This post is going out on my birthday, my 73rd
I’ve been re-reading René Dubos’ marvelous book Mirage of Health (highly recommended), and reflecting on my own path these past 9-1/2 years since a hemorrhagic stroke the morning of September 13 2014.
Reading this over, this has ended up being a bit of a rant about my situation, but I’d hope it might touch on a topic of more general applicability.
Susan Sontag began her lovely essay Illness as Metaphor with
Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.
I want to describe not what it’s really like to emigrate to the kingdom of the ill and to live there, but the punitive or sentimental fantasies concocted about that situation; not real geography but stereotypes of national character. My subject is not physical illness itself but the uses of illness as a figure or metaphor.
I highly recommend a careful read for anyone providing or receiving or knowing anyone in need of receiving healthcare, or who might in the future; I wish here to address another point - what it’s really like to emigrate to the kingdom of the ill and to live there.
My life was upended in an instant; certainly creeping up on me unannounced for some time as inflammation of cranial arteries, an expression of the autoimmune disease ankylosing spondylitis which had plagued me in other ways for many years, but manifesting suddenly on that morning 10 years ago with my left side abruptly giving out, falling on the hard marmoleum of the kitchen floor, attended by my loving & devoted dogs (Mary had shortly before left for a backpacking trip of several days on Mt. Jefferson). The bleed included my right amygdala, that portion of the brain responsible for fear (of which the rock climber extraordinaire Alex Honold has a rather remarkable one), so the experience was remarkably peaceful over the following 30 hours on my kitchen floor until discovered by my son, visiting to pick the last of the years’ tomatoes. (No surprise that the Arnica (says he is well when very sick) my son gave me for a bruised hip spared a hole in my skull & robbed the neurosurgeon of a mortgage payment or two).
My largely DIY experience in the “kingdom of the ill” began with lying in my ICU bed waiting for the neurosurgeon to drop in, with my cranial CT displayed on a wall-mounted monitor, displaying a cotton-ball-sized opacity (bleed) in the midbrain, corresponding to the right superior thalamus, basal ganglia, & 3rd ventricle; reading this myself with my modest training in radiology but extensive experience in rehab and family medicine, recognizing the serious implications of such a neurologic lesion.
My blood pressure had been modestly elevated in the “mild benign hypertension” realm prior to the stroke, but in response to the stroke was outrageously high, requiring aggressive management, likely as I’d fried the corticobulbar tract of upper motor neurons innervating brainstem nuclei regulating blood pressure. One of the antihypertensive drugs selected by my treating neurologist was the “angiotensin-converting enzyme inhibitor” (“ACE inhibitor”) Lisinopril, known to inhibit the degradation of the pro-inflammatory peptide bradykinin. The back & neck pain of my longstanding ankylosing spondylitis was severely aggravated, interfering with my early involvement in physical rehab, beginning the fragmentation of my care among specialists; my neurologist understandably was flummoxed, but my physiatrist, dealing with physical medicine and rehabilitation services, similarly felt out of her wheelhouse, & both recommended bringing in a rheumatologist, who recommended the injectable monoclonal antibody targeting interleukin 17A, Ixekizumab, at $7,000/dose (no, I can’t pronounce that either; sounds like the name of an ancient Mayan city or perhaps a fossil pterodactyl). 5 minutes of research on my laptop using the hospital’s internet connection confirmed my suspicion that the exacerbation of my pain was an adverse response to Lisinopril, which, although reducing my blood pressure, was likely contributing to inflammation not only of the ligaments of my spine, but to the arterial wall inflammation that led to my stroke in the first place (drugs have no side-effects; they have effects we intend & desire, & effects we don’t intend & may or may not welcome). Replacing this with another medication resulted in prompt resolution & my ability to engage in physical rehab, & the rheumatologist’s incredibly expensive recommendation, riddled with its own potential adverse effects, became unnecessary.
Physical therapy was an uplifting experience. My physical therapist during my inpatient rehab stay following time in the ICU and neuro floor, Robin, was a cross between an incessant taskmaster & an angel, who was able to extract me from bed on my worst days & help me relearn walking, first inevitably into the left-hand walls of the hospital corridors (I had left hemispacialagnosia, no ability to comprehend anything in the mysterious left world; I’ll talk about that later), and tended to list into that unknowable left; later practicing climbing & descending on some mocked-up steps. Once I could identify the elevator & figure out which buttons to push (I needed to walk to the end of the corridor, turn around, & walking back, find them now on my right; and recognize that the half-moon-shaped button marked “ by” was actually “lobby”), she took me outside with a walker for a glorious walk around the hospital; at least I was told it was around the hospital; we took a counter-clockwise route, so the building was lost in that mysterious world of the left).
Mary & I were told by my neurologist & rehab medicine attending physicians to expect a “full recovery,” with no further explanation; perhaps intended to be encouraging, but probably the cruelest proclamation possible for one who has landed permanently in the “kingdom of the ill.” We both could have used a more realistic appraisal even in those early days.
After discharge, the restoration of walking continued with a heated pool, and an inventive PT creating a mock up of a trout stream with carpeting over a scattering of wooden blocks, having me negotiate the uneven surface, waving a broomstick in place of a fly rod. I returned home with a walker, a 4-footed cane, a bedside commode, and a bell to ring for service, all quickly discarded by Mary against my wishes but in service of increased function.
Sadly, another collision with fragmentation of care; Physical Therapy addressed my motor function from the waist down; my upper extremities fell into the domain of Occupational Therapy, as did cognitive (“executive function”) deficits, with services far less developed or inventive; my voice & into Speech/Language Therapy; my left hemispacialagnosia, so difficult to describe & misunderstood by the medical community, with only cursory attention in Speech & Language therapy. Insurance coverage for Occupational therapy could either cover attention to my hand & shoulder or cognitive deficits; not both over a given time period, with new insurance approval, often taking months, required prior to switching emphasis. I’m reminded of John Prine’s song
Please don't bury me
Down in the cold cold ground
No, I'd druther have 'em cut me up
And pass me all around
A neuropsychologist I found 2 years later (you’d’a thunk that’d have been an obvious referral in discharge planning, but no - another piece of DIY research in desperation) told Mary & I in work together that our path - both my rehab & our negotiation of the aftermath of the stroke as a couple - involved “a trek overland without a map.” You’d think that a map might’ve been available, but no - medical science might’ve been able to preserve my life at the time of the stroke, but lost interest in the “kingdom of the ill”beyond the immediate crisis.
Disease is about the individual of course, but nothing in this world is of independent origin. Disease - & particularly an extended journey in the “kingdom of the ill” - is a systems issue as well, involving the partner, the family, the local & extended community. I participated, about 2 years out, in a comprehensive brain injury program oriented somewhat more to traumatic brain injury than to stroke-acquired brain injury, tho many of the issues overlap. Services for partners involved only an optional once-weekly lunchtime peer support group. It required great effort to find a rehab-, neurologic deficit-, & attachment-issues aware psychotherapist who could work with us together, waiting on each of several attempts several months for a new-patient opening and insurance approval from someone at the insurance company with a B.A. in public health administration.
I ran into vultures gnawing on the bones of the desperate; 2 poorly-trained & ill-equipped psychotherapists I’d waited months to see with overstated & deceptive credentials offering services to the brain injury community who turned out to be disasters, a visual therapy practice that appears to have been an “insurance mill” courting business from the brain injury, ADHD, and autism communities with “one size fits all” computerized assessments & stock therapies that lacked a basis of evidence in effecting change for these vulnerable and often desperate communities. I was backed into the corner on several occasions of needing to ask my insurer to deny coverage and to threaten legal action for any efforts to collect, feeling compassion for those who might not recognize they were being taken advantage of or not be in position to respond to having been taken in.
The Big Piece I wish to emphasize, has been the transition from early rehab efforts intended to effect that promised “full recovery,” to the recognition that I need to learn to negotiate this “kingdom of the sick” in which I now reside. Perhaps “sick” is not the best term given its common implications; a friend gave my a large pin that reads “Embrace Neurodiversity;” perhaps intended for a different population, but applicable as well to my situation.
In the stroke, I fried:
The coordination of the orchestration of complex movement on my left side (especially of my left hand & shoulder girdle); I used to have dreams of filleting my left shoulder & arm off with a chainsaw; relating this to my neuropsychologist while assuring him I was not about to follow through in real life, he laughed & replied, “I don’t think you could pull the starting cord.”)
The ability to coordinate respiration with phonation, and the complex orchestration of muscles of phonation (voice production). My stroke did not involve the speech centers of the brain, so I had no aphasia, but I have difficulties with the mechanics of voice and loss of vocal prosody.
The upper motor neurons of the corticobulbar tract, affecting brainstem functions involving
Regulation of blood pressure
Regulation of respiration
with over-involvement of the accessory muscles of respiration, contributing to chronic pain from these
Disturbed vagal activity in management of, & recovery from, psychoemotional stress
Dorsal vagal activity affecting social engagement reflexes (facial expression, conversational orienting, vocal prosody & expression)
Restorative sleep; sleep is typically fragmented in 2-hour blocks, but even on the rare occasion that I get an uninterrupted night of 7-9 hours, I wake unrested, as if I’d had no sleep at all
Mental alertness - described as “brain fog,” which makes me think of Tom Hanks in Joe vs. the Volcano; I constantly feel as if it’s 4pm following a busy call night back in my residency days, or as if I’m just getting off a transcontinental red-eye flight.
Spontaneity of everything; of the mechanics of gait, for which I need to consciously orchestrate each movement; of the coordination of grasp with reach; of phonation with respiration; of smiling when greeting a friend; of remembering to elevate my eyebrows to express interest; to engage in any activity of self-agency.
My 40-year marriage due to all of the above.
I was frequently asked to rate my pain from 1-10. My neuropsychologist recommended responding “1,” gesturing with a middle finger; with the qualification that this needed to be the middle finger of my left hand.
Perhaps early prediction of “full recovery,” tho clearly unrealistic, served in the short term to allay despair & encourage efforts in rehabilitation; I was deluged with stories of neural regeneration & neuroplasticity, and experienced some; but it was a setup for deferred disappointment, and delayed my eventual efforts to reorient to accepting & learning to negotiate my deficits.
Several well-meaning naturopathic students & colleagues sent me inspirational anecdotes & YouTube videos describing “Stroke as a Spiritual Experience.” & Yes, I did experience the spiritual; particularly if that’s extended to include the ritual of lying on the hard marmoleum of the kitchen floor for 30 hours in a puddle of one’s own urine attended to by one’s dogs (at one point, unable to crawl to the toilet, I attempted to pee in a dog bowl, tipped it in the process; the dogs thought that was hilarious).
Also quite a bit of the “If life gives you lemons, make lemonade” platitude; which ignores the bit that lemonade requires quite a bit of sugar, water, a large pitcher, a spoon, & most importantly (here’s where the metaphor really breaks down), a recipe. Much as I’ve tried, I have not been able to find a Julia Child, Jaimie Oliver, Mary Berry, or Stanley Tucci of Life After Stroke.
I fall back on that old medical rudeness of “you’ll just have to learn to live with it.” This is very often true, but it’s one place where Medicine really fails. Contemporary medicine - and I’ll include homeopaths here - is pretty good in the immediacy of disease; I reflect particularly on my colleagues who specialized in trauma surgery who can bring folks back from the brink of death; similarly, at the time of my stroke, I was brought back from well beyond that brink; but once back into the world in that “kingdom of the ill,” medical care fell flat; I had some docs who listened well, and have managed my elevated blood pressure competently, tho when discussing my hand function with a physiatrist early on, her response was “I have patients who would kill for hand function like yours.” She then went on an extended sabbatical & retired, the first of 5 physiatrists I lost to retirement or relocation. It would seem reasonable to embrace the task of assisting folks to negotiate this “kingdom of the ill,” if only to help out with trail maps and the occasional cairn.
I think I’ve channeled enough of Eeyore in the above; time for some Piglet (one of my most treasured resources is an early printing of A.A. Milne’s books that belonged to my father in his youth). What has been of help in this journey? I’d always regarded the “I like you just the way you are” line in Brigit Jones’ Diary to be rather sappy; but encountering this in real life in the depths of struggles with self-acceptance in, and the impatience of others with, my losses has been profound. Through some miracles of the unexplainable backed by the miracles of social media, an old friend & former life partner from whom I’d been estranged some 40 years found me. She sent Reiki, which is profound in its own right, but of inestimable power when backed by unconditional love. She was able to “like me just the way I am” when I was not sure I liked myself as I’d landed in this kingdom of the ill, and has allowed me to see myself through her eyes, gently & sometimes brutally confronting the obstacles I put in my own way in negotiating the paths through this strange new kingdom.
I’m still discovering my way, but now have a compass and at least fragments of a map. There are regions of this kingdom of the ill that I will never traverse, as well as regions I’m gaining greater familiarity with and discovering as time goes on.
Psychoanalysts are required to undergo analysis before certification; surgeons are not required to go under the knife, rheumatologists are not required to live with painful joints, physiatrists are not required to have experienced a stroke, but someone needs to map out & detail this kingdom of the ill, and those of us working with clients living in this realm need to have an appreciation of its landscape and governance in order to serve as effective guides.
Those of us finding ourselves in this strange new realm are in need of recipes for lemonade.
Profound, as always, and really appreciate your depth & honesty❤️
May peace reside within & without
Dearest Will,
Oh, how this post touched my heart so very deeply! I appreciate you so, so much. The deep authenticity, rawness, and realness in your sharing are truly profound gifts. I have always felt a kinship with you and I have the same feeling reading your posts that I did when I was in class with you at NCNM circa 2006 or so. You have a unique and quite remarkable capacity to interweave humor with tenderness and the whole plethora that is human emotion, all while conveying buckets of complex information in such a comprehensible manner. This is what I always loved so much about your classes: They were like sitting down to an abundant feast, where it was possible to consume so much--while being so deeply nourished intellectually as well as emotionally, and without any indigestion whatsoever. ;) Thank you for being you, I am incredibly glad that you are still with us and I pray that you will continue to shine your light and share your gifts with us for a while to come. Along the way, may you be at peace, may your heart know joy and love, and may your body rest in ease. I wish I could offer you a hug, or simply sit quietly and share presence with you, perhaps while listening to the rain or beholding nature's beauty, and maybe over a few squares of good chocolate (I remember your fondness for that! :)
With much love and care, I appreciate you so very much,
Mark Bricca