Perhaps in no other time in the history of institutionalized healthcare have lives been so openly and brazenly bargained for money. I say this knowing that I might get a stiff response…and perhaps should evoke outrage….not so much because I wrote this in such absolute terms, but because it is painfully accurate. If I think of those around me, personally around me, whose concern for their health is trumped by their economic survival, the list would be long. Most of my close circle have insurance…but, who trusts that the insurance we have today will take care of us tomorrow?

I know that I wrote this in the Spring, about Jennifer James statement that the US would not have universal health care because we are so addicted to American exceptionalism. All of this being true, the reality is that if we have health insurance we are afraid to lose it (even if we don’t fully understand what “it” is). If we don’t have health insurance, we may con ourselves into thinking if worse comes to worse, something will work out.

And, then, there are the nurses. The bright-eyed, anxious to learn and serve nursing student graduates thrust into an industry that needs them and, subsequently, denies them the time and place to do what they are trained to do: to relieve suffering, assist in the restorative process that patients go through, and bring skill and compassion together. Oh, yes. I forgot. In 120-seconds or less.

I am hardly cynical. Just wanting to live in what I see in order to change it. The way in which we each prioritize our time tells more about our values than how we may spend money. The time we take to consider those we live with in their own distinct nature, the time we take to appreciate our good fortune to live in America (perhaps brought to bear in traveling to Asia once in a while), the time we take to really get a handle on the devastation visited on families by cancer, war, violence… It is just the mood I am in. To be awake to the miracles of each day and take stock of when and where I might make a small difference by noticing what is around me.

The study on how nurses spend their time was a wake up call to me. The question for me is how I spend my time… How do you spend your time? Going back to how I started this entry, bartering what is so meaningful to us, for what is demanded of us ,in a system that needs each of us, to be a stand for what matters…this is what causes burn out. And, what may deaden us to who we are and how much we matter.

Take time to smell the roses, or at least notice the roses that sprinkle us with petals and scents of humanity.

It is June. Graduation has already occurred for most Universities and High Schools. Even the Democrats have finally taken their final exams for their nominee. And, even the public is looking for higher education is energy policy, healthcare reform, and in how to resolve the world’s short opinion of how we are currently handling most things. And, it is still June.

I am most concerned these days about patients. About those whose options have narrowed down to none, when staying at home is not possible and being in the hospital is almost impossible. I am concerned about the rhetoric that addresses so much of what bugs us about the current way health care is dispursed and yet is so very far from the impossibility of being a patient.

For us in HHS, we have a small company. Our renewal for health insurance is being increased by 29% on August 1. None of us have had serious illnesses or serious chronic illnesses. No one smokes. and, we have no choice. No matter what, everyone will have health insurance as it is on the list of “must haves,’ like auto insurance. My Dad used to say “don’t turn on the ignitioin without insurance.” What is the equivalent for health insurance?

So, how do we resolve this? Jennifer James at a recent AONE conference said that universal healthcare was only remotely possible because of the current addiction to American exceptionalism, the belief that we, as the leaders of the free world, cannot possibly do what anyone else does, even if it works. What a shame. So many other countries are so much healthier than we are.

What I know now is that health insurance is a 30-day guarantee. Any master group, or group policy, can be cancelled or otherwise changed with 30 days notice. That is why premiums are paid monthly and not annually.

How does this make you feel? For me, it is more risk that I would like to bear. It is actually worse that the slot machine risk here in Reno. At least gambling is regulated and payout minimums are set in advance. Right now, the gamble on health insurance …well, it is game I would not opt for.

I have been a drama queen since I was child. “Susie, you are the next Sarah Bernhardt,” my mother would say, referring to the famous French actress. Bernhardt actually died 16 years after Florence Nightingale (in 1926) and little more than two decades before I was born. More important, however, that Susan-turned-Sarah became Florence Nightingale in efforts to bring Nightingale’s words to life, is a turn of events that I could not have predicted. More so, that Florence was, herself, a drama queen, raising sarcasm and pithiness to an art form, and so brilliant that hardly anyone could easily debate her, made each time I became Florence Nightingale an indescribable journey into the social justice struggles of the 19th century.

I think that Nightingale did, what most of us would want to do: see an intolerable situation and work to fix it or at least lessen the damage done. She took on the British aristocracy, challenging her predestined role of British Lady (seeing it as next to useless). She equally confronted the patriarchal medical system that she found to be responsible for more casualities than the war itself. It was the pitiful statistic of 41% mortality rate in the British Army hospitals that drew her into service.

The more I read and struggled to put together a cohesive story, the more I dreamt about her. I could feel her anger and impatience. I could feel her frustration with the complacency of the monied public and the entangled bureaucracy that made change near impossible. I further understood her intolerance for what she considered to be inexcusable neglect of the poor and ill. At the same time, I could understand and sympathize with the men who could not really deal with her. She was a feminist, an activist who felt that the rich had responsibilities to those in need and those in power had a greater obligation to the powerless. She had no intention of being easy to get along with or compromising any more than she had to as she felt that each time she did, someone would die. Those were the stakes in front of her.

Now, in all fairness, I, too, can be self-righteous about my own sense of social justice, I have my own skills in sarcasm, and I am passionate about my work. So, my playing Nightingale was poetic. If for only what I see now and my own views, it is easy for me to speak through her about the absurdity of a stiff and unyielding medical system playing out in human suffering. More so, I am such a failure at memorizing anything, that I had to know her work and words well enough to speak them, not just repeat them. Rote was not going to work. I had to know her so well that each time she told her story through me, it would have normal variations and be meaningful to those who were in the room.

Had she been with us on the this Memorial Day, she would have ranted about the Veteran’s being homeless, about the limits…any limits…to medical care for Veteran’s, leaving many uninsured in later life when their health was threatened because of serving their country in their youth. She would have been aghast looking at the profit-making insurance companies that are set up by their very nature, to deny healthcare when it is most needed. More importantly however, as a statistician and researcher, she would stand head to head with the best of the opposition in demanding preventative care as the only sane way to heal patients and the system that cares for them.

In putting together the starting script to tell her whole story, from childhood until death, I read many books and articles about her and writings by her. When I began, in truth, I knew little about her. I knew only that she was the most famous nurse, the icon of all nursing. I now know that she was so much more and that nursing is so much more.

I am a nursing advocate. Although I have been a musician for more years than I would like to admit, I identify most with nurses, with the work, the frustration, and their unending right to acknowledgment and support. It is the latter that I feel is lacking in the culture, in the communities, and within healthcare. From its earliest unofficial beginnings, nursing was perceived as unskilled and dispensable to the patient. Nightingale spent her life building a professional structure around nursing that would include research, administrative and organizational efficiency, an ethical practice based on data, and a skill set that would save lives. She set aside issues that she felt were distractions, such as public opinion and social niceties. People were dying and all these other issues were of no value to her.

Nothing in anything I have read says that she was nice, sweet, kind, easy to get along with. In fact, I am guessing she was a handful to deal with, that whenever she walked into a meeting the men around her (since they were almost all men) would shiver. She was described as more educated than most of the men she worked with. She spoke five languages, was a master statistician, and used her social position to move her ideas forward. In my reading of her, I found her concerns were so focussed on her work that she was not willing to be distracted by social niceties, a trait that her mother and sister took issue with.

On the strong shoulders of my dear Florence Nightingale and the many women who preceded me, I have the right to be a Nightingale. I have the right to stand up and act on what I believe to be right. However, with that right comes responsibility. That is what Nightingale represents: rights coupled with responsibilities represented in action.

Every time we present Florence Nightingale: In Her Own Words, I have the opportunity to again revisit Florence Nightingale, to relive her childhood, her frustrations and determination, and her heroism. I get to act indifferent to criticism and defiant; I get to be the relentless advocate for those who suffer and express righteous indignation in the face of incompetence, even if it was caused by ignorance.

In her last words, when she begins ” In the future, which I shall not see, for I am old…” I well up with tears, knowing that I am living in the future that Nightingale never saw, but one she held in hope and possibility.

Let me know what comes up for you in listening to her story on the podcasts we have made available. The world greatly benefits from all the Nightingales who are now standing and caring for those who suffer..defiant, determined, and destined in ways unstoppable.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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