Tuesday, January 13, 2009

The Art of Illness

I was driving down the road yesterday listening to an interview with Norman Cousins about how to take advantage of the body's own apothecary and heal oneself with love, laughter and hope.

A few nights ago, I watched Barbara Walters interview Patrick Swayze about living with Pancreatic Cancer.

A year ago this month, I lost one of my best friends to chronic rejection after she fought harder than I ever dreamed possible.

And because of all of these things, today I am immobile with grief and a sense of overwhelm.

From the moment we enter this world, we are taught to put all of life into one of two categories.

"Do you like this color or do you not like this color?"
"Do you like sports or art?"
"Are you a democrat or a republican?"

We define ourselves and our lives with black and white answers to simple questions. Illness is not so different.

"Are you sick or healthy?"
"Are you a fighter or are you giving up?"
"Are you living or dying?"

As I continue to explore the feelings and experiences of those who face illness (myself included) I sometimes find myself in a place of conflict, confusion and sadness. It was not until the convergence of the Norman Cousin and Patrick Swayze interviews, along with the anniversary of my friend's death, that these emotions came into focus for me.

I can not place my illness inside of your black and white boxes anymore. I can not continue to live by the limited labels you have assigned to me. I can not find peace in the contradictions until I have permission to believe everything at once. I have to live consciously and continue to walk the lines between acceptance and outrage. I must pull myself out from under your judgments and begin to live with this body as it fits the moment.

Draw Your Own Conclusions

During the Norman Cousins interview, he sited two significant studies about the power of the mind over illness. The first of the studies involved about 100 medical students, some of whom were given a barbiturate and some who were given a amphetamine. The trick, of course, was that the students were told the pill was the opposite of its true chemical compound--so the people getting stimulants were really getting downers and vise versa. 50% of the students reacted in line with the expectation, not the chemical reality of the pill.

The second study he sited was a true placebo study in which patients were told the medication they were ingesting would make their hair fall out. The pill itself was actually a sugar pill and 50% of those studied experienced significant hair loss.

The conclusion Norman Cousins made in this interview was that each study "proves the mind is more powerful than medication." Is that true? Is that what the studies prove? From where I sit it proves that for half of a given population the mind is more powerful than the medication. It also proves that for half of a given population, medication is more powerful than the mind.

As a patient, when I hear this Harvard Educated professional make such a strong case for why we have so much control over our own bodies, I feel both inspired and overwhelmed. I feel empowered and burdened with responsibility.

Do I have a choice of which half of the population I will find myself? Will I align myself with the reality or the expectation? Do I have the energy to heal myself or is that even in my power?
In what parts of my life have I allowed the diagnosis to guide my expectations instead of rising above statistics and believing in my own power?

The Illness Cowboy

When I was watching Patrick Swayze talk about living with pancreatic cancer, I saw someone who was angry and sad about his illness. He stood on platitudes like, "I'm going to beat this thing" and "just watch, I'll be here in years to come." I found myself tearing up at the pain I was witnessing. I also was yelling at the screen, as if to will him through the television to stop the "act" and find peace with what we all know to be his inevitable outcome.

Having found truest peace in the soft bed of acceptance, I often pity those who run from its comfort. For me, acceptance is the path to peace. When I watched Patrick Swayze I saw a man denying his truth and apporaching the illness like a John Wayne charater--the Illness Cowboy. The human will is an amazing thing, no doubt it is what has contributed to him living so far past his diagnosis.

That said, when is it time to stop galloping in the opposite direction, get off of the horse and call a truce with illness and even death? When is the fight an act of cowardice and when in surrender the truest sign of bravery?

Western Omlet

Western medicine is in the business of black and white. Those who practice it usually live by statistics, research and physical clues. The job of the doctor is to speak and act in definates.

"You have cancer."
"There is nothing wrong with you--You're physical problems are all in your head."
"You have six months to live."
"You will be just fine."

As someone who has lived through the pain and confusion of a terminal mis-diagnosis, I know the power of gray posing as black and white. But it's what we want, isn't it?

We have all heard the stories, we know the legends. A patient with cancer baffles the doctors with a miraculous recovery. A patient diagnosed with acid reflux is discharged only to have a fatal heart attack hours after leaving the hospital. The list goes on and on, right? If you are looking for a story about doctors being wrong, you do not have to look very far.

The same could be said about the stories of doctors being right. Why do you think the show "House" is so popular? Because we love to watch the unexplainable be explained. We love the mysteries of the body to be revealed by the smart, dedicated and highly educated physician. We love to feel safe in knowing there are answers when we are most vulnerbale to the unknown.

The truth is, however, that sometimes the clear proclamations of healthcare profesionals are guesses. Sometimes, they are basing the information on statistics which, in the end, will mirror little of your individual experience. Sometimes, the result would have been the same whether you sought treatment or not. Sometimes, western medicine will be the difference between life and death.

Because we can not live two parallel lives making different choices in each, we will never know what would've happened if we had decided to choose a different path.

Just Because You Fight Does Not Mean You "Win"

I believe in the power of the will to live. More spcifically, I believed in the power of my friend Ruth's will to live. She was sick, we all knew she was. She never hid the fact that she had chronic rejection and often sent out emails to let friends and family know the latest update on her health. Every email ended on a positive note and she never gave in. I suppose I followed her lead, focused on the last sentence in the email and assumed her health would somehow stabilize.

The month before she died, Ruth finished two graduate classes (both with an A), went to work every day and found time for those of us who needed her. As sick as she was, her death was a shock. Why? Because her fight was so strong, it was blinding. Later, when I went back and read all of her emails, I saw that she was telling us the truth all along, I just couldn't quite see it through all the living she was doing. Each email was a little worse than the last; her lung function was dropping, the procedure did not seem to work, she was not responding to the new treatment, they were running out of options. It was all there in black and white but her aliveness did not allow me to put her in a balck and white box. She was living and dying; something few of us have a context for.

Ruth taught me so many things. I never want to boil her life down to one accomplishment or one legacy. She, in herself, deserves an entire book and at least one movie. But one of the greatest lessons I learned from Ruth is what nags at me when I listen to people like Norman Cousins. Sometimes, we can do everything right; we can have all of the passion and purpose in the world and we can fight like hell but our mind will not "win" over our body. Sometimes, when we want to live more than anything, it is still our time to die.

Is there someone out there who would tell me Ruth could have fought harder, changed her fate with a meditation, a way of life? Is there a doctor some where, some place that could have done something differently? When it's "our time" is there anything that can be done? Can fate be manipulated?

What I Know Now

What I know now is that I know, for sure, very little. I know that I have conflicting beliefs and that is very uncomfortable. I know that I want black and white answers but need to begin to train my brain to accept competing thoughts as simultaneous truths.

I know that I believe in the power of my own thoughts, beliefs and emotions. I know that they can and do impact my physical health.

I know that Western Medicine is flawed and does not always support me as a whole, sentient being. I also know that it has saved my life and given me more tomorrows than I ever imagined possible.

I know that I believe in finding peace through accpeting what fate has given you. I also don't know when I am accpeting fate and when I am accepting a mere story that will serve to help me shape my fate, even if that was not the only possible outcome.

I know that sometimes I am inspired by the idea of having power over my body. I know that sometimes, I am powerless but feel guilty because others tell me I can be stronger, better, more in control.

I know that sometimes our will to live will bring us far beyond any expectations. I also know that sometimes the body gives out, no matter how passionate we are about living.

It has been a relief and a revelation for me to realize that I walk around with thousands of conflicting beliefs about illness and one's power over it. I know that I must now begin to trust myself to use what I can to live well, to know when bravery means surrender and to never project myself onto others living with illness.

There are so many people out there who have all the answers to life with illness. I used to think I had to choose one of those answers and live by it, refuting all other approaches. What I know know is that they are all true and they are all false, it simply depends on where you stand in the illness journey.

I won't promise to stop trying to make sense out of living with illness. After all, that is what makes me appreciate what it means to be a part of the Sick World. What I will promise is that I will stop beating myself up for not "being stronger in my convictions" and understand that all approached can simultaneously exist.

I now know that there is an Art to Illness. The Art of Illness is being conscious of where you are emotionally and physically, gathering advice and inspiration from others and using what works when it works. Today may be the day for the battle, tomorrow may be the day for quiet rest and there may come a day for peacefully acceptance of life's permanent changes. The key is not getting attached to any approach, honoring them all and always making self-compassion the focus.

Like writing a song or putting paint to canvas, we can never know the beauty we are creating in this moment. When it is done out of integrity and respect for the authentic self, however, the beauty is inevitable. It's time to say goodbye to black and white living and embrace the ever fluid, always forgiving, Art of Illness.


Midlife Midwife said...

I'm still learning the art of medicine. What a beautiful and thought provoking post. I have never thought about the art of illness. What a wonderful and poignant idea.

Em said...

You are so lucky to have had a friend like Ruth. She sounds like a beautiful person.