I have given this project a run, and now it has come to this:
I am taking a vacation from turning lemons into lemonade, from acting like I ever truly feel well when I don’t, from smiling when I'm not happy. I cease to be the marketing plug for organizations that were never there for me. I can no longer be an "inspiration" at the continuing cost to myself, especially as I am the person with the least energy and fewest resources to do so. My accomplishments disguise the fact that every day I wake up is against the odds. If leukemia does not return and kill me, my patched heart will. For certain. Because of this, I can no longer be encumbered by the apparent false virtue of acting like a consistently happy person, which means I can be the most authentic one.
My vacation is going to include being thoroughly and satisfyingly pissed off. I will continue to accomplish extraordinary things that I shouldn’t be able to, and then blissfully not share my joy and satisfaction with anyone. It’s OK, I am used to it. My vacation will include days so deep in my grand church of nature that I will largely be untraceable and invisible. It will include giving the middle finger to the entire digital “social” world, which means my vacation just started.
It is often said that the world owes us nothing. Nonsense. That is the attitude of a society that thinks Jesus and capitalism can solve it all, where without realizing it we commodify everything, even civility. But we do owe each other civility. I owe it to you and you to me. And because I am not feeling it, and I refuse to act coarsely, I will simply withdraw my good intentions like a player leaving a card game. Play on without me.
Maybe there are people who could benefit from witnessing me overcome seemingly impossible circumstances. I am sorry, but you should have contacted me. It has not been give-and-take. It has been all give. I am still there for you but now you will have to ask. That is what I did while knee deep in all the chapters of my hell, and I got no response then either. I had hoped to find my tribe, but I will settle for being a social movement of one.
I don’t know if my vacation will be for a week or forever, but it will last until I am honestly asked to return. Until then, I will be immersed in the beautiful -- in what I love truly and most people love falsely, like craggy mountains, warm oceans, and the sound of desert birds waking while I lay in bed with my morning coffee.
Alone = Not one in 7 billion people knows where you are. I understand how that could be frightening. I find it exhilarating. It is a state of being that is entirely unfettered. This is one reason why running and trekking in the wilderness is the most purely authentic experience I know. Maybe it is like the sensation of an astronaut in the void of space, but with air. Or being in a bubble absent of any false distractions, except it's an everted bubble, where the non-sense is on the inside and I am out here. This type of alone-ness is beyond the physical. It seeps into your mind like a drug, and similarly can elevate your awareness or make you totally nuts. I highly recommend it.
It took me almost two days to find the word “inconclusive” and then I didn’t even use it. That was because by then my mind had lost the sentence I would be using it in, just as it had lost the word before. This is important because creative writing is an enormous part of my work. But it didn’t stop the writing; I found that I just wrote something completely different… without thinking about it.
Now… for all the 3.7 people that actually read this blog, let me say that if you feel that you have something beyond “chemobrain”, you probably do, and are: (1) Not alone, and (2) Not crazy. “Chemobrain” is too trite. “Cognitive impairment” is incomplete.
My changes are more fundamental than short-term memory loss. Let’s call it what it is: brain damage. That means either loss of function or rewiring, and the rewiring part has been the adventure. I know for a fact that neurophysiology has changed. For example, I regained my partially lost sense of smell, and I can now smell roses for the first time in ten years. Also, my preferences have changed. I’ve held hammers and screwdrivers as an extension of my hands since the age of four. My natural mechanical abilities and desires guided my life, created my homes, were integral to past adventures. But now, I have a true aversion to any mechanical task. Although it still seems a necessity for my lifestyle, I pray to never hold a wrench again. My tastes are different, as is my sense of humor, or what remains of it. But it’s the new vocabulary that is most interesting. It is diminished, but as I speak and write, new words come out of me like little surprises. And that has made me a novelty to myself, which is really just weird, but at least it’s entertaining.
Changes in personality are suggested in the scientific literature on this subject, but they don’t note how unnerving it is to live a perpetual out-of-body experience. I imagine it must be uncomfortable for friends and family. At least they wake up with themselves each day. And it is not about some divine gratitude that comes from survival against the odds. I didn’t need leukemia to have an unusually deep appreciation for life.
So here is the message. One can pine for the lost soul or just ride the crazy train and see what comes up next. Like Rod Stewart sang in 1971, you didn’t ask to come here anyway. What I don’t embrace I at least accept, because either a thing is or it is not. Whatever. Everything is out of character anyway.
Adapt or die. The basis of mindfulness teachings and Ecology 101. I should know this, given that I teach that second item for a living.
After successfully completing the Rota Vicentina through southern Portugal, the responsibilities of my particular life story meant a semi-emergency, sleepless 38-hour journey back to the United States. No onward travel to Spain or Morocco as planned. Instead, an absolutely anti-exotic turn of circumstances.
I am left with another satisfying physical accomplishment … with an aftertaste of failure. The fact is that my life is a collage of responsibilities and limitations that I cannot seem to negotiate away.
It is true that I have moved beyond Daily Epics (which are still essential), and now have the ability to take short hops into the outer world. Still, in a previous life I would be racked with despair at this seemingly “limited” situation. But now I have all that wisdom gained through the transformative power of soul-altering amounts of suffering, so I should know to just leverage any circumstance. Right.
So work and other deferred life stuff can now be handled before spring. With unusually decent weather in California, I am tackling more upgrades and maintenance on the Airstream. (It is 66 years old.) No doubt, it is a great time to take the old slug out to the desert, only a long day’s drive away, and search for wildlife and hot springs. Besides, Phoenix and Tucson have international airports that will take me to any landscape I want.
I have to remember that every day of my fractured and beautiful life is an adventure. This is my right now, and I am still knee deep in it. I just get over it and move on. Anything else is a waste of time.