The sky has fallen, or is it…

Honoring the cycles of darkness and dawn.

This note is going to speak largely to my personal experience, current challenges and circumstance, and prayers and intention for the future. I will make gesture to reflections and similarities across scale with global conditions as well.

With that initial disclaimer, I also want to acknowledge something eloquently spoken to on multiple occasions by our kind friend Bayo Akomolafe (and likely others) — that while the metacrisis looms increasingly for the those of us in the loudest societies on earth, the world has ended, and continues to do so, for many among us already.

Easily at hand, let us recognize and acknowledge the North American genocide of native peoples, the Chinese genocide on the Tibetan plateau, the colonization and pilfering of the African continent, just to name a few in recent times. Of course, Palestine, Ukraine, Sri Lanka, Guatemala, ghettos everywhere, and others…

And so, with some humility to context…

Three years ago today I found myself in what I then described, not un-seriously, as “some level of hell in Dante’s Inferno.”

The context was (I have since learned) one of the very worst nursing homes that San Diego has to offer. The pain was palpable.

I had been lured there from the hospital with false promises of care and accommodation which I quickly learned, upon arrival were not, nor would they be, forthcoming. Were it not for my good fortune of resilience and agency, there I might still be, or perhaps more likely, there I might have died. It may sound dramatic, but let me illustrate further…

The precipitating circumstance: while we all have challenges to overcome, there are a few particular viscosities unique to situations such as my own, an understanding of which will help to set the stage.

In a paralyzed body such as my own, and without the benefit of regular physical therapies to help maintain certain levels of biological flourishing and resilience, there is a degree of fragility of health which can quickly interfere with otherwise ordinary and often necessary processes of life. Mundane business of house holding, let alone more complex management of disability or generative engagement in the world, can fall easily to the side when faced with what might, in a more commonly healthy body, be simply feeling just a little under the weather.

This is a first-line of natural viscosity that I and many others face, often invisibly, every day.

Overcoming that, which often I/we do by applying just a little more mindfulness in the day-to-day, the next threshold is that of personal care. Both in formal and personal terms, there is a system of relationships in place which must be well and in good order. Competent care must be found and hired and paid and relied upon for timely action. These constitute deeply personal and vulnerable relationships, often more akin to intimate partnerships than simply employer/employee dynamics.

Should these fail, or falter (as happened in the story we are exploring), for reasons structural or personal, again, otherwise ordinary and expected capacities of engagement can fall quickly to disrepair. This can mean tasks as “taken for granted” as ordinary relief of bowel or bladder, or the taking of food and water, and scales just as quickly to the ability to show up for an appointment or deliver on a promise, might each come to a grinding halt with real-world consequences rippling out for I/we, as well as others.

As is alluded to in these initial two, the next threshold of viscosity is that of the systemic economics which are expanded commensurate with the degrees of present and relative disability. Each necessary accommodation to participate in the world, from reduced hours in the day (for those given over to necessary care), to costs of that care in financial and human terms, and additional equipment and/or technology which both requires its own levels of maintenance, as well as thresholds of reliability, adds to the complex economic picture which must be satisfied for the system (individual/family/etc.) to function. There are, often unsatisfied, or at least difficultly so, costs for this.

Last to mention, after the dependence on body, close human contact, and systemic economics, there is the final threshold of those briefly mentioned technological aids. [I may be giving this some undue weight for emotional reasons,] but here I am referring to resistant conditions such as the fact that the very voice transcription I am using to write this piece (the accessibility equivalent of what you might know as your computer or smart phone keyboard) often fails sporadically throughout the day and requires a 90 second to 3 minute pause for reboot, just as easily midsentence, as not.

Generally speaking, managing these domains, life proceeds in an ordinary manner with, it has been lovingly said, “the regular ups and downs of the Dharmakaya. :-)”

As I was saying… The precipitating circumstance to this challenging situation of residence in Hell on earth, was that I had received unfortunately short notice from one of my care team, just hours after unexpectedly losing another. This meant that I had only a matter of a few days at the most to recover the necessary care structure to sustain and endure. This increased stress levels in the body mind system and subsequently my health faltered which landed me promptly in the hospital. With adequate care structures decayed at home, and with no way at hand to do the necessary work of reestablishing those structures, I became suddenly a ward of the system.

Once my health was returned, I had work to do from my hospital bed just to find a discharge option to some nursing home that could meet the daily demands of my care, this proved more challenging than I might have imagined.

Which brings us full circle, the home which convinced me over the phone that they would provide the necessary services had quite simply lied. Instead of adequate care, I found instead, the following…

The atmosphere of the small dark room in which I found my prospective home:

There were two single beds in close quarters, these were separated by about 4 to 5 feet and a curtain. My bed was closest to the outer wall, adjacent to the shared bathroom (which was by no means accessible to me), and a sliding glass door of filthy dirty panes through which on offer was a view of the 3 foot wide concrete landing and concrete wall beyond, no sky, no nature, dim light.

The station closest to the hallway door was occupied by a roommate. I never got to know this person, but my heart goes out to them to this day. They were, to me, verbally unresponsive.

When I arrived in the early evening, this neighbor had a television blaring at what must’ve been full volume. The content of the televised presentations, which apparently they navigated quite carefully as the channel would change periodically, were “true stories” of horrific murders and other displays of terrifying human relational dysfunction. Only the very worst of news in hell it seems.

This condition persisted into the night until around 2 AM, when I was finally able to ask a passing attendant to turn off the television, presuming my neighbor to be at least by then asleep. The ensuing silence lasted but perhaps 20 minutes before the sleeping creature awoke and returned the monitor to its previous condition. It would remain this way for the duration of my stay.

To describe the bed I occupied, I must make a further comment on a condition of my own health.

Many of us are familiar with the term “bedsore,” though I think it is often overlooked that these wounds can be actually life-threatening. It is one of these that became infected and ended the life of the famous actor Christopher Reeves, who also suffered a spinal cord injury and paralysis.

These sores occur when adequate care is not taken to relieve ordinary daily pressure from the skin. This can happen when sitting or laying, or even when bearing some otherwise ordinary weight from above, say a laptop on the thighs for example.

At home I have not only the benefit of rising from bed most days, but also a mattress with special foam that makes accommodation for these concerns, allowing me to rest comfortably and safely through the night, or even over a course of days should the need arise. My bed at home also allows me to shift my weight by sitting up and laying down through adaptive technology that I can operate at will.

In this apartment in the city of death, there was no such accommodation. The mattress was thin and hard and not at all accommodating. While the bed could change position, it was not something that I could manage on my own and would require assistance from a second party to either raise, or lower me to or from a seated condition.

This might be a manageable concern except that although I had some means of calling for help, more often than not no such help was or would be readily available for some time. Even when someone could come to my aid, their ability to stay was virtually nonexistent, and return equally as tentative as the initial visit.

This was an immediate ongoing concern that could have dire consequences over time.

The same fragile ability of personal assistance also translated to matters of dietary concern. The available meal fare certainly fit the Perdition brand to a T as well. I honestly have no basis from which to compare or describe this food. It may have been more recognizable had I not been assigned a vegetarian diet, which tends to work just fine for me at home. I recall beans and cauliflower, both about the same corpse beige in color, mushy and not quite flavorless, but in the wrong way. I expect they came from a can, and wouldn’t be surprised to hear they had been put there sometime in the middle of the previous century.

It was work even to try and move that food from mouth to gut. A moment’s delay in taking bite after bite sent the aid whose task it was to feed me out the door and on to other pressing matters. No one would return to finish the meal until well after it had cooled. That was evening, I would not attempt to eat there again.

Fortunately for me, of the few belongings I brought along, my cell phone with its dwindling battery allowed some voice interface, even though I could not actually see or physically interact with the device. When my persistent inquiries of the staff and management over the next 18 hours or so finally revealed that the necessary and promised care would not be forthcoming, I was able to reach my dear friend and primary physician to facilitate a return to the hospital.

After just 20 hours or so my brief stay in Tartarus came thankfully to an end when an ambulance arrived and returned me once again to the ER for re-admittance to more manageable accommodations.

I will leave the telling of that portion of the story to another day, but suffice to say, a few weeks later I was home again and once again navigating a trepidatious road forward.

The reason I have undertaken this long missive (if your attention persists…) is that it speaks to risk on a narrow path I have been traveling for some number of years now. A path that remains precipitous to this day.

I am not alone in this, but I am perhaps in many ways, ahead of the curve. Increasing ecological, social, political, and economic shortcomings have and will continue to make life “difficult at best” for growing numbers of our human species, to say nothing of but not to discount our floral and faunal family who suffer increasingly in this time as well.

For myself I have tread this path with a sense of purpose and intentional endurance in no small part due to those who have been with me as witness (this means you, dear reader), as supporters (a countless number who have made financial contributions to the journey), and as partners who have stood by me in body, in thoughtful reflection, in dialogue, and in creative innovation and experimentation.

For much of the last four years this path has felt endless, often as though it might at any moment reveal itself to be nothing more than a futile slide into obscurity and oblivion, dashing and devastating not only any hope I might have, but the hearts of those who have stood with me. But like healthy fire, it has tempered and nurtured my soul. This path has worn and shaped not just my resilience and creativity, but my sense of purpose, discipline, commitment, and vision.

I write today, from a rise in the road from which vistas stretch forward, views revealing future possibility and evidence of structure and strength built quietly but just now apparent. These novel strengths, accommodations, and possibilities are not just apparitions of my mind, but have been reflected to me by those close, those who have been watching. I am living now, in stories of real possibility, stories shaped and tested in dialogue and collaboration with community and care and real-world appreciations of not just my own, but our collective stations together.

To be paradoxically sure, nothing is of course certain. On the day I write these words, I have but 11 days of funding outstanding. This runway might terrorize a less experienced soul, but I recall feeling more fright at many more months than that just a few short years ago. In that time I have become more surrendered to possibility, more sure of my determination and more full in my intent to be a vessel for some sincere and skillful participation in a world at woe.

Indeed, I tell this story at the prompting of one of those creative partners working on my behalf to help find the funds that might allow us to pass this stretch towards some more coherent economic footing and generosity in the world.

Last week I published a piece recounting an outing I took, a few moments of respite hooky in the sun to re-nourish my body mind and soul for this road ahead. The header for that piece was a photo of me gazing out over the bluff to the ocean beyond. The story that was not told, invisible to the uninitiated, was that of the many stairs over which my helpful friend had to carry me to make that vista possible.

I have, by grace, determination, and in no small part the hands and hearts of others, overcome many stairs and obstacles to reach the place I sit today. Today I sit, eyes to the horizon, to face a world in need…

What makes this poly crisis a metacrisis is the fact that we are dealing now, not just with something, even so sophisticated as a complex of problems requiring technical fixes, but an actual underlying condition, where our systems of market, politics, society, finance and economics at large, and even culture itself on grand scales must shift and evolve, not simply in an adaptive way, but in profoundly transformative ways in order to avoid otherwise truly catastrophic outcomes.

In my personal accommodation, I must collaboratively create these systems of market, social order, economics, and culture just to arrive to work each day. Thankfully, that is a microcosm of something we all must do together in this time, or leave to our children the further wreckage of our failures. That is not an outcome I am willing to endure, not while I have strength in my heart or my hands, or least of all in my community of care.

As I alluded to earlier, I have received incredible and heartfelt expressions of admiration and encouragement from those around me. It is to that great wind beneath my wings that I now aspire to rise.

This week, and for the coming foreseeable future, I will work diligently to find a way to finance these efforts here. (By all means, jump in with help if you can — it’s tax-deductible. ;-) Should I succeed to pass between the previously described Scylla and Charybdis, I will turn my whole heart and attention to finally maturing and materializing the nascent identity that has been growing in me both in insight and strategy over these few years, bringing to bear the fullness of my being in service to humanity’s meeting of this moment of the metacrisis as the stewardship species we are meant to be.

I have a confidence in this view. That through a continued and persistent practice of humility, of listening well and better, of keeping an open heart and caring for the fragile moments of ground beneath my feet and souls before me, that I have gifts endowed by the Creator, Great Spirit, primordial intelligence, the ground of being, to bring in sincere service to life and love and all those things that truly matter.

And now, if you will forgive me for being so bold, back to work…