Some things are perfectly described: Not exactly onomatopoeic, but loaded with just enough woeful association. ‘Cancer’ fills the hearts and minds of even the unafflicted with dread. While the word ‘malodorous’ makes noses wrinkle with disgust while backing away swiftly...
Simply having ‘had a stroke’ is way too benign to communicate the wide-ranging, systemic degradation of both faculties and dignity the humbly named ‘stroke’ wrecks on most victims.
Mine occurred around 9.15 am on the 24th of April shortly after 41st birthday. My ‘event’ was an almost silent, totally unremarkable pop in my cerebellum that quickly developed into an apocalyptic headache and a concerning numbness crept up my right arm and fingers. I knew I was in deep trouble and staggered into a quiet room to make the call.
The kindly operator took my details but insisted I move to landline for clarity and address confirmation where I was given well meaning (but futile) reassurance that something benign was occurring. By the time the ambos rocked up I was vomiting and sweating profusely and massaging my now useless right hand as if I could somehow squeeze co-ordination into it. I was swiftly transferred to my local hospital. in Clayton.
While awaiting treatment in emergency bay fielded a call from my concerned wife choosing to lie pointlessly assuring her everything was ok while inside I vividly recalled a future I’d once imagined strapped to a donated wheelchair, hideously contorted silently screaming for oblivion#
Before the blur and flurry of medical activity consumed me I remember exchanging my ‘business casuals’ for a plain hospital gown. My dehumanisation was complete - from family man with a ‘..fucking lot on this week’ to inpatient 72112211 male, 41, public, unknown with upper right infarct... another sad statistic recounted ad infnitem to bored specialists.
...pain
I previously experienced pain: stealthy strikes with blood and drama and even darkroom jaw clenching migraines but I was unprepared for the nerve pain the that rose from the dead control pathways in my right arm. It alternately burned, tingled and yet somehow remained numb and useless the fingers hyper extending from the slightest input from my disfigured brain.
...Disappointment
Every Doctor visit started with tiresome but obligatory observations barked instructions of the “stick your tongue out follow my finger” variety. I was given vague assurances that the pain would go and I would become something more than the squealy, bedridden, self hating’ cripple I very suddenly become.
The days that followed amounted to sleepless nights punctuated by 2 hourly observations
observations, injections, horrifically graphic, fulsome dreams on account of the oxygen I gorged on. Inexplicable random montages from an unseen (probably unmade) Russ Meyer animated feature ‘Beyond the valley of the Ultra Vixens’# shape shifted across the tattered landscape of my fevered, oxygenated psyche.
The good, the bad and the ugly...
Aside from good who were at my complicated bedside seemingly effortless and exclusive to my every waking moan doing their level best to keep me optimistic and sane, my constant(2 hourly) companions were the unlauded heroines of the health system. The often good appeared as if by magic smiling and solicitous gently waking you by name to describe whatever odious potion or procedure they were tasked administering. By contrast the bad silently foisted medication upon your alarmed weakness without so much as a grunted greeting and setting my average emotional tone as dark and resentful.
Nurses and their have enormous impact on patient outcomes, their basic competence in many sub acute environs probably decides who lives or dies beyond that personality, while an option for some, goes even further for me: Acknowledging me, my pain, my discomfort, my fear makes the real difference when the demons hover at bedside.#
Drugs don’t work much here...
Having carefully dabbled in 'recreationals' in my misspent youth (and inhaled, deeply) It’s difficult to forget the ferocity of my hatred of brilliant stroke nurse who denied me morphine during a particularly painful phase of my emergency despite my obvious torture and the dripping needle bleeding liquid relief millimetres from my exposed arm.
Once I’d survived the multiple indignities of aspirate pneumonia# Often my perfectly legitimate requests my nightly opiate led to interrogative questions about the exact nature of the pain forcing me to explain the tired dismissive voice I saved especially for his arse covering ‘snivility’ that I was 41 year old stroke patient and have neither intention no inclination to self justification. The pain exists in levels of consciousness.
Support
Without letting a fulsome rant against the humility of sudden an extreme disability degenerate into schmaltzy back pats the support network was flawless. Time, sympathy, childcare money, company, expertise all were selflessly given without asking anything. Both colleagues good friends and (till now)loose acquaintances and neighbours, bestowed my misfortune with instant acceptance. I was able focus my bedridden husk to the task in hand; grieving for my lost capabilities and braving the many future disappointments heading my way.
...hiccups and other apparently minor annoyances.
Hiccups post stroke are a continuing nightmare of squelching silliness, add the repulsive but lifesaving Naso-Gastric tube# my not so dainty burps something continued for hours beyond any medication I tried; Instead I consulted with Wikipeadia via my left thumb to learn about unfortunate souls that suffered for years.
I remembered sitting in a preoccupied silence with another victim listening to each other hiccup a pathetic disjointed squelching.
“They fucking drive you crazy don’t they? I ventured.
“Yep” was his strained reply. Stroke victims are as variable any folk but reliably swing from mute depression to garrulous over sharing and this exchange showed exactly where we both stood/lurched/leaned or lay on the mood spectrum.
The truth about rehab...
It wasn't endless rows of pilates machines and pitiless Fraulines barking relentlessly at old broken bodies with little prospect of doing what they once thoughtlessly did. Neither was it was not a series of gentle, repetitive routines on comfy loungers with maternal types whispering encouragement. Rehab was neither extreme the loungers were plinths and Fraulines were a varied selection of mostly physical young women with an uncanny knowledge of my deficiencies and what was required to overcome rather than fix them.
I worked closely with 2 mainly lovely young women. Encouragingly we stepped through sit to stand, squats reaching and reactivating the various muscles of the hip and straightening the torso that now curved right against the unseen unfelt army of stroke affected muscle.
...personal grooming
It took the removal of the NGT for me to take stock of the unruly whiskers# and scrappy widows peak. I took trimmer and injured hand briefly to task peering at lowest edge of the bathroom mirror before admitting this was too onerous for a cripple in my condition.
I had mastered the one handed shirt removal, the right handed gross grasp and soon learn the seated jock removal Along with the standing pee. Regardless I needed my wife’s help to look presentable#
Much as I rue the 24th of April when I became the reluctant chief protagonist of my own tragicomic melodrama, I can never begin to atone the perfect, almost psychic support I got from my wife who juggled a job and 2 glorious
children to be at my side sometimes twice daily smartly taking up the considerable# slack between ideal patient care and the harsh reality of actual nursing practices. I felt probably as woeful for her as she felt for me. As I marvelled at her organised, upbeat sense of the absurd. At least I was lucky with my family and friends.
After two agonising weeks in Monash I was suddenly transferred# to The Kingston Rehabilitation Centre where my journey continued with a fresh cast of characters who deserve more detailed portraits than brevity and privacy allows.
Free from the agonising tedium of real illness I began to examine my surroundings and cast and was immediately developed alliances with various pros charged with my rehabilitation. I immersed myself in the simple yet harrowing repertoire of modern stroke therapy and the realisation my right side was below toddler level; and even that (I soon learnt) was probably ‘cause celebre’ on the of scale of abilities strokes can steal.#
In the final stages I become so deeply involved in my own rehabilitation I have little time to glower at nurses over petty and imagined slights. My attention shifted to my fellow inmates; in particular the shuddering twisted wrecks I see being goaded with the unique blend of mildly patronising bonhomie therapists use to shock their reluctant patients unto their unsteady feet.
‘fantastic’
‘Amazing’
‘well done!’
All I know is it helped me walk. tentatively, crudely even, feet wide apart for maximum balance torso stiff and mind fully engaged supervising then confidently, overtaking.
My life started to turn around, a small but significant ray of light shone brighter daily.
My wonderful physio left on rotation after 7 weeks and after I’d quietly past the initial awkwardness of working closely# with a determined and capable young woman whose sole interest was in getting me walking...well.
Getting better medically was a probably a triumph of tryciclics over my natural pessimism. As my official status graduated from pitiful wretch to semi independent non-ambulatory I had a mental flip that began to see positives in being incarcerated.#
As the days went by I slept, ate, listened to Neal Stephenson’s overlong ‘Reamde’# and watched bad TV. Imperceptibly and without much fanfare I walked and took longer steps between furniture and suddenly after nearly 8 weeks of anguish, existential and several other types of pain. I walked! slowly, painfully, wide legged and stiff armed. I walked past the genuinely delighted faces of therapists medical staff and inmates.
That night, alone in my 10 way electrical bed the tears flowed unrestricted. Ambivalent sobs elated to be free of my wheelchair prison but unable to ignore the fact that I was 40 years later relearning what I had once perfected all those years ago.#
The walk continued to improve daily morhping into an amble, replete with with mild hip sway, foot roll and arm swing.
Fatigue and stamina remained an issue. My first home visit reinforced for the first time the difference between my ‘pre accident self’ and the cosseted rehab ingrate who took carefully controlled risks in a purpose built environment. The big, bad real world curled the edges of my inner polaroid. We had dinner in a busy ‘child friendly restaurant and my tender nerves throbbed with the shrieks of excited children in sync with my clumsy oesophagus which struggled with the purgatorial Wagyu steak/chips I could barely swallow.
I was returned and took refuge in my room door shut slightly deflated by the sheer unrelenting pace of my real life.
The final weeks before my release were a blur of pre release activity - medical investigations, assessments and on my final day a hand over to the home rehab team to continue.
Transferring out of rehab begins another chapter. Everything changes movement emotion etc. Even though home is familiar your relationship to it is different.
That transition and adjustment deserves many more words as time goes on.
