The day after Christmas, Julia had planned to work at home but discovered she didn’t have the password to remotely access her company computer and left to work a full day down the peninsula. I planned to get coffee with my pal Tony, before assembling with Gale & Julia for dinner. After a lazy morning reading in bed I showered after 11am, noticing pins & needles in the heel of my right foot as I stepped out of the shower and went back to bed to wait for the numbness to pass, becoming engrossed in my book.
A few chapters later I got up to use the toilet and my right leg almost buckled under my weight. Surprised, I lurched to the toilet and sat down heavily. When I tried to stand up, my right leg gave way completely and I went down. HARD. The kitchen is the worst room for a fall, with plenty of hard and/or heated surfaces & pointy things to mess you up, but the bathroom is no fun to tumble in either, with many immovable objects bashing me on my way to the floor; sink- WHAM! toilet bowl- WHAM! wall- WHAM! tiles- WHAM! (a tapestry of bruises and sprains told this tale much later). Looking back at the timeline it’s quite possible I was briefly knocked out, but in the moment I felt I had a full grasp on reality and my place in it;
I was on the floor, awkwardly wedged between toilet bowl and sink and when I tried to sit up, half of my body would not respond, as if the connections to my right side had been severed (which was precisely what had happened, I discovered later). When you’re accustomed to using your entire body to sense the world and orient yourself, suddenly having only half your sensing and motor equipment is shockingly strange. It took an incredibly long time to simply sit up, because I couldn’t maintain my balance and would fall over the other way, slowly get up again and fall over the opposite way, and so on. Eventually, I pulled myself somewhat upright, but was afraid to walk or hop, as my leg and arm were useless and my sense of spatial awareness was shot completely. Even crawling was impossible.
The paralysis was not just the obvious stuff – my arm and leg – but all all the obliques, abdominals and back muscles on my right side as well, and it turns out that those muscles are a crucial part of holding yourself upright and adjusting your balance. Even now, after 5 years experience dealing with this battered & often useless body of mine, it amazes me how difficult it is to perform even simple tasks when half my body weight wants a free ride. Back at ground zero for this disability, it required all my focus to simply move; pulling and kicking with my left-side limbs as my right-side hung limp and heavy, like a corpse. After a long period of trial and error I was able to slither out of the bathroom inching along the floor. It was extraordinarily hard work.
To an amazing degree, I was emotionally calm, even though I knew without a doubt that something was terribly wrong. I was in no pain whatsoever, with no clue as to what had happened to my body, but knew I had to find my cell phone and call for help. Where had I left my iPhone? From my worm’s eye view on the floor I couldn’t see it, but hoped it was on the shelf by my bed and slithered over there as fast as I could. While inching along like a slug, my underpants were incrementally pulled down by the carpet. Fate had not only pummelled me to the ground but enjoyed a vindictive chuckle at the sight of this middle-aged, bare-assed man grimly struggling on the floor.
The distance from our bed to the bathroom and back is not far, but a harrowing saga ensued on that few feet of carpet that changed my life forever, all happening in slow motion. A multi-hour surrealist epic, written by Spike Milligan, ponderously directed by Andrei Tarkovsky and starring little old moi in the role of slithering idiot/butoh dancer writhing on the rug. Was I conscious for the entire time, between when subtle symptoms first appeared at 11am, to the onset of full debilitation & that fateful fall in the bathroom, until finally getting help that evening? Hard to say. Although I always felt mentally present and thoroughly focussed, perhaps time was dilated by cognitive impairment from the get-go, possibly heightened by periodic bouts of actual unconsciousness.
I only realised how thoroughly banjaxed I was upon eventually finding my phone (I’ll spare you another long drama of locating it, pulling myself upright and retrieving it from a high shelf). Phone finally in hand, I stared at it.. ‘How do I open this?.. a code.. What is the code? Oh no…‘ My mind looked back at itself, and was surprised to find itself severely lacking, and no longer capable of doing what it could normally do. It is a truly strange experience to reflect on the failings of a mind from within that mind itself. The realization dawned that not only my body but my mind too was in serious trouble, and that my already dire situation was worsening. My time was running out and I was fighting for my life. The calm I felt in the face of this expanding horror surprises even me, as I think back on it now.
I knew that to survive whatever had devastated me I had to operate the phone, but this was such a monumental task for my enfeebled mind that it’s entirely possible that most of my all-day struggle was spent wrestling with my iPhone – remembering my code, opening it, and then figuring out how to navigate from whichever app was already open; ‘what are these tiny pictures?.. icons… for apps.. which one is for messages?’ ..into the message application to open a message thread to JULIA. My will to succeed was strong, but dwindling powers of concentration and memory made the task slipperier than a well oiled eel.
Like a hacker trying to break into a computer while in a burning building swarming with killbots, I finally got a message open to Julia, but had trouble grabbing concepts from my mind, translating them into words, decoding those words into text, and then having the dexterity to type those letters on the teensy digital keyboard.. My cognition was dissolving but still grasped the cruel irony of that moment – after struggling to find this lifeline gadget, my mind was reduced to sloppy quicksand when I eventually needed to use it. In frustration I randomly mashed alphabet buttons, then SEND. Mashed more alphabet buttons, then SEND. Again, and again, hoping that these bursts of incoherent babble would alert Julia.
Julia was by that time already driving home at day’s end. Startled by these texts, she pulled over to call me and I was able to pick up her call. As I’ve mentioned before, my emotional state was surprisingly calm, given the thorough unravelling of my mind, and I explained my predicament clearly and simply. Or so I thought.. What poor Julia actually heard at her end of the conversation was incoherent wailing, as if Boris Karloff’s Frankenstein’s monster had stolen her boyfriend’s phone. Though shocked and frightened, and not even 100% certain where I was by that time, Julia had the presence of mind to first call an ambulance to our apartment before driving as fast as she could to my side, finding me sprawled naked on the bedroom floor not long before paramedics arrived, to hustle me onto a stretcher and into an ambulance. During the ambulance ride I was shot full of drugs, and have a hazier grasp on my memory from this point onward – jarring impressions, resembling those fish-eye shots you’ve seen in movies;
-I’m urgently wheeled through hospital corridors, as overhead fluorescent lights strobe past. People look down at me, barking how many CCs of drugs must be administered, ‘STAT’.
-Being hustled bodily into a cylindrical scanner of some sort, my emotions calm despite feeling as if I’d been inserted inside a jet engine, so TOTAL was the noise.
-I’m in the ICU. More peering, jabbering heads, more rapid commands. I’m a thing. A faulty piece of broken equipment, as engineers discuss how to prevent my head from destroying itself. A fog drifts in and I’m gone..
-I remember coming to awareness in the ICU, with my pal Tony sitting by my bedside watching the TV mounted on the wall. ‘Oh, Rambo, First Blood. This is a good one‘ I slurred; the speech of a man with a swollen brain and only half a face to speak with. We chatted briefly and then the fog blew in again, dissipating my conscious mind, though our conversation may have gone on longer.
There’s a period I have little memory of, and mostly know about from loved ones. Some out of town friends were in San Francisco that Christmas (Tony & Rhode) and along with local friends (such as Derek) they rushed to my bedside. Flying from Virginia, my brother Jo was with me within 24 hours and two more brothers followed from Australia soon after (Rob and then Dom). According to these folk, I was sometimes awake but babbled all kinds of nonsense.. Eyes open, I was somehow not aware. Where was my conscious mind during those lost days? Where was ME? (Perhaps in that place where the minds of dreamers and sleepwalkers go, and drunks who navigate home, unaware?)
During this babbling fugue state, periodically the consciousness of my true & real self would bubble to the surface of an otherwise stormy mind, and I’d be momentarily aware & present, giving me isolated memories from that lost time, including fleeting impressions of visiting loved ones. Though barely sensed through my mental fog, these impressions of LOVE gave me untold comfort, like a lighthouse beacon glimpsed through a storm. I was lost at sea, but began to realise what I was desperately struggling back to, before again being submerged by my fever-dream…
-More glimpses of debating medicos, discussing me.. I was out of the danger zone of more brain bleeds.
As my mind slowly gained more connections to shared reality I was moved out of the ICU and into a nearby ward, where I was tended to by a bearded & tattooed nurse who treated me with great gentleness. The beds were surrounded by curtains, and next to me was a terminal patient I never saw, but could hear. He was cheerful and sunny with visitors to his bedside, but would quietly sob to himself for long hours after they left, as he faced alone the end that was inevitably coming for him.. My mind could barely operate at the time, let alone offer comfort to this poor man, but I still think of him, often.
I was moved to another facility for several months of physical rehabilitation, where I was taught to talk and walk. Eventually, it was explained what had happened to me: a small blood vessel had leaked into my left lower brain, an area called the thalamus, and this rupture caused a stroke, severing connections to my entire right side. I had to be told more than once, because for several weeks after this fateful event I had the mind of a kitten – very little long term memory and my short term memory was non existent, forgetting questions asked of me mere seconds before. Initially, my mind was such slop that I didn’t notice these lapses, but soon became aware, and I vividly remember the anguish of first realising that I couldn’t remember the names of people I loved most in the world.
As my mind began to slowly re-write itself, the knowledge of how utterly broken I’d become was devastating. I was completely helpless, needing assistance to dress, to eat, to bathe, and to use the toilet. For weeks my paralysed throat couldn’t be trusted to swallow, and I was given thickened water so I would not choke. Vision distorted by the brain swelling, I could only see any object from the corner of my eye, but such strange effects gradually passed as the swelling of my brain subsided. The haemorrhage, the ensuing swelling of brain tissue, and steady cocktail of drugs to mitigate that damage, had fogged details after my stroke, but somewhere deep within me the earlier memories were preserved, to be retrieved later, thankfully.
5 years later, I’m still a mess in many ways. My ability to speak eventually came back to me, though with a slight slurring that can make me sound tipsy when sober (and completely shtonkered when merely tipsy). Movement is still a constant struggle, and sadly my drawing arm is thoroughly kaput. I wish with all my heart to be the able bodied man I once was, but must face the likelihood that I’ll henceforth always walk like a drunk zombie with twisted pantyhose.
However, I’m grateful that I’ve progressed from that broken wreck of a man I was on Boxing Day – December 26, 2012. Visually impaired, mentally unmoored, emotionally devastated, physically half paralysed, & financially drained; a man with 220K of medical debt, who’d lost his means to make a living (and dig himself out of his pit of despair). After 4 years of practising to draw with my left hand I’m back working in animation, and although my left-handed drafting skills are only as good as when I was 17 years old, they got me back in the game (after all, it was 17 year old me who got this job in the first place).
A week ago I had a reminder of my harrowing tale of haemorrhaged brains & palsied muscles, when my iPhone battery swelled up like a toad, pushing the faceplate off and startling the staff at the Apple store. They replaced my phone on the spot, and reinstalled its memory from a backup done a few days prior – restoring photos, contacts and everything, except a few days of texts not included in the backup. This process reminded me of the swelling of my own CPU 5 years ago, damaging my own memory chip, the loss of my operating system, and the eventual reinstall of myself. In that case too, some of my own memories from December 27, 2012-mid January 2012 were lost, but the life leading up to my stroke I remember as well as I always did, and that day struggling for my life is remembered with vivid detail.
And yet, the reinstall of my phone worked because of the external backup, but where were the memories of my life stored, during those weeks when my own corrupted hard drive was sending error messages, and ME was unavailable to me? The experience of being connected to myself, then disconnected, and reconnected again is strange indeed, leaving an uneasy feeling that perhaps this reinstall isn’t quite the real thing. How many of these ‘recovered‘ memories were fudged on the spot? But does that happen to some degree anyway? Even long before this trauma upended my life, I’d already wondered if any certainty of ‘self’ is an ongoing self-fulfilling fiction.
This idea can be ghastly or liberating, depending on your point of view. If memories define us, but might be imaginative embellishments of what actually happened – that’s potentially UNSETTLING. By the same token, that opens the possibly of rewriting who we are into who we want to be – which is WONDERFUL. Given that I’m obliged to rebuild my life anyway, I choose to take it as a positive that at any moment we can rewrite our own stories, and our own attitudes. One thing I’ve learned in the last five years is that the human mind is quite capable of eating itself in moments of despair, but is also capable of bettering itself too. Choose wisely.
This is exactly what I’m trying to do. On this anniversary of my near fatal system crash, I’m thankful for my reboot – my chance to rewrite my own code (even if my hardware still needs an upgrade). I’m grateful too for people believing in me, despite my deficits, and giving me opportunities and encouragement on this difficult journey to the person I’d like to be.