One of the strangest and most disruptive neurologic sequelae of my stroke, was “left neglect.” So difficult to attempt to describe, let me begin with the rather dry, intellectualized description in the WikiPedia:
Hemispatial neglect, also called hemiagnosia, hemineglect, unilateral neglect, spatial neglect, contralateral neglect, unilateral visual inattention, hemi-inattention, neglect syndrome or contralateral hemispatialagnosia (ooh, I like that term, as it is nearly as incomprehensible as the phenomenon itself) is a neuropsychological condition in which, after damage to one hemisphere of the brain is sustained, a deficit in attention to and awareness of one side of space is observed. It is defined by the inability of a person to process and perceive stimuli on one side of the body or environment, where that inability is not due to a lack of sensation.
Now the subjective description:
Lacking yet a name for this, and appreciating only that “a lot of shit was going down” (was this an expression of anosognosia, or is it merely the basic nature of subjective experience?); I could see my neighbor twins Arlie & Boone standing on the huge maple stump in their front yard as I was carried to the ambulance; I somehow knew my granddaughter Brigit was with them as well, but could not see her (she was apparently standing on the same stump, my son/her father later told me), and as I was strongly aware, but to the street side (my left) – not in my left visual field, but in the left of “what was going on”.
The WikiPedia article goes on to describe this:
An important question in studies of neglect has been: “left of what?” That is to say, what frame of reference does a subject adopt when neglecting the left half of his or her visual, auditory, or tactile field? The answer has proven complex.
In ambulance, I was oriented head forward, on the driver’s side of the vehicle, & had a view out a side window on my right, so was able to see Joan of Arc in the middle of the Coe Circle traffic circle at 39th & Gleason; I recall being impressed that an ambulance with lights & siren is definitely the vehicle of choice in a traffic circle, and recall the rallying I felt to this life from Joan perched valiantly on her gilded horse. The paramedics were evidently on my left in the rear of the ambulance, & I discovered later I had a large-bore IV in my left arm; painless at insertion, as I lacked any sensation in that arm, and unaware of any fuss in placing it, as that apparently all took place in that strangely inaccessible left world. The narrow winding pathway out of bardo first appeared to my left as I lay on the ledge in those depths, I was late in discovering it & likely only did so on reviewing my “options,” the abyss from that perspective still more to my left, so placing the pathway, tho still to my left, in the accessible right world. On climbing out the narrowness of this ledge-pathway might have been terrifying, especially with my tendency to veer to / fall to the left (later discovered in consistent wheel-chair collisions with walls & objects in that mysterious left world); my inability to appreciate the precipitous drop-off to my left, with awareness only of the vertical & sometimes overhanging wall to my right, and the right-world half of the path before me, might have made this feasible.
Mary, & my boys during their stay, were at the right bedrail; later I was to use the left side of the bed for transfers to the amazing butt-grabber (a fantastic wheeled device for plucking me out of bed & transferring me to the shower room, radiology, the PT department &c. in my early days), but this remained a mysterious & inaccessible world.
Much later – 17 months following my “incident” – after my left neglect had miraculously resolved (that story later), I read – at the suggestion of a friend – Lisa Genova’s excellent novel Left Neglected, featuring a protagonist dealing with this phenomenon. Much of the description rang true for me, especially with my experiences in the earliest days, and I could identify with many of the strategies the protagonist had used to cope with, and attempt to overcome, this phenomenon. This novel, and the WikiPedia article, go a long way in describing hemispatialagnosia, and I’d highly recommend them both to someone wishing to understand these intellectually. I do so wish that had included my care team. Not to fault anyone – I received good care, by & large, for the issues that were facing me in the moment. & likely was not in good position to recognize & integrate the assistance I’d require later, in moving forward. Perhaps, within the limitations of the medical model, the assistance I was given to cope with & manage this, was cutting-edge. My speech & language therapists emphasized scanning far to the left, to bring text into the center of my visual field. Physical therapy worked with scanning far to both sides while walking, while emphasizing balance with my gaze diverted from direct-ahead; and I began to be able to avoid walking into the walls that are so often placed in that mysterious left world, & to protect the regularly injured toes of my left foot from forceful collisions with the legs of the bed, &c.; this now several months later, after returning home.
Incidentally, regarding returning home – I discovered some secrets to happiness – having two sons, one a carpenter (new, sturdy rails on the front porch steps, one on the right, going up, and the other on the right, going down, new, sturdy banister down the cellar stairs, handrails in the bathroom) & one a chef (self-explanatory, esp. as my new most wonderful family doc was to focus on diet & exercise as the key elements of long-term risk-management); and Sisters – Mary’s lovely sister Nancy, now living stateside after many years an ex-pat & previously a Skype presence in our lives, moved in for several weeks & spared Mary from the day-in-day-out of tending to & motivating me.
The breakthrough with left neglect began happening 10 months after my “incident.” Mary found, & encouraged me to see, a craniosacral therapist (Valerie Vala, LMT). The initial visits were very nice for general energy, mood, &c., but I vividly recall at one early visit suddenly being aware that the light in the room was issuing from a large window to the left of the massage table as I lay on it; and discovering a small wind chime hanging outside that window, in that bizarre left world. Following subsequent visits in the fall of 2015, I recall on my walk south to the bus stop for my short ride home, the colored leaves of the trees across the street in that left world. The access to that left world never lasted very long, an hour or a few hours, & I reconciled myself to brief glimpses of it, focusing on coping with its inaccessibility.
On a vacation in Maine (have I suggested that I have an inexplicable heart-connection to Maine, oh Best Beloved?), devoid of such brief glimpses, I recall sitting for dinner at Moody’s Diner (an occasional break from my obsessively healthy diet is necessary, for pie, as it is well-known that one can die from depression). There was a table of folks “from away” about 20 feet ahead, & slightly off to the left; I could “see” them technically, particularly those in the right-hand side of their booth, but could not incorporate their presence into my actions or general awareness. They were rather animated & loud, as “folks from away” often tend to be; and it was very difficult for me to relax & eat my pie with all the cacophony going about in that inexplicable left world. I ended up putting my pie in a box, to focus on trying to relax & enjoy the companionship of my extended family (who, lovingly trying to understand & accommodate my hemispatialagnosia, were all seated in the right world portion of our booth; I was able to appreciate & relate to the right-world half of each of them, as well as to the right-world half of all the pieces of pie on the table pie, tho without recognizing that their left-world “halves” were being neglected); & ate my pie later, along with some of a beautiful loon-decorated wild blueberry pie I’d made back at the cottage. Pie therapy, underrated at best.
With brief access to the Left World following craniosacral sessions, esp. following attention to my sphenoid, the final breakthrough occurred with a long-distance Reiki session. Lotsa detail that feels a bit too personal to share here, re the who & how, and perhaps that was integral in the magic; but I was able to feel & see the Sender, over my left(!) shoulder, chanting what I later learned to be the Reiki principles in Japanese; at the end of the session I opened my eyes to an integration of the Left and Right Worlds and have maintained that integration ever since.
A couple months later, still revelling in my newfound ability to participate in that strange Left world, we were celebrating my granddaughter’s birthday in a video arcade – an environment close to hell in my best of days. With video games making sudden noises & displays randomly about the room, 3 huge-screen TVs blasting out different channels, I was able to maintain a presence & actually interact with kids & friends. Fortunately across the street is the Tao of Tea, where the wait staff has a collective pulse of 40, & Mary & I were able to recover there with a placid dinner & a Shiboridashi of Jingmai Bai Cha.
I realized – after all had resolved – that, lacking one of the basic functions the right basal ganglia play, of retaining a visual/spacial “map” of the Left World, anything occurring there had been strikingly instantaneously novel – like someone jumping out suddenly from behind one’s back – a constant string of surprises leaping out from that strangely inaccessible world.
Much to be shared about Left/Right, brain lateralization, Dominant/Nondominant, intellectual/feeling, Giving/Receiving; and perhaps this is the Central Story; for another time.