Despite my deep sense of gratitude, my appreciation of the skill and dedication of those who cared for me and despite a profound sense of humility, born of my knowledge that I have been the recipient of the very best Western medicine has to offer, even as I am poor, despite these and other positive parts of my experience, I found myself thinking over and again, during my hospital stay and afterwards “Something is not right here?”
What follows are some initial explorations into the possible causes of my dis-ease, which I imagine is not unique among hospital patients who have undergone major surgery, and some tentative ideas about how we might respond.
Part I -
After surgery, awakening from the fog of anesthesia, I was asked by my attending nurse about my level of pain.
On the wall of my hospital room—room 616 in the South Ward of the Neurosurgery Department at Kaiser Hospital in Redwood City, California—was a whiteboard where the current shift staff names were listed along with my physician’s name and important instructions—like, in my case, 72 hours flat bed rest, as I had just had a tumor removed from inside my spinal cord dura and there was concern that the force of gravity would cause spinal fluid to leak from the incision if I sat up or stood up. In the bottom right hand corner of that white board, there was a row of simple line drawings, depicting faces with increasing levels of displeasure, represented by increasingly pronounced down turned mouths and more deeply furrowed brows. There were numbers above the faces, going from one to ten.
This visual cue was supposed to help me answer that first question, “What is your level of pain, right now?”
Though the fog, I stared at the chart, as the nurse had directed me to do. I could follow the reasoning—the row of little frowny faces suggesting increasing levels of pain. But I had no clue as to what my level of pain actually was. That I was in pain there was no doubt. That I was still under the influence of the anesthesia was less known to me, if known at all. I think, if I recall accurately from within that fog, I picked the number “4”, since my pain did not seem overwhelming.
With my answer, I became a participant in my own health care, working with the nurse to determine the appropriate kind and the appropriate level of pain medication. I was given a shot in my IV. I don’t recall the name of the medication. The nurse did explain to me that administering the pain medication through an IV would deliver relief from the pain more quickly but would relieve my pain for a shorter time than pain medication taken orally.
This all made sense. I could follow everything.
At the same time, I knew nothing. I knew nothing about pain medication and hardly any more about my own pain, having never had a laminectomy before and having used only a very little bit of pain medication in my whole life—the occasional over the counter ibuprofen or acetaminophen, having only recently begun taking ibuprofen regularly for my inflamed left knee. So, what did I know about helping the nurses to help me to manage my own pain during my stay in hospital?
Hardly anything at all.
Late that evening, I received a telephone call from an old friend who had much experience managing pain medication—double digit surgeries, following a near fatal head-on collision. Calling from the East coast and knowing I had had surgery early that morning, she had timed her call to coincide with the waning influence of the anesthesia. She told me to not be deceived by the anesthesia and warned me to not get behind the curve of the pain that was coming. “Don’t skimp on the pain meds,” she said. Her advice matched that of another friend who had recently undergone prostate surgery. I felt grateful for their advice and shortly after her call, when the nurse came to check on me and inquire about my level of pain, I tried ‘5’ at first but found that ‘5’ did not justify increasing the strength of my medication. So, I said, “OK, how about ‘6’ ”?.
Now, I could have two Percoset 5 pills, orally every four hours. I was set. The Percoset did do a better job relieving my pain, although it meant that I slept for three or three and a half hours of the four hours between medication. That was basically fine with me, since I could come alive if I had company. But primarily I slept and tried to change my position—to roll from side to back and from back to side, first one way and then the other—each time I woke up.
I found eating in an absolutely horizontal position was not nearly as difficult as I had imagined and I felt progressively more forgiving of the Advice Nurse who had told me, when I asked, prior to the surgery, about eating while lying flat, “When you get hungry enough, you’ll eat,” she had said. That seemed a little harsh to me at the time and I asked her if she had ever done it. I don’t recall her answer. I had no trouble eating. I ate everything offered to me. My tray was clean each time it went back to the kitchen. I thought this was prudent if I wanted a quick recovery and I had an almost childish pride in leaving nothing on my tray—my Mom would have been proud to see her little Billy, at near 70, was still cleaning his plate.
So there I was eating heartily and taking two Percoset 5 pills every four hours—on cruise control to recovery.
I weathered the 72 hours of flat bed rest, although my back was ballooning a bit, indicating some spinal fluid was escaping even as I lay prone. Nevertheless, it was time to begin moving and after my urinary catheter had been removed and I could raise the head of my hospital bed, I began, very gingerly, to roll to my side, swing my legs off the edge of the bed, push myself into an upright position, lower my feet to the floor and holding tightly to a walker make my way slowly, quite slowly to the bathroom.
Bowel movements had begun to be a concern for the nursing staff as I had not had one since well before surgery. Actually, it had been a concern all along, because as the nurses explained to me, one side effect of Percoset is constipation. Right from the get-go they offered me regularly a large pink gel capsule of Colace, docusate sodium, which they told me was a stool softener that would counteract that side effect of Percoset. Not being fond of taking medication, I had initially refused the Colace but soon did not have the energy to do so and began to accept it when offered. At some point the nurses began to suggest milk of magnesia or a rectal suppository.
Once again I was called upon to make a decision, to participate in my own care. What did I know? Not much.
My memory fails me on the actual chronology but I do remember choosing to have a suppository, having never had such a thing shoved up me before and imagining it was better than milk of magnesia, about which I had some very indistinct negative memories from childhood. I came to regret that choice when the result seemed to be severe abdominal cramps and no bowel movement. I thought, “Nobody told me about the cramps.” Next, came the milk of magnesia.
I did move slowly toward the bathroom, as I say, but by the time I had managed to place myself on the toilet, the combined forces of gravity, of body movement and of one or both of these chemicals introduced at either end of my digestive track produced explosive results.
Cheers all ‘round.
Even as I was trying to manage my pain and to get my bowels moving, there was another chemical operating in my body. The nurses would regularly inject (twice a day, perhaps? I can’t remember for sure) Pepsid into the IV needle anchored to the top of my right hand with that super-stick transparent medical tape that leaves its adhesive stuck to the skin long after the tape has been painfully removed. This injection, the nurses told me, was for my stomach. It wasn’t clear to me exactly why I needed something for my stomach.
That only became clear after another day.
To get my bowels moving regularly, on their own, without chemical intervention, I was encouraged to get on my feet and walk around. This was no easy task but I did manage, accompanied by a patient care technician (PCT), holding tightly to my walker, to make it out the door and down the hall, hang a double right and push all the way to the elevators and back again, leaving me shaky, with a sizable headache, the likely result of the leaking spinal fluid.
No bowel movement.
I had been scheduled to be released on the third or fourth day following surgery.
It was already the fourth day. I had sat up, out of bed, before breakfast for thirty minutes or so and later in the day I had taken another walk through the hospital corridors, stronger but still shaky, my head still pounding by the time I was done. I was still eating heartily, my body still filled with the chemical cocktail—Percoset, Colace and Pepsid. Not long after dinner as I sat up in my hospital bed, I suddenly experienced a flood of saliva and knew that sinking feeling of approaching nausea. In spite of my efforts to relax and breath, I was heaving, uncontrollably, within seconds, filling the kidney shaped, yellow plastic pan with what looked like my entire undigested dinner, my whole lunch and maybe even my breakfast before the dry heaves set in and continued for what seemed like an eternity, each one sending a shock wave down my spine, like a jack-hammer, rendering the Percoset virtually useless.
Mercifully the dry heaves did finally subside but I was left shaken and weakened and in a continual state of nausea that took me two days to overcome, only very gradually able to eat again, little bits at a time.
I knew it was the drugs.
“I’m done!” I said.” I’m done! No more Percoset! I’m done with pain meds! I’d rather have the pain than this!”
The result of this set back was a delay in my ability to leave the hospital. I stayed in hospital for an additional three days—seven days altogether before I was able to go home.
I had approached my surgery knowing, in some sense, I was not so much a person as an object, to be processed, efficiently, cost effectively, within this industrial model that is our health care system, knowing, then, the loneliness of being my own advocate and so calling attention to myself—
“Look! It is me! I am here! It may be ordinary for you but for me there is nothing ordinary about spinal surgery and hospitalization. I have written my Advanced Health Care Directive. I have written my Last Will and Testament!”
I didn’t actually say these words to anyone, but it was from this emotional space, as the date of my surgery approached, that I wrote an autobiographical collage—a mix of verse and essay—in which I tried to share who I am with these people who would be in charge of my care, that they might know something of this person who would willingly, though nervously, place himself into their hands. I distributed half-dozen copies to my surgeon, the Advice Nurses and the other physicians and providers who had already cared for me within this system. Then as I went into surgery I had a copy attached to my blue folder that contained my medical chart and so traveled with me following the operation. I urged everyone I saw to read it. I needed to assert my humanity into the process. I needed to say, through my sharing—
“I am more than a number—KP #01491425. I am a person with a life, with joys and with sorrows, just like you. We—you and I—are in a system, yes, an industrial model, yes, that must be efficient, yes, but let’s not forget we are people, we are human beings, you and I—not numbers, not objects.”
Again, these are not words I used, though I did preface my autobiographical collage with these sentiments and an acknowledgment that it would take effort on all our parts to humanize our shared experience.
As my own advocate, I worked hard to prepare for surgery.
I read everything I could get my hands on, only a portion of which came from Kaiser Permanente’s brochures and website, including the dangers and the risks. I searched the web and visited sites like The Mayo Clinic and The Cleveland Clinic and others and read about lumbar laminectomies. I found instructional videos of the actual operation which bore little resemblance to the cartoon drawings in the brochures, though the brochures did help me visualize my own anatomy and what was necessary to reach the tumor growing inside my spinal cord dura—the physical removal of bone.
The video brought home to me that my anatomy was not so different from that of a pig or a cow and what would happen to me would not be too dissimilar from what happens in a butcher shop when the butcher is going after the tenderloin. In my case, the flesh would be sliced open by a skilled surgeon, pulled back with clamps, which would allow him, then, to remove the necessary parts of the vertebrae (L2 and L3) piece by piece, with surgical bone cutters, which looked a little like shiny stainless steel or chrome wire cutters or pliers. There was blood. The flesh looked like flesh. The neat straight lines of the cartoon drawings did not capture this part of what I was going to experience.
I needed to know these things and more.
Though I monitored myself closely and was aware always of how busy everyone was, I talked to Advice Nurses and peppered them with questions about what I could expect, I sent e-mails full of questions to my surgeon and met with him face to face on two occasions. At our second meeting I came prepared with a list of twenty-three questions and even so, I found myself wanting to just chat with him, to take his measure, so to speak, as a person, not in a judgmental way but in a human way, wanting to connect to this man who was going to cut me open and possibly paralyze me for life—that was a very rare and remote possibility but a possibility he acknowledged that did exist. I didn’t get to all twenty-three of my questions but I did learn he had three children and at his youngest son’s urging had just finished reading the seventh volume of the Harry Potter series—not his favorite read, he confessed.
I was careful with my diet. I stopped taking the ibuprofen I had been taking for my knee. I stopped taking my omega-3 supplement. I worked on strengthening my core stomach muscles daily. I listened several times a day to the guided meditation and visualization CD that Kaiser had given me. I cleaned up my e-mail—un-subscribed from thirty or more political and ecological and social justice communications that I normally scanned and sometimes acted upon—so my InBox would not be flooded with hundreds of unread messages by the time I returned home. I did write my Advanced Health Care Directive and my Last Will and Testament. I sent out personal e-mails asking all of my friends to hold me in their thoughts. I did everything I knew to do.
But I did virtually nothing about preparing myself for post-op.
Even with all this focus I could barely wrap my mind around the actual experience of surgery, much less think about post op or longer range recovery. I had read the short descriptions in the brochure and on the website but waking up slowly from the anesthesia, I was in a whole new ballgame—one I had never even played before.
One might say, the heaving was the price of empowerment or, perhaps, the dividend of ignorance.
I had chosen the Percoset.
No one forced me to. But I had no idea what it was nor how it worked in my body nor what the possible side effects might be—aside from the constipation. I learned by experience that my tolerance for two Percoset 5 tablets every four hours was roughly three and a half days before my body simply rebelled. I can’t explain the biology nor the physiology of why I threw up. I do know I am a biological organism and Percoset is a chemical compound designed to relieve pain. How it does so, I don’t know. Why it causes constipation, I don’t know. What else it does to my body, I don’t know and so forth.
What I do know, after the fact, is that I should have managed my pain medication better.
My guess is I would have been better served and might have avoided the trauma and setback of the nausea, shortened my hospital stay and saved 40% of the cost, if I had either changed my medication or if I had begun to reduce the dosage after a couple of days. Neither thing occurred to me nor was the idea ever mentioned, as far as I can recall—not by my friends, nor by the staff, nor in any of the written material. In fact, the brochure on Lumbar Spinal Surgery had this to say about “Controlling Pain” during recovery:
You will likely have some discomfort after surgery. Your nurse may give you pain medication. Or you may have a PCA (patient controlled analgesia) pump. The pump lets you give yourself small amounts of pain medication. Some pain is normal even with medication. But if you feel very uncomfortable, tell your nurse.
That’s it. End of story—not to worry.
But, what if the paragraph had read something like this?
Surgery is a wound to your body. Wounds are painful. You will have pain after surgery, though individuals do vary widely in their tolerance of pain. The nurse will show you a pain chart and ask you to identify your level of pain. She or he will then choose for you one of several pain medications that your surgeon has prescribed. Each is a chemical compound that will lessen your pain but will also have other effects, like drowsiness or constipation or nausea.
After surgery you will still be under the influence of the anesthesia for a number of hours. It is important to start the pain medication before the effects of the anesthesia have totally worn off. You may find, however, as the effects disappear that you will need to increase the strength of your medication. On the other hand, as you get further away from the surgery you may want to begin reducing the strength of your medication, which will, in turn, lessen any negative side effects of the drugs.
Even in my state of focusing laser-like on my preparation for surgery, I imagine, if I had read something like this, it would have at least given me some concept of the need to manage pain medication, some concept of life after surgery, a hint that recovery will be a much larger part of my experience than the relatively brief experience of surgery.
From within the system the providers necessarily have a different point of view from that of the patient.
They are doing a job.
They are providing a service, day after day, to a constantly changing population of people like me— hundreds, even thousands, exhibiting a multiplicity of conditions and needs. I am but one of these, a single, tiny blip on their radar—here and gone in the blink of an eye. The sheer numbers and the variety of needs demand efficiency. Being efficient in the delivery of high quality care, minimizing errors and mistakes, requires working within carefully thought out protocols, so everyone is on the same page, everyone knows, more or less, how to behave in any given situation.
When the nurse first asked me what was my level of pain, she was working within such a protocol. She had no way of assessing my level of pain without me telling her. That much seems obvious—straight forward. She points to the pain chart. I think for a minute and say, “Level 4.” Done. She looks at my medical records on the computer and determines which of the three prescribed pain medications is appropriate for Level 4, administers the medication, records the action and moves on to the next patient.
This is a protocol that allows for efficiency and it is likely to not be as cool and sterile as my short description suggests—more chatty with smiles and friendly exchanges, even as I, the patient, am in some pain. But it is a limited interaction, analogous, perhaps, to the short paragraph on controlling pain in the little brochure—not quite so devoid of information but certainly falling short of helping me get an overview of my recovery and the role pain medication plays in recovery and how I might manage the medication—acknowledging the individual nature of patients’ responses, including side effects and the normally decreasing need for medication, the further one gets away from the date of surgery and so forth.
Had I been provided with this information before surgery, having it repeated, in person by the nurse, would have likely called it back from my memory.
This, of course, is hypothetical, I have no way of knowing, for sure, that this would have changed the outcome. I may have become nauseated even if I had changed medication or reduced the quantity of the drug I was taking. But, as is well known, meaningful engagement is empowering, allowing one to not only feel seen but in actuality to be seen.
The story of my experience throws into stark relief the difficulty of trying to figure out how to humanize these experiences, both those of the patients and those of the providers, in our modern Western medical model.
One problem is the total dependence on pharmaceuticals—the use of chemical compounds to manipulate biological organisms—a dependence that pervades both the broader culture—witness the ubiquitous drug advertisements on television, for example—and the internal culture of medical schools, of nurses’ schools and consequently of outpatient care and hospitals, a dependence that can and does achieve positive outcomes but not without cost and not without blowback. The second problem is the industrial model itself that is our health care system—which may or may not have the goal of making a profit. In either case it is a system designed to provide highly specialized care to massive numbers of people, efficiently—to process and then to discharge a patient as if the hospital were a factory and the patient the product.
To humanize is to make more human, to infuse more human qualities into the experience, from both sides, allowing both patient and provider more opportunities for meaningful engagement and more opportunities to be more fully human—not simply a patient nor simply a provider but people temporarily engaged in a cooperative, common pursuit.
On the patient side, as one facing major surgery, even given my best efforts, I had very little grasp of the full extent and sweep of the experience I was facing—from my own preparation (two months), through the surgery itself (three and a half hours) and on then to the largest part of the whole experience, my recovery from the surgery (projected six months).
I was anxious. I knew that.
I also knew that even my best efforts to inject my own humanity, to connect on a personal level with my care givers did not eliminate my anxious feelings. They were feelings born of reality—I was going to put myself, my entire life, my whole body into someone else’s hands—necessarily, for sure, but a necessity that made me very nervous. This was no ordinary experience for me. This was huge—as huge as anything I had ever experienced and I’m nearly seventy years old. My age, in fact, was one factor that made the whole experience so huge—how would my aging body handle this trauma, even if the surgery was successful?
I needed that part of my experience to be recognized and held in the consciousness of my care givers—not necessarily an easy thing to do when working as a care giver within an industrial model processing hundreds or even thousands of patients just like me in short periods of time.
I imagine my needs in this regard are not so different from anyone else’s facing major surgery.
But beyond this basic recognition and validation, I needed real help in preparing for this extraordinary experience—help beyond the website and the brochures, the e-mails and telephone conversations with advice nurses and the face to face meetings with my surgeon. I needed a forum—perhaps an all day workshop or a series of three classes in a comfortable, unrushed setting, the purpose of which would be both to give the participants and overview of this whole experience—how to prepare for the surgery, the actual surgery itself and how to manage the entire process of recovery—and then to allow for any and all specific questions about the particulars. The beneficial effects of a group setting and a relaxed, unhurried atmosphere are hard to over estimate.
It might be similar to the effects of birthing classes for expectant mothers that generally lead to improved outcomes, fewer surgical interventions and briefer hospital stays. And working from that model I can imagine a doula kind of person providing individual support throughout but especially in the critical periods just prior to and immediately following the surgery—a person carefully integrated into the existing structure—not at odds with it but simply helping it function more smoothly and efficiently. In my case, perhaps, shortening the stay by helping me manage my pain medication better.
On the care giver side, I was simply business as usual, one of a steady stream of patients coming in and going out. My surgeon had performed this very procedure somewhere between 100 and 200 times and had been doing these things for well over a decade. His particular area of expertise, in fact, was spinal surgery. He was head of the entire department and publicly stated on his personal website his intention to have the department be the premiere neurosurgery department in all of Northern California.
I did find this reassuring on a cognitive level and in our two meetings which may have been thirty minutes total, perhaps a bit more, he did answer all my questions—the ones I had presence of mind to ask. I did not doubt his competence, nor his skill, nor his knowledge and I was grateful for those qualities but I wanted to meet him on a level playing field, the field where he and I were the same, where we each could acknowledge and appreciate and embrace the other’s reality and feelings, where we could minimize the inequalities, the self-perpetuating hierarchical nature of the doctor/patient relations that exists inside this system and the constant pressures of efficiency, of time and numbers—all conditions that left me feeling insignificant, even a bother, as I worked within myself to counter these powerful cultural and structural forces—forcing myself to assert my humanity, to insert it into the process.
This is life. There are no guarantees.
I can and do imagine the difficulties of working within the system—the pressures of being a neurosurgeon and an administrator, a father, a husband and colleague and friend and citizen. I do appreciate beyond measure his attention to detail and his ability to focus and his skill to perform successfully such intricate procedures. I can and do imagine the difficulties of nurses, technicians, administrators and other service employees trying to do a good job within such a structure.
I do know how relieving it is when someone lets you know they understand how you feel and you know they do know. Then, it becomes, we—we are in this together. And this kind of exchange and the resulting lessening of anxiety will certainly save emotional energy and is likely then to save time, to actually improve efficiency.
The effort demanded, then, from the caregiver side is not so different from the effort needed from the patient—each needs to be present in the moment, with themselves and so, then, with each other, to be neither deadened nor intimidated by the structure, the hierarchies, the constant flow of patients, nor to be fearful of seeing each other as the same—as individual people, even as each sees how different this shared experience is for the other.
But we live in the real world.
People have their limitations. Personalities are different. Aptitudes are different. Consciousness levels are different. The demands within the system and within each individual life are often extraordinary.
So just as patients need support, need help to negotiate their own experience within the system, providers working in this very system—the doctors, the nurses, the administrators and others—need regular assistance in helping them to not be deadened by the structure, the hierarchies, the numbers, the protocols, the constant need for efficiency and the ever increasing presence of technology.
How many times, for example, have nurses or doctors paid close attention to a computer screen and failed to engage the human being right there in their presence? It requires work, effort to transition from the kind of focus demanded by the reading of a computer screen full of data to engaging a needy human being lying before them or behind them or to the side of that screen, to switch from this cognitive mode to the realm of human connection, of eyes, of facial expressions, of voice tones—a realm not devoid of cognition but infinitely more complex and subtle, this realm of the human heart that is the very heart of medicine.
This support for providers might take a number of forms.
Certainly medical schools and nursing programs need to devote a larger portion of the curriculum to classes and practical experiences that focus on the foundation of medical care, the desire to help those in need, which can only be effectively realized in the arena of human relations—people connecting with each other, recognizing that even among the most technical of specialties, the relationship is always the foundation of the experience—if real connection is made between patient and provider at what ever point in the process, at whatever level of care, the likelihood of positive outcomes increases.
Beyond the medical schools and nursing programs, in hospitals, in the wards and among the various professional associations this emphasis on human connection needs to continue with regular education and training in the human skills of listening, of communicating and of community building within bureaucratic structures, exploring how to humanize the work place, how to insert soul into an institutional—infusing not only the patient/provider relationship but all internal relations, as well—among doctors, nurses, technicians, administrators, among all classes of employees and across all classes—so each experiences the other’s humanity, walks in the other’s shoes and is excited to be a part of the process, deeply fulfilled by the daily interactions.
There are many proven ways of moving in this direction—Scott Peck’s community building, for example, described in his book, The Different Drum: Community Making and Peace (Simon & Shuster) or David Whyte’s work within corporations detailed in his book The Heart Aroused: Poetry and the Preservation of the Soul in Corporate America (Currency 1994). Some may already be in existence within the Kaiser system. But we know there is not now, nor will there ever likely be enough effort in this direction of humanizing our medical delivery system. The same can easily be said of any system in our modern industrial society—the criminal justice system, for example—some of the problems of which are detailed in Bob Robert’s book, My Soul Said to Me (Health Communications, Inc.).
This is the broad sweep but if the overall culture within the institution is one of exploring how to humanize the daily experiences (among the whole staff with each other and among the staff and their patients) and so contribute to greater efficiency and better outcomes over all, then smaller ward specific or unit specific solutions will emerge from the conversations taking place on those wards or in those units.
Take, for example, one part of my experience as a patient preparing for surgery. After I had met with my surgeon for the second time, ten days prior to the operation and had asked him all those questions and had chatted a bit, I visited the advice nurse, watched a video, signed some paper work and went over check-in procedures. As I was ready to leave she handed me a CD called Preparing for Successful Surgery by Belleruth Naperstek. I have told you before that prior to surgery I listened many times to her five-track guided meditation and visualization monologue which is accompanied by music. I had never done that sort of thing before and I have no way of knowing if it has been effective, aside from my surgeon’s observation, six weeks out from the surgery, that I was ahead of the curve in my recovery. I still listen to the last three tracks on the CD daily, sometimes several times in a single day when I lie down to rest or to take a nap.
It occurs to me that guided meditation and visualization scripts could be written, recorded and distributed among care givers—both general in nature and targeted to particular wards or units or to specific groups. In the same way that the surgery preparation CD focuses on helping the patient develop ways of thinking and feeling that encourage healing, these CDs could focus on helping the care givers to be in touch with themselves and to then be able to bring that humanity into the work place with their colleagues and their patients.
So none of what I am saying is new. Nothing I am saying is earth shaking.
That I am here, today, writing this essay, free from the nerve pain caused by the small schwannoma growing within my spinal cord dura, well ahead of the curve, according to my surgeon, in my recovery, speaks both to the incredible and humbling benefits of the system and to my own dogged perseverance to wring the best I can wring out of this old body and this life that has been given to me.
The least I can do, after expressing my gratitude, is to call attention to the limitations of the health care system that I experienced personally. I do so in the hope that the internal self-examination that I know goes on for how to improve the delivery of high quality medical care to more and more people, until everyone is afforded the right to that care, not lose sight of the human foundation that underlies the calling to work toward the alleviation of human suffering. I wish to encourage each person within the system—doctors, nurses, patient care technicians, administrators, food workers, house cleaners and others—to work—and it is hard work, though amazingly fulfilling and energizing—to bring soul to their own efforts and by so doing maximize the beneficial effects and minimize the harmful effects of the system within which they labor daily.
I close with this short story, by way of illustration.
Erna Aquino moves
through the sixth-floor-South neurosurgery ward
with a relaxed ease, a straight forward, simple dignity
that speaks of one who knows her own heart—
lover of language and of people,
tall, iconic, Filipina,
rich black hair falling below her broad shoulders,
framing a flawless copper countenance
whose precise, chiseled features
speak the range of human feelings
held in that heart of hers,
given freely, then,
to those for whom she cares—
this Patient Care Technician
making human inside the industrial model
where she spends her days.
Erna happened upon me,
fully clothed for the first time in seven days,
as I weakly made my way from room 616,
taking small slow steps, toward home.
“Where’s your walker?” she asked.
“Dunno,” I managed.
“Wait here. You need a wheel chair!”
I obeyed—having no energy to be foolish.
So Erna sat me down in that black wheelchair
and with my love by her side
wheeled me toward the central corridor.
I know now
that irrepressible moment
when everyone suddenly burst out singing 1
only this time there was no battlefield
and this time it was just me,
as surprised as everyone else.
As we paused at the intersection
and I could see the entire ward before me,
all these people who had cared for me for days,
I suddenly burst out singing, began belting out for all to hear,
with an energy from somewhere beyond myself . . .
Thank you for these nurses, Spirit!
Thank you for the nurses!
Thank you for these nurses, Spirit!
Thank you for the nurses!
These beautiful, these beautiful, these beautiful nurses!
These beautiful, these beautiful, these beautiful nurses!
This chant, Thank you for this day, Spirit,
is a part of me,
form having sung it over and again
with my brothers and my sisters
of the Noah Project and the Noah Co-ed evenings,
this uplifting chant of gratitude
with its simple melody and addictive rhythm,
this gift to the world from dear friend Doug Von Koss,
that sower of song and of beauty,
this chant had been my companion
late at night as I lay in my hospital bed
or at mid-day or any time of day
when it might suddenly be on my lips
breaking through even the haze of pain medication—
Valery had heard me singing from my bed—maybe Kasthuri, too.
Beyond that moment in the corridor,
Erna, accompanied by my June,
wheeled me to the elevator,
down to the ground floor,
out the automatic doors
to the valet parking
where the three of us awaited Adrian’s van
which was to carry me home.
Tumorless, I sat,
filled with gratitude for all,
despite my weakness and my pain,
gratitude, at that moment, especially for Erna Aquino
whose spirit had eased me through my stay,
through this transition toward home
and who at that very moment had my back.
1. Everyone Sang, Seigfried Sasson
April 10, 2011