Below: While I initially had a notebook always by my side to write down the constant stream of thoughts, concerns, reminders & general hospital activities/tests/operations (as a smart reassurance measure that I was actually still alive - & not in a coma or dead like I morbidly insisted throughout those initial weeks of living with two acquired brain injuries at just 26 years of age - with concrete evidence easily accessible for whenever I did get anxious and/or confused), if I couldn't find it (because you tend to lose items on a regular basis without your mind's short-term memory 'reception', hippocampus #toputitmildly #stilldo), I proactively would send myself easily-accessible emails instead.
Above: This email I sent to myself (#coolkid) was just two weeks after the second stroke when I constantly was unsure simply what date it was or even the day of the week even if reminded countless times, what I had for breakfast thirty minutes earlier or who spoke to me in great detail about their day merely a few seconds ago.
Returning to my hospital bed after a quick minute spent in the bathroom was a confusing-+-confronting challenge as I had no idea which hospital bed was mine (despite it being the same one with all my familiar fanfare/gifts from kind visitors surrounding it in a small room of just a few beds the entire six weeks I 'vacationed' there), what I had done/where I had trekked a few measly seconds earlier.
Like something you'd see in a cruel movie plot, I had instantly acquired such severe long-term disability which demanded full-time supervision/care and after initially surviving, the morbid odds were LIKELY that I'd die soon afterwards. Despite such, the brief email's content shows rather remarkable conversations + fleeting thoughts had during such otherwise-intensely frightening times (especially with the spelling of homophones being the exciting topic of conversation among teacher colleagues who had so kindly visited the neuro ward) & the perfect kind of deflection from the warped life path I was now forced on.
There's even a punny joke during such about Ireland having the fastest growing capital city - it's always 'Dublin' (/'doublin') - so kudos to my diligent mind for still being able to grasp clever puns (/important information)!
St George's Hospital, London U.K.
November 2012
Returning to my hospital bed after a quick minute spent in the bathroom was a confusing-+-confronting challenge as I had no idea which hospital bed was mine (despite it being the same one with all my familiar fanfare/gifts from kind visitors surrounding it in a small room of just a few beds the entire six weeks I 'vacationed' there), what I had done/where I had trekked a few measly seconds earlier.
Like something you'd see in a cruel movie plot, I had instantly acquired such severe long-term disability which demanded full-time supervision/care and after initially surviving, the morbid odds were LIKELY that I'd die soon afterwards. Despite such, the brief email's content shows rather remarkable conversations + fleeting thoughts had during such otherwise-intensely frightening times (especially with the spelling of homophones being the exciting topic of conversation among teacher colleagues who had so kindly visited the neuro ward) & the perfect kind of deflection from the warped life path I was now forced on.
There's even a punny joke during such about Ireland having the fastest growing capital city - it's always 'Dublin' (/'doublin') - so kudos to my diligent mind for still being able to grasp clever puns (/important information)!
St George's Hospital, London U.K.
November 2012
I woke up like this.
The second stroke ended my youthful life abruptly and without an ounce of compassion.
Suddenly, I had to accept that my life, despite otherwise being in its prime, was now, unlike most young people all around me, built with fragile matchsticks, any incorrect move could then be the end of me right then and there.
Despite the concerning lack of care, consideration & support by our current society (#bethechange), the majority of stroke sufferers die within the immediate years following and young people are not exempt from such horrifying statistics. It's not 10% like other illnesses that currently get special days/weeks/months/entire time dedicated to them and celebrated/honoured profusely by the media and the general public who have willingly & openly acknowledged & supported. Think about it; when was the last time (/any time) you gave consideration, concern &/or support towards a stroke organisation &/or stroke sufferers with a morning/afternoon tea, a donation/fundraising event or even just with a social media content share about stroke fatalities &/or a young life living with the constant debilitating disabilities & effects (direct & indirect) of stroke? Without hesitation, I can confidently deduce that most have never.
Why is the world's biggest cause of adult disability + the 2nd largest cause of death (only to heart disease) constantly & cruelly dismissed?
This agonising thought continues to linger as I fight through each day with my constant invisible struggle to keep on living, to reclaim some of my former life and to have worth in others' lives too.
Let me take a moment to give thanks to the magnitude of quality people in my life who have, during such a long-winded torturous ordeal - consistently & genuinely - listened without judgement, understood without pretension, provided support & inclusion without question, loved without condition and validated without comparison.
The genuine compassion, consideration, respect and insight so many loving people have consistently shown towards this constant & intense struggle over the majority of my adult years (when I currently can offer them nothing in return) has been the silver lining of my life's mammoth dark cloud.
Such kind supporters have wisely looked at how life can be like outside of their comfortable bubble, ensuring to make me feel understood, included & valued.
In my opinion, being understood, together with being of worth to others, are factors in life not to be taken for granted and contribute to the most important aspects to living a fulfilling life, sick or healthy. Ultimately, it's about the sincere, lasting connections you make, amiright?!
Overall, such an arduous experience (that is stroke + the considerable effects - direct & indirect - uncontrollably inflicted) has since made a Kitty Kat who is a more compassionate person to those who have shown consideration, respect & consistency by looking at life outside of their bubble for others who may look 'fine' yet are actually continually struggling just to get by every moment of their day (it seems to be increasingly difficult for some to do with our world's current narcissistic, 'what's in it for me?' mentality).
The bi-brain damage and its debilitating effects that have relentlessly lingered for most of my adult years now could not be overcome with what had previously made my life thrive; it was a new playing ground (/battlefield) with new complex rules and a cruel bias that would make even the strongest person question why they survived.
Despite growing up in a tourism-based community where I regularly enjoyed engaging with new people from all across the globe & seeing life through their eyes from an early age, the strokes have encouraged an even further appreciation for meeting new souls and seeing their perspective on a topic I think is so often warped by ignorance, judgement & comparison by those who analyse the former brain-damage-free 'you' & what you previously could offer them to the updated stroke survivor.
It may come as a surprise to you that someone who often feels judged unfairly these days, embraces new people so openly but I have found a distinct pattern of fresh faces (that have not be 'warned' about my particular limitations as such shouldn't define me) can be incredibly supportive, kind and open-minded.
Isn't that just so glorious to discover about the human race?!
Thank you to those genuine souls, you are the Kitty Kat's meow (plus the long-term authentic Klubbers who are regularly writing love notes, sending treats and including me in their lives)!
Genuine people are just what a stroke survivor needs, the time you've known them prior to brain damage has shown to not necessarily come into it.
While I still like to embrace new people just like I did before strokes (#tourismfam), it has actually been quite surprising just how supportive they can be when I in fact have nothing to offer them and yet some people I've known for years, even decades, have not necessarily been as thoughtful, consistent and compassionate. Mind you, an absolutely heartbreaking realisation that has shown to be a common theme for fellow young stroke survivors, in general.
Currently, my current life sometimes feels like a hellish prison - one that I certainly cannot escape (+ have been forced into with no direct fault on my part) - yet due to the (present) vast ignorance of brain injuries by society, others so often regard it as not a big deal &/or not their problem to understand (/try to understand) nor support.
Honestly, it brightens my day to know others sincerely care despite not being able to offer them anything, even when I have lost such a vast amount in various aspects of my young life & only continue to suffer such diabolical loss throughout my days.
Cheers to all those who continue to bring the sunshine to my rainy day, support in my darkest hour and read this little ole brain blog, you are simply splendid.
While 2012's two strokes killed approximately a baboon's worth of neurons, I still am quite capable of knowing my ultimate worth - although I am at times still forgetful, I am indeed one who is unforgettable and I shall continue to hold value for myself + this hard-working brain that has oh-so-battled to regain.
Imagine being in your (intended) youthful adult years having to continually (#thereisneveranyescapingyourmind) struggle, compensate & adapt with such dark-&-gloomy conditions on top of all the loss, restrictions, judgement, alienation and uphill battles.
Even with considerable damage sustained and the ongoing struggles of such a bleak environment for so long (/indefinitely), it should be noted that survivors of brain injuries still (in my opinion, generally speaking) want to be out there living life, progressing through it with substance, excitement & spontaneity just like the next person + regardless of what has happened to us, the need to be included, appreciated, considered & celebrated like the rest of society should be incredibly important as it can help in boosting sacred morale + ensuring vital purpose and validation of one's life is kept in check.
Such a constant struggle shouldn't mean that people avoid, turn their back and/or judge, but this is the current tendency for those living with brain injuries and people feel totally comfortable in treating us that ignorant way because it is presently accepted.
Why do some still grapple to acknowledge and show sympathy for brain injury survivors who are constantly struggling to live on?
This should not be where our focus is after suffering something as catastrophic as stroke but so much time and energy has been taken up in sheer anguish over the lack of understanding, consideration and nurture that I have been dealt now as a young stroke survivor.
The poor behaviour and harsh actions by some towards those continually suffering from such mind torment needs to be called out; the invisible brain cloud is aggressive, extremely cruel and ever-shadowing the lives of those constantly struggling through life as a brain injury survivor, how others treat us should be the last thing we need to worry about.
Consider us. Respect us. Celebrate us.
Some have even suggested thinking of an injured mind as a window.
While a typical person may have an easily manageable & maintained piece of glass for their brain, this particular window is always dirty and no matter how rigorous & long you scrub, you just cannot take all the stains away.
With time and mighty hard work, some of the stains (pain, disability, loss, struggle & isolation) may be lifted (such is never promised by any means) but for many of us stroke survivors who weren't fortunate enough to receive appropriate medical assistance (I actively sought such within minutes of the second stroke which has specifically caused the most strife out of the two, yet the medical help I received was not appropriate for what I was suffering - at a world-renowned hospital for neurology! As it became quite clear, the emergency ward is not the neurology ward - which specialises in the complex mind and its vast science around the clock - hence the general assumption *not official diagnosis* of a virus of the brain - that initially frightened me more than a stroke given my previous ignorance about stroke, in particular - while hanging out in the emergency ward which led to the incorrect treatment given the second stroke's location was first hidden from view, deep inside the brain in the limbic system during the initial CT scan), the body's 'window' is continually opaque and there is no guarantee that it will ever be crystal clear again.
With time and mighty hard work, some of the stains (pain, disability, loss, struggle & isolation) may be lifted (such is never promised by any means) but for many of us stroke survivors who weren't fortunate enough to receive appropriate medical assistance (I actively sought such within minutes of the second stroke which has specifically caused the most strife out of the two, yet the medical help I received was not appropriate for what I was suffering - at a world-renowned hospital for neurology! As it became quite clear, the emergency ward is not the neurology ward - which specialises in the complex mind and its vast science around the clock - hence the general assumption *not official diagnosis* of a virus of the brain - that initially frightened me more than a stroke given my previous ignorance about stroke, in particular - while hanging out in the emergency ward which led to the incorrect treatment given the second stroke's location was first hidden from view, deep inside the brain in the limbic system during the initial CT scan), the body's 'window' is continually opaque and there is no guarantee that it will ever be crystal clear again.
We have no choice but to continually work hard at 'cleaning the window' & improving its visibility, trying to make out what little we can now see outside of it and how we can make the most out of what we have since been left with, continually struggling to find the purpose & joy in such and for the most part, an internal, invisible struggle which extent is not yet widely recognised nor understood by others.
Looks certainly can be deceiving -
"Brain injuries turn the familiar unfamiliar."
This is the starting point for an insightful video created by two brain-injury lawyers, De Caro & Kaplen, who have delved deep into the lives of those living with such constant struggle & extreme loss.
Both brain-injury lawyers know the urgent need for society to better understand the cruel aftermath of surviving a substantial brain injury and that it is not always as straightforward and apparent as it may seem simply by judging a survivor's physical abilities, appearance and the particular attitude to their acquired - yet unwanted-&-unwarranted - life.
The clever online vid offers a raw perspective not often revealed to the public about brain injury survivors and their vulnerability, along with their constant struggle + the added pressure set by our present society to 'just get over it - you're fortunate just to still be alive - and/or leave us out of it'.
This is the starting point for an insightful video created by two brain-injury lawyers, De Caro & Kaplen, who have delved deep into the lives of those living with such constant struggle & extreme loss.
Both brain-injury lawyers know the urgent need for society to better understand the cruel aftermath of surviving a substantial brain injury and that it is not always as straightforward and apparent as it may seem simply by judging a survivor's physical abilities, appearance and the particular attitude to their acquired - yet unwanted-&-unwarranted - life.
The clever online vid offers a raw perspective not often revealed to the public about brain injury survivors and their vulnerability, along with their constant struggle + the added pressure set by our present society to 'just get over it - you're fortunate just to still be alive - and/or leave us out of it'.
"If you’re a traumatic brain injury survivor,
are you frustrated by being told how lucky you are?
How your injury could have been much worse? How you look great?
For those suffering from a TBI it’s difficult to explain how they feel."
are you frustrated by being told how lucky you are?
How your injury could have been much worse? How you look great?
For those suffering from a TBI it’s difficult to explain how they feel."
Like an acquired brain injury (ABI), a traumatic brain injury (TBI) can also be known as an 'invisible injury' due to the vast range of effects that can be suffered by survivors which are not physically visible including debilitating aphasia, amnesia, fatigue & anxiety. They are extreme cases & not necessarily comparable with someone who is free of injuries to the mind (even if they too feel they have similar symptoms in their fully-functioning brains).
Despite such intense and constant struggles (that strike instantly yet linger indefinitely), such tough brain battlers may physically look 'fine'.
The 'invisible brain cloud' is just one analogy to help others better grasp such a complex illness constantly suffered by some survivors of brain injuries.
Australia's Stroke Foundation has its fingers on the pulse with the informative-+-encouraging podcast called Enable Me.
Such aims to offer almighty hope for those struggling to live on post brain attacks + help stroke survivors lead fuller lives; a major cause of my intense angst and prolonged misery is that my life has been so utterly limited for now almost a decade. The majority of my adult years have been spent in constant struggle, restriction, exclusion and deep inner pain - the prime youthful years cruelly snatched from my hands.
Simply knowing there are such considerate people helping + including stroke survivors who are so often forgotten by our current society truly warms my blood and you know I love to have the vital, iron-enriched fluid pumping around this hungry brain of mine!
Enable Me Podcast:
Episode 22 -
Hidden Disability
August 2019
Enlightening firsthand perspective from a TBI survivor about living with an invisible disability -
My Life with the Invisible Disability of Traumatic Brain Injury
Above: While it initially may seem like a supportive act to try to relate to what some stroke survivors (trying to live on with considerable effects) are always suffering with so you can make a quick connection to one another (essentially to feed the good ole ego), it ultimately is downplaying the extreme restrictions, confronting disabilities & vast, constant struggles (that an outsider could not simply + swiftly comprehend especially something as multi-faceted as the human mind) which have suddenly - and for so many, uncontrollably - been forced into their lives on a full-time basis.
Unfortunately, it isn't yet comparable to others for the majority of brain damage consequences caused by something as serious and complex as stroke.
Instead, I'd suggest commending stroke survivors on their individual rehabilitation journey, what is so often a constant challenge behind closed doors and not discussed, or even recognising what has managed to have been savoured; deliberately celebrate who they are in the present time whilst still acknowledging all that they have been through, how far they have come and what hope (no matter how little) that lies ahead.
Having a brain injury is now a part of who we (survivors of brain injuries) are, it is not to be dismissed and forgotten but it isn't to be the focus either; here we are now, let's embrace it and turn that heinous negative experience into a positive life-reaffirming journey for us all.
Here's a deep thought (+ compelling article) for you to ponder -
"Meals are generally acknowledged to be the most practical offering to be made to sick people and their families.
Not always though - certain illnesses do not elicit the 'casserole' response."
Maybe people keep their distance because they feel that the relationship is now regarded one-way and they may get nothing back as it is yet to be considered noble to support those with mental health struggles/brain injuries (like it is with less-debilitating illnesses that may physically present themselves), instead dismissing/avoiding/shaming/ignoring seems to be the accepted tactic by many in our present society #bethechange.
Think about it; when was the last time you cooked a meal as a supportive gesture for someone seriously struggling with their mind?
No doubt you have done the same for those with other illnesses (i.e.: Have a cold? Here's my renowned chicken soup!), so why is the mind cruelly tossed aside time and time again?
You can support brain injuries plus mental health diseases & conditions just the same as you support other illnesses with some tasty bites, no worries!
Thank you to the truly thoughtful souls who go against the (present) norm and have so kindly given considerate treats in my (mighty-long) hour of need, there definitely have been some compassionate supporters out there (and them + the divine meals are easily stored in the long-term memory bank so not necessarily done in vain #emotionalattachment), with a special mention to li'l sister, Jack Attack, & especially Mother Duck, who give such scrumptious joy on a regular basis
#nomnomnomnom.
Have you ever also noticed this concerning & incredibly ignorant trend (detailed in telling article by Australia's SBS, below)?
"The fact is that this is the second time in six months that I’ve faced a major health crisis, but it’s the first time that I’ve had anyone cook for me or bring me flowers.
Because last time it wasn’t a limb that needed to heal; it was my mind.
Despite the gains in awareness, it is still the case that most people experiencing a mental health crisis face stigma, silence, and isolation...Despite clear anti-discrimination legislation, almost a quarter of respondents to a 2014 survey reported being discriminated against or avoided at work after a disclosure of mental illness and about HALF of the respondents who had been job seeking perceived that they had not been hired because of their illness & close to 1/4 of respondents reported being discriminated.
...Despite clear anti-discrimination legislation, almost a quarter of respondents to a 2014 survey reported being discriminated against or avoided at work after a disclosure of mental illness and about HALF of the respondents who had been job seeking perceived that they had not been hired because of their illness & almost 1/4 of respondents reported being discriminated against or avoided at work after a disclosure of mental illness.The situation has a silencing effect; even those of us who try to brave the stigma and disclose to some colleagues or managers that we are undergoing treatment for a psychological condition are rarely as open about this as we might be about a physical illness or injury.
We shouldn't underestimate how important it is for people with mental-health struggles to be accepted and helped by those around them.
I've been struck by how healing it has been to be able to talk over the trauma of my injury and the frustrations of my recovery with friends, on social media and in the lunch room at work.
People are sympathetic. They're open about their own similar experiences. They are eager to help and to listen to me whinge about the everyday frustrations of reduced mobility.
Yet, I usually don't have the luxury of talking about the (arguably more serious) medical condition that has impacted on my life for many years.
I have great admiration for people who go public with their mental health struggles, working to lift stigma and refusing to accept that they don't deserve help and sympathy.
Recently a friend documented her experience with hospitalisation for major depression on social media, bringing light to a process that is often unseen outside sensationalised movie scenes.
Expressing her frustration at the stigma -- feared and actual -- of telling workmates that she needed help, she quipped, 'no one sends you flowers for a broken brain'.
I can only hope that changes. Maybe if I find myself in a mental health crisis again, I'll be brave enough to ask for the same flowers and chocolates that were forthcoming after my injury.
Or even better, maybe we can all work on being brave enough to offer the same care and sympathy to those we know are struggling with invisible wounds, and something altogether more complicated than influenza."
- By Donna Kay
The thought-provoking Australian documentary shines a much-needed light on the mental-health woes of young men and how a particular Aussie-Rules footy team has intentionally moved their goal posts (<<had to #punintended) so that the mental health of their team players is included in their top priorities with a supportive, open environment. Now, the blokes feel more comfortable about being vulnerable around each other instead of the former 'tough-guy' act that previously was the generally-expected (+ accepted!) vibe of the footy club.
Such a positive shift means the lads no longer have to suffer in silence and even get hugs off of their coach.
Too bloody sweet if you ask me!
Above: How my 'shattered' sense of self was like on the inside during those morbid years after the second massive stroke (which statistically speaking, should have been the death of me #overtwothirdsofstrokesufferersdiewithintheimmediateyearsfollowingabrainattack)
when I initially didn't even know if I was still funny (the heartbreak, truly), if I could possibly ever return to the classroom without scaring/confusing students given debilitating short-term memory loss, how to simply function independently with the recently-acquired extreme levels of anxiety & constant lack of (basic) spatial navigation, whether I was genuinely valued, considered and loved by others since I could no longer offer them what I previously had while now being one with complex special needs and/or if I could ever live a fulfilling life without around-the-clock assistance and extensive-+-agonising planning.
when I initially didn't even know if I was still funny (the heartbreak, truly), if I could possibly ever return to the classroom without scaring/confusing students given debilitating short-term memory loss, how to simply function independently with the recently-acquired extreme levels of anxiety & constant lack of (basic) spatial navigation, whether I was genuinely valued, considered and loved by others since I could no longer offer them what I previously had while now being one with complex special needs and/or if I could ever live a fulfilling life without around-the-clock assistance and extensive-+-agonising planning.
The wider impact of stroke, including the extreme socio-economic effects, in particular - how my Mum, while now being a great-grandmother wanting to retire and relax, has been forced to care for one of her adult descendants on a full-time basis coming up to close to a decade, how those sincere friends of mine have to be kind enough to include me in their plans + make me feel appreciated by them when I don't really have much to offer them now I'm brain damaged, plus how schools that I (fortunately am able to) work and volunteer at have to consider my particular restrictions while still honing in on my savoured knowledge and capabilities as a qualified primary school teacher + ensuring to value my input despite the blatant challenges - are what eat away at my life (and those closest to me), at my will and at my sacred progression through this ever-growing uphill crusade.
As I have cruelly (& unfortunately) witnessed firsthand as a young stroke survivor, our current society doesn't yet (<<operative word) seem to notice or have much sympathy for those with brain damage (generally speaking) despite what parts of the brain are still so brilliantly shining and easily accessible. I wish it was an ever-so-different environment, although I'm proactively out there educating the masses & raising awareness of stroke (especially for those in their youthful years #oneinfivestrokes) + its confronting aftermath (possible prevention, unavoidable strokes, identification, rehabilitation, visible + invisible consequences, direct + indirect struggles, attitudes + presumptions from outsiders and support for survivors & their carers/PAs) and the ultimate value of people who have suffered brain injuries, but you too can help shift the focus of stroke survivors in society from not being victims with whom you should judge, abandon &/or avoid (like is the currently-accepted expectation & tendency) but instead, determined (& celebrated!) survivors who have shown immense inner strength to rise out of those harsh, overpowering + extensive stroke ashes as a phoenix regenerated with new purpose and further worth than ever before.
Below:
A Helpful Chart to Explain the Difference Between Support (Validation + Hope) & Toxic Positivity
A Helpful Chart to Explain the Difference Between Support (Validation + Hope) & Toxic Positivity
It's time we all acknowledge such a conniving & egocentric form of manipulation presently disguised as 'support'.
It is not.
In reality, it actually is the last thing someone who is constantly struggling needs, just like you wouldn't give fruit & nut chocolate to a loved one who has a nut allergy as a 'get well soon' gesture when they have been admitted to hospital with an earlier reaction. It only makes the situation so much worse, even at times, life threatening.
Of course, such a treatment (/tasty 'treat') may be appropriate for someone else in a completely different situation, but for someone who needs pure support (and nut-free bites in the analogy's case) during extreme struggles, 'be positive' is not supportive and is in itself an oxymoron as the recipient then tends to feel horrible about their mindset when they previously were only getting by because they were holding onto their particular attitude to keep on going.
As I have found myself in the aftermath of two debilitating strokes, certain people can actually be poisonous to a stroke survivor's rehab journey and I am truly fortunate to be able to identify such with my particular executive functioning in the brain's frontal lobe still in fine (/exceptional, just ask the docs!) working order.
As I have found myself in the aftermath of two debilitating strokes, certain people can actually be poisonous to a stroke survivor's rehab journey and I am truly fortunate to be able to identify such with my particular executive functioning in the brain's frontal lobe still in fine (/exceptional, just ask the docs!) working order.
How can such a toxic approach possibly still be accepted in our otherwise-advanced world?
It certainly needs to stop.
Discover more -
“...Support is putting yourself in someone’s shoes and accepting their feelings for what they are.The hard-to-face truth is, supporting people isn’t about being 'positive'. In fact, when you force positivity down someone’s throat, it can actually have the opposite effect.
'Toxic positivity' can make people feel unsafe expressing their negativity and negativity thrives in isolation.
It can make people think there’s something wrong with them for not 'simply choosing' happiness and shame is negativity’s enabling best friend.
You can't sprinkle positivity dust on them and make their problems go away.
And honestly, when people are seeking help & support, they're usually not looking for straight-up, inspirational poster positivity.
More often, they're looking for validation that their negative feelings are OK.
If sympathy is shouting down at someone while they're stuck in a hole, empathy is getting into the hole with them.
If toxic positivity is telling someone to 'just look at the bright side' (<<best to never say that in a serious situation, it only downplays and cruelly shames), support is putting yourself in someone else’s shoes and accepting their feelings for what they are."
- By Sarah Schuster
Do become familiar with the sneaky-yet-definite contrast between genuine support & toxic positivity; one may not have even previously realised they're using such harmful words to someone who is struggling given such harsh communication seems to be so currently accepted by a concerning number in our society. Unfortunately, the majority of the ignorant phrases (in chart above) have actually been said to me (instantly put in the broken brain's long-term memory bank given absolute shock & disappointment felt #emotionalconnection) during such an already-challenging-+-alienating ordeal over the majority of my adult years that has seen my entire life ripped out from under my feet & with it, the previous purpose, progression & joy it once had. Such careless remarks can still be considered acceptable by some in society, but as the article wisely points out, you don't yell at a flower to 'just' grow; you give it nutrients, nurture, water & sunshine - unconditional support.
- By Sarah Schuster
Do become familiar with the sneaky-yet-definite contrast between genuine support & toxic positivity; one may not have even previously realised they're using such harmful words to someone who is struggling given such harsh communication seems to be so currently accepted by a concerning number in our society. Unfortunately, the majority of the ignorant phrases (in chart above) have actually been said to me (instantly put in the broken brain's long-term memory bank given absolute shock & disappointment felt #emotionalconnection) during such an already-challenging-+-alienating ordeal over the majority of my adult years that has seen my entire life ripped out from under my feet & with it, the previous purpose, progression & joy it once had. Such careless remarks can still be considered acceptable by some in society, but as the article wisely points out, you don't yell at a flower to 'just' grow; you give it nutrients, nurture, water & sunshine - unconditional support.
Why is it still so hard for some to treat others with the same compassion & consideration?
"Being positive has become a new form of moral correctness."
- award-winning Harvard-Medical-School psychologist, Dr Susan David, founder & co-director of the Institute of Coaching at McLean Hospital of Harvard University Medical School + an instructor in psychology at Harvard University & also the author of #1 Wall Street Journal best-seller, Emotional Agility (= a very busy + clever person!).
Brain whizz, Dr David, has also given an enlightening TED Talk on how a positive mantra can actually turn out to be a negative influence on your life -
How to Be a Better Human:
The Gift & Power of Emotional Courage
Just Say 'No' to the Cult of Positivity -
- accepting our real feelings as they are instead of dismissing them with a fake mask is thought to be more beneficial for us in the long run.
YES!
Below: A recent instant example of someone I had only just met sprinkling their good vibes and blessed belief all over this struggling stroke survivor.
Including the little neg that I'd forget them in five minutes' time (#tooright #strokesgettheblokes) being balanced with his own memory challenges with retaining people's names given the brain's hippocampus-hindering alcohol session.
Life is far more fulfilling when you make connections and feel genuinely valued.
^^The world needs more people like this quality lad!
Life is far more fulfilling when you make connections and feel genuinely valued.
Disappointingly, there has been a distinct shift in some people's treatment since the brain attacks due to the (current & concerning) ignorance of strokes & acquired brain injuries + the widely-accepted avoidance climate (especially for those who suffer such when young), the unwarranted stigma attached to mental health woes & my (perceived) worth to them now with all that I have lost in brain abilities, life progression & social status.
It is truly mind boggling that it is currently accepted by society as a whole (#elephantintheroom) and that any issues since strokes with friendships seems to be put on the person with the brain injury, regardless of what part of the brain the injury struck, what they are constantly suffering from, how much they give to the friendships & the poor treatment they can be dealt.
It is truly mind boggling that it is currently accepted by society as a whole (#elephantintheroom) and that any issues since strokes with friendships seems to be put on the person with the brain injury, regardless of what part of the brain the injury struck, what they are constantly suffering from, how much they give to the friendships & the poor treatment they can be dealt.
Time for action. Let's be more like the kind-and-clever fella above!
July 2019
A simple way to show genuine support - 
Above: A prime example of the kind of support, belief and reassurance a young stroke survivor (whose life was essentially ruined as they woke up for the day ahead) needs from others, even years later.
While I apologised for my repetitive nature (with the first message to one of my older siblings in the event I sent him the same photo already) that comes with losing one's hippocampus, one of my kind big bros (there are five *volunteer* security guards/bros who are incredibly supportive + nurturing of me & this challenging life chapter - fortunately so are all my fam which isn't always the case for stroke survivors, who are so often abandoned/avoided/judged/dismissed by others in society #unacceptable) looked at the bright side of a (here's hoping, temporary) trait others could (& certainly do) easily get annoyed about and accepted me just the way I (now) am, brain damage & all.
What a true blue gem!
Thank you for loving me at my worst, sincere sorts! It is what makes all the difference.
August 2019
A telling article about the disappointing byproduct of stroke not often discussed but (currently-seems-to-be) widely accepted & even expected -
Friends: Where Did They Go?
Friends: Where Did They Go?
(^^*'Friends')
At present, if someone abandons a person with a less-debilitating &/or fatal illness (than stroke #secondbiggestkiller #numberonecauseofadultdisability), society seems to openly judge the poor treatment by others + their cruel abandonment - & rightfully so.
Yet, even with such promising advances in medicine & the world in this modern day & age (including insightful, witty brain blogs!), if one dismisses &/or abandons someone who has suffered/survived a brain injury, others generally don't bat an eyelid by such cruel treatment, it's ALL on the person who has had the cerebral infarction.
Currently, the common presumption seems to be that the person with brain damage must be the problem.
Are we really that simple-minded a species?
It is absolutely appalling how little society (people from all backgrounds & age groups) presently tends to regard people with brain injuries (#survivors) & urgently needs to be addressed as seriously as poor treatment towards those with other illnesses (that statistically are not as harsh/fatal/life-changing as stroke).
Below: As a two-time stroke recipient, surely I am allowed to make jokes about strokes & if you are a shining supporter in my company, you too can make jokes about the two 'bloody' strokes (my kind family & mates certainly did from day one when I was a distressed Dory in a hospital's neuro ward on the brink of death!) - the more the merrier actually. It helps lift the mood - self-deprecating humour is the Aussie way after all!
Especially at (incredibly-lame 'sitcom') The Big Bang Theory's expense!
*Laugh with me, not at me though 😊.
The heartbreaking effects of stroke are vast + complex and absolutely soul crushing, for all involved -
"It was really confusing for me, not understanding why Mum didn't know who I was or what my name was,"
- Portia Green,
daughter of young stroke survivor, Judi Green,
explains.
"That made me quite angry at her. My brother and I just didn't respect her much because she didn't even know our name. I kept saying that I just wanted the old mummy back."
On top of not having any memory of her own children after a stroke, Judi Green also struggled with her speech which often made little sense to others.
Like the second massive brain attack, Judi surprised doctors & survived the stroke (that struck her mind at 39), also going back home after just a month of testing and rehab at hospital (home is said to help move things forward for a survivor after the initial hospital rehab, it by no way means you have recovered) & struggled to adapt to this suddenly-newfound world that was cruelly forced upon Judi & her family.
It took a substantial 10 YEARS of hard work to exceed her doctor's expectations & regain lost skills, including simply speaking, driving, cooking, running & memory retention. Otherwise-standard skills I too have had to relearn (& continue to improve on) post Stroke 2.
Later, when Judi's daughter, Portia, grew up, she became an assistant nurse and it was through her medical profession and particular focus which included working with stroke sufferers that Portia gained 'massive insight' into her mum's own tortuous struggles as a stroke survivor.
"That was the pivotal moment when I went, 'oh my gosh, there are two sides to this story',"
- daughter of young stroke survivor, Judi, Portia, explains,
"& I can't imagine how hard it would have been for my mum. Maybe everything isn't her fault."
Portia's sage advice for other stroke survivors and their supporters?
"There is hope for everybody".
YES!
Discover more about such a dynamic duo -
Thanks to Toronto's Centre for Addiction & Mental Health (CAMH), a useful technique has been established to assist in identifying the likelihood of someone developing Alzheimer's disease -
Predicting Alzheimer's Disease =
If You're Not Aware of Your Memory Concerns, You May Develop Dementia
If You're Not Aware of Your Memory Concerns, You May Develop Dementia
As a starter, an analysis of whether patients are accurately aware of their memory concerns helps in deciphering if someone is at risk of developing Alzheimer's disease.
Skilfully, CAMH used patients' awareness of their memory concerns as the basis to predict whether the patients were likely to develop Alzheimer's disease later down the track. According to the Journal of Clinical Psychiatry's study, people were more likely to progress to debilitating Alzheimer's disease if they were not aware of their memory loss (like I was not initially conscious of - in terms of true extent - with life-hindering anterograde amnesia aka short-term memory loss after losing the part of the brain first struck by Alzheimer's disease, the hippocampus), a condition called anosognosia.
Intriguingly, although short-term memory loss is a renowned early symptom of Alzheimer's disease, its mere presence does not always reflect one developing dementia in the future.
However, the insightful study also found those who were aware of their particular memory problems were considered unlikely to develop dementia.
As someone who lost the brain's cherished hippocampus (often the first part of the brain to die from Alzheimer's disease), I can vouch for the 'awareness' factor as during my time at hospital, darling Nurse Gilly made a point of telling me that while my brain was generating new neural routes around the two 'chunks' of cerebral infarctions in those initial weeks, my particular demeanour was gradually changing from being initially carefree & jovial to then anxious & emotional due to the injured mind's axonal sprouting of new neural pathways (around the damage) then allowing the ability to eventually grasp the actual severity of the dire situation and all that I had tragically lost in my life + the heartbreaking life I'd now be forced to lead ahead - indefinitely - as a horrible result.
As it would come to be, many agonising months were spent in morbid limbo when I wasn't even sure of my own existence (which would have been even more upsetting and challenging for my full-time carer, Mother Duck, to witness & care to + she then had to go to work as a mental-health registered nurse too so absolutely no break from dealing with extreme mind woes of others for her, the absolutely selfless sort) until I eventually accepted & effectively processed the extreme devastation that had happened in both our lives.
In the above enlightening article by Australian TV channel, SBS (move over 'Sex Before Soccer'; SBS now stands for 'Strokes Before Soccer' - *facetious humour intended*), a man who suffers from dementia is asked to repeat just three words merely a few minutes after being told them. Seems pretty simple (& even fair to say, condescending) to most, but with dementia first tending to strike the brain's hippocampus (the mind's 'memory reception'), the lovely ole chap could not remember the first two (only holding onto the very last one, perhaps because he was continually repeating it until being asked to say it a few seconds later - a coping strategy I did myself during such confronting rehab tests, not then realising that there were actually two other words beforehand because I had forgotten all about them).
This is exactly what my bi-damaged brain was like after Stroke 2 that suddenly killed the hippocampus (mirroring the start of Alzheimer's disease that tends to obliterate the brain's hippocampus initially).
Below: Witness the beautiful mind shining during such devastating destruction -
However, the insightful study also found those who were aware of their particular memory problems were considered unlikely to develop dementia.
As someone who lost the brain's cherished hippocampus (often the first part of the brain to die from Alzheimer's disease), I can vouch for the 'awareness' factor as during my time at hospital, darling Nurse Gilly made a point of telling me that while my brain was generating new neural routes around the two 'chunks' of cerebral infarctions in those initial weeks, my particular demeanour was gradually changing from being initially carefree & jovial to then anxious & emotional due to the injured mind's axonal sprouting of new neural pathways (around the damage) then allowing the ability to eventually grasp the actual severity of the dire situation and all that I had tragically lost in my life + the heartbreaking life I'd now be forced to lead ahead - indefinitely - as a horrible result.
As it would come to be, many agonising months were spent in morbid limbo when I wasn't even sure of my own existence (which would have been even more upsetting and challenging for my full-time carer, Mother Duck, to witness & care to + she then had to go to work as a mental-health registered nurse too so absolutely no break from dealing with extreme mind woes of others for her, the absolutely selfless sort) until I eventually accepted & effectively processed the extreme devastation that had happened in both our lives.
Fortunately, in my particular situation, I had the added bonus that my bruised brain was improving with every day so my heart truly goes out to those constantly suffering from Alzheimer's disease who do not get such a luxury as hope.
+
In the above enlightening article by Australian TV channel, SBS (move over 'Sex Before Soccer'; SBS now stands for 'Strokes Before Soccer' - *facetious humour intended*), a man who suffers from dementia is asked to repeat just three words merely a few minutes after being told them. Seems pretty simple (& even fair to say, condescending) to most, but with dementia first tending to strike the brain's hippocampus (the mind's 'memory reception'), the lovely ole chap could not remember the first two (only holding onto the very last one, perhaps because he was continually repeating it until being asked to say it a few seconds later - a coping strategy I did myself during such confronting rehab tests, not then realising that there were actually two other words beforehand because I had forgotten all about them).
This is exactly what my bi-damaged brain was like after Stroke 2 that suddenly killed the hippocampus (mirroring the start of Alzheimer's disease that tends to obliterate the brain's hippocampus initially).
It may seem incredibly preposterous to those who haven't had their mind's hippocampus
suddenly taken away (it even seemed far fetched to myself as I was experiencing it
firsthand and after, when people were relaying the challenge to me! 'No, I couldn't possibly be forgetting something just a few seconds later - after all, I'm renowned for my exquisite 'elephant memory'!'), but it is indeed the brutal reality for those who so cruelly lose such a vital part of their being, their purpose, their life.
Also in the eye-opening article, a young Australian lad, Jeremy Cassar, reflects on his grandfather, Robert Zarb's difficult struggle living with dementia that includes the sheer torment of being unable to simply get the right words to express oneself being made only worse by the fact others then treated him like a child (this too has indeed happened in my life since strokes with some people I come into contact with despite my particular executive-functioning part of the brain - its 'CEO', if you will - still in fine working form, receiving high results in official & comprehensive neuropsychological assessments).
"All we could do was hold onto the memory of who he was before the decline & try our hardest not to let the image of this deteriorating alien linger in the memory.
The focus needs to be on what is still capable & shining, not on what has been
lost.
One of the most frustrating realities for both my Nonno, as well as for us, is the fact that for much of the decline it was as if he was aware of it, but couldn't do anything about it...
Often the words hung on the tip of his tongue and watching the process of trying to spit them out was torturous. We’re an emotional family and I often wonder if we were perhaps a little too impatient in these moments and didn’t create the silence to communicate as much as he was capable.
My Nonno cottoned on to the fact we were treating him like a child and it was obvious he didn’t like it."
My Nonno cottoned on to the fact we were treating him like a child and it was obvious he didn’t like it."
- young Australian, Jeremy Cassar,
reflecting on his dear grandfather's constantly-challenging, alienating world (living with dementia) in the above article.
Below: Witness the beautiful mind shining during such devastating destruction -
