It has been good taking a break from social media and too much connectedness. I escaped from a recent roller coaster of medical trauma, came to an agreement with my doctor at UCSF, and escaped to the Sierra Nevada high country, encamping in Tahoe National Forest with Tater as our base camp. The doc said, "Are you coming back?". I said, "No."
Where we are now is my church, the high mountains and deserts, the places that have been unreachable for so long. Early this morning I hiked/ran a trail up to a group of mountain lakes in the Granite Chief Wilderness above Tahoe, leaving the chilly trailhead way before the other daytrippers, and had the place to myself. That meant a cold naked swim in crystal water amidst granite and patches of snow, and then a bask in the sun on a boulder with gorgeous western tanagers singing in the pines. There was not an artifact of human invention in sight or sound -- nothing but the mystery and magic of the non-human world. There are times when you get this undeniable feeling that you are in exactly the place you are supposed to be, doing exactly what you are supposed to be doing. Bingo. I wonder how many of us feel that way at a Sunday morning service - truly all the way to our bones... to experience something so purely you want to live in that space forever.
A new adventure is in the works and it is absolutely NOT tame or conventional. Don't miss the undoubtedly soon-to-be-award-winning video of Brother David at the wheel. Check it out and you too will be baffled as to why there are doubters! Fasten your seat belts and go here:
Yesterday was my weekly encounter with my medical team in San Francisco. It is now an increasingly contentious event because I no longer hide my belief that the whole bunch of them is guessing. My bouts of fatigue, nausea, and mind-altering skin reactions are in general no better than weeks ago. The difference now is that I actually heard the admission, “We don’t know what to do”. That is a dark satisfaction. It has been 431 frustrating days since they cleaved my chest. It has been 108 days since chemotherapy destroyed my bone marrow, among other things, and was replaced with somebody else’s. I am still a semi-invalid from it. I am less alive today than before the transplant, less alive than before they “fixed” my heart.
Meanwhile I fight with the medical industry. Thousands of dollars of bills have been misfiled by the insurance company (BCBS), pharmacies, and medical providers. As of yesterday I washed my hands of them, told them to figure out their own problems and simply quit paying the bills. I found just enough legitimate bills to cover with my medical fund (thank you). I am done.
I have worked each day to regain, against the apparent odds, some semblance of my previous health. It isn’t primarily about that thing I see in the mirror. It’s about beaches and mountains and deserts. It’s about being a caregiving partner. It is about feeling like a part of Earth rather than a visitor. It doesn’t matter… again.
Yesterday I was slammed back down against the mat. What should have been a celebration was simply another chapter of frustration and misery as they finally (at my fourth request) removed the painful chemotherapy port in my chest. Unfortunately it had been in place too long and was imbedded in scar tissue. I laid on the operating table fully awake as the surgeon tugged and cut for half an hour. My eyes were blocked from viewing it, but the dribble of blood I felt down my ribs and every minute too long correctly told me this would not be the promised superglue fix. The nurses could not understand why I was speechless when they said “It was a little tougher than expected and you cannot exercise or raise your blood pressure for two weeks without risk of a hematoma. Oh, and why do you have a scar down your chest? You look so healthy. Do you want to see what we took out of you?” No joke.
So today my body feels like it lost a street fight, in addition to all my other apparently unfixable symptoms. And Deborah is beyond reach and suffering with her own unbelievable challenges. She just flew back to North Carolina and is now 2697 miles from where I sit now.
I am spent. I have fought to be positive when the numbers were all against me, when even my allies became adversaries. And then about three hours ago, without a prompt, I suddenly realized that I had ticked off perhaps the biggest item on my bucket list. I had always wanted to test myself, to push to the very edge of all the mental and physical suffering I could fathom enduring, just to see what was there. It seemed like the scariest place in the world. I figured I would know that point when I got there. And when I got there I would then do something just as crazy… keep going.
I am at that place. I am in pain, I am in misery. I have no faith or hope in a positive future. And I can no longer recall what if feels like to be otherwise. My life really is a wreck – one simply cannot deny it.
So today I plugged in my headphones, cranked up the volume, and just took a step. Right over that edge. And then I walked for an hour. I also cried for that hour. And I am crying now, over this stupid keyboard. But tomorrow I will probably get up and do it again, and have another good cry before getting on with it, and I have not the slightest idea why.
Casting about for my next adventure while working within my significant limitations is a challenge. So I decided to go way back in time-- back to some of my original readings in science. Those were great pieces of literature that for me came long before years and reams of research articles about the minutiae of ecology. Here is one gem I found from Aldo Leopold. It perfectly describes my professional and moral dilemma:
"One of the penalties of an ecological education is that one lives alone in a world of wounds….An ecologist must either harden his shell and make believe that the consequences of science are none of his business, or he must be the doctor who sees the marks of death in a community that believes itself well and does not want to be told otherwise."