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???

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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.

It's that time again!

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

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

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

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

A palliative care blogger's thanksgiving. Here.

Palliative Care Grand Rounds: October 2009

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

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

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.

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

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