“I don’t know why I keep dropping things. Maybe it’s my condition.”
I had a hospice patient once who fascinated me with her lack of desire to know about her illness, a neurodegenerative disease that was stealing her muscle control bit by bit. When I visited each week, she would point out new things she was noticing: the loss of muscle in her hand, her difficulty holding a coffee cup, an increasing need to clear her throat as she talked.
And with each new change, she shook her head and said, “I don’t know why this is happening to me. It may be this disease they say I have.”
I marveled at her lack of desire to learn more about her medical condition. Today, many of us spend endless amounts of time researching our health on “The Holy Google”, as my daughter calls it, learning what our bodies will do as different conditions, from colds to cancer, proceed. But not her; she avoided computers altogether and had decided early on not to ask her doctor or family members a single question about her illness.
So when a new symptom arose, she greeted it with curiosity. The sight of her deteriorating muscles often surprised her. During the last months of her life, she lost capacity to perform many of the simple activities she had engaged in for decades; and every time that happened, she experienced the change without any foreknowledge that it would occur. “Life is interesting,” she would marvel as she gently shook her head.
When she was no longer able to prepare a meal, she replied, “Life is interesting.”
As she glanced around her beloved home and realized she could not clean it as she had done weekly, her answer was, “Life is interesting.”
Staring down at the wheelchair she was surprised to find supporting her, she shook her head and uttered the same response.
Life is interesting.
And over the months we spent together, she modeled to me how to approach my own conditions — both medical and otherwise — with curiosity, even wonder.
Eighteen years ago, I learned about the first of my many diagnoses. Standing in the medical section of a local bookstore while my baby boy crawled around my feet, I read in the heavy medical tome: “Very rare condition with no treatment and no cure. Patients die within two years and almost always are diagnosed through autopsy.”
Those words were etched in my brain. They initially served as a prediction of what would happen, a cold, terse prophecy. Today, though, still dancing around inside my mind, they serve to remind me how little anyone knows about my condition — or about me. And that “anyone” includes me.
A few weeks following that initial diagnosis, as I was sitting on my living room couch watching the sun set and felt a pain rip through my chest, I thought I knew what was happening. This was the first of many heart attacks.
Except that it was not. Three weeks after that evening, an x-ray revealed instead that my right lung had collapsed. “This wasn’t in the literature,” I kept repeating in my mind as I was rushed to be admitted to the hospital and a chest tube was inserted.
Nothing about my condition has been routine.
Everything has been interesting.
All these years later, I still wake up each morning not knowing if my heart will dance in time to some easy-to-follow beat or if it will sound, as one of my cardiologists puts it, “like a washing machine”. As I start out on my walk, I wonder if my oxygen levels will remain sufficient for me to make it through without a rest (or several) along the way.
And now there’s a new development; it is one none of us saw coming, because there are no medical tomes to consult that will predict my progression. My particular manifestation of these cluster of diseases does not make its way into The Holy Google.
When I began to notice the newest changes in my body, I argued, “But this is not what was supposed to happen; I have taken good care to ensure that these changes would not occur.” But my body does not respond to such logical arguments.
Why would I ever think it would?
Life does not follow some prescribed path; why should our bodies?
No, life is much more interesting than that.
And yet we humans seem to be hard-wired to try to control our experience through knowledge. If we fortify ourselves with information, if we plan and prepare for every possibility that may arise, then perhaps we may be able to control our bodies, our relationships, our experiences, our lives.
Palliative Medicine physician BJ Miller (watch his terrific TED Talk here: https://www.ted.com/talks/bj_miller_what_really_matters_at_the_end_of_life) skillfully describes one of the main gifts of palliative care — that it treats the entire person. All other medical specialities focus on an illness; the doctors who practice in these fields have a vast amount of knowledge, gathered through rigorous study and application of that study. So a cancer patient’s oncologist will have more knowledge about his cancer than he does. And a diabetic’s physician will know more about that disease than does her patient.
But those physicians can never know more about the patient than the patient does, of course; only a lifetime of wisdom lived through experience provides that information.
We are each the expert about our own life — a life that is vastly larger than one single diagnosis or progression of a disease.
My patient had this wisdom.
She had virtually no knowledge about her condition from a scientific or medical point of view. She did not need that, because she had the only true knowledge she would ever need — that of present-moment awareness. What does my body feel now? Is a specific emotion arising? How is my mind activated?
What is true for me right now? While the response to that question may sometimes include pieces about a medical condition, it is never sufficiently answered with medical knowledge alone.
So my patient was more correct than she knew each time she said, “Maybe it’s my condition.” Our conditions are not merely our diagnoses. I have a heart condition; but so do you. Although my heart illness may be part of the frame of my life experiences, it is never my entire condition. This patient taught me to rely less on my knowledge of my diseases and more on the wisdom of my experience.
Life is infinitely interesting.
