Balancing on my tippy toes…
When I stop to still myself to write these words — I’m on the tail end of a fairly nonstop 8+ hour stretch of concentration and effort — I recognize feeling a bit like a top spinning around and slowly losing its momentum.
There is an interim state as a spinning top succumbs to entropy, a place where perfect balance is lost, but the capacity to resist gravity remains. This is my living state today, and for many days surrounding today. Like a dancer, I am on my toes a great deal, spinning and whirling, leaping a bit, and enjoying the sense of gyration, balance, and focus. Like a dancer at practice, I tumble occasionally, lose my footing and lapse for a moment into a sense of disorientation and upset.
As I’ve mentioned in previous updates, I have good tools, and good love around me to help me rebound from those perturbations. For the most part, I enjoy the good fortune of being able to reorient in a timely fashion to meet whatever opportunity or task is called for in the moment. Still, at the same time this is definitely a period of practice, and certain opportunities to rise further simply require more foundation than is present in certain instances.
In conversation with a friend today I mentioned an instance I recalled, a full five or six years after my quadriplegia set in. I was sitting with a friend, casually just enjoying the afternoon. Something, I forget what, tumbled and fell – maybe a ball or something. Its trajectory was just in front of me and, without thinking, from my wheelchair I reached out with my right foot to catch it with my toes. Some of you will have gotten the punchline by now – of course my right foot didn’t move. My leg continued to sit there, paralyzed, and resting with gravity, while the ball – or whatever it was – tumbled by.
It was a joyous moment and I laughed out loud. This instance illustrates something both intimate and quite public.
On December 10 of last year I was visiting my friend and Dr., Mike. While we did not know it yet, I was suffering from a fairly dramatic pneumothorax (my right lung was mostly collapsed.) Mike commented that although I was feeling poorly, I certainly looked good and strong. A few details in the checkup suggested we should get an x-ray which we did, and by that afternoon I was being admitted to the ER, and later that evening as an inpatient to the hospital for the next 11 days.
Mike later commented that he needed to reevaluate his approach to patient triage to better account for apparent strength and resilience masking more urgent concerns.
I generally have a fairly positive disposition and strong constitution, and this has been an issue in the past. I remember another time, being triaged in the emergency room when a catheter insertion in the urethra had gone poorly. My attitude and laughing with a friend had the doctors and nurses passing over us as a critical care concern, until the security guard noticed the pool of blood underneath me growing alarming and intervened.
The story of trying to kick the ball came up today in a much more innocent context. Dave has long been after me to offer more windows into the process of this living journey. In particular he has liked, and I also delight in, the idea of filming video, both of the general activities, but also in a kind of video diary YouTube sort of a way. After a rich conversation today about various concerns and opportunities in our larger systems for greater care and wellness awareness and more sophisticated practices, and how our lived experience here, and various intelligences might be able to find avenues of service in that, Dave made an innocent enough comment.
“I know it might not be a financial priority, but turning a good video camera on yourself sure would be a great addition to what you’re doing these days.” (Paraphrase 😉
I laughed, and cried a little inside, and looked to my left – sitting at my desk – where the selfie stick tripod I got about a month ago sits staring at me, forlorn, waiting for my phone camera to grace its grasp.
The simple fact is, the hours of care support I currently have available to me, and the things I need to accomplish in those moments, preclude prioritizing the act of setting up and filming for now. As I mentioned, I delight in the idea and have even picked out the camera, but that will have to wait until the foundation is up to meet the levity of the opportunity.
There’s an important, and often invisible, point to this story. (I do remember I promised also to link it to something quite public, we’ll get to that in a moment.)
The important thing I want to name here, is the effort being put forth, both externally, and emotionally, by those closest to me in this time of transitions.
I myself am up on my toes, spinning, twisting, reaching, and balancing. I’m navigating financial instruments, social services, care systems, logistical planning, loss mitigation, and more. It is a complex mandala that I am confident I do not fully comprehend. Nonetheless, I practice through the ambiguity and uncertainty of it all, knowing I am moving often in the dark, but moving nonetheless.
The thing about it is this. Because of the future uncertainty, I have fewer people caring for me, and for each other in that context, then really is warranted. This deficit is itself warranted simply by the gravity of the situation – absence of funding, narrow window, complications of training, etc. For those dear friends that are here, Cassandra, Caitlin, Eleña actually doing the on-site lifting – their own footing is uncertain, as some of their weight is necessarily resting on me.
(Greg is a special case, as his departure for internships on his road to his doctorate is imminent and planned, emotionally however, we must include him in consideration.)
Where will Kabir be living? What resources will he have for his care? What will he do when Greg departs from four morning shifts at the end of February? What will my emotional response be to that shift in conditions, and the process to arrive there? What will I do next, will Kabir pull a rabbit out of a hat, and if he does what role do I want to play in his next iteration, if any beyond friend? What work shall I find to do next, and how soon will I need it?
This is just a partial list of the ambiguities that these dear friends are facing. These are not mere academic or emotional considerations, but require active engagement to research options, apply for jobs, interview, consider, consider, consider, reorient, act.
Meanwhile, the next circle of care, like Dave above, see me enthusiastically, every day, working optimistically, creatively, diligently, to meet the obligations of understanding the complex web of details and necessities, while also leaning in creatively as well as I can to nurture the possibility of some exciting rabbit coming out of the hat, or at least some delicious lemonade to be made with these lemons.
These loved ones cannot easily see, though I think you may sense on some level, the delicate web of love and care that is holding together this little ship on these big seas. Often I think it seems as though we can lift enormous weights, and often we have, let alone little things like a camera, or an extra bit of research, this little care community of ours. Today however, the robust integrity of this system is much more delicate then it has ordinarily been.
I hope people can appreciate this, not about me so much, but about those around me whose strength, grace, integrity, and resilience is largely unseen under the constitution and attitude of uprightness that shines through. For the frailty of their situation, which I have made, these people are like angels, carrying a vast reservoir of goodwill in the face of enormous odds.
A moment of silence for these good souls.
I promised the public face to this dynamic, it is this:
Often in our world of human affairs, it seems like something obvious is going undone. Why can’t we fix that pothole? Why does the line at the DMV have to be so long? Why can’t our politicians solve this or that? Why do we have to have wars, or crime? Why can’t we have nice things?
It is this very dynamic. We look much stronger, much more resilient, much more capable than we yet are. This is the source of aspiration. Fill it with goodwill, compassion, care for others, and an optimistic heart.
In the words of Bill Gates: “Most people overestimate what they can do in one year and underestimate what they can do in ten years.”
For some reason I remember one more, perhaps an African proverb, I don’t recall: “if you want to go fast, go alone, if you want to go far, go together.”
God gets to know things, we just get to ask questions…