The Two Yes

Appreciating the terrifying vicissitudes of life…

A good friend of mine has been encouraging me for a few years to share stories of some of the more difficult moments I have encountered in this life’s journey of late. I have been reluctant to do so. I’m curious as to why…

On one hand, perhaps metaphysics…

A Sufi poem, I think by Kabir, speaks lines to the effect of “put your lips close to the ear of the beloved, whisper only that for which you truly long…” This often comes to mind when I think of sharing descriptions of something painful or difficult to endure.

In the face of a world which seems intent upon driving itself mad,

“It is time to put up a love-swing!
Tie the body and then tie the mind so that they
swing between the arms of the Secret One you love,
Bring the water that falls from the clouds to your eyes,
and cover yourself inside entirely with the shadow of night.
Bring your face up close to his ear,
and then talk only about what you want deeply to happen.”

― Kabir, The Kabir Book: Forty-four of the Ecstatic Poems of Kabir

I’m not afraid of these feelings, or these challenges, I’m not afraid of others knowing about them. While certainly I have met with adversity, of the billions of humans (to say nothing of displaced or set upon other beings) I am quite fortunate. Today I am well sheltered and well fed. I am warm. There are flowers blooming outside my door, and the window from where I sit offers a little view of others whose material needs are generally well met.

While certainly I am no stranger to adversity, that does not set me apart most likely from you or anyone. In this coming to be human at this time, my fortunes globally place me likely among the most privileged in the world. My friend’s encouragement comes from his desire to see me connected to more compassion, to gain more support for my very personal and real struggles. He’s not wrong, I need to find a better integration to persist in the world today.

Somewhere in there, there has been an allergy to sharing “my” war stories from the front. There is so much in the world today to invite sadness and despair, I think I have tried to err on the side of hopefulness and possibility.

A few years ago I ended up briefly in hell. Dennis asked me to share that story and it has been sitting on my desktop for over a month.

Recently, among my great gifts, has been the opportunity to work with John Kesler to deepen my appreciation of his insightful Integral Polarity Practice.

I hope to give that topic a more personal and thorough treatment sometime once I feel more well steeped in its wisdom. For now, I have appreciated beginning to learn one of the 21 polarities with which John constructs his insights, the Life polarity.

In short, this attends simply to the fundamental and ever present dynamic of expansion and contraction — in breath and out breath, to put it more simply. Attending our awareness to this natural condition can be a very peaceful experience as there is a certain stillness from which one might easily observe simply breathing.

You can try it now. Simply breathe, nothing more, let go of doing, stress, tension, worry, you can come back to those, just breathe.

To the degree that we can approach that elemental condition, a certain stillness of body arises, in that stillness, the mind begins to calm, and in that gentle space we find a certain fullness of peace. John refers to these conditions as the Virtues of Being, essentially the still point where expansion and contraction meet and kiss one another in their shared perfection.

I’ll come back to this at the end of the piece. For now, a perfect storm…

For those who don’t know, as a quadriplegic my ongoing well-being depends on the availability of daily skilled care support. This care is necessary for basic functions from rising to going to bed, food, hydration, elimination, as well as facilitating my capacity to meet the tools and contexts for good work.

Our story is set in late October, 2020. We have just lost one of our regular caregivers and I have about two weeks to find a replacement. The pandemic, now closing in on its first year, has decimated the field; where finding care once meant a few weeks of meeting interesting people before settling on a new relationship in this particularly intimate and vulnerable context, finding a single warm body with basic capacities now takes easily as long.

An existing care partner has just announced suddenly their imminent departure — “in two weeks I’m moving out of state and getting married.” This was unexpected. I have cleared my schedule – the next morning my full focus begins and must be to find and train not one, but two new caregivers. All of this in the context of existing stress, as I have by now been struggling for a year to find an economic path forward from an otherwise looming freefall, to say nothing of pandemic, and the pervasive anxiety in nearly all of those around me. The country is going mad with the coming electoral battle; Democrats and Republicans both predicting Armageddon should the other one prevail.

I woke that morning, the stress had been too much, my body failed and I was overcome by a severe urinary tract infection. I would not be going to work that day. I would be going to the hospital.

I would not be interviewing new caregivers, I would be entering isolation. You will likely recall that at this time in history, hospitals were essentially a war zone. Pandemic vaccines would not be available for another month. I was already a respiratory risk, caregivers who would usually come to the hospital to aid in my care there would not be allowed entrance, and my absence would impact their earning ability, compounding already difficult situations surrounding me.

Dear goodness, I realize in reflecting on writing these words, this is just the setup!

In order to craft a notice for Help Wanted for caregivers, to field inquiries and arrange interviews, to manage existing team relations and basic household duties, I make extensive utility of voice interface and transcription software, marginally specialized hardware, and an office set up that puts these tools within reach. In the hospital at the time of our story, I have intermittent access to a smart phone, a laptop that allows about 20% of these utilities, and limited control of body posture (sitting up and reclining a bed) to engage these resources.

In essence, my care system had collapsed, I had collapsed physically on top of that, and all of that was occurring in the context of personal economic collapse and wider national and global collapse. I was very rapidly finding my way to falling through the proverbial cracks.

Even as the antibiotics took their course and some modicum of physical health returned, I found myself in a hospital with no care at home to which I could return. (I might almost have made it, but just as these conditions have begun to set on, one of my caregivers had gone on vacation and would not be back for some weeks.) I was moved to a wing reserved for patients who are difficult to discharge.

My aunt came into town, and she and a friend met with a real estate agent to explore disposing of my house. I searched for a nursing facility to which I might move.…

Like those with countless other long-term health conditions, finding ways to manage daily concerns is an exercise in creativity. Certainly there are many “best practices,” but at the end of the day, we have to find that space that works for us. Compromise is ever present, and solutions vary from context to context.

In this instance I’m referring to the management of bowel function as it has come to be in my life, in this last quarter of 2020 after almost 18 years of paralysis.

Let me briefly digress — many years ago when I was closer to the ongoing research around Spinal Cord Injury Recovery concerns, a team of doctors and scientists interviewed a wide group of quadriplegics and paraplegics with the question, “of the ways in which we might be able to help you, what stands out as the most important?”

With overwhelming prominence came back a reply, “please help us regain some control over the function of bowel and bladder.”

For most of my life as a quadriplegic, bowel care has been one of the most substantive affairs. It has tended to take from 2 to 4 hours, generally once a day, and often involved substantial disquieting nervous distress. One year before our story here, and due to another hospitalization (that time for spontaneous pneumothorax), I and my team had discovered a novel alternate process, one not generally prescribed due to clinical concerns, but one perfectly functional with a basic and proper sensitivity to care. Now rather than a daily painful multi-hour affair to relieve my bowels just once, I could accomplish an adequate and healthy cleanse, twice daily and with nearly no discomfort.

Now, in mid Q4 2020, I was searching for a nursing facility capable of delivering such care.

One more digression… The 2-4 our process I described above was essentially manageable due to a few factors; a space heater to help control nervous response, and the immediate availability of loving care to nurse the process along. In general terms, this would not be the case in a modern average nursing facility.

For reasons I could never determine to be either legal, economic, or some otherwise preferential, none of the nursing homes I or the hospital staff could contact were capable of committing to my more streamlined bowel management routine. (I suspect this is likely economic as the process demands 15 to 20 minutes of concerted and skilled attention on the part of the caregiver, while the more institutional grade response allows basically five minutes for insertion of suppository, another 10 minutes to clean up, and the patient is on their own for the rest.)

So for days, I and the team of social services at the hospital ran through the list of San Diego nursing homes that had a bed available for a Medi-Cal recipient, who might also be able to manage the bowel concerns of a high level quadriplegic. None were forthcoming, until one…

Meanwhile, the US presidential election has occurred at everyone is losing their minds. The Democrat has ostensibly prevailed, and the Republican is insisting that democracy itself has been stolen and we must have a revolution to set things right.

My room at the hospital is a small corner, hemmed in by a curtain to my left and a wall and closet to my right. There is only just exactly enough room for a nurse to pass on either side of my bed, and the care of my bowel has been relegated to a doctor who visits (mostly) once daily.

The woman on the other end of the phone seems deeply compassionate to my circumstance and has understood my concerns and care needs. I have a list of questions that I’ve generated over the last few days with the social worker in order to help us hone in on an adequate living situation. I have run this list with this woman a few times now, this is our second or third call and she is reassuring me that in fact, there is a private room with my name on it (not one of my concerns, but a pleasant plus), the staff is both capable of and happy to meet my needs and that I should be very happy with them.

I’m convinced and put in the order with the nursing staff to have the doctor sign off on my case and send a medical transport to my room to make the shift to better days.

Two young gentlemen arrived to my room in the early evening and as dusk fell we made our way to the ambulance and down the road. It was dark when we arrived in the parking lot.

As you might imagine, things can be a bit of a whirlwind from the point of view of the gurney. I just remember impressions, maybe a spattering of rain, the building was unimpressive, single-story and beige institutional. We made our way into the building, the fellows checked in at the desk and we rolled a short distance down the hallway to wait until someone could help us land.

“My things” at this point fit in a small bag on the gurney — cell phone and a change of clothes I think. The young gentlemen from the transport lingered with me, half attentive and friendly, and half routine looking forward to the next duty on their roster. This was our party, the three of us, a little bag of belongings and a hard transport that I needed to get off of soon to avoid any potential skin breakdown and subsequent blooming infections. (I haven’t mentioned this part yet…)

Another digression… Skin breakdown is of great concern to the quadriplegic patient. Lack of mobility, even incidental, makes the skin susceptible to a loss of blood flow and an ensuing necrosis. While this can be managed, it is of looming concern, can onset in a dozen minutes in poor circumstances, and take weeks or longer to heal.

The wounds can open quickly, and when they do become susceptible to infection. In fact at the time of my original injury we were just about to lose one of the more famous quadriplegics in history to just such a concern. As a child in the 80s, Christopher Reeves brought the Man of Steel to life on the big screen, quite the paradox years later when, due to a horsing incident, he became paralyzed from the head down.

Eventually, a hurried nurse (or attendant of some kind anyway) made her way by our little encampment, signed off on checking me in and helped the fellows move me into my new digs.

The first indication that something might be not quite aboveboard was the presence of a roommate in the very small dark, and dare I say dank, quarters. I didn’t mind this as I hadn’t been shopping for any deluxe accommodations, but it was of note as the fellow barely glanced in our direction as we passed by his bed to my station next door.

He was watching TV. Loud. Some show about the very worst of humanity, along the lines of the devolution of those dramatic talkshows that fan the flames of disharmony and distress for our amusement filled our tiny room with the demons of our lesser nature.

Almost as quickly as the aide had appeared, they were gone. The transport agents were gone. I was left on a small hard mattress on an old rickety bedframe close to the floor. My Things hanging in the closet just a few feet from the foot of the bed, my phone resting on my chest.

I had asked to see a nurse about my bowel care, a protective mattress, and an accessible buzzer so that I can call for help should the occasion arise (this can include anything from material distress, right down to a simple need to adjust the bed up or down.) The request echoed in the desolation of the space.

Among my many good fortunes is the relationship I have with a man just a few years my junior, my friend and primary care physician, Dr. Mike. Mike had been keeping track of my situation since things started to fall apart (and always ;-), and was vigilant to my move to this new abode.

I had been alone in the room for an hour with no further attention from the staff either to settle in or establish my care (I quickly realized the value of the proposed private room, as the by now fully unresponsive neighbor kept cycling through some bizarre selection of channels that just kept taking us deeper into the very worst of humanity — terrifying unsolved murders, people screaming at each other, mayhem and destruction, and loud.)

Thankfully, I could send some texts just by speaking to my phone, though lying flat as I was with no ability to sit up my use of the device was otherwise severely limited. To Dr. Mike I wrote, “Not much data yet. In bed with no buzzer and staffing is thin at best.”

A few minutes later, “cell and Internet poor and access to device may be limited and intermittent.”

There was a sliding glass door to my left, a view into cheaply lit darkness revealed a concrete wall about 3 feet from the door, the wall was too tall to see over. The room was dark, loud, and traffic in the barren white institutional hallway visible out the door to my right, beyond the curtain and neighbor, may as well have had flickering lights from some zombie movie. Traffic in the hallway was nearly nonexistent.

Jericho, the friendly maintenance man stopped in to drop off an old-fashioned small metal front desk bell which I am to ring for help. Not that, first of all I’m unlikely to be able to access it reliably, nor that it could be heard over the TV echoing into the oblivion beyond. There are no accessible controls on the bed, so any movement will be dependent on the availability of care.

Later a young girl, well-meaning and sincere, but deeply underpaid and with no measure of observable skill, came in and identified herself as my nurse. She had just a few minutes to help organize the blankets, take note of my concerns and requests to see the head nurse, whom I had been told I would need to speak with in order to arrange the bowel care now nearing 24 hours overdue.

Later she would return briefly with a dinner plate that looked like it had been liberated from some VERY cheap 1950s bomb shelter rations, something beige, lukewarm and mostly inedible. After helping me with a few bites she had to abandon the plate to my side table and rush off to other pressing matters, leaving the remainder of the food to chill there in the atmosphere of madness.

Formal night set on with no resolution of matters related to bed or bowel. I had, at least, a cozy blanket provided by the nice young woman, but no control of the bed, no reliable manner to call for help, and no confidence remaining that things were going well for me at all.

I didn’t sleep. Sometime around 2 AM I found someone to turn off the neighbors television set which had miraculously been tracking still with acute perfection, the absolute worst of humanity, and loud. Within the hour, the neighbor stirred and restored power and direction to the marvelous unit.

As the morning light came on, I was met with what appeared to be the standard procedure of the facility. Some fairly unpalatable oatmeal served by someone with no time and shortly thereafter a team of folks came in offering to help get me dressed and out of bed. I had to refuse, “still waiting for a bowel program I said.”

After some persistent back-and-forth with scarce staff, sometime shortly after noon a tall woman entered the room, announcing herself as the head nurse and informing me that they were not now, nor have they ever been able to offer the bowel care of which I was in need. This, at least, was a relief as I could simply then say, “call for transport, I’m going back to the hospital.”

I honestly felt as though I had survived a visit to Dante’s Inferno. To say nothing of the felt deficiency of care for my own person, I had encountered no one there that to me seemed cared for at all by the system of which they were a part. Everyone was frazzled, distracted, friendly but anxious, and in the case of my roommate, entirely alone into themselves and abandoned.

From my notes on the occasion, “I’m starting to recognize, there is far more than one America.”

Though the saga continued, that was the worst of it. By 5 PM I was back to the ER and during the “average everyday dysfunction” of the medical system. Food and bowel care would still be some ways off, but at least the staff was fully qualified and I could have some confidence that I would eventually be settled in to a context less wholly disregarding of the humanity of all involved.

It would be a few weeks still before I would find my way back home, now however with a much deeper appreciation for how fragile and tenuous my circumstance could be.

Now let us return to that Virtue of Being, the stillness, calm, and fullness of presence that our friend John has pointed to. All through the journey, inhale, exhale, inhale, exhale, motion and stillness together as one.

You can try it now. Simply breathe, nothing more, let go of doing, stress, tension, worry, you can come back to those, just breathe.

In that place, we find the seeds of peace. Those seeds can envelop us with their aroma, an aroma of acceptance. Inhale (expansion,) exhale (contraction,) we accept the moment as it is, we accept the world as it is in that moment. Inhale, exhale, yes.

Yes, here I am. Here I am in the fullness of this life. Here I am. Life is truly full, full of texture, silk and grit, wind and sea, sunshine and darkness. Here I am, myself that very texture blowing through the world, a beating heart, a breathing body, a loving, seeking, longing part of this transcendent gift, the sacredness of being alive, the sacredness of life itself.

Yes. In all the madness, and all the fullness, and all the fear and all the beauty, I accept, here we are.

Now, as John suggests, for the second Yes. Yes I’m a part of this marvelous flow, and yes I can act, if even just with my loving heart, and perhaps with my voice, and maybe my hands, yes I will.