrums, the hard choices and painful decisions--all of these just come with the territory of the body.

Here, Mann has his protagonist share thoughts about the origins of disease and its inevitable association with the body:

So much for pathology, the study of disease, with an emphasis on bodily pain, which at the same time was an emphasis on the body, an emphasis on its pleasures—disease was life’s lascivious form. And for its part, what was life? Was it perhaps only an infectious disease of matter—just as the so-called spontaneous generation of matter was perhaps only an illness, a cancerous stimulation of the immaterial? … The second spontaneous generation, the birth of the organic from the inorganic, was only the sad progression of corporeality into consciousness, just as disease in an organism was the intoxicating enhancement and crude accentuation of its own corporeality. Life was only the next step along the reckless path of spirit turned disreputable, matter blushing in reflex, both sensitive and receptive to whatever had awakened it.

This is a brilliant meditation on the origin of life itself. But it also suggests that the illness dilemma derives from the problem of having physical bodies; the flaw of not being simply spirits.

Mann goes on to have his protagonist (Hans) and his cousin (Joachim) consider the costs of medicine, and the use of medical resources. Hans has taken to visiting the shut-ins at the sanitarium, those who stay closed off in their rooms at the end to die. Hans hates that death is so shrouded in this place where people go to die.

Hans Castorp made a personal inspection of the deceased. He did so in open defiance of the institutional practice of concealment; he despised the egotism of all the others, who did not want to know, hear, or see anything, and hoped to reproach them with this act. . . . . [I]n fact, there were complicated motives behind this wish. His protest against the egotism prevalent here was only one of them. Likewise playing a role was his own spiritual need to take suffering and death seriously, to pay attention to them, a need he hoped would be nourished and satisfied by his getting closer to the seriously ill and dying.

A wonderful meditation for those of us who choose to work with the dying.

Here, "the horseman" has just died after a long stay. His caregiver offers her thoughts, to which Joachim expresses the idea that resources were wasted keeping this man alive for so long.

It was a miracle, she said, that the horseman had lived to see the holiday. He had long since proved what a tough cavalier he was—it was hard to know what he had used to breathe with toward the end. True, for days he had kept himself going only with the help of massive amounts of oxygen; had used forty demijohns yesterday alone, at six francs a bottle. That must have run into some money, as the gentlemen could well imagine, especially since his wife, in whose arms he had passed away, had been left quite penniless. Joachim expressed disapproval of such expense. What was the point of these tortures, of clinging to life in such an expensive, artificial way, when the case was hopeless? One could not blame the man for blindly consuming expensive gas keeping him alive, when they had forced it on him. But those treating him ought to have acted more reasonably and have let him walk the inevitable path, for God’s sake—regardless of the question of resources, or better, with considerable regard to them.

Point for point, this is exactly what we face in the ICU. How often do we feel this way? How often do we keep such thoughts to ourselves?

Still Life and Non-Sense

2008-12-18T12:29:00.000-08:00

It's snowing in Seattle and after risking frostbite, waiting for the never-appearing bus, listening to the traffic report, or falling on icy asphalt, everyone is now sitting at home watching the snow. Seattle closes down when it snows. Schools were closed yesterday and again today. Even worse, Seattle uses some kind of ecology-minded salting mix for the roads, where they bother to salt, which has not stood up well to the below freezing temperatures, causing ice-on-ice . I had my snow tires placed on my all-wheel drive Subaru yesterday, but I'm sitting it out too. Too many people here have no idea how to drive in snow, much less on ice. If you recall, I've had my share of sliding and falling on ice. I'm happy for an unexpected day at home in a warm house, with a silly cat, good music, snow drifting down and kids outside having a ball.

In this lovely free time, I'm making corn chowder and trying to learn about vent weaning and dialysis. Our service is now doing consults for a kidney dialysis center and a vent-weaning facility. My understanding of ventilator settings and prognosis for weaning is kind of sketchy. Good excuse to hang out on Amazon.com and buy more expensive medical books. I also finished reading Death Foretold: Prophecy and Prognosis in Medical Care by Nicholas Christakis, which I highly recommend whether you work in the field of medicine or not. Christakis is, by the way, one of the authors on the recent BMJ paper about happiness. <http://www.bmj.com/cgi/reprint/337/dec04_2/a2338> The funny thing about this study (which basically found that if your friends, or your friends' friends are happy, you are more likely to be happy) is that these effects did not show up in co-workers. I wonder what that means for those of us that spend so much of our daily lives immersed in work?

I know that I was unhappy in my last job and I'm pretty darn happy so far in the new one. Of course, true to my melancholic personality, I don't expect happiness to last. I used to say, when I somehow landed on a small island of pleasure, that I was "between depressions." But in terms of my work-life, the greater contentedness seems to me to be entirely related to differences in the two systems. I'm thinking about levels of systems: the teams' practices and processes, the hospitals' climate and culture, the regulations governing nurse-practitioner autonomy (or lack thereof), the communities we serve.

So not to get too personal, here's a thought. I was reading Supportive Care for the Renal Patient (Chambers, Germain, Brown, eds., 2004, Oxford Press) when I came across this sentence: "In the U.S. there can be barriers to hospice care particularly for the patient who chooses to continue dialysis." So this means, in contrast to in the U.K., where apparently being on dialysis is not a barrier to hospice care. And of course, the difference isn't in the cost of dialysis, or the philosophy of palliative care, it's in the structure of payment. In the US, the renal patient who wants both hospice care and to continue dialysis (the nerve!!) puts hospice in the position of having to pay for dialysis out of the hospice pot of funding. After all, it's all Medicare funds, but just in different pots. This is the essence of fragmentation. Hospices get blamed for this, or worse, hospice comes to accept an artificial divide between disease management and comfort care. Now keep in mind, for the unacquainted, that the dialysis patient who stops dialysis will die in an average of 7-10 days. That's 7-10 days of hospice, in the US book. Now I ask with honest incredulity, does this make sense to you?

Closer to home: In Pennsylvania, a nurse practitioner has to have a supervising physician in order to practice and prescribe medications, in Washington state, there are no such requirements, NPs can practice and prescribe without any relationship to a physician. In both states (all states, because it is a Medicare policy) an NP get 80% of the reimbursement that a doctor gets for providing the same service. In the former job, the palliative care service was embedded in Home Care. Speaking Medicare regulations again. What a mess. In the current job, we are a medical service. Like any other medical service, say Cardiology or Infectious Diseases. So there are minimal barriers to providing care in multiple settings, home, hospice, nursing home, hospital, dialysis center, vent-weaning hospital. But in both places, decision algorithms are designed for billing, not for providers. Providers spend a enormous amount of time just learning the rules.

Does any of this make sense? I can't make enough sense of it to even begin to know how to criticize the system or how to make it better. Although I guess all of us (patients, parents, partners, doctors, nurses, etc.) should let Mr. Obama know how we feel about it.

Now, I'm going to sit on the couch with a blanket, cat in lap, cup of coffee in hand and read another book, this one just for pleasure, Magic Mountain, by Thomas Mann. Thinking about Susan Sontag last week reminded me that this is one of the classics that I've somehow missed.

Susan Sontag and my grandsons

2008-12-10T20:26:00.000-08:00

You know, when I wrote my last blog about wanting to be a BON girl (thanks for the concept, Bob, a girl can hope, right?) I was being lazy. I wanted/needed to blog, but I just couldn't get to the internal place where I needed to be. In a way, I was just faking it, getting something out there without much effort, but then of course, in the other way, I want nothing more than to be read, I want to be read in the same way that us humans long to be seen. And the response was very gratifying: keep writing, post more often, keep on keepin' on, as we said in the sixties. Very much, thank you. So, if I have just one reader (and I have more than one) I should shoulder the responsibility of doing this thing. Blogging. In fact, not so long ago, I said I was blogging to save my life. And here I am, living. Still. So far, anyway.

So I will promise myself that I will write. And not crumple and toss if it's not prissy-perfect-prose.

So I've been thinking about self-consciousness. This arose when I read a review in the New York Review of Books about the forthcoming journals of Susan Sontag, edited by her son, David Reiff. I blogged about David Reiff, after reading about his book, and then reading his book, Swimming in a Sea of Death, about the last years of his mom's illness and dying. The forthcoming book is the first of three volumes, it's titled: Reborn-Journals and Notebooks, 1947-1963. (Reborn ... hmm ... have to think about that, she was an atheist after all.) Apparently Sontag journaled constantly, often daily, from age 15. (Grrr ... jealous!) So, the reviewer (Deborah Eisenberg) teases us with portions of these early journals. The fascinating thing to me is Sontag's enormous self-consciousness. She calls it "x". She says: "X" is when you feel yourself an object, not a subject. When you want to please and impress people, either by saying what they want to hear, or by shocking them, or by boasting and name-dropping, or by being very cool. She also says, America is a very X-y country...

So she doesn't call this "x" self-consciousness, that's what I'm calling it. These few lines of hers tell me so much about myself, but also made me think of my two grandsons, now 6 and 9. One, the older one, Yann, is self-conscious, the younger, Dilan, not at all. Dilan makes the most amazing funny faces and expressions, but is never looking to see if you notice, he really doesn't care. It's amazing. Yann does think about who is watching and what they think of him. He is surprised by compliments and anxious to do well, perform well.

How does this happen? What does it do to a person? What does it mean? I have no idea. Sontag was brilliant, driven, successful, wildly noticed. But there are many unselfconscious people who are brilliant and successful, maybe less driven and wildly noticed.

~~~

I visited one of my nursing home patients today who longs for company. It's not the loneliness of dying, it's just loneliness. Most people don't know how to be alone even in the best of circumstances--how to be ok alone. But from Sontag's words in her youthfulness, I see that the need to be alone, to hold sacred the space for solitude may derive from wild self-consciousness, that only stops berating and accusing the self when the self is alone. But again, I don't know. This is what happens when I just think on paper (er, on computer). I wonder if I will find myself lonely when I am dying. I'm more likely to be the one who will wait until everyone leaves the room, or more so, kick every one out. But maybe not. I have no idea how it will go really.

We talked a bit among our team about Washington's Prop 1000, the so-called assisted suicide bill that Washington voters approved by a large margin. I sense that my lack of reservation, that is, my positive feelings about this measure, are a bit of an anomaly among my kind. Indeed the palliative and hospice groups came out against it. The AMA came out against it. Have I "over-normalized" death? Does this have anything to do with my self-consciousness? I doubt it. But I'll think about it.

Meanwhile I have to learn how to tag. Tag, you're it. And practice at not being perfect. As if.

Blogs of Note

2008-12-07T16:14:00.000-08:00

I'm looking through Blogger and noticing the 'blogs of note'. Interesting blogs, certainly eye-catching, some profound. But I can't help wondering, why isn't my blog a "blog of note"? Like everyone else who writes a blog, I want everyone to read mine. I aspire to be a BON.

Is it because:

I have no idea how to create a fabulous background and instead am using a template?
I don't have a camera and rely on google images for pictures?
I haven't imbedded any video from YouTube?
I'm not interested in pop culture?
Instead I'm interested in: dependency, depression, death, data?
I don't demonstrate external consistency?
I appear to lack a sense of humor?
I haven't transcended the divide between what I need to say, and what can be heard?
Few want to hear what I have to say?
I've inflated the importance of what I have to say?
I've inflated the importance of being noticed?
I'm too depressing?
I'm just full of shit?

So what do you have to do around these parts, to get the old BON nod? Anyone know?

When she tells you she is tired, listen.

2008-11-25T15:50:00.000-08:00

Every time I wash my hair, I think about my mother. Again and again, as I squeeze a dollop of shampoo into my hands and begin to rub lather into my scalp, I remember.

In her last months she was so tired, a fatigue that taught me everything I needed to know about fatigue. In truth, my early responses, when she said "I'm so tired, all I want to do is sleep" were terribly unhelpful. I thought I knew what it was like to be tired all the time, actually in the throes of recurrent depressions, I did know. But Ede had never before experienced fatigue as a symptom. For her entire life, nearly 80 years, she woke early and never napped. Indeed, as she grew older, she seemed to need less sleep. Until the cancer, her energy seemed legend. Until the cancer. So I really didn't get it. Would tell her it was ok to be tired, ok to lie down, ok to rest. As if I knew.

Then one day, getting out of the shower, as I was helping to dry her hair, she said, in a uncharacteristically quiet, almost offhand voice: You don't really have to shampoo twice, do you? I knew exactly what she meant. Although in reality, instructions have changed. Decades ago, old directions on glass shampoo bottles read: shampoo. rinse. shampoo again. rinse again.

There was a lost feeling, a sadness. All these years, I thought, she was following old directions, but now that she is so tired, she must question what is truly necessary. I thought about the history of hair washing, although I certainly don't claim expertise. But I do remember perching on the tall yellow step-stool with a towel around my neck, being tipped backwards, head lowered, my mom or my aunt washing my hair in the kitchen sink. As much as I hated it, once a week, I couldn't get out of it. And I had lots of hair. And she shampooed twice, rinsed twice. There was a time before showers, when bathing, shampooing, hygiene, the whole shebang, was just a different set of rules. There was a time, during my lifetime, that you didn't wash your hair if you had a cold, or were on your period. Ede told me that in her teenage years, they called having your period, falling off the roof. I can only guess that the phrase was so obscure so that it would forever remain obscure. A life in which one could not imagine seeing ads for tampons on television. A time when there weren't televisions, tampons or showers.

These thoughts, as I shampoo my inch-long wash-and-wear hair pretty much every day (shampoo once, rinse once), converge: my mom dying a bit each day; me at six getting my hair washed in the kitchen sink; images of my mom and her sisters as teenagers whispering about their periods; me drying her hair when she was too tired to do it herself. I am grateful for the images, the memories, the shuffled meanings. I am grateful for the lesson.

If someone, a patient, a family member, anyone, tells you that she is tired, very tired, listen. It is a symptom. Like pain. For some, it's the most horrible symptom of all. Life is fleeing, and here you are, unable to stay awake to watch. And all the rules suddenly must change.

Occasional Notes from Seattle

2008-11-20T19:47:00.004-08:00

For the past two months, I have been sending occasional notes to my "palliative pals" at the Lehigh Valley Health Network where I worked with the palliative care team for 2 years, before moving to Seattle to join the palliative care team at Harborview Medical Center. Partly to stay in touch with folks I miss, partly to decipher why I left one palliative care team to join another. I am publishing my most recent note here, as a personal incentive to blog more often about the world of palliative care. A world I inadvertently fused with in the late 80's when I was involved in AIDS activism and AIDS medicine. During the years when palliative care was really all we had to offer, when palliative care meant watching my best friend die in his 30's. When I discovered that no other part of the life cycle interested me more, engaged me more, or compelled me more than death.

For this intention, I am grateful to Pallimed, A Hospice and Palliative Medicine Blog (Visit at http://www.pallimed.org/) and to Christian Sinclair in particular, who writes for Pallimed. Christian is a palliative care doc whom I've never met, but have come to appreciate (love? is love too strong a word? I don't think so, this is strong stuff, don't you think?) through following his tireless review of palliative care literature along with chock-full-of-smarts-compassion-&-humor writings. Amazing isn't it? When worlds converge. Palliative care and blogs. Who knew?

So (as everyone in Seattle starts sentences with ...),

As we head towards Thanksgiving, I am feeling thankful. The whole world changed with the election of Barak Obama, and I survived my first week attending for the palliative care service at Harborview! It was a wild week, there were 4-5 new consults each day, and on Wednesday we had 20 on the census. I had a resident and a wonderful medical student, so I did have help. But I had never worn the attending hat before, and I was grateful to get through it without screwing anything up. In fact there have been a lot of firsts this month for me--a lowly (in most states) nurse-practitioner. The first day I was covering the outpatient service, I signed not just one, but two death certificates. I am carrying 3 pagers. I facilitated death rounds for the MICU residents. The youngest patient I've followed was 9, and about half of our consults are under 60, there is more trauma here than chronic illness. It's hard, but I love this job, I guess just wasn't fully walking in my own shoes in a job with less responsibility, less challenge.

It's taken me these two months to begin to understand a tiny bit about how things happen at Harborview, but there is an incredible cooperative spirit and collaborative attitude. I believe there is something quite special about this hospital, in addition to it being in Seattle, which is certainly a liberal-green-friendly leaning city. Pretty much everyone working here says that is the case. The idea is that if you like working in this environment (fast-paced, very high acuity, state of the art, safety-net mission) you stay forever, if you don't, you leave at 30 days. I love going on ICU rounds and seeing the nurses being very much a part of the team, giving report, asking for what they think the patient needs, very respected, and of course, very competent and caring. The trauma ICU probably does 3 or 4 withdrawals of life support each week, using a protocol developed by palliative care, so everyone is extraordinarily competent when it is time to withdraw life support and and provide comfort measures with family present. We don't even get called, unless there are complex family dynamics.

The current plan is for me to build the outpatient program. I almost regret agreeing to that plan, as it means I will only attend in the inpatient service about once a quarter (now that I've done it once, I realize how exhilarating it can be). But the outpatient opportunities are wide open. Why things are so open here for the palliative care program, and less so in other communities is something that I am really trying to grasp. I will be seeing patients at a dialysis center and an acute care vent-weaning facility. I have 1/2 day of clinic once a week in adult medicine, Darrell has a 1/2 day clinic in oncology, but that could grow. This week we were the primary providers for 5 hospice patients, 2 at home, and 3 in nursing homes. The hospice folks really love us because we make house calls, I don't have to tell you how amazing that feels to me, to be having a collaborative relationship with hospice!

The justification for hiring another NP for the service was based in part on growing this program, so I will have to make it grow. But then, pretty much everything grows here, bathed softly in water, not so much rain as drizzle, almost every day. Seattle is breathtakingly beautiful. Did I mention I have a spare bedroom, and that you are all welcome to visit anytime?

A most difficult conversation

2008-10-04T18:01:00.009-07:00

How can I tell what he is thinking? His front teeth missing, his voice so weak. I struggle to hear, to make words of his soft garble. I say lightly,'You're making this hard for us, you know.' He smiles, a smile laced with sweetened regret. But what can he do? He doesn't have an answer. I sit beside him, he is crumpled in his bed, his nurse comes in and out of the room; she pulls his Foley out in the midst of this most difficult conversation. One less tube.

No one has visited. He has no family to make decisions for him, at least none that he is in touch with. There is a brother, many miles away, who has his own problems, has little to say about what we should or should not do for this frail, very ill old man in the hospital bed. He has a sister, but he doesn't want us to call her. He is estranged from his children. It seems there is no one but his caregivers to help figure this out. The first time I spoke to him, more than a week ago, he just wanted to be allowed to eat. He was sitting up then, a bit more alert, a bit more aware that he had options about his care. All he wanted was a cup of coffee and a sweet bun.

But his nurse objected. He had in fact failed his swallow test and would likely aspirate--bring food into his lungs and develop pneumonia--the same event that brought him to the hospital in the first place. To me, at that time, he seemed to be saying: OK then, it's worth it, I'll take my chances. Let me eat. He was clear that he didn't want a feeding tube. His caregiving team was divided on the issue. Even those of us who wanted to let him eat knew that he would choke and develop the pneumonia that was likely to be his last illness, the old man's friend. There was a standstill for almost two weeks, he was slowly starving, becoming weaker and more confused. Then finally he agreed to have a naso-gastric tube inserted to bring nutrients from a bag hanging above him into his stomach. Because he tried to pull out the tube, for several days his hands were tied with soft restraints to the bed sides, but eventually he was freed to pull it out or not, as he would. We were trying out best to keep him comfortable. Today he gently played with the tape holding the tube in place along his nose while we conversed. But not surprisingly, he seemed to have aspirated again. Medical care simply wasn't helping, he was struggling to breathe and clear his lungs, hanging on for something, but what? Wistful, he talked about food and getting out of the bed into the chair again.

Now he says when I ask him what we should do, what we should stop doing, where he hopes to go from here, is this: Just help me.

At the end, there were no tubes, and although we gave him morphine, his breathing remained labored. He died. Alone in that bed.

Random thoughts: first week in Seattle

2008-09-06T19:16:00.007-07:00

9/01/08
My first day in Seattle: The house is so small, the outside so big. There are 3 coffee shops within walking distance.

9/02/08
This is life on a whole different scale than I have known.

9/03/08
Unfamiliar foliage. I want to have names. I need Hildy to tell me what these trees, these shrubs are called.

9/04/08
Unfamiliar music. Bands that I have never heard of: Fucked up; Mogwai, Built to Spill; Silver Jews; Mission of Burma; Dengue Fever; The Dead Science. Morning edition starts at 4 AM. The radio call letters start with K instead of W. Instead of the Village Voice, there is The Stranger.

9/05/08
There are parks everywhere and water everywhere. People walk, ride bikes, smile and drive without rancor. In my quiet little neighborhood, the mail is delivered for the whole block on one corner of mailboxes, like in the country. There are no stop signs in either direction, small traffic circles, friendly greetings, no sidewalks. Further out, there is suburban blight, K-Mart, and Lowes. No Wegmans. You can get most anything at Fred Myers.

9/06/09
Now all of my stuff is here crowding me, reminding me why I am here, what my life is about. When the house was empty, I felt so free. I used the computers at the library, wandered about, mostly staying outdoors. Oh how I wish I had another week to get to know this place before starting to work again.

Seasons of Corn

2008-07-27T16:44:00.005-07:00

People do change, although we don't change because others want us to, and we can't force others to change even when we think it would be good for them or because we wish they would. Even I can change. Do change. We change when it makes sense, when we are ready, when the benefits outweigh the hazards, when longing overcomes grief and intransigence. When we are blessed and offered a gift. When we have no other choices for survival. When we learn that it's not sinful to be happy. When we are confronted with the need to care for our own self, so that we can continue to work , continue to love, continue to care for others. When we notice things we have always ignored; suddenly see that which has been hidden or denied.

I have always had difficulty with attachment. I like living alone. I will not miss you when I don't see you for months. I don't call. You have to call me and pursue me to hold on to me. There is a history to this, it is unimportant. In some ways it's a simple fear of abandonment. In some ways I have a transcendent sense of attachment. I don't need to be in your presence to hold on to the connection. I accept that things are not lost, sometimes we just don't know where they are, what they have become. Because I am leaving, again changing my life completely (seemingly), I am having to answer to what it is I will miss here. In this place. At this job. During this epoch of my living.

Here is where I drive to work everyday along country roads where farmland is abutted by tracts of enormous new homes, many burdened with the effects of over-financing. There are these fields that have homes scattered on them with no trees in sight. Stupid for homes, right? But then there are fields and fields of corn. Mostly corn, some soybeans. It is hilly land and corn grows well on it. Sweet corn and field corn. Corn for fresh-picked, salt-buttery summer eating and corn for fuel. Corn meal, maize, mush, polenta, corn syrup. Corn.

I will miss the seasons of corn. The land tilled and reddish and ready. The short green stalks. Watching, almost day by day how high the corn grows, the ears now visible, stalks as tall as I am. That's where we are now in late July. Corn stalks shimmering in streams of hot sunlight, bending with torrential rains. Corn, corn, corn. Later--which I will miss this year--the ears will all be harvested, some yellow, some white, stalks slowly turning brown. Dying. Some farmers will plow them under in the fall, others let them stand til spring, letting snow fall over them. Finally plowed under, tiny stalks rise again. Generations of corn, parent, daughter, granddaughter, again, again, again. Seasons of corn.

I will miss these seasons of corn. As a metaphor for missing everything else that is here and won't be in Seattle, where I am heading. But of course it will be here still. As will everything else. Be here still. Be still. Watching seasons of corn. Taking nothing, taking everything, with me.

my new-news

2008-07-04T13:59:00.002-07:00

Wondering why I have been so unsatisfied with my "good life" became a daily activity for the past many months. Something about the constraints of my job (love the work, hate the job) but even more, the limits of the community where I am working, have locked me in a block of ice, so to speak, a place where my deepest creativity has been stifled, even villianized. I didn't think to ask: where are the Jews, the blacks, the ethnic flavors? where are the artists, the poets? where are the old hippies? where is the STD clinic, the musicians, the drug addicts? where are the lesbians for Christ sake? I acted out the part of a loner, needing no one. I love my little cabin on the mountain, but a cabin on the mountain is just a cabin on the mountain, really. A permanent retreat, really.

Eventually I accepted that I should simply take responsibility for my own bliss/happiness/whatever. And after that, a series of events fell into my lap and have catapulted me into a new job/new city/new story. I don't actually know how these things happen, but I know that they do happen.

What happened is ... I have been offered job as manager of the palliative care program at Harborview Medical Center in Seattle. I have accepted the offer, and plan to move to Seattle in September. The job will be challenging and the idea of living in Seattle is totally exciting. I've always wanted to try bicoastiality.

Of course, I can't tell you how the story will unfold. Yet.

Things I would like to do before I die

2008-06-01T10:59:00.004-07:00

Write every day

Volunteer my time somewhere that has nothing to do with healthcare

Learn to speak a second language

Study philosophy

Get at least one more degree

Work on my Jon-poems and get them published

Do a unit of clinical pastoral education, volunteer as a chaplain

Do a re-write of my novel, Vivian's Disorder

Draw, paint, write poetry

Make collages from old pictures

Read a million, no a zillion, novels

Get rid of things I don't need

Plant things in places that I don't live

Visit people I love

Sell my home and make a new life in a new place where I can grow old manageably

Retire and work part time for my son in Miami

Spend a lot of time at the beach

Live in a city I have never lived in before

Visit Ireland and Italy

Burn my journals

Do something with my therapy tapes

Open a cafe-bookstore

Eat outdoors as often as possible

Stargaze on clear nights

Be ready for whatever is to come

If I must live, let me live my own life

2008-05-11T12:02:00.005-07:00

I had the urge this week to return to my hippy roots, to don patched jeans and tie-dyed shirts, cover my fingers with rings, grow my hair out into long tangly ropes, lose the bra. The desire comes with a realization that, whatever may be, I want to fight for my creative life and hold on to who I am with ferocity. The months and years of these down-in-the-dumps-days are a glaring signal that I have forgotten how to live my own life, how to obey the one slogan that I had always meant to live by:

All I can do is live my own life the way I believe it should be lived. I can do no more good than this, and without doing this, I harm not only myself, but deprive the world of my singularity, which after all, is the one gift I have to offer.

Yet I have not been doing this, or at least not been doing it enough to maintain my balance. Instead I have been doing that which needs to be done as it appears before me, without glancing aside, gathering in my bundle of needs, listening to the inner voice, living in a way that is pleasing to my soul, or even breathing regularly. Yes, I have not been breathing. My body does not feel like my own.

And along side of this non-breathing, non-body behaving, I have been fretting that my authentic self might jump out at any moment, scaring the shit out of whoever is present. Imagine that: I have been living in fear that I would frighten others! What irony there. What a loss of self there. What a pity there. I don't exactly want to be seventeen again, but I would like to have access to her fearlessness, her certainty that she is the only one in charge of her body and soul, her fierceness and determination to be free, authentic, and true to herself.

I would like to commit anew to a creative life, a life of memory and passion situated in a universe of intensity and surprise, willingness to change and be changed, a sense of that which I cannot imagine, but do not wish to deny.

I would like to return to that once-familiar place where I don't lose connection with my life, where I please my muse with the fruits of my heart and mind every day. Where I don't think: How could I possibly do that? or How unworthy I am to be saying this, wanting this, attempting this, this, this ... living.

long time no blog (with homage to dead artists)

2008-05-03T08:34:00.006-07:00

It's a hard conversation to return to, leaving it dangling as I did in March. These days I'm thinking incoherently about so many connections that I can't unjamble, can't articulate, can't let go of, unable to view hardly any one thing as clear and separate. Or perhaps I don't want to see the separation between thoughts and things and ideas. Connections and layers of connections. Spider webs, like dreams I had in my twenties of being hung upside down in an earth-size ball of sticky-soft webbing slinging me here and there, offering the impression of flight and freedom. I am lost in a jumble, but I think I like being lost. The situation is grave but I'm digging it.

I heard a snippet of Nick Drake's voice on NPR this morning and think: I must write about the suicide years. Those beautiful men and women who sang lyrical koans and then overdosed in the angst of not belonging. Of not being able to live up to our ideals, to change themselves into the gentle, loving, unselfish beings they believed in because the world itself destroys the unselfish among us. The sixties. The seventies. Then in the eighties, slaughtered by guns and AIDS. Years when death became too real to imitate. The way war has wrapped itself around our lives all of my life, and endlessly as far back and as far forward as my mind can travel. We have never lived without war, may never live in peace. And I so often think of our lost musicians, think: Where would I be without their music, which lives on without them? The tender moments of peace they bring to my shattered life.

[I too cannot tolerate not making a difference sandwiched between irreconcilable slices of fury and nihilism. I mourn my loss of innocence and longing for death. Death will come. That's what they didn't know. It's as if that is all they didn't know. ]

Are you thinking I've lost my mind? A friend reminds me that this is the 10th anniversary of my one serious emotional breakdown, which occurred when I was in the same stewpot that I soak in these days: Love my work; hate my job. But that's a slogan, the deeper truth is that I envy writers and musicians who can say whatever they think without wondering if they will get into trouble, maybe lose their job. I want the freedom of thinking what I think, feeling what I feel, and knowing what I know. I am feeling persecuted for my contrary ideas, my essential anti-authoritarian stance, my hatred of rules and regs, my simple desire to have some input into how things are done.

A friend calls this very morning to say she left her job, couldn't stand it any more. Her supervisor acting threatened and retaliatory, punishing, bringing her to tears day after day. So she quit. The sense of what is possible is refreshing once you let go of what is unbearable. What is unbearable to me is working so hard while trying to learn the ropes of aging, not being able renew my health and wellbeing through my own actions, being told that I am part of a team, while being shown that I am at the bottom of a hierarchy, working with women while feeling like I'm working for the man, general themes such as being lied to and having critical information withheld. Also: not being able to get to a yoga class or write a blog faithfully. But most deeply--being shamed into conformity when conformity has always been my most foul enemy.

Oh what shall I do? I took a new antidepressant for 10 weeks during which I gained 10 pounds. And so I had to stop taking it. On the eighth post-drug day, I was sitting at this computer, trying to assemble my work-day, and couldn't get onto the program I needed. After some weeks of tamped-down responses, I broke out in a fury of rage. I thought: And this is what I was supressing? Is that a good thing? Is becoming able to cope with what I hate a worthy goal? I don't know. I saw a therapist this week. I started yet another drug. The truth is I'm doing everything I possibly can to avoid a showdown at work.

But folks, I must say, I'm not too hopeful about that. But I will hold hands with my lost friends, the comfort of writing, the promise of being authentic. Even if it kills me.

"Take care of yourself"

2008-03-22T09:37:00.006-07:00

I saw a psychiatrist in February because of the persistent disengagement from life I've been experiencing. Engaging brings up issues of interrelatedness and interdependence that flummox me. Issues of dependency comprise a huge part of my work-life. We are programmed to travel a path from total dependence at birth to functional independence as adults. For elderly, disabled or chronically ill persons, transitioning gracefully from independence back to various levels of dependency takes an enormous amount of courage, trust, faith, good will, acceptance, and humor. I tell my patients that letting others do for them is a gift that they can give freely or stingily to their caregivers. But I am no expert on this terrain. Unfortunately I have long been entrapped in a vortex of counter-dependency--opposition to any state of dependence for myself. Instead, I trudge through life expecting little from others, causing me to cringe when I have to ask for anything or admit to any weakness, experience despair rather than outrage when I feel mistreated. I take care of others as a way to compensate, I speak out against injustice and advocate for others as a way of sublimating my own needs. I've worked on this, in particular, I admit that it's an arrogant stance, my reliance on others is a profound fact of my living. But something in my work-life repeatedly triggers a retreat to my past, raising dust clouds of anger, frustration, exhaustion, hopelessness, anhedonia. I always hope for meaningful relationships with co-workers (and thankfully have encountered many precious connections with both colleagues and patients) but in the health care institutions where I have worked, the day-to-day atmosphere is a formalized, distant, closed hierarchy that limits my perceived choices to either acting out or inhibiting myself. I can't seem to figure out how to provide healthcare in this atmosphere.

Medical encounters forge relationships, potential opportunities for health or illness. In deciding to see a psychiatrist, I tried to select someone that I hoped I could connect with (within the limits of my insurance coverage, that is). I did my research as best I could. I waited almost three months for the appointment. He was a decent guy, listened attentively, spent almost an hour with me, gave reasonable advice and another medication to try. I have nothing negative to say about him really, but at a second visit last week, lasting about 12 minutes, I just didn't feel any presence. From him--a nice smile, the right words, but ... what? A mode of conversation that sets our roles in opposition--doctor and patient? A tone of voice that signifies: this is a professional encounter? An unwillingness on my part to go where I needed to go, to ask for what I needed, to make the connection stick? There was a falseness, an inauthenticity similar to what I dread daily in personal encounters. What was it? Why do I always feel unsatisfied and ashamed of my needs? Do I just expect too much, is that why I'm so readily disappointed? Do I lack the ability to connect on a level that feels real to me, or do I just lack the ability to accept the distance that exists between persons, the roles that determine relationships, our too-sensitive psyches and seeming lack of toleration for bringing our real selves into our encounters? As I left his office, he said "take care of yourself".

I couldn't help thinking about other medical encounters: how comfortably I converse with my primary care doc, yet how I felt like a piece of meat at my routine mammogram appointment when the receptionist asked for my driver's license and made a copy of it. I understand her job is boring and repetitive, but nothing in her tone of voice came near to suggesting she was speaking to a human being. (And why did they need my driver's license? I didn't even bother to ask.) I had a stress echo test last week, and the doctor was charming and curious about me; a similar test that I had about 8 years ago left me in tears, when the doctor didn't even bother to speak to me. I know that I probably have better medical encounters that most people. I have health insurance, I am a health care provider, I'm not easily intimidated by professionals. This deepens my discouragement about the limits of health care, the lack of connection and caring that might actually make a difference in a life.

So many questions arise from this meditation about healthcare and human relationships. What is the truth of relatedness? Is our primary mode of existence a deep hiddenness covered by a false presentation of self? What is the self we offer in relationship? Are we simply alone, unable to help each other, without reasonable hope of connection for the vast majority of moments of existence? Can I do any good as a health care provider without forming a deep connection, spending enough time, following the patient's lead instead of ticking items off of an agenda? Although I visit patients in their homes and work primarily with palliative or existential issues, I know I speak for many healthcare providers in other settings who want their efforts to make a real difference. Who want to work in a manner that discovers healing through relationship. Many of us are becoming more and more resentful of being asked to see more patients than we can reasonable care about in a day. Yes--care about--we think of that as our job. In my own job, I don't fix much, I don't have a magic wand or substantial resources to offset the suffering I encounter. What I do experience is finding that offering a not-false presence and time does seem to matter. And I know that there is a limit to how much of that inner resource any one of us has to offer in a work day.

I don't fully know what it is like to be unable to get out of bed without a helper; to not be able to read or listen to music because of sensory losses; to not be able to prepare a meal for myself or use the toilet in privacy. I don't truly now how finally alone we find ourselves at the end of life. I do know that life feels like a pretty lone venture most of the time. And the adage to "take care of yourself" is a mountain of truth.

Hyoid

2008-03-08T07:03:00.006-08:00

Yesterday, driving to work, the meditative-creative state that I rely on for sustenance re-appeared. Hallelujah! When something is amiss, you feel absence, but can't always pinpoint what is missing. Without access to that state of mind, I don't write and I feel a type of distress that is hard to shake. It's been a difficult time at work and I have been thinking in my sleep instead of dreaming--always a bad sign. I was operating under the totally dumb illusion that the ever-worsening economic downturn wouldn't affect me emotionally. I have a job, a home, a car and can cut out the extra unnecessaries when I need to without becoming gloomy. But of course it's all connected. The hospital is cutting programs, demanding more "productivity" of fewer staff, and placing a hold on new hires. Rules and regs are being enforced as a way of displaying tough times ahead and demonstrating who's in charge. Anxiety is infectious and shit rolls downhill. In my own team, I've been censured for my disquieting, anti-authoritarian style and handed what feel like ultimatums about my attitude and behavior. I realize that like anyone else, I could lose my job in these times. Or more to the point, I could reach unrelieved distress levels that typically cause me to flee. My ten-year plan that was to deliver me to a reasonable retirement could dissolve.

I saw a psychiatrist in February, after a year of sluggish depression, and a 3-month wait for an appointment. He was a nice guy and offered simple, but accurate, insight into my depressed state which I agree is choked with undigested fury. He just said: speak up for yourself, ask for what you need, tolerate the anxiety that prevents you from these behaviors, stop substituting others' needs for your own. He added another drug for me to take. Last week, I turned in my mileage reimbursement request for February after not managing to do so since last September, to the tune of about $300/month. I had a cardiac test that tells me I'd better take care of myself--it's sort of now or never at this point. I'm thinking about what I need and how to avoid becoming one of my own patients--old, ill, miserably dependent.

As always, I'm looking for a new narrative, perhaps a new metaphor for how/why I am living. I feel that I've been called to declare myself, safeguard myself from harm, so that I can persevere. In my introverted, loner life, I claim a internal peace that feels intensely connected and precious. When I am writing, or driving contemplatively, or walking in the woods, I become intensely aware of the interconnections and intuit my tiny place here and feel the "enough-ness" of my life. I find grace in watching snow fall or listening to naked trees offering their branches upward in prayer. And for some reason, I am able to capture this quiet when I sit with my patients and help contain their fears and grief and sorrows. But at the office I am one big mess of energy, anger, and argument. In social settings I lose my quiet self and pick up the emotional energy surrounding me, offering it back in my own version of disquiet. In brief, I don't connect, or even cause sparks, I blow fuses.

So here is the metaphor/simile that I wish to embody: the hyoid bone. The hyoid bone is the only bone in our body that does not connect with any other bone. And its function separates humans from other primates. By its suspension above the larynx, it supports speech. I want a meaningful life, where connection is present without so much close contact. I want to support important functions in the universe, but still be allowed my own little place here. I want the quiet that allows me to actually be useful and add to the cup of peace that is continually drained by violence and greed. Is that too much to ask?

I blog

2008-02-16T16:28:00.003-08:00

I'm quite serious when I say I'm blogging to save my life these days. I have a large file cabinet drawer full of volumes of handwritten journals, dating back to my adolescence, and they too have kept me afloat during treacherous times. I am an introvert, perhaps a bona fide loner, and the act of fully entering my inner life renews and supports me in ways that being an actor in the world simply doesn't. For some years, instead of journaling, I wrote letters to my therapist, sending them by email. Later, I tried keeping a journal in word documents on my computer, but that never really worked. Once I'm typing rather than hand-writing, I am self-conscious enough to need the writing to be good, hopefully very good, and at minimum, as good as I can make it.

I started blogging on myspace about 18 months ago, and found the experience tremendously satisfying and freeing. I'm sure it is knowing that my words are being read. This is the relationship I crave. Writer to reader, a life observed, God watching over me--but not in an engaged, intrusive way, just watching. Someone to watch over me. This is what I need: to be seen absent the need to be engaged or interfered with. Psychologists call it the observing ego. For me, the idea of being seen makes me labor over the words I choose, makes me take great care with sentences and punctuation, makes me strain for a perfect paragraph. Makes me a writer.

I'm thinking that, unlike journaling which is a private matter, blogging has both inhibited and disinhibited me. I can destroy the handwritten journals with no one the wiser. (But will I?) I suppose exposure becomes the writer's dilemma once one assumes she is being read. Parts of self get embroidered into the text and parts of self involve others who also show up disguised or otherwise in the writing. This happens whether the writing is fiction, poetry, blogging, or creative prose. Readers may know me or come to know me through the writing. Readers may see themselves, or others that they have relationships with, drawn with my sensibility and interpretations. You can say too much, or not enough. For example, I know exactly what triggered the depression I entered a year ago now, but don't feel comfortable sharing it in a blog. Truth is, I have gone back to early entries and deleted certain events that I feel that are better left concealed.

The essence of blogging for me is digging down to find authenticity within myself. When I feel a need to censor, I get furious. But when I let go of a truth that may cause harm somewhere, I feel deep shame. It is in the gap between fury and shame where the writing is strongest.

I am not saying what is on my mind tonight, hoping that it will be revealed in time. And yet I need to speak, to write, to make something of what I cannot speak. So let it be this: I blog. I am blogging. I will continue to blog. I am blogging to save my life.

Equanimity (for Constance)

2008-02-10T08:23:00.000-08:00

A thought, driving through the silent falling snow yesterday morning, wanting to stop and have a look, frost-style, but urged forward by an impatient honking soul, ran something like this:

sudden beauty laced
with sorrow, conjoined twins
our inheritance

Missing a syllable, and not sufficiently precise, the thought that humans know beauty, have always known beauty, our uneven trade-off for the burdens and tribulations of daily human consciousness.

~~~

For weeks now, I have been wintered in and feeling depressed again, without an interval of cheer. But when I drove home later on, after about 4 inches of fluffy accumulation, wondering if I would make it up the drive~~lo and behold!~~someone had plowed my driveway. I swear I smiled for about 20 minutes. I have no idea who did this for me, obviously a neighbor, but I don't really know any of my neighbors. I love the secret good deed, wish that I could learn to posses the humility to pass on good deeds without looking for gratitude, reciprocation, credit.

~~~

Today I feel like an impostor. I am so estranged from my own spirituality, other than snow-watching (which does count, I suppose). Working takes things that I have no right to give and can't really live without. I have to get this right at some point. I am longing to re-discover a place that I have at least visited where mystery is wonder, history has meaning, I am nothing, silence is everything, and life is precious.

~~~

I am truly blogging to save my life these days. And trying to revise my manuscript, incorporate some exercise into my day, fit in a haircut and take my car in for service and get my refrigerator fixed, and hold on to a bit of equanimity.

~~~

Ah, equanimity. I long for nothing so much as this.

Tractor Beam

2008-02-04T14:49:00.000-08:00

I had a meltdown at my office this morning. Over the weekend, a new program was installed in everyone's computer, and this morning all of our "My Files" had disappeared. Wiped out. I've spent hours putting together a census list of my patients: phone numbers, diagnoses, prognosis, physicians. Gone, just gone. Templates that I use when writing patient notes. Nowhere to be found. PDF files of articles that I use all the time. Lost. Pictures of my grand-babies. Shot to hell in a canon. Or so it seemed. My colleagues corroborated: everything gone. I really lost it, screaming and cursing. Loud and ugly. Someone had to tell me to chill, and then I just started crying. Then felt terribly embarrassed. I hate to be seen crying at work. Not to mention that my face shows the effects for hours. Literally.

Why? Why did this enrage me so? It only took about 30 minutes for someone to locate the "ghost drive" where our personal files were stored temporarily. They'll be back on our desktops tomorrow. No big deal, right? But shouldn't someone have prepared me for this, so that I would not have to feel like the bottom of my world was sagging, imminently threatening to fall out from under me? No, the relevant question is, why did I feel this way? Don't I trust anyone or anything to look out for me? Apparently not.

Driving up to my poetry workshop a few weeks ago, I felt the need to stop feeling so angry all the time. I was quite surprised at the thought, I hadn't really admitted to myself that I am holding a great deal of anger. I don't mean the chronic, constant anger that I feel about the woes of the earth; I can't undo that and wouldn't want to. This anger that I am holding is very specifically about me. About being tired and depressed and unable to get what I need. Anger at specific people. A chronic sense of feeling thwarted and obstructed, of turning the corner and finding someone standing in my way, making my life harder than it should be. A paranoid sort of anger where I know that no one is trying to frustrate me, but I feel as if there was something deliberate or at least uncaring going on, some one knowingly causing me pain. So there was this thought that I should try to release this anger, let it go. Try instead to imagine the other's vantage point, consider that their annoying--or worse--behaviors are connected to some pain or sadness or difficulty of their own that I am unaware of. That for all of my own trials and tribulations, they may be, often are, suffering in ways that I know nothing about, but could try to imagine. It wasn't difficult to practice kindness at a poetry workshop. It's never hard to practice empathy when I am in a patient's home.

But this anger, this morning. It took me back to another place, another job, another computer. 1998. I was promised (at least I thought I was) a new computer, mine was driving me crazy with malfunctioning. I was overworking and feeling exactly the way I felt this morning, but every day, bleeding into nights, weekends, vacations. I was chronically depressed and having panic attacks. When I found out that I wouldn't be getting a new computer, I had an authentic psychotic break. The felt experience of kicking a door down and then pushing my boss to the floor and kicking her over and over again felt so real I later had to call a colleague to ask if I had actually committed this assault; I had not, but there it was, still is, inside of me somewhere. At that point I had an emotional breakdown and couldn't work for several months.

I'm thinking about the tractor beam. The one they used on Star Trek to pull another spaceship into their orbit and imprison it. This is what these sorts of experiences are about. The computer today triggered a failure of defenses ("our shields are down") that allowed my psyche to be trawled into the orbit of a past experience. I know this, I spent a lot of money and time and effort in therapy to understand when I am living in the past instead of in the present. But it doesn't always seem to stop the power of memory to enslave me to the past. The way that sliding backwards on the ice in my car this past Friday pulled me back under the truck that totalled my car last June.

It is particularly hard for me right now to encounter so much anger inside. For some years now, I have skated along in a peaceful, accepting, tolerant state. Something goes wrong, I think: no one is dying, it will work out. I lose something, I think: it's not lost, it's just not here anymore. I'm late for an appointment or someone cancels a date, I think: it can wait, I can adapt. I liked that person a lot more than I like this person who breaks down when things don't go her way. I know that I'm working too hard, making unreasonable demands of myself, not finding time to take care of myself in ways that allow that person to live and to work. I know that I foiled depression for 8 years, but it didn't really go away. I know what to do. The problem with being angry is it is a loud voice inside that says: I won't do what I should do just for spite.

This is why I say I need a new narrative. A new story about myself that carries me past this boulder that stands in my way, jeering at me, taunting me to stay angry and exhausted. I am the hand that is not reaching out to lift me.

Ice

2008-02-02T09:10:00.000-08:00

It's certainly a case of the februaries. Dark when I awaken, puffy grey skies above, overdried indoor air and moisture-laden outdoor fog, limited visibility all around. Then there is the rain-ice-rain-ice cycle we are enduring here along with news of weather-suffering all about--China to California.

I returned from my poetry workshop energized. Not sure if I have a publishable manuscript, but feeling more like a poet, less like a drudge. But where imagination is the currency and vehicle of the writer, weariness seems to be my coin, sliding on ice my transport. I can't invent time or place. I sit idly at the computer when I should be shoveling snow and spreading salt; cross-hatch the ice on my walk with a hoe when I long to put pen to paper; type novel-worthy notes about my patients into a inhuman electronic medical record when I would rather be sharing stories with one over a cup of coffee. This morning I couldn't drive down the ice-hill to attend the funeral of a beloved patient. Hugging her memory instead. Listening to music that warns me of how little time is left. Wanting to sleep, not being able to rest. Feeling out of control, like a car sliding backwards on ice down an embankment. Which is an image, but also an experience.

Water is dripping along the eaves. If I don't walk down the frozen dirt road in the next hour or so, I won't be able to rescue my car from ice-sloughs until another day. There are messages that I don't know how to read, tasks that I can't find the tools to perform, days that slip into frozen time, regrets--yes, regrets--that take my breath away and leave me trailing the crowd, panting out wordless messages to no one. I listen to lungs everyday, the crackles, the wheezes, the quiet sounds that are so treacherous, the collections of fluid that squeeze breath from lung tissue--pleural effusions, we call them. Effusions. Pouring forth. Ice-water-fog. Water in lung tissue. The sense of drowning inside. My patient--this woman that I loved, who reminded me in sweet ways of my mother, died of lung disease. But died peacefully, I am happy to report. Didn't die alone, I am glad to say. Died in a warm bed in her husband's arms. Still, I am sad and icy today. Both.

notes from a low point on the road

2008-01-24T17:01:00.000-08:00

(Will I write poetry
when I'm old
or am I already old?)

The old narrative
isn't holding, it's sliding.
Using a hoe
to crosshatch the ice.
Tacking foothold as I descend the slope.
Falling anyway. Bruised.
My thumb, ruddy tumescence.

Inner fatigue, anhedonia
Paresthesias. Surface irritability,
Meanspirited outbursts, easy tears.

Ah, but now I can't
drive backwards.
I'm so afraid that
in this story, my deep
becomes a shallow nothing.

no what ifs, please

2008-01-17T07:35:00.000-08:00

Sometimes I wonder (wistfully) what my life would have become if I had simply followed my creative instincts as a writer (or perhaps as an actor?) instead of becoming a nurse. A writer's life! A creative life? Would it have been a simpler life? More, or less, challenging? I doubt that. Certainly I have had enough personal experiences to draw on without becoming ensconced in the medical world which steals so many of my hours and energy units, while at the same time offering me a great deal of material to digest and regurgitate as my own. But even without that material, I sense that I may have written the same narratives, themes, issues that strike me as necessary because of my work life. I suppose it's too blended to separate at this juncture. And I must acknowlege that there are many writers who suceed at working in medicine and publishing their work in the same lifetime.

I became a nurse because of the callings of my own experiences, but also my need to see the effects of my work regularly. To feel like a contributor, even in a field that I truly believe takes more than it delivers. I believe that I have been creative within that field, at least to the best of my abilities. I suppose there are both obstacles to, and punishments for, creativity and self-expression within every life.

Well, a short meditation here. I'm off to a poetry workshop with a manuscript in hand. I'm giving poetry its due time for a few days. I'll let you know if I change my mind about anything while I'm there. As if I could change anything without changing everything.

a new narrative

2008-01-12T10:29:00.001-08:00

I'll concede at the outset that my sense of reality may be a bit skewed, or at least offbeat, but here is how I see it: We are the stories we believe about ourselves, the stories we tell about ourselves, the stories others tell about us. We are fictions breathed to life by words. To contrast myself somewhat with Susan Sontag, below, I will allow that I am a deist. In the first lines of Genesis we read how God's words created our world, but in the Gospel of Saint John, written some sophisticating centuries later (and not so long ago really, if we take the long view), there is this interpretation of Genesis:

In the beginning was the Word

The Word was with God

and the Word was God

In my own view, the greater sophistication (or intellectualizing) of the most recent millennium, that is to say Darwin and others, brings us the next, science-driven, reinterpretation (reincarnation): yet another fiction creating another fiction. As will we continue, ad infinitum, as far as we, as human, can see into the future, or see into death, or see into any other vista obscured by our human bodies and minds. At this time.

This week I listened to Terry Gross interview David Rieff on Fresh Air. Rieff, the son on Susan Sontag, has just published a memoir of his mother's dying, Swimming in a Sea of Death . Remarkably to me, this intellectual giant and lifelong atheist was terrified of dying, to the extent that her son was never able to have sober discourse with her about her death, the meaning of her life, her sense of triumph and regret, legacy and loss, last words or stories. She just wanted more life.

Sontag, the author of more than 17 volumes of essays, fiction, and plays--of which I have only read three--is best known, in my circles that is, for Illness as Metaphor and AIDS and its Metaphors. In Illness as Metaphor, she explains her mission to describe

... not what it is really like to emigrate to the kingdom of the ill and live there, but the punitive or sentimental fantasies concocted about that situation: not real geography, but stereotypes of national character. ... My point is that illness is not a metaphor, and that the most truthful way of regarding illness--and the healthiest way of being ill--is one most purified of, most resistant to, metaphoric thinking. ... It is toward an elucidation of those metaphors, and a liberation from them, that I dedicate this inquiry.

In the late 80's and into the 90s, when I was dealing every day with friends and patients with AIDS, when there were no real treatments for the virus, I found this book an essential balm for learning to deal with death. I was stunned, on re-reading these words, how much they betray my own need for literature and mythology. I understand how the entrenchment of enforced cultural metaphor in illness and death denies our human freedom. Our individual autonomy. But time has led me to want more, not less, metaphor; less, not more autonomy.

(Very incidentally, I was also stunned to learn on this interview that Sontag and Annie Leibovitz were lovers. Indeed, I may be the only lesbian who was living in the East Village in the 90s that did not know. Ah well.)

Sontag's son was stunned by her non-metaphoric battle against a third episode of cancer, this one remarkably unforgiving, as he was dismayed by her unwillingness to look death in the eye. In his memoir, he says:

Which was her right. I'm sure of that. What I'm far less sure of is whether I did the right thing in going along with and in fact doing what I could to abet her in her refusal to contemplate the prospect that this third time around she would die of her cancer. Looked at from a distance, this is probably just one variant of what you might call "the loved one's dilemma." The questions tumble out, in wakefulness and in dreams. At least, more than two years after her death, they continue to for me: Did I do the right thing? Could I have done more? Or proposed an alternative? Or been more supportive? Or forced the issue of death to the fore? Or concealed it better?

I was awed by Rieff's dedication to the work of helping his mother at the end of her life and the valor he displayed in his struggle to do right by her. His unflinching efforts to recognize what belonged to her and what belonged to him. To refuse to fictionalize the experience as he walked through it.

As circumstance would have it, I have this month returned to editing my poetry collection, The Conversion of Saint Jon, and re-investing energy in the goal of getting it published. I began writing these "Jon poems" seven years after his death in 1993, after reading his journals. I have diddled with them off and on over these many years, years during which my mother died and I began working as a hospice nurse and now a palliative care nurse practitioner. Today, I face death as I face life, a fiction that cannot be true, but cannot be false.

During his interview with Terry Gross, Rieff describes his experience of reading his mother's journals, which she had sold before her death, lightening and darkening his decision to read them, and to edit them for publication. He did not want to read her journals. He found it hard and painful. He had been offered no permission to read them, other than the prospect of their becoming public regardless, and so he thought, who better than me?

I had no permission to read Jon's journals. I took them for safekeeping against his family and held onto them for years before I began reading. I understand Rieff's powerful emotions at reading the personal, intimate musings of a profound mind. Jon's journals dated over 17 years and were full of venom and love, pain and reflection, isolation and anger, wisdom and suffering. Later, going through my mother's personal papers and communications, I felt the same complex remorse and pain, agonized over what to keep, what to share, what to discard.

At the end, my mother wanted more life, did not talk about her death, did not give me the satisfaction of final discourse. Jon also wanted more life. Although he practically thrust death into the mouths of his friends, he wouldn't, at the end, admit aloud that he was dying. He shut out his family and made ridiculous, paradoxical demand demands of his friends to burn him in the street and eat his flesh.

These days I spend time with those in the years close to death either talking openly about it or refraining to do so, according to their wishes. I might say to Rieff that in retrospect, it doesn't matter what you said or didn't say. The agony of pondering these questions is itself rich and worthwhile, but matters little at the event itself. I don't believe that we alter death's arrival or its garments by talking about it or neglecting to. I don't have any greater faith that my deathbed story will be any more saintly in its drama than any I have had the privelege to observe. We die in the image of our lives, are laid to rest bundled in the stories we have created while here. Without really knowing where here is.

And what does this have to do with my own "new narrative"? I don't know yet. But I promise to let you know, at least in my writings. There is much material to plow through to uncover it, and I am toiling as best I can. About death: at least I intend to keep talking about it. Whether you like it or not.

2008-01-02T19:38:00.001-08:00

2008

Though not inherently an optimist, I'm prone to think a new year may bring positive change. How do arbitrary thresholds hold such hope? Perhaps it doesn't matter, if indeed we ever get the opportunity to start over, we should grab it. Truth is, I don't know how to believe in beginnings or endings, since I have found little proof for either concept over the course of my little sojourn here. My days are saturated with relentless questions: Why me? Why this place? Why this life? Why now? Why not? I am torn between wanting to be worthy of the gift of this life and wanting to retreat into timeless indifference. I want to abdicate because it's all too hard, too painful, too exhausting. Yet I desperately want to cross the threshold somehow. I want gratefulness and generosity to win. For all of us.

I was reading A Thousand Splendid Suns as I crossed the threshold of 2008 on the east coast of the United States. But I was pulled into another world entirely, even as I lay in the safety of my own bed, knowing that I did not face the brutal terrors of living as a woman in Afghanistan over the past 30 years. Laila, the living protagonist returns to help rebuild Kabul after finding a brief island of safety for herself and her children in Pakistan, because it is the only thing that makes sense, the only thing that can redeem her past. I owe a special debt to Kabul myself, having birthed my son there in 1969, my son who is now a physician living safely with his wife and children in Miami; as Khaled Hosseini, also a physician, lives safely with his family in California.

This morning I awoke to a head soggy from crying and the urge to run towards danger, pulling a few bodies from the flames, getting singed if that is necessary, fleeing with throngs towards mercy, perhaps losing my arrogance in a stream of bitterness. I long to draw close to what redemption I can bear.

I want to be hopeful even when most of the time I can't. I also know that safety is a relative term. For all of us.

http://www.womenforafghanwomen.org/