risa's pieces
Monday, February 11, 2013
what we owe each other
Sunday, February 13, 2011
Thursday, August 26, 2010
Closing Up Shop
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.
Tuesday, August 3, 2010
Planning to Die
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.
Tuesday, July 13, 2010
Harvey Pekar died this morning
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.
Monday, April 26, 2010
Some data from the Washington State Death with Dignity Act
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.
Friday, March 26, 2010
Post-Death
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.
Sunday, March 21, 2010
Where things stand
Sunday, February 7, 2010
It's that time again!
Thursday, January 28, 2010
When work gets in the way
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.
Saturday, January 23, 2010
Still blogging
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.
Thursday, January 7, 2010
It's that time again!
Saturday, December 19, 2009
On my reading list
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.
Wednesday, December 2, 2009
Another grand, grand rounds
Sunday, November 29, 2009
News—bad or good, depending on how I choose to view it
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.
Wednesday, November 25, 2009
Monday, October 12, 2009
Palliative Care Grand Rounds: October 2009
Saturday, September 26, 2009
kol nidre
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.
Monday, September 21, 2009
Seattle Air
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.