>Grand rounds are here again, this month hosted by Jared Porter at Alive Hospice Blog.
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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.
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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???
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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.
>Another great-grand Palliative Care Grand Rounds, this one hosted by our fearless leader, Christian Sinclair, over at Pallimed.
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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.
>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.
>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.
>Geripal– A Geriatrics and Palliative Care Blog hosted Palliative Grand Rounds this month. Check it out, it showcases some really great blog posts!
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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.
Risa Denenberg 