I’m not sure exactly what to say - what to write. There is so much going through my head: I want to preach from the mountain, sound-out from the street corners, storm the barricade, and shake everyone of you until you listen. Until comprehension slides across your face like the dawning sun. I am crazed. Maddened - to change the world. To change our expectations. To fix this. To fix what I could not fix...and perhaps that is why I struggle with these words: I’m still too focused on fixing what I couldn’t instead of fixing what I can.
Over the course of these two years I learned a lot about myself. About the capacity for love - about cancer and about medicine and about how we die and the death industry. Some of these experiences were the most awesome of my life, even if the outcome was the most devastating. Some of these experiences were the worst.
In our culture we have been raised to believe that we will do the right thing - that we are smart and innovative, compassionate and just. I have seen the business of medicine work like a perfectly timed engine and I have seen the opposite. And frankly because these encounters vacillated all over the place from excellent to bad, bad to excellent - back and forth, back and forth erratically bouncing me and the ones I love all about, they were terrifying. And the medical profession is aware of these disparities and yet are so caught up in the bureaucratic tangle of bottom lines and regulations that they do little to change this experience. I often wonder if today God was charging Moses to take his Commandments to the people that one of the top ten would be The Failure to do the Right Thing. Complacency as sin.
Facing cancer was unfamiliar ground. On some days I leaped and bounded over obstacles with ease and unfettered energy, soaring through the sunny blue skies, tossing boulders to the side. There were also moments when I laid my head down on the path, deterred by the smallest of pebbles. Immobilized by fear and indecision.
Now that I am sitting in this place called grief, taking it all in, I am writing and reading and crying. And I know that this time of death, this end season of one’s life, is meant to be cherished and honored and handled with grace. But I have heard too many perfectly parsed words that were platitudes instead of life-affirming actions. There is much to be improved and I think that I just might want to be part of the conversation to help understand and change the culture of death. But I am too close right now for perspective. Too raw yet to turn anger into action.
Throughout this journey with Bret, I often said that cancer is not just a disease of the body, it is also a disease of logistics. Survival depends not just on your biology, medical treatments, and money but also the ability to be able to seek out information. And survival doesn't always mean that the disease is destroyed and the body healed. Sometimes survival means actively participating in treatment, asking questions, pushing back, bending and breaking the rules, and advocating for yourself and the ones you love until the end...