Young stroke survivor, Lotje Sodderland, whom you may recall (if I can, then chances are you most certainly can! #jokeaboutmystroke) from the captivating Netflix documentary, My Beautiful Broken Brain, has recently used her mind's impressive skills to team up with the U.K.'s Stroke Association to create a clever stroke survivor awareness campaign aptly titled, 'Rebuilding Lives'.
Above: In the innovative video, a smorgasbord of people from all walks of life explicitly describe what it was personally like for them to survive a stroke and the extensive - & so-often excruciating - journeys they have been forced on as they try to rebuild their lives post such devastating brain - and thus, life - destruction.
"Every five minutes, stroke destroys lives.
We can help rebuild them.
When stroke strikes, part of your brain shuts down and so does a part of you.
That’s because a stroke happens in the brain, the control centre for who we are and what we can do.
Life changes instantly.
We’re here to support people to rebuild their lives after stroke.
Our campaign will inspire everyone to take action and join our growing community. Because everyone deserves to live the best life they can after stroke."
As (dedicated & oh-so-noble!) readers of this little brain blog, you hopefully have realised what has been one of the best aspects, if not the best aspect of this longwinded ordeal over so many years is the range of glorious people who have relentlessly remained by my side and have continued to make me feel valued by them - they honestly are the reason I still believe in myself and my future despite such immense loss & continued suffering with a brain that has truly fought tooth and nail to keep my 'head' up.
Perhaps without even realising it, such sturdy 'rocks' assisted in initially hiding the true extent of my brain's fragile condition as I resided in a cold, bitter limbo-like world indefinitely (should I manage to survive for much longer considering the majority of stroke sufferers die within five years, the young included in such confronting statistics) with their consistent deflection, support, chocolate and jokes. Quite promptly, it became blazingly apparent to me that even with a newly-acquired 'Special K kind of brain', so many people - even including new folk I met while in hospital (during hospital vacation in London, I was besties with everyone on my ward, fellow patients and hospital staff alike, some even became my Facebook mates whom I still keep in touch with to this day, I miss their spoons ever so much!) - appreciated who I was as a (dual) brain-damaged Kitty Kat. The fact remains that even though my mind was compromised by the debilitating effects of two nasty strokes and I was truly struggling to stay afloat with the odds of survival grimly stacked against me, I was surrounded by so many people who appreciated the way my brain had then become after two strokes and such brought this primary school teacher great joy to bear witness to people appreciating and giving value to a different kind of mind.
The strength, devotion & love my particular support network selflessly provided in those terrifying initial years assisted in hiding the true extent of my brain damage & the cruel reality I then forced to face indefinitely. Like the bulk of stroke sufferers who do initially survive the brain attack/s, I was on the brink of an impending death, but we actually didn't talk much about that bleak likelihood; it was all about the love...and laughter.
'Hope isn't given to us so we can keep it to ourselves. Hope is given so we can give it away. Hope shouldn't just stay in the four corners of our hearts, homes and churches. It should be released into the world.'
Like the majority of stroke survivors who suffer considerable brain damage to such a vital human organ, the aftermath of surviving a brain attack (/two brain attacks) entailed a smorgasbord of daily steroids + blood thinners to help prevent further strokes/simply try stay alive (nothing is promised in the aftermath of stroke) and also a detailed aggressive plan to continue years of regular outpatient rehab & rigorous, extensive testing & appointments (it would still be a considerable amount of time - many years - before I was finally considered 'out of the red zone') following the blazing brain infernos.
Unfortunately, the desperate-yet-unwavering hope I had within wasn't enough to get me through those haunting years I struggled to live on with all the harsh disabilities, restrictions and losses continually suffered; much more was needed to keep my head above water and I was truly blessed to receive such by the bucketloads from my friends and family alike.
Such is not always the case for those who are seriously unwell and I am eternally grateful for those who have not only viewed life from another person's perspective when nothing was in it for them but also have ensured to make me - and my rather messy mind (to put it mildly!) - feel genuinely valued during such dreadful uncertainty in my almighty survival.
Reflecting, what may have made my genuine support network appreciate this Kitty Kat, broken brain and all, was that despite what had suddenly & aggressively been taken away from my being & my life while in my mid-20s, there continued to stand the very person they had all previously valued; incredibly close to dying (+ insisting grim death had already occurred) with vast newly-acquired ailments (that you'd think are from some crazy Hollywood film) and yet still ensuring to make constant jokes and encouraging all of the glorious laughter with family, mates & medical professionals alike.
A golden Kitty-Taco (see below), if you will, a bit of a mess and falling apart at the seams, but one tasty & spicy little bite!
Arriba! Arriba! Ándale!
Below: Upon reading Roald Dahl's classic, The BFG, you would have undoubtedly discovered the poor lonely lad was just incredibly misunderstood.
While some might dismiss The BFG's own unique language as an indication of his supposed lack of intellect, clever readers will instead appreciate the brilliant creativity behind such an individualised dialect and determined resilience that The BFG displayed to become one of Roald Dahl's most beloved characters.
As a primary school teacher, it brought me great pleasure to learn that The BFG's creative flair was influenced by Dahl's own experience as the carer for his wife, Patricia Neal, who had suffered a stroke and who then struggled with a form of aphasia in the brain attack's aftermath as a result.
While it may not initially seem obvious, readers of The BFG tend to take great delight in discovering The BFG's weakness with a complex & (otherwise) straining language barrier then becoming his ultimate strength and the narrative ensures to intentionally celebrate The BFG's own way of thinking regardless of how different such may be to the thought processes of others around him.
Refreshingly, Dahl saw the ultimate worth in his wife post her stroke in the way she then communicated, in particular, with some of our favourite BFG dialogue inspired by Patricia Neal, one vibrant young stroke survivor gloriously shining away with such 'whoopsy wiffling' lingo (see below) in the wake of catastrophic stroke.
Boom!
Let's also celebrate who survivors are after strokes!
The science behind our advanced chitty chat -
You know I love a captivating TED Talk -
Let's TED Talk and chill with something of real substance!
Bringing much-needed attention to our mental health and the current trends surrounding such -
Not only has the study by Australia's reputable SBS found loneliness to increase the risk of death more than obesity, alcohol consumption, poor diet and/or lack of exercise, it also has shown that the lack of social interaction and social support can be just as harmful as a nasty smoking habit.
So why aren't we talking about it as much as our concerns surrounding obesity, alcoholism, diet &/or exercise?
More attention certainly needs to be brought to loneliness by our current society where the constant awareness of others not also being lonely, instead living colourful lives in their social media posts can make the overwhelming feeling of one who is feeling alone in this world (while everyone else seems to be celebrating life, just not including them in it) utterly unbearable.
This truly hits a raw nerve with me as never in my life have I experienced such extreme loneliness as I have since stroke/s.
It actually has been one of the most distressing aspects of life in the wake of brain injuries with the mass calamity they left in their wake and such anguish has nothing to do with my actual brain damage nor its direct effects but on our current society and it has also been truly perplexing to realise the vast lack of awareness, consideration, social integration + social support for those who have suffered brain injuries, in particular.
Consider this -
when was the last time you were warned of the (real) dangers of loneliness?
Please be aware of the harsh effects on one's health that loneliness can have & make it noble/hip to regularly include others in your world, even/especially when they have been bowled a high ball in life.
Currently, (according to the reputable study) while only a third of young people rarely or never felt lonely (the other two-thirds of young sortwere lonely on a more-frequent basis), the majority (71%) of older people did not feel lonely nor did they tend to experience the harmful emotions attached with such. These concerning findings suggest that younger people are double as likely to feel lonely when compared to their older counterparts.
Alarmingly, the enlightening study found that social integration & support is around FOUR times as important as finances; such help us identify who we are and that's got to be far more important than the amount of digits in our bank balance.
We ought to make it part of our everyday conversations surrounding mental health and actively employ steps to improve on our social connections, regardless of whether a person we know is striving or falling apart - it could even be the people you least expect who are suffering from loneliness. Personally, I strive to improve on such with my connections with loved ones and am so grateful for those kind genuine souls keeping me company even when I'm not bowling my usual best (the cricket metaphors are flying thick and fast!).
'Top-order batsmen' kind of people!
It would be beneficial for us all if more attention was brought to loneliness by our current society, with particular consideration given to those who suffer from such because they are now brain damaged, where the awareness of others not also being lonely, living colourful lives (in their social media posts, for example) can make the overwhelming feeling of being alone in this world (while everyone else is celebrating life, just not including you in it) utterly unbearable.
This truly hits a raw nerve for me as never in my life have I experienced such extreme loneliness as I did after my second massive stroke, having been forced to endure for now the majority of my adult years and it shocked me to my core just how much it is presently accepted.
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The aftermath of surviving a stroke can be far more devastating than one may initially realise looking from the outside in as this fellow young stroke survivor explained recently in our 'exclusive' online club, Young Stroke Survivors
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Please try be kind to those stroke survivors who are constantly battling with their minds & the cruel, extensive fallout, direct & indirect, every single second #thereisnoescapingyourmind
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While it confused and distressed me initially, narrowing the group of people I choose to be part of my life since strokes has brought more quality to my relationships than ever before. With time, patience & reflection, I've discovered just how genuine and kind the keepers have been and only have praise and admiration for the full-time people of my world.
Here's to those genuine gems that see the core value of someone who is seriously unwell, you're definitely worth digging for #punintended!
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In all honesty, it was actually quite soothing & somewhat therapeutic spending over a month just 'hanging out' in the otherwise-morbid neurological ward at hospital (I was only allowed to be discharged from hospital earlier than typical of one who had survived such an acquired brain injury like my savage second stroke as it was agreed that I'd be in the expert care of my Mother Duck who has been an award-winning registered nurse for over half a century, even so much as then studied a Master of Mental Health postgraduate degree with a keen mental health focus in her professional endeavours for the past 20+ years, in particular #freeprofessionaldevelopment #youarewelcomemummy
#creamofthecropspecialiseinneurology) despite being on the brink of death (I'm in the minority to have survived this long after strokes, the young included in such a fatal statistic) at just 26 years of age, after suffering the two massive strokes to the human body's most advanced organ.
While enjoying hospital isn't typically the norm, it really came down to a) treats, b) expert care (i.e.: Gilly, Paddy, Katie, Queen Emma, Binky, Mummy & Jacky!) & c) daily (physically present) 'guests' + their regular online (& physical) support.
Above:
Even though I certainly cried a river as long as the Amazon and was overwhelmingly anxious about whether I was even alive/if I would survive another day, who was looking after my class and what the date even was (despite finding out countless times that very minute, the year was even at times a struggle initially with as much certainty as a drunk person trying to state just how many drinks they've had after 12 hours of drinking, which affects the brain's hippocampus too FYI), I also laughed as much as a hyena, continually basked in meeting new people I regularly came into contact with each and every day (various medical professionals, patients & their visitors alike - even my own visitors brought visitors too, it was a party in the neuro ward!) and had better support from family (both in UK & back home in Australia), friends, hospital roomies and medical staff (Gilly! Pina! Little lady, Mary!) than a top-of-the-range push-up bra!
You only need to look at the instant example of the range of treats I received 'in case of emergency' from the constant stream of family and mates who would visit the morbid neuro ward every day for spoons and much-needed laughs (absolutely nothing in it for them, the kind saints) to know I was basking in love and genuine support just as much as I was grieving (to put it lightly) in my brain's (+ life's) incredible loss.
1 month post Stroke 2 -
prolonging my stay 'just hanging out in hospital', still on 'death watch' still with my mates & being smothered with their kind gifts, inclusion & love (+ funny social media posts!), still requiring full-time medical care + extensive, at times, frightening, testing, various therapy & vast sleeeeeeep.
November 2012
Above:
The 'bare essentials' laid out for all to see from my hospital locker
(a soothing wave of medical 'mates'/professionals + my own 'guests' visit when you're on the close to death & with thoughtful treats galore such as the particular *funny* one above: 'In Case Of Emergency Make-Your-Own-Perfect-Manfriend'! It's not all bad being on the verge of carking it, spending months hanging out in hospital-hotel with many visitors coming/entertaining daily, mostly with chocolate which I 'desperately' needed - can I blame the steroids I was on to prevent further strokes/blood-vessel inflammation and 'needing' the endorphin chemical release from said cocoa?!).
Although I managed to initially survived both strokes (/the medical staff eventually gave me appropriate steroids and blood thinners after ten days in Limbo while in the hospital's neuro ward), the excruciatingly painful (mentally speaking) part was still ahead of me and such torment was for years upon years to come - should I continue to hold on despite the odds crushingly stacked against me.
There can be so much disturbing uncertainty when one has just suffered a considerable brain attack (that was not treated swiftly nor appropriately) astray desperately attempt to navigate through their young life without the satisfaction, personally and professionally, that all their peers get to relish in. It would be easy for fellow young souls to avoid someone who is so unwell and confronting to be around; it takes great strength to leave your ego at the door and embrace the life of someone who is actually suffering every single moment to merely stay alive, to help them see the hope & justification in continuing on despite such immense loss and I was truly fortunate to receive such noble belief from my supportive network during my otherwise-painful plight when I was on the brink of death from the very start.
What was actually in it for them to have to leave their job early (to certainly make up the lost work hours down the track) every couple of days in order to make the hospital's strict visiting hours only to spend a decent amount of time (<<that would be later regarded as mere seconds to me - if my swollen noggin' even was to retain such a kind gesture #mostlieklywouldnot) in a confronting neuro ward with someone who is severely unwell, thinking they are actually dead, regarding every moment as instead them 'living' in a morbid limbo world, repeating themselves every couple of seconds, constantly in an agitated state even at times needing to be sedated when everything got too intense, desperately wanting you to cuddle them tight as they cry themselves to sleep + who wouldn't even remember you had so kindly visited for an hour-or-two-long laughter session just a few seconds after you leave & who will also most likely die within the immediate years that follow the cerebrovascular accident anyway (so what's even the point in making any effort with no reward with such a lack of quality of life in the long run?!).
That pure love and genuine support I was basking in was just what I needed (and was fortunate to receive, it is not always the case in our otherwise-superficial society for those who are seriously unwell generally speaking, in particular, especially when dealing with the matters of the complex mind) and it came at the expense of their own inner happiness & peace to see someone they knew just the day before the mammoth brain attack to then suddenly be a totally incapable and distraught person on death watch (all praying it was a temporary state, unsure if such was to end up being the permanent case/fatal like the likelihood insists), who they were then spooning (/cradling while in the foetal position) in a little hospital bed surrounded by fellow troubled neuro patients also experiencing such severe brain troubles, most of whom were close to their life's ultimate end. It was the new normal.
Still an opportune time for various visitors, their tasty treats and funny social media posts!
Thank you, dear supporters. You warmed my heart so much, I still am all toasty!
St George's Hospital, London, U.K.
November 2012
An exceptional human being who should get far more attention & praise than the world's 'plastics' (<<who use little brain power & lack personal substance, instead feed off vastly superficial, fraudulent marketing) tend to currently receive -
*The 'day' is technically a 28-hour-on-call surgeon's shift in the advanced constantly-demanding-and-intense neuro ward of a world-renowned hospital where the focus is on saving & improving lives in desperate need, not on a two-minute photo call as the Sun sets on some aesthetically-pleasing beach for a bunch of superficial 'followers' (/strangers) to approve/feed the already-over-inflated ego of one who is doing nothing of noble value.
We really ought to instead commend these sort of extraordinary people (clever, diligent neurosurgeons) with actual substance (& stamina, my goodness! 28 hours in one shift!!!) more so in 2020 (and on).
Discover the scientific logic behind -
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Recently, I was fortunate to finally (re)discover my brain's hippocampus (aka its 'seahorse').
Cheeky little thing was living its best life at pristine spot, Sydney Harbour - of course, with the lads (see old mate's shirt)!
#punsintended #strokesgettheblokes #justjoking #stilldeadpartofbrain
That intense, ever-so-lingering grief one would only be subjected to in extreme instances was something I had previously ever experienced before just once in my life and that tragic situation didn't impede on all facets of life and living it how I wanted like the brain injuries & their cruel, lasting (sometimes even expanding) effects - direct and indirect - did.
Living as a young person with two massive brain injuries with devastating effects that completely changed the direction of my otherwise-promising life was a harrowing ordeal, one that I had never previously experienced (nor have I ever bear witness to anyone I personally know my age suffering such mortifying conditions, challenges & loss over so many years) and the last thing I should have had to worry about it during such horrifying devastation was the lack of understanding by others.
When will the necessary shift finally be made in such treatment towards those who suffer full-time after their brain injuries?
A major aspect that made it even more difficult to accept has been the way some people have tried to push their sheer ignorance of strokes and brain injuries onto me and others in general (including invisible effects + outsiders' own preconceived, naive ideas and warped expectations of how a survivor should 'recover', disappear, accept, adapt and/or progress post brain attacks regardless of where the damage struck and the extent of such).
It was truly bewildering + incredibly disheartening and while I was fortunate to still have the ability to appropriately process such poor treatment effectively as the mind's particular lobes left in tact continued to fire all cylinders in spite of the two brain blows (looking for wins!), I also grew to resent it as the raw awareness truly ate me up and the complex invisible-injury factor & poor treatment by others were ever-so-cruel.
Disappointingly, it also made me realise how far we - as a society in the 21st Century - still have to go in our development as human beings, with such little focus & understanding currently towards our most sophisticated organ.
Even when a person has a fully-functioning mind and they're merely aware of such, it does not necessarily mean they accurately understand the complexities and profound concept of neurology and also of brain injuries, in particular.
Furthermore, just because a person has a brain with a few known (physical) 'blemishes' (to put it mildly!) does not mean they then lose their ultimate value nor are they now considered below others.
Very few of us are actual neurologists with an in-depth understanding of such a distinguished human organ, yet presumptions & ill-informed judgements are constantly made by others about my strokes, their particular rehabilitation road and my own attitude in the wake of such a severe brain catastrophe.
Interestingly, even wise neurologists I come into contact with admit they learn even more about intricate neurology from merely talking with me and directly examining my unique (Aussie battler) mind & its particular attacks (+ endeavours post) through regular & extensive neuropsych assessments (which still get decent results in various areas of my thinking that have not been impacted by the brain damage).
The fact that they - full-time brain experts aka 'delicate geniuses' #seinfeldreference - are still open to discovering further about the human mind despite their wealth of knowledge and expertise in the field of neurology makes me respect and appreciate them that much more and anyone for that matter who takes a keen interest in the vast complexities of the human race's extraordinary mind.
Well done to such proactive life-long learners!
So when I see a bloke at a bar (during my blood-thinning booze quest #strokesmart #inmoderation) wearing a seahorse shirt, I make sure to compliment him on shining a light on the 'seahorse of the brain', hippocampus, for we all (now) know just how precious the little memory-forming, emotion-processing-&-controlling, spatial-navigating, musical little 'fella' truly is!
Here's to us actively celebrating homo sapien's brilliant brain and all its punny ways.
Circular Quay, Sydney, Australia
January 2020
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Other invigorating inspirations in my life have been the countless supporters in my corner who continue to encourage me to keep fighting this long, arduous fight to retrain and regain -
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Despite losing billions upon billions of neurons after those two 'bloody' unavoidable strokes, my ultimate worth is still apparent & remains untouched and the same goes for other survivors of brain injuries.
In my opinion, support is imperative to a stroke survivor in making a life worth living again.
*It will come as no surprise to you to discover the above words of support come from kind lads #strokesgettheblokes
Awareness is key -
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Value stroke survivors and who they are after stroke like this splendid long-term supporter of mine, what a top-shelf pump!
Those who considerately take an interest in my challenging life & valuing its particular journey on this largely-unknown & rocky road despite it not being the norm to be so kind to brain battlers truly warms me up so much I get all toasty!
From just 26 years of age, I was suddenly (<<this instantaneous + cruel aspect of stroke cannot be stressed enough) never allowed to be left alone, my choices were extensively managed & agreed upon by others - including strangers - & countless people were in constant awareness & control of my every move, even private ones, even when I desperately didn't want them to be, even when it aggressively tore my identity, freedom & choices away.
Of course, generally with such brain attack instances that cause considerable cerebral harm, it has to be this invasive and incredibly overbearing way because the initial focus needs to be simply on my almighty survival (most sufferers - the young included - DIE within five years post stroke, I had two separate brutal brain attack sessions that were not treated appropriately by medical professionals - when I initially came to them, desperately seeking appropriate medical help - so making the five-year-survival mark was a true surprise #thankyoumedicalteamandmummy) and that was far more important than going on dates (apologies to all the unlucky fellas who sadly missed out during the interim!), than living in a real city with a healthy + youthful social life, than simply having vitality, purpose & progression (personally and professionally), than relishing my young life and its ultimate happiness - like that of all the lives so gloriously lived by everyone else I knew (and was ever-so-aware of the vast discrepancy between our lives) my (otherwise-youthful) age - with absolutely no end to such restrictive & extreme measures (that were aggressively & unavoidably enforced) on my life's horizon (death distressingly the only likely way such cruel, incessant suffering would end - and such considered likely within the immediate years post stroke/s).
For many, many years, the constant control & restraint by others was blatantly apparent & of course, in my otherwise-young age, increasingly overbearing; it tore away at my inner happiness and desire to be alive.
What was the point if I was just existing? Who does it even benefit?
Merely imagine 'just' waking up at the ripe young age of 26 & suddenly being forced to swap your independent, rewarding life (that everyone else my age gets to continue to still keep in their possession) from simply the day before to something typically experienced by an unwell elderly person (who had already got to experience all their prime years well) in a controlled, alienating environment just like a nursing home with fellow unwell people & vast obstacles + restrictions everywhere you turn - indefinitely.
It has been no walk in the park.
While its extent has lessened recently (thanks largely to elaborate & proactive scaffolding + support, routine and technology), I still am constrained like an infant child in most instances because fear and isolation are byproducts of such awful conditions that have been imposed as a young stroke sufferer with considerable brain damage inflicted.
It is a more challenging & truly awful aspect of being a brain injury survivor than one may initially assume just by looking from the outside in.
Heartbreakingly, I have often longed to instead suffer from an illness that didn't affect my independence and now tend to have little compassion for those who consider themselves unwell yet are able to live their lives how they want, with little loss to its quality & vitality and without a carer needed to be almost constantly by their side, controlling their life's quality, choices, progression, vitality and any plans + aspirations
Have you ever wondered why those who don't die from stroke immediately are then regarded as having a 'stroke recovery' (regardless of what extreme disabilities they may instantly acquire or the drastic loss they can continue go suffer indefinitely) yet those who have cancer instead get the noble title of 'battle'. It may seem like the specific choice of wording makes a little difference reading such as an outsider, but it hurts me to my core to simplify my life's pain after strokes with such ignorant insensitive terminology especially when I know people who have had cancer and they have bounced right back to their former life after treatment and not had a strenuous battle on their hands like I continue to endure. After close to a decade, my stroke & rehab treatment is still ongoing and constant, but with the added pain of harsh disabilities that make my life unable to be led with true purpose, progression and independence.
Such vast restriction, loss & exclusion are indirect effects of my particular strokes that have impacted on all facets of my young life, including social, where I am at times now avoided by others due to the extra effort required by them to so 'kindly' include me in their social calendar, priorities & plans given the particular consideration/assistance of theirs needed (/perceived as needed) when I can't offer them much (jokes a many, mind you) in return since my brutal brain attacks.
Disappointingly, it's not yet considered a general expectation or even a noble deed by our present society to continue friendships/relationships with a stroke survivor the way it is with other health concerns one may face (<<the vast majority, lower on cause of death + disability lists when compared to life-altering/fatal stroke).
Have you perhaps already noticed this yourself?
Currently, it seems to be more or less regarded as acceptable to abandon stroke sufferers and it's perfectly understandable to then dismiss their thoughts, desires & reactions; it's seemingly okay to forget & disrespect them because regardless of where the brain injury particularly struck and how much they are actually dealing with around the clock (you can never escape your mind), those with acquired brain injuries are now regarded as below others and (present) society will not even bat an eyelid at such poor & ignorant treatment.
It would seem the onus is always on the person with the brain injury; how could it possibly be the blemish-free brain sorts who are at fault?!
Let's get the shift moving, you know I am - and so many other stroke survivors are too - (still) worth our weight in antimatter!
The distressing social effects as a stroke sufferer (with extreme consequences/disabilities/loss) have been soul destroying but such torment only makes me appreciate those extraordinary people who have genuinely & consistently made the effort, who have been able to see my ultimate worth is still intact despite not (presently) being able to offer them anything towards their public image, who have considerately thought of life from another person's perspective and who have also honed in on making stroke survivors continue to feel their ultimate value in spite of what some have brutally suffered and tragically lost.
Admittedly, stroke has kind of offered a healthy tune-up of my life and those I choose to be a part of it.
Who would have thought it?!
As a stroke survivor, life can be utterly bleak and the isolation + the (currently-accepted) avoidance climate that can be faced by those suffering from severe challenges and ailments - in particular, young stroke survivors who would otherwise be in the prime of their lives relishing all the joys that comes with youth - need to be more directly addressed and indeed shifted for the well-being of such brave full-time (brain) battlers.
Let's finally get this important stroke conversation started, no matter how confronting it may be.
Shining a much-needed light on the immense grief, loss & forced adaptation one can suffer after surviving something as catastrophic as stroke -
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Young stroke survivor, Hollywood actor, Sharon Stone (pictured with her son, Laird #namegoals), has offered her frank insight into the particular treatment she received after a devastating stroke -
"From other women in my own business to the female judge who handled my custody case, I don't think anyone grasps how dangerous a stroke is for women and what it takes to recover - it took me about seven years.
I lost my place in the business. I was like the hottest movie star, you know?
...& I had a stroke. And we were forgotten,"
reflected Stone ensuring to reveal what life can actually be like for those stroke survivors struggling to live on in the wake of stroke #wearestillhere.
“No one told me — I read it in a magazine,”
added Stone about the death likelihood from her particular stroke - despite being a young stroke sufferer, Stone had just a 1% CHANCE OF SURVIVAL - only ONE OUT OF A HUNDRED stroke sufferers survive the immediate time after her type of brain attacks.
Strokes are far more serious than so many less concerning illnesses society currently gives more attention, time, compassion and help to instead.
Let's bring the change. Set those wheels in motion.
Stroke sufferers should no longer be left behind -
By Novaueng-Smooth
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Ongoing rehab -
Wobble board, a little bouncy ball & some very patient brain gurus helping to finally make my life be fulfilling again.
Close to EIGHT YEARS continually (#thereisnoescapingyourmind)
living ('living') with the cruel, debilitating effects (MAJORITY of my adult years have forcibly endured this switching-between-limbo-and-hell existence barely making it out alive with little life progress, vitality and purpose no matter how hard we have continuously worked to regain & retrain) - visible & invisible (and their corresponding consequences), direct & indirect - from two massive strokes that suddenly struck while in my mid-20s.
As each challenging year of this alienating existence cruelly passes by, the vain hope of simple independence, the longing to achieve what I (and my peers) previously took for granted + the ultimate desire to be of genuine worth in others' lives despite such unfair shortcomings only continue to prevail and with it, the harsh reality that I am still constantly struggling with vast disabilities and challenges one could not simply fathom, that some now even regard me as 'broken' so hence, that I have since been perceived to be inferior to them & also to be avoided (a currently-accepted-by-society stance when dealing with a stroke sufferer) and that I often struggle to find real purpose in life (like everyone around me seems to have have) persist in being aggressively rubbed in my face as being one with two decent blows to the brain.
Yet I soldier on, every moment a struggle, every hope made in vain.
So what exactly is the flip side?
A strong stroke soldier just luring all the lads.
#strokesgettheblokes
November 2019
Move your body - for your brain's almighty sake -
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It's all about perspective in adapting to life living with the the cruel effects of stroke.
We've got to celebrate all victories in the aftermath of losing a decent chunk of our most sophisticated and advanced human organ.
Here's to my cheeky broken brain, the hard-working li'l Aussie battler!
Look at life from the point of view of those constantly struggling -
1. Reducing The Disability To An Unfortunate Fact
2. Deciding For Others How "Bad" Their Disability Is (Or Isn't)
3. Disability Discrimination
4. Assuming That Disability Always Means Inability
5. Belittling
6. Condescending Responses
7. Inspiration Porn
8. Turning Disabilities Into Minor, Everyday Defects Or Using Them As A Punchline
9. Projecting An "Us" Versus "Them" Mentality
10. Tiptoeing Around The Word "Disability"
11. Using Blanket Statements
12. Assuming The Disability Is A Negative Trait
Be mindful of the nasty approach of a toxic ableist -
After experiencing firsthand the offensive attitude expressed by some in society since I became one living with brain injuries (that do not affect my actual intelligence overall, the wise people of the world have managed to grasp such), I unfortunately realised the 'ableist' mindset that is prevalent in present society when dealing with people who are struggling in life, especially when it is in regards to complex mental health.
Refreshingly, the above article brings required attention to a harmful attitude not often discussed which has been one of the hardest aspects of my life as a two-time stroke recipient (<<in case you haven't yet noticed, I try to not call myself a 'victim', we need to be empowered in such vulnerable times, 'recipient' or 'survivor' are my particular favourites).
While such an approach may be considered somewhat helpful in some instances of minor concern and struggle, microaggressions have instead shown to be of no assistance for who are actually needing support, deflection and/or guidance.
In my opinion, the sole purpose of harmful microaggressions is to stroke the ego of the attacker to help them feel superior and wise enough to know better than the people who are struggling so attackers egotistically seem to use it as a wicked opportunity to make themselves feel better.
The majority of people are in no position to offer advice or even their (typically uneducated) opinion on how a stroke survivor should be in the aftermath of something so catastrophic and complex as stroke.
In all honesty, stroke survivors (generally speaking, from my perspective + talking to fellow stroke survivor superstars) just want to be treated like they/we were before stroke; I still feel like 'me' and I still appreciate the same values in people that I did before (mostly humour, with a little hint of respect, honesty and consistency #priorities). Those who have made me feel genuinely valued and celebrated by them (as I too consciously try to do in return) are the ones that understand how to give sincere love and show they care about someone who can't offer them anything and is also currently holding on to life like grim death. This has been a new road for all of us involved, but I do know that lecturing someone on something they constantly deal with (/suffer/lose) on what you briefly witness as an outsider is not exactly wise nor is it going to be benefit anyone. We need to leave the complex brain critiques to the top-notch neurologists.
Even just referring to the aftermath of stroke as one's 'recovery' can be offensive to those who actually have a constant struggle on their hands indefinitely for years to come and are not fortunate to 'recover' from their stroke's onslaught like some people with less debilitating effects luckily are.
The multi-faceted mind is not a simple black-and-white organ to understand and make presumptuous judgements on.
If we were to compare an acquired brain injury as like losing a limb for some survivors (/or two limbs, considering some people can lose function of an entire side of their body after brain damage), we might be better able to understand how the brain loses that part of the brain forever, there will be a piece of dead brain sitting there waiting to be analysed upon one's death and it will never regain blood flow and neurons to that particular section of the brain inflicted by stroke.
Never ever, adiós amigo, you were 'mental'!
Consider this -
if someone you knew lost a limb, would you call it a 'recovery' just because they then had a prosthetic piece put in place?
Of course you would not; you understand the limb is gone forever.
Instead, it would be regarded as an adaptation, a necessary means to make life worth living, but never a recovery of the limb that was lost.
Why can't brain injury survivors receive the same level of understanding and compassion when it comes to our most advanced and prized organ, the almighty human brain?
Generally speaking, it isn't considered helpful for one to use a platform in which to discuss a topic they lack formal education and/or explicit + extensive experience with -
'If you think about a topic and speak from a place of education/experience, your opinion is more valuable and worthy of being listened to.'
"The worst part about having a mental illness is people expect you to behave as if you don't,"
- El Basilyo
Reputable Australian newspaper, The Age, has considerately brought attention to the vast complexities and prejudice often associated with invisible disabilities and illnesses through a compelling article by Nicole Precel who offers her enlightening outlook & research on such a complex & challenging yet highly disregarded topic -
Such cruel, yet-so-often forgotten (by society, as a whole), effects in the wake of a catastrophic brain injury can include:
*Sensory over-stimulation
*Neurofatigue
*Sleep disorder & CSAS
*Cognitive problems
*Aphasia
*Apraxia
*Agnosia
*Epilepsy
*Ongoing woes & strain (financial, lifestyle, mental) for close family support network
*Neglect
*Vision problems
*Lack of spatial navigation
*Full-time care/dependence
*Lack of freedom & spontaneity
*Extreme loss (physical, mental, emotional & financial to name a few) & grief
*Controlling of emotions
*Control of life and its progress + choices
*Avoidance & harsh unfair judgement by others
The extreme & confronting list of invisible brain injury effects only goes on & is constantly ever-so in your face.
Above:
Almost 8 years post last brain attack and although the hair surrounding my brain biopsy's skull scar (#gangsta) hides such an invasive and confronting surgery, the bone that was drilled into leaving a cheeky hole about the size of two finger tips is still evident and easily accessible to have a feel whenever I need reminding of the grand path of rehab & progression that I have been on since I almost died and suffered such extreme (and instant) disabilities in late 2012.
Such a sophisticated surgery's remnants is also physically apparent for others as well to help give them an understanding that surviving a stroke is not necessarily the end of one's suffering.
Do come have a little rub; it might just bring you good luck!
6 months post Stroke 2 - May 2013
Below:
Through explaining our complex mental health and the management of priorities, fulfilment, happiness & purpose of each individual as a 'hamburger', we are able to better understand how one may feel low/empty if any/some of the 'ingredients' of their vital 'mental health hamburger' slide or altogether fall out.
A Big Mac just isn't the same without its special sauce after all!
We are all individuals who require different (prioritised) nourishments to keep us feeling energised + healthy and such a 'nutritional' concept encourages us to acknowledge just what our own 'mental health hamburger's contents' entail, ultimately assisting us - and others - understand what it takes for each of us to help regain + maintain optimal mental health.
Unlike with a (delicious) Big Mac, we can't simply go back to the 'counter of our mind' & get that 'signature sauce' put on our 'buns' & we can't just take some 'condiment' off of the person's 'mental health hamburger' next to us; we need to source our own 'mental health hamburger ingredients' (although friends & family surely can/should help/join in the brave quest!) to ensure our 'mental health hamburger' leaves us feeling 'saucy' - & satisfied (<<just like the risotto left George's ladyfriend feeling in the classic Seinfeld episode)
#nomnomnomnom #punsintended.
Some mental health burger ingredients could include sunshine, exercise, sleep, socialising and/or psychiatrist sessions.
We are all different in our mental health priorities and I am grateful for the friends + family who have acknowledged and supported the needs of my particular (very wholesome) mental health hamburger as I too try to support theirs.
Mental health has never been so tasty!
The more you know -
By Shirleen Jeejeebhoy
“Then we have what I identify as extraordinary grief resulting from a disease such as Alzheimer’s or a catastrophic injury such as a brain injury.
This kind of grief is profound.
People must grieve who they were and the family also grieves the person who is no longer there, albeit physically present.
Sadly, I think society as a whole is only beginning to understand how profound this type of grief is ...”
Contemplate how we presently tend to communicate with people who are suffering from depression -
Mind Warriors, Beyond Blue, Shed Light On The Harmful Impact Hurtful Language So Often Used In Society Towards People Struggling With Depression
Despite the focus on depression and mental health conditions as a whole (including brain injuries, acquired and/or traumatic in form) currently seeming to be centred around how the person who is struggling should be instead handling their depression, it is just as important for the people close to them - even those who are colleagues and/or acquaintances, to some degree - to be aware of their particular role and how their own attitude, actions, misconceptions and language can have a concerning impact on the person who may be going through a tough patch.
Beyond Blue's informative online vid shines a light on an aspect of mental health that is not often given much consideration; the role of the supporter of someone struggling and offers a much-needed education on what is not helpful and instead tends to be, cruel & also harmful.
The specific language others have used has had a profound effect on my rehab road and the particular attitude & perseverance I have adopted.
Thank you to the wise souls in my corner. I hope all stroke survivors have such a strong and smart support network.
Some wholesome + reassuring news for you -
Yes, you read that correctly; a little (extremely-clever) lad went to one of the most elite education facilities in the world at just 6 years of age.
Big deal, Joshua Beckford (below, suiting it up over the years at various upstanding award ceremonies), is currently studying philosophy & history despite being just 14 (!!!) at Oxford University, one of the world's oldest and most prestigious universities.
It's no wonder when Joshua had memorised the letters on a keyboard before he had even reached his first birthday, then soon after, he commenced his virtuous tertiary education endeavours at the fresh young age of 6 and Joshua has also been listed as one of the '30 Most Remarkable People In The World With Autism Who Have Impacted Society'.
Bloody beautiful!
Adding to his noble humanitarian value, Joshua is also the face of the UK's National Autistic Society's Black & Minority Campaign, helping to highlight the need for more support and services to those who unfairly face challenges in achieving their life goals.
Furthermore, JB wants to be a neurosurgeon AND also change the world!
YES! SUBSTANCE!
Let's celebrate those with profound sincerity, consideration of others & inner depth.
Fortnite & Minecraft fans unite -
Special mention to the mind's hippocampus with the memory & spatial awareness focus of such games (/mental exercises).
Life-long learning is where it's at -
The type of quality person we ought to be acknowledging and celebrating for their personal achievements instead of those who tend to get more attention and accolades presently by society #thebrainiseverything.
Below: Be on it like a car bonnet & try tapping into the magnificent mind by embracing your brain's
own spatial navigation for an upcoming journey instead of using addictive technology's Sat Nav.
Your hungry head will thank you for it in the long run.
Take it from this ole 'Dory' (whose second stroke struck the first part of the brain Alzheimer's disease tends to take over, see above), you want to try avoid losing your sacred spatial navigation and short-term memory, in particular, by actively working helpful brain processes through your natural talents and abilities otherwise it (see above, the brain's hippocampus, in particular) is said to more likely shrink and lose its touch when the lack of neural pathways can cause deterioration, ultimately ruining such prized abilities of the advanced human mind #itishowyouuseitthatmatters.
Why can't we remember our eventful childhood as meticulously as adults who were around us at the time?
Have you ever wondered -
It may surprise you to discover that what tends to trigger nostalgia is said to be negative feelings. We want to remember the good times during the doozy days as a way to offer hope and help realign our priorities so it makes sense that we try to concentrate on the positives when going through a rough patch and yearn to have our peak life experiences back again.
So here's to the negative moments; they encourage us to remember and appreciate the finer ones all at once!
For those who struggle with their sacred short-term memory, routine brings much comfort and regiment to their days (just ask this li'l Dory!) but it also takes much wisdom and compassion for others to accurately grasp what full-time brain battlers are constantly going through and then offering such a reassuring experience for all involved -
Big-hearted bloke, Lenny (below, surrounded by some of his happy clients), views life through the eyes of someone constantly fighting with their mind, as he kindly travels to hospitals and nursing homes offering his divine expertise and service.
The genius part?!
Top lad, Lenny, has set up his unique barbershop as a 1950s one complete with fittings and furniture from a time when his particular clientele relished in their youth.
Such a creative & nurturing instalment can help tap into the long-term memories of dementia patients as such cherished memories from years ago are often regarded as the last ones to be lost from dementia.
Compassion & consideration are underrated acts of decency in 2020, let's make it hip to think of others again!
Do watch another captivating clip of Lenny, the legend -
Take sweet delight in discovering more wise souls who hone in on the treasured intact abilities of a compromised mind #ittakesavillage -
Above: One (dis)abled little Kitty Kat at your service!
Explore more about the profound workings of our minds as we age and the strengths we can then see shining -
Know the difference -
Below:
Who are we if we lose our life's memories?
Above: Prior to strokes, one of my most prized assets (obviously apart from my keen wit #nothumbleaboutmysenseofhumour) was my flawless memory (^^ & also my scene apparently!) which was regularly commended and I say that without feeing at all smug for I no longer have such (although my long-term memory of events prior to strokes is still easily accessible, unfortunately for some mates who wish I forgot their 18-year-old self's drunken antics #sorrynotsorry) and am utterly devastated reflecting on my brain's former abilities that were once my shining strengths and also considering where I could/would be in life at present day if the massive strokes (& the shocking delay by medical staff in appropriate identification & treatment of stroke in both instances - close to an alarming TWO weeks for Stroke 2 despite seeking immediate medical assistance the very moment I woke with symptoms, how did I even survive such sheer calamity & negligence once at hospital?! #timeisbrain) didn't ruin everything worth living for. It was much like a cruel plot twist in a dramatic thriller film with no 'happy ending' yet on the horizon.
Unlike with other less concerning illnesses (only heart disease beats out stroke in fatalities worldwide + stroke is the biggest cause of serious adult long-term disability in the world), you can't 'just' cut that part of the brain out, replace it with a state-of-the-art copy (although cheesy Hollywood films & TV shows may beg to differ, see below for instant *funny + ridiculous* example from classic sitcom, Friends) and be regularly praised for such in the process.
What a dream that would be for one living with substantial dead brain.
A supportive (yet perhaps now in hindsight, cursed) email from a fella (because #strokesgettheblokes) commending my brain's particular (former) strengths merely the year before the fierce onslaught - thanks to all the lads (+ ladies too) for all your noble efforts in pumping me up!