And Still With No Solid Plan

This weekend I attended the INELDA End of Life Doula training class in Raleigh. When I signed up I did so because I just felt like it was a thing I needed to do, without a real firm grasp of why or how. I still don't have a firm grasp on the plan...and I am going to just let that be OK for now. I did come away with a deeper feeling of commitment to the dying - and I really hadn't thought that possible. Some people seemed to be walking away with an almost evangelical commitment to this work as a life's calling. I didn't get that spiritual high, but then I can be very pragmatic and skeptical. And, too, many of those expressing commitment with evangelical fervor have less experience in death and dying. For me, this isn't like a new revelation. It's more of a no-brainer. As Susan said "All roads led you here." Although I feel like the work of an End of Life doula is in the first place of extreme importance and in the second something I can easily see myself doing, I still have the many unanswered questions of a natural born skeptic. What about my nursing license? How does the insurance work if you have that license? How can I appropriately balance the "mandatory reporter" nurse side with the "doula: keeper of confessions" side? Which one takes precedence? And on and on and on.

I am a nurse, both by profession in my current iteration and by "calling", for lack of a better word. I feel very strongly about death (and birth, as those who've known me a long time can attest). The excessive medicalization of the two greatest transitions in our existence on this sphere has disturbed me since I came to understand that they were taken from us by the (allegedly well-intentioned, but let's be real - today it's about the money) western medical model. The discovery that this thing had been taken away without any solid reasoning beyond convenience and profit bothered me. It seemed to me, growing up, that both birth and death were extremely natural processes that only quite rarely became complicated enough to require some kind of intervention - and yet we willingly handed them over with a quick brow swipe and a "thank God that's all out of MY hands!" Women drugged into pseudo contentment, feet high up in the air, blue-tinged babies dragged out of dope-lazy birth canals - or worse, women cut open like sides of beef when their labor didn't progress according to the narrow statistical "curve" model created by some sexist, meddling quack named Freidman...grandma dying "peacefully" medicated (or so we are assured by the staff who were probably in another room when it happened) in a nursing home bed while the kids and grandkids were at work and school.

Gone the natural progression of our lives from birth to death, gone the sounds and smells of birth and death in our homes, gone the bedside sitting at both labors, gone the intimacy, the proximity, the depth of these most sacred of passages. Instead most of us continue to cling to the "shallow and complex" life afforded by that dubious miracle that is modern western medicine. Let someone else do it. It's too hard, too scary, too painful. Give me drugs, just get it over with. But research begins to show that our removal from these most basic nitty-gritty beginnings and endings (on both counts) is actually less healthy for us than the relative trauma of intimate participation. Some of us feel that in our bones, and know the trade off isn't worth the loss of intimacy, of selflessness, of the most painful and yet most beautiful expressions of love that occur in those spaces.

The death of simple and deep. We are trading out the painful reality of human existence for this artificial alternative that allows us to remain "above all that", allows us to move forward lacking awareness (of self or of others), avoiding pain, running from reality. Abandoning the people who love us at the very moment when they most need us. Abandoning ourselves.

I am idealistic. But at my core very, very simple. Why is there injustice? Because we have allowed ourselves to fall prey to propaganda spin, turning "us" against "them", produced by a bunch of white men in suits who have no interest in our awakening to the truth that there is no "them", there is only us, thereby lining their pockets with our blindness. Why is the food killing us? Because we got over-involved with some magic chemical voodoo to "fix" food, resulting in processed crap that destroys our bodies, with a huge shift in the macronutrient percentages we have successfully eaten for 50,000 years. Why is birth so hard? Because we allowed more magical modern voodoo to bring us these trojan horse gifts that transform the majority of births into a loss of feminine power and a destruction of immediate bonding with newborns. Why is death so scary and taboo? Because we gave grandma to the hospital or the nursing home to "protect" ourselves and our children, so now grandma doesn't die in the living room, cared for lovingly by her deeply exhausted family, thereby depriving us of the experience of the good death.

Don't get me wrong. I am GRATEFUL for much of what we have. I am glad that, after 36-48 hours of protracted naturally initiated labor, there is an OR. I am grateful that there are places we can turn to when our loved one, dying at home, becomes terminally agitated in a way that we cannot control. I am less grateful for white men in suits and Monsanto, but that's another tale for another day. I am glad that WHEN THERE IS REAL NEED there is help at the ready.

But the decisions about when and how to intervene...those are much more complicated. How is it that a patient can spend some number of hundreds of days in a hospital bed, have innumerable procedures performed on them, each time with no explanation to the family that the patient will not regain function, will not improve, will never speak, will never swallow...the only reason is a padded bottom line. Otherwise the compassionate thing, the morally right thing, would be to sit down with that family and tell them the truth - she/he has had a massive stroke/horrible heart attack/whatever it was that put you here. She/he will not have any sort of meaningful recovery. She/he will not speak again, will not be able to communicate, will continue to decline. There is nothing we can do, and the best hope we CAN offer you is hospice at home, or transfer to a long term care facility that can support you through her/his end of life process. Her/his death. It isn't a dirty word.

I suppose the dirtying of the words birth and death goes back to that so very American puritanical prudery and skewed religiosity so particular to us here. Birth means someone got pregnant, and if someone got pregnant, someone probably had sex. And sex, like death, is a thing we both obsess over, desperately want, and despise at the same time. Death means someone is dying, and what if the Christians are right and he/she goes to hell, but what if nothing happens and it's all for nought (untrue - even if there is no heaven and no hell, there is still the NOW, and the NOW matters so very deeply because we are all so connected...but I digress), and how do I feel about the ending of life and so on and so on - again simultaneously obsessed with and fascinated by, yet terrified of and repulsed by. Plus there is decay and odor, and grandma might soil herself and someone might have to clean it up.

There I go ranting again.

My point here, today, is this - I still have no solid plan. I came away with a lot of good information. I feel like the independent "hanging a shingle" death doula track may not be right for my anti-social self. Most people seem very able to give elevator speeches and "reach out" to the community with death cafes and stuff - like Norwex parties only for death education...how do you keep that from becoming self-promotion? I simultaneously like and am concerned about that idea of the death cafe. I am pretty sure half the people in the room can give the first names of their table mates. I only remember 3. Faces I remember, but not names. It was sort of like work, really. Are you dying? Yes? OK. You definitely have a name, and I will remember it, and use it. Are you the immediate support? Yes? Good. I will probably remember your name, and will use it after asking you if it's ok and confirming what your loved one prefers to be called. Are you an administrator? Yeah. I'll get back to you on that whole name thing later, maybe in a year or so. All this "networking" nonsense? Nobody networked 50,000 years ago and people still died and got born attended by invisible people mostly lost to history. As it should be. Handing out of business cards, "making connections"...really? Are we entrepreneurs selling ourselves, or are we servants called to care for the dying and their families? I lose it in there somewhere. I'm here to serve, not sell. But first I need to take the first step. Whatever that looks like. I just still have no plan.

It's Natural

I think I miss my father most when I wipe my ass. He was the only other human being I ever knew who would willingly and openly admit how hard it is to get it all. We would moan about this topic the way frustrated housewives bitch about muddy footprints. He came by this earthiness honestly. My paternal grandmother farted in front of me regularly, and when I got old enough to tell her to "say excuse me", she reprimanded me, saying that God put the air in and intended for it to come out - no apology necessary. I tried this at home. My mother was not nearly as accommodating of the almighty as GW was. "Hold it in" was her motto on most topics. It was never mine.

I've always been fascinated by and drawn to the functioning of the human body and the human mind. Interruptions aside, I probably would have been a doctor of something. But life wins in the end, and who we are isn't about the degrees we hold, it's about the cumulative experience, how we allow it to teach us, how we open ourselves up to and meet the act of living.

INELDA End of Life Doula training class is coming up, and in the initial pre-class work we are introduced to the idea of the End of Life Doula, the various activities an EOL doula may perform, the ways in which an EOL doula can facilitate conversations and communication between family members with the dying person. We were asked to think of the death of someone near to us and reflect on how that death was - what could have been different, what sort of conversations could and should have taken place, how the wishes of the dying person were accommodated. I think the biggest gap for me at Dad's end of life is in the idea of legacy. He wanted very much to talk about it, and we tried, but I lacked the language and the skills to give him an outlet for that. I regret this deeply. The instructor talks about having made an audio recording about 40 minutes in length where he asked his father things he had never dared or thought to ask before. It was some months before he could listen to this legacy journey, and when he did he found it immensely healing -it brought his father back to him in a real and powerful way. I wish I had done this. I have two or three short recordings, not conversations, but clips culled from my answering machine - my favorite being my final birthday message, left for me a mere 14 days before he died. It was that important to him - sleeping 18-20 hours a day, barely awake when he was awake, calling me to say happy birthday was a priority. I know that feeling - more intensely in the last couple of years when that greeting of a loved one has been thwarted by estrangement - but I digress.

This class will open up new pathways into the end of life experience for me. I have no idea where it will lead. I intend to become certified, which will require a minimum of three willing volunteer families who allow me into their space at an unbelievably delicate and precious time. Navigating the challenge of having clinical nursing skills that MUST BE set aside will be new. Being present, active listening, facilitating communication, holding space - all of those things are the things that I so very desperately long to do with my patients now, and most of the time cannot because time ties my hands behind my back and Medicare holds me hostage to an iPad. (The irony of this apparent skill is that if you are not dying, I will rattle on, ignore your thoughts and feelings, and generally be the biggest personality in the room wherever possible. But if you are dying or birthing it becomes the one space where I am easily able to lay myself down. I wish I knew why. Anyway.)  I look forward to that part of this work. I am looking forward to discovering new ways to give meaning to legacy, and hope I can be of value to someone who struggles with that. It will honor that man, who sat in that chair, pointed at me and said to his home hospice nurse "...she's goooood...." to which she replied "Yes, she is. She really needs to come work with us."

How very right they were. And how very hard I resisted. But in my life the times at which I have felt the most present, the times at which I have felt the most comfortable and connected, I was either attending a birth or attending someone and their support system at end of life. You can run, and you can run faster, but in the end you cannot hide. What I am, I am. And what I am is a death professional. Whatever form that takes.

(don't worry - soon we will talk about knitting or quilting or something, I promise!)