Thursday, March 19, 2015

Hospital Anarchy

Anarchy has a bad name. This is because violent political movements engaging in anti-social behaviors have adopted and corrupted the term, primarily. For this and other reasons, I avoid labels for people, including myself; there are many connotations, contortions and convolutions under any ideological or behavioral umbrella, and the terms become meaningless or misconstrued. The words themselves can have meaning in the abstract, and to that point I quote the Merriam Webster Dictionary Online definition of an anarchist as "a person who rebels against any authority, established order, or ruling power."1 

As I stated above, I try not to apply labels to individuals. Nonetheless, that's a pretty good descriptor for me. I admit it: I have a problem with authority. I always have. Any authority that is not based on purely cooperative, non-coercive dynamics faces a lot of hurdles to gain my acceptance. I could go on and on about where that applies and how far it goes, but that isn't my point here, today. Writing about big philosophical constructs gets unwieldy and impersonal, and there are enough folks out there in the blogosphere taking on those projects.

My purpose here is to talk about what happens when a person who intuitively rejects authority (yeah, yeah, okay, even viscerally and irrationally, at times:)) chooses to submit to the soft tyranny of doctors, hospitals, and the mainstream medical system.

I'm sorry, I could not resist. Clearly.
When the doctor told me that I had leukemia, and that I should check into the hospital immediately for chemotherapy, I wasn't ready to hear all that. Who would be? In so much of life, but particularly within the allopathic paradigm, the default position seems to be "There's NO TIME! We must act NOW!" Fortunately, I was ready for that. A friend who left the nursing profession many years ago had given me a mantra: "There is time. There is always time." I might not have been ready for the news, but I had that tool, and I used it. I told the doctor the truth: I wasn't ready to commit to conventional treatment. I needed to think about my options. I needed Time. While I could tell he was not completely comfortable with that response, he respected it. He respected me.

In a field where so many oncologists might say there isn't time, that I am wrong and foolish and risking my life, Dr. Roger Inhorn did the best, maybe the only thing, that could have set me on my best path: he honored my need for time. When I called him in tears one night and said I did not want to check in the next morning, he said okay. He said that he did not want me to go through any treatment that I wasn't comfortable with. He did not rely on his assumed authority. There I was, an anti-authoritarian with nothing to push against:)

Some people like to be told what to do. I have observed this. I have also observed that many people do NOT like to be told what to do. I don't know which is the majority.

(Permit me to digress for a moment. Remember the blue dress with the black trim, or the white dress with the gold trim?
If you missed the blue dress brouhaha, I refer you to this story Blue Dress. On the internet, arguments raged about what the dress looked like, and then arguments raged about whether anyone should care about what the dress looked like, and then arguments raged about self-righteous posing and taste arbitration, and then...well, anyway.

Me, I loved the blue dress debate. I saw the dress as white and gold, because my brain made assumptions and adjusted the image. Other people saw something else because their brains made different assumptions. The necessary information appeared to be in the picture, but it was not. Who has not been frustrated at another person's erroneous insistence on something that they know to be otherwise? But wait, do they? Is it possible that there are some things we cannot know to be true or untrue, because the filters through which we process the data are fundamental, axiomatic, and, for us, essential and true? The dress is about the importance, and malleability, of perception.)

What inspired this digression, you might ask. I do not like to be told what to do. I do not like it so fundamentally, at the kernel of my being, that I could readily believe that no one likes being told what to do. How easy it would be to be like the protagonist in Vonnegut's "Player Piano," evangelically confident that, if only people could be shown the way out, they would take it! 
Some people do like being told what to do, though. They like the security, they feel more comfortable, they appreciate the rules. For me to assume that everyone wants what I want in life, or operates from the same principles, or should, is arrogant and aggressive. So I don't. For some reason, the blue dress illustrated this for me where my prior analyses had failed.

The week I didn't go to the hospital, I pored over websites and research reports, peppered health forums with questions, paced around, and pulled my hair out. What I discovered was that, if I wanted to try to heal myself from AML without pharmaceuticals, I was going to have to go it alone, because I could not find anyone, anywhere, who had done it. I felt terrible. I had a very young child and an infant, and a husband working full time outside of the home. I did not want to go it alone. I wanted someone to hold my hand and run the show. I wanted to surrender, to submit to someone else's authority.
And so I did.

That is the most important element to the story. I chose to undergo treatment, and take the doctors' advice, intentionally and with consideration for what it meant to me emotionally, physically and intellectually to do so. Coercive force generates an opposite emotional reaction, I find - pushing against, bullying, forbidding, and generally giving a behavior or attitude huge amounts of psychic power seems to beget more of it. Nothing seems to be more effective at making something potent, dangerous, and pervasive than declaring war on it. Consent and compassion have the opposite effect, I've found; they encourage cooperation and partnership and positive outcomes.

Since I already knew that the doctors weren't magic, and that they weren't in control of the outcome, and I chose in handing myself over to their care to accept that I wasn't in control of the outcome, I found myself free to live with the uncertainty, or perhaps with the certainty of lack of control. Questioning authority is essential to critical thinking and examined living, but questioning ourselves on our own assumptions is equally important. We must not allow an internal tyrant to arise, preventing us from finding the peaceful path of accepting life's vagaries and lack of absolutes.

Without the power struggle, I am able to be a participant, and occasionally a dissident, in my doctors' care plan, baggage-free. My transplant team is stiffer than my oncology team, and they have to be, but I roll with it, and roll my eyes when I have to. I have broken the rules, I won't deny it. I have made educated decisions about diet and medication that contradict their edicts. My doctors and nurses know I don't do anything just because I'm told to; they know I need useful facts and that I am going to make my own decisions. For my part, I assume we are in this together, as allies. An adversarial and combative attitude with anyone is the best way not to make my case accessible and appealing to that person.

So what happens to an anarchist in the hospital? She becomes a better anarchist:) She becomes more aware of her filters. She becomes better able to trust the parts of her that allow others to help, and permits them to be right; better able to hear the internal chorus and pick which voices to amplify, and re-examine her convictions. She sees that asking for help, and receiving help, is not weakness.

Well how about that? This post is about being a parent, too:)

Tuesday, March 10, 2015

Where Were You Then?

I am working on a book. It is a memoir, of sorts, and it begins some time in 2010. To write a book, one needs an outline. Well, if one is me, one needs an outline. To write an outline, I need to know what my point is, and what I want to use to build that point.

Perhaps I have mentioned that I am not good at getting to the point?

Look! It's a Christmas Unamog! What were we talking about?
Another problem is that I don't have a huge amount of time for writing. There are these little people, and my job is helping them make the world their own, and I take that pretty seriously. Right now they are giggling hysterically in the other room and whenever I go in there they look at me funny, so I figured I would mind my own business and do a little writing. 

The other day, I went for a walk and I took a picture inside this old stump. It's rare to see the inside of a tree this way, with nothing left of its history except the most recent years. I have been alive for all the time that this tree documents. What have I been doing with it?

I gave myself an exercise, to try to find a way to figure out what is supposed to be in this book. I want to give this exercise to you, because it's amazing.

Pick a moment in your past right before a major event in your life. Maybe it is a joyful experience, maybe it is a trauma, maybe it is both. Joy and true happiness are deep, sublime things. They are awesome. They contain darkness, but are triumphant with light. Like the pain of childbirth, the pain and suffering are easy to forget, to diminish in our memory, when we have turned everything to light. While this is wonderful for survival, it can enable us to minimize our own power and experience as easy, manageable, since we have managed it, after all.

Give your past, especially the painful parts, an opportunity to be big and proud. Let the light shine on it. Pick that point, and start a timeline. Be very diligent about keeping it chronological. Go back in time, to each of the moments between then and now, and write whatever comes into your mind. Allow yourself to feel how you felt, to be in your mind before the liminal events, during them, after them. Give all those moments their due. Expand them, explore them, find any grieving, any forgiving, any pleasure, any grace that you have forgotten.

You have everything you need.

Saturday, March 7, 2015

How Could I Forget A Love Song?

How could I forget a love song, the love song, for the last post? Here it is.

Friday, March 6, 2015

Flying Dreams

John dreams about flying. The closest he got as a child was a glider ride. For a while he was a skier. In college, he got into skydiving. Also there was surfing. Then he took up sailing. Now he is excited about planes, building a flight simulator computer and listening to flying podcasts and studying to get his pilot's license. He is a craftsman, an engineer, an intellectual and an artist. He is a father.

He is a husband.

We fell in love because of music, whiskey, and absurdity. We stayed together because the other person was the better person, the wiser person, the cooler person, the person who makes us who we want to be.

I remember crying one morning, fifteen years ago, because I love him so much. I didn't know my heart could hold so much. Two children later, I am still finding room.

What do we sign up for in a relationship? Do we acknowledge the work of love, the difference between a parallel path and one entwined?

There was a time when he was very depressed, at sea in the transition between a world constructed of other people's promises and the life we create for ourselves, when he was selling coffee or cameras, and I carried him. I asked myself, am I staying because I have to, or because I choose to? Do I need this, or do I want it? When I had the answers, I knew I could marry him. And so I did. 

Then I was depressed, in a job I hated, knowing what I needed to do and not sure what would happen to my life if I did it. He carried me. 

When I was lost in the dark, and couldn't see the path forward, when Wallace was little and there was no money and no work, all I could do was trust, white-knuckled, teeth-clenching trust. And he was right, like he always is. Everything was okay.

The first night Lysander had to sleep without me, without nursing, John held him, fed him from a bottle the milk a friend had donated. There wasn't enough. Everyone was hungry, tired, scared. I didn't know.

The first weekend I was in the hospital, one of John's best friends came to stay with him, to play guitar with him and hold him while I he cried. I didn't know.

I said I wanted to sail the boat to North Carolina. He said "okay." I said I wanted to turn around and go home. He said, "okay."

One afternoon I awoke in a bed in Mercy Hospital, my lungs full of fluid, so weak I could hardly walk and so sick I could barely find myself, and he was there, sitting at the foot of the bed, reading a book. I cried then, too.

In the forty days I was in the hospital in Boston, he repaired, repainted, re-organized, deep-cleaned, discarded, and generally overhauled our home. All I had to do was stay alive.

When I didn't want to be touched, when I wondered if I would ever want anyone to touch me again, he waited, as near and as far as I needed him to be.

Being the caregiver seems much harder than being the patient. The patient has to do the work of illness, but the caregiver has to watch the work of illness and feel powerless.

This morning it was negative two degrees Fahrenheit, and he left for the site, over an hour away, to stand on a hill in the wind and raise a frame. There was a winter when he would drive an hour every morning, pilot a Whaler through the frozen spray of Casco Bay to shovel off a roof, and then spend the day standing on it and working. He does this for us, for me, for the kids, and for his dreams. Dreams of flying, of winters in the tropics, of warm oceans.

Sometimes his wings are curled around me. Sometimes they carry me at thirty thousand feet. Sometimes we are just skimming the ground. Always, he has had them. This is for the man who can fly, the steady hand on the tiller, the reader of wind.