"There's a stigma attached to strokes that prevents people from talking about it. What I would say to survivors, what I want them to know, is to never give up hope. Just because you have a disability resulting from the stroke doesn't mean it is necessarily permanent."
Jim Baranski, former CEO of USA's National Stroke Association for 11 years
Above: An inquisitive Kitty checking out the mind's inflamed blood vessels, offering them some calming words
For the most common type of stroke - ischemic stroke - emergency treatment focuses on medicine to restore blood flow. It is as simple (& yet so marvelling) as that.
A clot busting drug known as Tissue Plasminogen Activator (TPA) can help break up blood clots in the arteries of the brain, making it highly effective at minimising long-term damage, but it must be administered as soon as possible. We are talking given within 3 - 4.5 hours of the initial stroke symptoms (which isn't always feasible if you, the stroke sufferer, and anyone that may be in their company during a cerebrovascular accident are not aware of the stroke FAST symptoms, as well as promptly acknowledging and then seeking appropriate + immediate treatment such).
Haemorrhagic strokes have shown to be more difficult to manage. Treatment usually involves attempting to control high blood pressure that can cause weakened arteries to burst (as shown in LHS of visual below), bleeding and brain swelling (aka cerebral edema - what an intense headache! *pun intended*), including the surgery a young woman I know had which involved having a craniotomy to let her brain have space to swell. If someone who has had a stroke needs emergency surgery to remove part of their skull to gain physical access to the mind, the detached piece of skull can be kept in their abdomen until swelling has subsided (typically, within a few weeks)! How amazing is science and the brain?! Love it!
It may interest you to learn that after my particular brain biopsy in November 2012 which involved the surgeons drilling a 'burr hole' (out of the cranium's */skull's* outer layer) the size of a decent grape or two in order to retrieve a sample of my mushed-up mind and I managed to survive (hurrah! Surgeons are spot on - here is a piece highlighting the superstar surgeon that did my particular brain biopsy's surgery who has since retired *perhaps I helped him complete his bucket list hence retirement?!*), I felt no pain whatsoever in its wake. Despite being truly petrified that I was certainly going to die from the brain surgery itself (I went to the surgery with friends taking days off work to calm my nerves - thank you!) and the results coming back as 'inconclusive', I now would offer support, perspective and clarity to others who have to experience such a confronting, yet standard, brain operation.
Just a 'normal' day in the office for the competent brain surgeons after all! The real people we should be celebrating on social media; souls with substance.
Below:
Initial medical treatment for haemorrhagic strokes vs. ischemic strokes
It may interest you to learn that after my particular brain biopsy in November 2012 which involved the surgeons drilling a 'burr hole' (out of the cranium's */skull's* outer layer) the size of a decent grape or two in order to retrieve a sample of my mushed-up mind and I managed to survive (hurrah! Surgeons are spot on - here is a piece highlighting the superstar surgeon that did my particular brain biopsy's surgery who has since retired *perhaps I helped him complete his bucket list hence retirement?!*), I felt no pain whatsoever in its wake. Despite being truly petrified that I was certainly going to die from the brain surgery itself (I went to the surgery with friends taking days off work to calm my nerves - thank you!) and the results coming back as 'inconclusive', I now would offer support, perspective and clarity to others who have to experience such a confronting, yet standard, brain operation.
Just a 'normal' day in the office for the competent brain surgeons after all! The real people we should be celebrating on social media; souls with substance.
Below:
Initial medical treatment for haemorrhagic strokes vs. ischemic strokes
Through my own research, I have found one cause of stroke is atherosclerosis which is hardening of the arteries, making it easier to form clots that can cause ischemic strokes. Plaque made of fat, cholesterol, calcium and other substances builds up in the arteries (what a visual!) creating clots, leaving a rather narrowed space for blood to attempt to flow past, which - as I'm sure my clever readers are well aware - means the brain is not receiving free-flowing blood, thus causing an ischemic stroke (hence why my cholesterol levels were continually checked & analysed after both strokes - perhaps due to an intense love for porridge, my particular cholesterol levels turned out to be perfect. Don't look so shocked, mates! Remember that 'perfect anatomy'?! Thank good mate, porridge, and researchers from the University of Aberdeen for feeding the healthy addiction of many!
Do get on board this mind meal too).
Stroke - one major reason why you should try be aware of your particular cholesterol levels and actively reducing high ones (with heart-smart porridge - instant example!).
Below: Helping to prevent strokes by removing plaque that then unblock narrowed carotid arteries (quite the visual), as well as reducing risk of future clots -
Do get on board this mind meal too).
Stroke - one major reason why you should try be aware of your particular cholesterol levels and actively reducing high ones (with heart-smart porridge - instant example!).
Below: Helping to prevent strokes by removing plaque that then unblock narrowed carotid arteries (quite the visual), as well as reducing risk of future clots -
Above: A handy metal tube (stent) can be temporarily inserted through a catheter into the artery where a tiny balloon is put in place to widen the area that is narrowed by plaque.
Do check out this intriguing piece on some medical sorts performing their day jobs with a carotid endarterectomy.
What a vivid visual! Let's be proactive rather than reactive with our daily bowl of wholesome heart-&-brain-food porridge. Boom!
What a vivid visual! Let's be proactive rather than reactive with our daily bowl of wholesome heart-&-brain-food porridge. Boom!
Because my second stroke occurred in a tiny region of the brain known as the hippocampus (Greek word for 'seahorse', which you may have deduced seeing as hippopotamus is a 'river horse'), it was difficult for doctors to initially identify what was actually happening, thus Stroke 2 was not stopped in its tracks (much like Stroke 1 - twins!), meaning I received full possible damage which makes rehabilitation all the more extensive and enduring (Act FAST when one is hit by stroke would even apply to educated doctors who see you within minutes of your symptoms - if only they had in my case). As a result of the loss to the part of my brain that is the mind's 'reception' for our 'memory banking's office', most of what initially happened in my newfound damaged brain's world truly did go in one ear/eye/nostril/tastebud/skin pore and out the other, so was the extent of the severe short term memory loss after killing off memory-forming Hippo-C in October 2012.
Given such a vast loss of the mind's advanced functions, my mental state could be described as confused and erratic for many months after the second stroke which is why I was initially being incorrectly treated for a virus of the brain which also causes such concerning symptoms instead.
Thank you to those who have consistently tried to grasp the damaged mind's effects precisely and with non-judgemental acceptance, nurture and understanding.
You are the Kitty Kat's meow!
Thank you to those who have consistently tried to grasp the damaged mind's effects precisely and with non-judgemental acceptance, nurture and understanding.
You are the Kitty Kat's meow!
Time lost is brain lost - don't I know it (and now so do you! Yes!)?!
The moment you arrive at hospital and the medical team have assessed your condition with brief analysis and testing (thankfully they did this immediately after my admission in October 2012 when Stroke 2 hit, although after Stroke 1 in July 2012, medical staff ignored my state for many hours whilst my concerned colleagues - thank goodness for them! - grew increasingly frustrated and eventually demanded I be taken seriously and treated for what was only (& obviously) worsening - I was not even capable of standing up for myself. Anybody who knows me well knows this is ringing alarm bells and something serious must be happening to my mind! Please be forthright in a stroke emergency - even with medical staff - if you are/someone in your company is experiencing symptoms *that are more than a headache*), you are taken off for a range of sophisticated procedures (some to break up clots, others to relieve pressure on the brain by removing skull, the list does go on - all aimed to swiftly regain blood supply to all areas of the mind). I thought I was moments away from dying, yet still tried to keep my composure/sleep it off. In hindsight, that was perhaps a reflection of the extent of the brain damage and as the weeks progressed, I became more frightened of not only what was ahead, but also what we had so awfully endured. Nurse Gilly reflected on the initial weeks vacationing in hospital when I was at my most brain damaged and unaware as being filled with laughter as I was vastly ignorant of the severity (explains why I wrote a mere text message to my boss casually saying, 'give it a week' before I was back at school and also why I had dear friends pay all of my upcoming holidays abroad as I thought I'd be going on such after the mind's inconvenient issues *i.e.: paying my own bills using pins and passwords that my mind typically knew - turns out 'off by heart' doesn't complement strokes!* had subsided)! Eventually, when the bi-damaged brain did slowly but surely improve (like the medical masters and superstar mates predicted - magic!), I resented the newfound/regained awareness (what my life had drastically and suddenly lost - directly and indirectly, the stagnate nature life/'life' had suddenly become and the long, ever growing, road of rehab *not recovery* ahead to name a few raw realisations in those early days), yet also acknowledged that the more my awareness grew, the better the (damaged) mind was becoming, the extent of independence flourished and the more likely I was to survive, coming out the other end with more tales than Keith Richards (but perhaps just as much damage to the mind!). Strokes striking only showcased my will to live was as fierce as a lion! Reow - Kitty Kat at your service!
Your life becomes simple during this chaotic time where you only want the people who truly matter to give their two cents and the people who make your condition about themselves noticeably drain you. Thankfully, I now am more able to dismiss the 'mosquitos' sucking the life out of me, but brain damage did not help with assessing and judging in the initial aftermath as a stroke survivor. This is how some people with brain damage can and do get taken advantage of and treated poorly. Whilst being incredibly frightened about impending (possible) death, the varied ghastly procedures you'd only see in movies being on my agenda every single day and all the while being oceans away from immediate family, as well as having to now live with this newfound brain damage (that's vast extent I was initially unaware of as was the intensity of the brain damage's effects), you do also have to worry about petty friendship politics. Why haven't they simply messaged? Why have they messaged others about your condition, but not yourself? You are capable and worthy, it wasn't your entire brain - why the avoidance? The judgement? The pity? Why do they disregard you as a human being now? Why do some still not understand despite it being carefully explained to them? Why haven't they visited yet and use weak excuses as to their logic for avoidance? Why are they frightened to see you after a stroke, making the awful situation you're in day in, day out now all about them? Why do some regard it as something you brought on yourself - implying you deserve it - when doctors & extensive medical testing have clearly stated otherwise and that the strokes you suffered and their particular awful effects were unavoidable? Why can't they simply be there for you like the other kind souls standing by your side? Is it not 'in' to support someone with a brain injury?!
Sophisticated thinking is required when your life is at its most basic.
A friend in need is a friend indeed. Thank you to all the mighty fine pumping friends!
Add to social angst, you are regularly being taken away for testing like you're suddenly a little old lady on her death bed by a constant stream of new specialists who tell you how to dress, demanding you take off all your precious belongings and trust them with it. Admittedly, some of the staff occasionally would give a look of pity and others would look at you like you'd expect someone to look at another who is classified as brain-dead (not brain damaged - there is such a difference and if someone can't tell the difference, it says more about them than the brain-damaged soul). It's not all of them - the majority are incredibly wise, genuine, sympathetic and noble medical professionals who have you worship their intellect, empathy and grace. Social media mates for life who do check in on my tender brain's progress which warms my heart to no end! Whenever I had the agonising and invasive procedures regularly performed by relative strangers/specialists (you want to 'massage' my entire body checking for blood clots?! Are you sure you work here, mate?!) , I was always relieved to be back in my/St George's Hospital's 'locked' Neuro Wing with my familiar Nurse Gilly and roomies (+ friends who would take days off work to simply deflect with their warm company after surgeries - selfless sorts)! After the first stroke in July 2012, one of the hospitals I was at in London had a rooftop for my 'guests' who would surely jump onto the sun loungers with glee (never complaining about missing out on their sun soaking in a glorious action-packed park with healthy mates, tunes and celebrations during the vibrant summer days)! Their positive attitude & humbling priorities whilst I was fearing for my life was simply contagious and a welcomed deflection to the confronting procedures and nature of having survived (and now living with the harsh aftermath of) a massive stroke (or two). How truly fortunate was I to get to be alive and hang out with these rad sorts albeit while at hospital?! Thank you!
"People will forget what you said. People will forget what you did. But people will never forget how you made them feel."
Maya Angelou is a poet and award-winning author known for her acclaimed memoir I Know Why The Caged Bird Sings and her numerous poetry and essay collections. Clever Cookie.
Life as a stroke survivor often feels like a caged bird existence.
Always restricted, always wanting what is beyond the cage, yet trying to simply live in the moment and look for the bright side of your newfound direction.
Always restricted, always wanting what is beyond the cage, yet trying to simply live in the moment and look for the bright side of your newfound direction.
Bonus points in this round of life!
Your brainwaves can show signs of a virus (such as Encephalitis which was initially and incorrectly presumed for Kitty Stroke #2).
Magical science!
An electroencephalograph (EEG) test looks at your brainwaves and can show abnormal electrical activity (through wires attached to the EEG machine) that occur if you have a virus (along with the lumbar puncture) - in my particular case, Encephalitis (which is one of many terms that was thrown my way before Stroke 2 was finally acknowledged due to the vast extent of short term memory loss in late 2012). Several small patches (electrodes) are attached to your scalp to test the brainwaves which then communicate with each other by producing tiny electrical signals called impulses. Cute! This was a soothing test and the woman/nurse/perhaps-a-stranger that snuck into our locked ward just to touch my 'holy' head was quite lovely :).
Long term memory = emotional connection!
As many who have been in hospital can relate (especially any with a brain injury that affects their ability at simply being independent) and attest to, I didn't completely understand why I was having majority of the complex and extremely varied surgeries and/or procedures during the 6-week stay (vacay) at London's St George's Hospital in late 2012 (I understood why I was having the tests after the first stroke though in July 2012, as my brain was able to still grasp and comprehend information and competently store the important/necessary elements for the most part - not as fortunate at such post Stroke 2). Generally speaking, my mindset (and one I recommend to anyone who finds themselves unwell and/or in hospital) was to trust the well-educated, world-renowned St George's medical staff completely (fortunate for them! It would be quite the difficult and daunting process if someone was irritated by the standard medical procedures and assistance they give due to the effects of their particular brain damage!), never to Google any of those concerning surgeries I was about to have (no two strokes are the same - read this revealing CNN article in regards to such and general ignorance by society, especially the young *strokes don't discriminate - age is not a factor. Babies have strokes. 26 year old - otherwise healthy, low-risk-of-stroke, teachers - have strokes. Anyone could have a stroke at any time and the risk of stroke in people under retirement age is increasing*!), complex yet highly unfamiliar terms they used to describe the many procedures and/or my alarming condition. The focus was always on attempting (your very best!) to go with the flow whilst in their care and do whatever was necessary to get back to 'normal' (even if that was going on a drug that meant I'd go through menopause in just a few short years!) and I rarely felt a desire to learn more than what the medical staff had divulged about such highly complicated, serious and/or invasive procedures (family and friends indeed did this instead whenever they read my chart or received a message from a distressed Kitty Kat where they then promptly spoke to my nurses/murses and/or used the trustworthy/untrustworthy ole Internet to help educate them). Always an avid learner/'Googler' in the 21st Century, this reluctant attitude that developed immediately after the strokes was a little bit of a surprise to myself (probably to others as well), but considering what those English docs and surgeons did after the first stroke and then again just three months later, immediately after the second stroke, what was happening in my little damaged brain and just how dire my situation then was (I should not have survived two strokes, let alone be able to still do MJ dance moves, successfully make my own breaky and be back in the classroom with no further strokes...yet! 2.5 years and counting :)), I am utterly relieved I didn't look into all the medical jargon they threw our way in those first few months (unlike all my concerned family and fans!).
If you experience a stroke, chances are you will be required to go into a little 'medical coffin' in order to have an MRI which scans your brain and takes photos - my radiologist described it as 'going into your mind and cutting it up into little pieces' (Pink Floyd style). The medical professionals have played the likes of Phil Collins and Mozart into my headphones as a deflection tool on some occasions, but you can't hear the calming music very well over the 'shovels' banging away in the scanner. My advice would be to simply close your eyes, pretend you're on a (noisy, shovel-banging-on-hard-surfaces prevalent) beach and daydream away. Perhaps create a little haiku while you're in there - you could also have Mozart played in particular to ignite your serotonin creative juices (it is said classical music also helps with short term memory *why I am quite a fan of playing it during lessons as Miss Laird*! Purely to improve the brain function of my Mother Duck, I obviously 'let' MD listen to her music when together in the car. Selfless *new* Kitty to MD, haha!).
Short term memory loss was a highly valued trait during these eerie, invasive and unnerving tests. Boom!
The message below is two weeks post Stroke 2 in November 2012 (a few days before the birthday that was initially planned to be celebrated in Amsterdam - forget cake, this is the birthweek treat!) when an endoscopy was executed - not the kind of test you'd expect after surviving a stroke, but one that surely provides plenty of laughs in its aftermath - especially when you have anterograde amnesia and have no idea why your throat is noticeably sore nor why you have a sign above your bed that means no nurse or supportive mate can you a little bite to eat (many perils to stroke rehabilitation- 'nil by mouth' = sad times! Especially on steroids - I honestly have never felt quite so ravenous in my life! Poor family & mates having to hear about such starvation every couple of seconds, no wonder they always brought in chocolates).
Fortunate to have the funnies from wise mates!
Even when petrified about impending death during those initial weeks of testing & rehabilitation while in hospital. This refreshing mindset comes highly recommended.
You just don't realise the extent of examinations and surgeries required in the aftermath of damage to the brain ('but I survived so why do we have to keep going on about it with these invasive tests?') until you're lying there getting a camera shoved down your throat and another one inserted into your groin's major artery! Sure the strokes happened in one organ, yet various other organs and body parts are continuously being prodded and poked not to fix your brain but to try understand your entire body and its various systems and how they failed you at 26. You quickly realise just how complex our minds are to possibly be affected by a smorgasbord of issues with other organs.
Endoscopy = eating (!!!!) a camera to take x-rays of your insides in order to detect inflammation, ulcers and/or tumours of the oesophagus, stomach and duodenum.
It is also done to dilate narrowed arteries, which is what they were concerned I particularly had (which may have caused the two strokes).
Oh also - you may have a stroke or even a heart attack in its harsh aftermath - they warn you of this before you agree to be violated by the camera (probably for legal reasons).
It is also done to dilate narrowed arteries, which is what they were concerned I particularly had (which may have caused the two strokes).
Oh also - you may have a stroke or even a heart attack in its harsh aftermath - they warn you of this before you agree to be violated by the camera (probably for legal reasons).
Basically, an endoscopy allows docs to look at the insides of your oesophagus, stomach and duodenum, checking for inflammation, ulcers and tumours without the need for invasive surgery (although they needed to heavily sedate this particular individual - some people can swallow the camera straight up, no worries!) . Strokes and the cause of such truly do reflect a magnitude of a brain's woes all around the body (it's beyond the mind, that's what makes strokes actually lack discrimination - various organ issues can and do result in stroke. Let's all be aware). Naturally, I felt incredibly violated by such a procedure and it was instantly in my mind's long term memory bank despite a fierce case of anterograde amnesia (emotional connection!). A little (felt MASSIVE!) scope/camera is shoved down your throat where it then makes its way down to examine your digestive tract looking for stroke answers. In hindsight, they may have encouraged this particular examination purely for the laughs in the aftermath when - given my short term memory loss - I had no idea why I was unable to eat anything substantial when people visited afterwards (i.e.: all the treats they brought in nor the decent meals were allowed to be had before all the tests + not even pudding NHS had created *just for me, right?!* offsite! = sad times) which certainly had an entertaining element - my throat was noticeably battered by the angiogram/camera and I was initially confused about such (despite experiencing it while conscious earlier that very day). Being supportive sorts, they enjoyed this memory loss instance (I hope!) and I certainly encouraged the laughs! It's not every day you 'get' to have a camera surf/hang ten down your throat!
Endoscopy - as bad/invasive/traumatising as it looks
As a result of the initial severe short term memory loss (which made my particular emotions quite erratic - thinking I was about to die/already dead *Cotard's Syndrome*/concern over disappointing my ever-supportive Twickenham school and class/loss of upcoming planned trips overseas/worried about where my Australian family members were considering my mortality was considered a nearing likelihood. Of course, some fam were en route to London within a few weeks once the severity of my strokes' effects were realised, of course, I had just forgotten, naturally). Thank you dear Nurse Gilly & Co for handling it so very well. I'm your biggest fan, St George's Hospital gurus!), a virus of the brain was initially what I was being treated for (and remember - time is brain for particularly treating a stroke!). Despite my first stroke (and the increase in disability and death rates with recurring strokes) causing a range of devastating long-term effects, I was somewhat relieved (whilst still utterly confused given severe lack of short term memory) to be told we were dealing with another stroke (I wrote a basic text message to my boss giving him a heads up about my condition simply saying 'give it a week'! That was early November 2012 - he's now no longer my boss :(), as I had deluded faith in my comeback from stroke (now, I don't have much faith in say, surviving a third). It may interest you to learn that many people in my corner seemed to react more worried about the brain infection diagnosis (what I was initially being treated for) than stroke which then meant I was grappling with the fear about my impending death even more so given ten days had been wasted by medical staff not giving appropriate medication in such a dire time. At that point, my particular ignorance (and that of the general Kitty Kat Klubber population) meant I was unaware that strokes have a higher fatality rate (than the infection of the brain initially being treated for) and are the number one cause of disability among adults (according to CDC). Once taken to hospital by chauffeur (aka: ambulance), the lumbar puncture (aka spinal tap - 'tap' is putting it nicely!) was swiftly done to try rule out an infection of the brain (virus) where a lovely nurse held my hand whilst a relative stranger (probably a doctor! Deductive reasoning :)) stuck a HUGE needle in my back to steal spinal fluid to (apparently) test. I was a nice concoction of confusion, disbelief and utter trauma mixed with extreme lack of spatial navigation & short term memory loss (merely a few seconds' worth of retention in those first months! 50 First Dates' Ten Second Tom eat your heart out!) which would have been quite the scene for the supportive sorts who came in every single night to calm my nerves and assist in daily simple (<<to one who hasn't had two strokes) goals (i.e.: shower, ensure to have steroids and suppers, write text messages/emails to certain people who needed my correspondence, both personally and professionally, wear freshly washed clothes especially underwear, organise my finances. The simple (to the vast majority of everyone else my age) list goes on and is incredibly confronting to find so challenging when you're in your 20s and completely able just the previous day/week/month). Interestingly, my mind was always more anxious in the p.m. like I had built up the anxiety during the day realising all over again my extreme (& sudden) limitations and loss which meant I had considerable trouble falling asleep (despite my broken brain being absolutely exhausted after just a few hours of consciousness at a time) and didn't want to be left alone with its nasty thoughts so comforting spoons with friends was always a craved and appreciated deflection (and they kindly obliged, the angels). It was like dealing with the death of someone close to you (<<my 'inner baboon' that died in neuron count?!) where you don't want to lie in bed thinking, so you beg for deflection through company and if friends had to leave whilst I was still alert (after nurses had allocated the nightly sleeping tablets), I'd hang out with the medical staff/my employees or with my fellow patients who had promptly become my good mates telling a frightened little Kitty interesting tales about their life and sharing their technology with me until I couldn't keep my eyes open any longer. That is my life in my mid-20s.
It was soon obvious just how severe the situation was rapidly becoming when the lumbar puncture was performed (sometimes referred to as a spinal tap - 'tap' makes it sound like they simply touch your numbed spine, but instead, they dig into it with a mighty fierce needle you'd expect to see in a cartoon *= keep your eyes shut!*, between two vertebrae in the space surrounding the spinal cord searching for sacred cerebrospinal fluid *CSF*, leaving an inevitable throbbing headache in its wake, see illustraction of such below) and friends & family were coming in more frequently - at least in my damaged mind! You are actually awake during a lumbar puncture which feels odd and you certainly will get a fierce headache in its aftermath, but a sore head is better than a tender groin, camera down throat and hole in the head that I also endured later on during hospital vacay. It might interest you to discover that the lumbar puncture was also preferred over the calcium tablets that tasted like sweet chalk (bad - even for a teacher! Do you get it?! We do love our chalk!) which had to be excruciatingly chewed (apologies to friends and family who had to watch/hear/endure such during the steroid suppers! Here's hoping you got some joy from my discomfort) every single day.
About the time I was petrified about impending death - every couple of seconds my thought process would reset and I'd have to evaluate the dire situation continually given anterograde amnesia!
Not too bad a test when you take into account your spinal area is first made numb, but you are thinking you're about to die if you haven't already from the stroke/s and the fierce headache in its wake caused intense anguish considering a previous headache recently equalled a stroke (whilst basic headaches still are frightening as it could be a possible third stroke/death, I have now become generally proactive in getting rid of a headache with simple paracetamol *not ibuprofen which is what I was regularly having before 2012's strokes and has been known to cause strokes - increases risk by THREE times! I now know better*, plenty of water and rest).
Not too bad a test when you take into account your spinal area is first made numb, but you are thinking you're about to die if you haven't already from the stroke/s and the fierce headache in its wake caused intense anguish considering a previous headache recently equalled a stroke (whilst basic headaches still are frightening as it could be a possible third stroke/death, I have now become generally proactive in getting rid of a headache with simple paracetamol *not ibuprofen which is what I was regularly having before 2012's strokes and has been known to cause strokes - increases risk by THREE times! I now know better*, plenty of water and rest).
Patient docs/nurses needed for patients like me.
November 2012
Because St George's Hospital's emergency team were initially concerned about a virus (upon arrival at the Emergency Ward that bizarre morning in October 2012, during a week's break from being a teacher at a London primary school, it was presumed I had Encephalitis which symptoms include fever, headache and altered/confused mental status (<<the latter was what I was experiencing, in particular). Some people would love forgetting the small stuff but it initially made this particular Kitty Kat overly anxious and paranoid as I was aware of what I was capable of beforehand - thank you to all who grasped and nurtured :). The cruel reality at just 26 years old truly seemed less like a mover and shaker living their life to the fullest and instead more like the twisted plot from a morbid novel about mental health ala Ken Kesey's classic, One Flew Over The Cuckoo's Nest), critical time was lost in treating the second stroke swiftly and appropriately. Given the initial virus assumption, a lumbar puncture (sometimes referred to as a spinal tap - 'tap' is putting it kindly) was then eventually performed. A lumbar puncture is a medical procedure that involves obtaining a sample of cerebrospinal fluid (CSF - fluid surrounding the brain and spinal cord) by doctors shoving a fierce needle into your numbed spine (don't look at this particular one before it is inserted deep into your back! It's just like a needle you'd see on a cartoon, several inches in length = eyes shut!) between two vertebrae in the space around the spinal cord which is filled with the CSF they so desperately want to test! You're actually awake for the lumbar puncture and you most likely get yet another a headache in the aftermath, but a headache is better than the sore groin, camera down throat and hole in head I particularly endured later on during hospital vacay. A lumbar puncture was also preferred over the calcium tablets that tasted like sweet chalk (bad - even for a teacher! Do you get it?! We do love our chalk! Even in the 21st Century!) which had to be chewed/painfully consumed (thank you to family/friends/St George's staff who had to watch/hear/endure the sheer loathing of calcium/chalk tablets during the initial steroid suppers!) every. single. day.
Initially, relief swept over this Kitty Kat when I had the second stroke officially (and finally - after over a week in cruel Limbo!) diagnosed in November 2012 - I've got this. Old dog/Kitty at strokes now!
After the painful lumbar puncture (aka biiiig needle shoved into the back to retract spinal fluid - ewww! Leaving a huge headache in its wake), the brain biopsy (aka shaving part of head, drilling hole in skull, stealing a piece of brain to examine and never return, stitching back up the scalp, leaving entry site bare with no hair extension despite your frequent and persistent requests/assumptions of such. Other stroke sufferers may require a craniotomy where surgeons open the skull in order to access the brain for surgical repair *a young Australian stroke survivor/mate had this emergency procedure a few years back, just before my two strokes and is now a fully-recovered superstar as she received swift appropriate treatment!*), endoscopy (some patients need to be sedated for the camera to be effectively fed down throat! - we learnt this the hard way) and ECG
(electrocardiogram used to detect abnormal heart rhythms *sick or damaged heart muscle known as arrhythmia/dysrhythmia* can cause strokes - fortunately, my young ticker is fine. Thank you to NHS for allowing outpatient monitoring of heart when I was back at school post Stroke 1 - superstars of the 21st Century! Be aware of your heart - for your mind's sake), an angiogram (yet another camera, this time inserted into your groin, see diagram, below, + a special dye injected into circulatory system to check if any blood vessels are inflamed which makes you feel like you are going to the bathroom in front of everyone) was performed with hilarious results.
“He Who Marches Out Of Step Hears Another Drum”
This stroke survivor is incredibly fortunate to have the constant stream of funnies from wise mates during the early days whilst in hospital in late 2012! Even when petrified about impending death.
This refreshing mindset comes highly recommended when dealing with serious health situations.
Your brain is being a 'pain in the groin' today
= big needle + camera + dye injected into your sensitive groin
Although I had trouble finding the way back to my room (in the Neuro Ward a few rooms away that I had just walked out of minutes earlier to go for a shower) merely a skip to the left of the bathroom (I wouldn't be sure whether to turn left or right once done showering - both ways looked eerily unfamiliar to myself due to my lack of both short term memory retention and spatial navigation - I'm the reason there are cute signs throughout hospitals that state 'be careful, we have patients wandering!'), patients and nurses regularly steering me in the right direction and even accidentally getting into another patient's bed on one (hilarious) occasion, I always looked at such mind mess-ups as amusing and made sure to treat my buddies to a little update on the brain-damaged daily escapades (just trying to make them smile - what's new?!). Klubbers would then quote my jokes (i.e.: sore groin 'medicine') to which I'd had forgotten that I had even said such, brag about how witty I must be (they'd agree, naturally) and we'd generally try to see the humour (that certainly was prevalent - at least in my eyes!) in the vast range of struggles and challenges that I/we experienced whilst adjusting to being one with brain damage and in a somewhat foreign hospital 16 000+ km away without any immediate family, fearing death at the tender age of 26 years old. You must!
"Experience is a brutal teacher, but you learn. My god, do you learn"
- British writer, CS Lewis
Do use this stroke risk scorecard to quickly assess your individual stroke risk, apply stroke smart lifestyle choices if you like (after consulting with your GP :)) and become familiar with the FAST Test in case of a stroke emergency - for the sake of yourself as well as others
(along with stroke in general, its prevention and life in its wake).
(along with stroke in general, its prevention and life in its wake).
You'll surely become a superstar if you do!
Just like Peggy Shaw's mind stance (a young woman who had her strokes in January 2011), rather than continue to mourn what 'disappeared into the dark holes left behind' by stroke and compare my weaknesses to others' strengths with their pristine and intact minds, we (stroke survivors and their glorious supporters) ought to celebrate the fact that our brains are able to fill in the blank spaces with new images and insights - an intriguing process Shaw refers to as Green Screening (love it). Shaw encourages us to challenge our new reality and our minds' inabilities ('dark spots') with swift rehabilitation to help generate brain rewiring and rerouting around damaged neurons which, in turn, promotes Neuroplasticity and general progress (which not only demonstrate our minds' astonishing capabilities, but also shows that effort, attitude, patience and tenacity does pay off) in one's self and abilities (keep in mind - this is not always a simple mindset to adopt when one has suffered significant brain damage and its range of drastic, inevitable losses. Hang in there would be a few of my particular words of wisdom for stroke rehabilitation). Furthermore, in early 2013, innovative stroke survivor, Shaw, created (and presented) a workshop in Glasgow also titled 'Green Screening' which showcased the unique tale of her particular stroke & its aftermath that included lack of clear direction, not even knowing where one is to follow (I hear you stroke sister! Where is this linear path *some of you* docs and neuro literary pieces promised?! Why do I continue to lose elements of my former healthy & progressive life even when I'm improving everyday?! How do I meet the expectations of the general society whilst also helping them understand the sheer struggles faced by stroke survivors with severe damage?!) through the power of her unique imagination in the face of extreme and debilitating circumstances. One thought-provoking and intriguing woman.
'Memory like a goldfish' is exactly how many would also describe my severe anterograde amnesia (short term memory loss) caused by losing the left hemisphere's occipital lobe and the right hemisphere's hippocampus, both during breaks from school in 2012.
I wonder if Peggy Shaw had these goldfish-inflated pieces in her 'Ruff' workshop for people to grasp memory loss caused by a stroke?!
I wonder if Peggy Shaw had these goldfish-inflated pieces in her 'Ruff' workshop for people to grasp memory loss caused by a stroke?!
I do often feel like a lost soul *Dory* swimming in a fish bowl, now year after year (Pink Floyd style, again!). Soon this goldfish will become a free butterfly (it's science!). Yes!
Stroke survivor, Peggy Shaw, spreading the stroke smart word
Rehabilitation from stroke is dependent on repetitive and demanding practise (by the owner of the damaged nervous system - the stroke survivor - don't I know it?!) in the immediate weeks, months and years post acquiring brain damage. The pros say if it is done correctly, repetitive and demanding therapy drives (brain rewiring and rerouting around damaged neurons) robustly enough to be evident in increased quality of life. YEW! Whilst no two strokes are the same, the fact that our minds can improve with rehabilitation, rest and time has served as my daily inspiration. All I truly want is the previous simple life where I was healthy, independent and purposeful to return (such basic desires the majority of those my age have without any qualms or a thought) so I can achieve my life's ultimate ambitions (I'm coming for you!). Strokes do not have to mean your life is over; if you persevere, they can be the semi-colon in your life story, not the full stop (or exclamation mark - Seinfeld style!) that could have been so easily chosen instead. Thankfully, my strokes and their devastating aftermath (direct and indirect effects) have ultimately served as a reaffirming life experience where I (and splendid beings who are on this journey with me! Support = boom!) now know the worth of water because the well of my being was once dry.
Nothing can truly compare to our human brain - it is exceptional and ever-so intriguing for it embodies who we are as an individual person and there were times at the start of this ever-extensive ordeal when I felt more like an animal in captivity than a human being living their (otherwise) youthful 20-something life - not only because of what I was suddenly incapable of doing, but also for how some people treated myself. Realistically, I could sit here and hate this recently-damaged brain for what 'it' has directly and devastatingly stolen from my (and supportive dear ones') quality of life - we all could hate our minds for their particular disappointments! But then I realise I am grateful that I have the splendid ability to feel anger towards it and also feel such elated joy when a familiar friend visits deflecting with their typical, warm attitude and renowned wit (that I still get - hurrah!). It does initially surprise some, but this damaged mind is still intelligent, creative, friendly, witty and emotional (all your words, not mine!) - I fortunately know when it is appropriate to laugh as well as cry (an effect of strokes can see confusion in expressing such otherwise standard feelings. I am incredibly grateful to still have appropriate expression, it isn't always the case after brain damage), I can participate in intelligent conversations (even/especially childish ones!) and go to school for the entire day (initially, just 2 hours a day over two days a week was feasible at a supportive primary school near my family home - that commenced 6 months post Stroke 2 through my insistence - a surreal sensation where the place that once so blissfully gave you energy now causes you to feel severe fatigue, confusion and anxiety), hiding what truly happened to my brain (until, say, someone asks where a location within the school is - I have physical maps and notes in a book for such as a guide/prompt - definitely improving with spatial awareness but it is a constant struggle. Be grateful for this human mind ability today :). Thank you to those pumps who have collected a disorientated Kitty on the streets! Old mate, iPhone, is surely smart in assisting in such!) as well as use correct protocols whilst out in public and appropriate hygienic practices too (hurrah!). So yes, despite what I've lost (let's hope temporarily!), I'm still fortunate in what my strong mind has let myself retain as well as regain the past 2.5 years. How much do you just love your bloody (no pun intended) beautiful brain right now?! It's pretty special, you know?!
Please do watch this stroke survivor space, stroke-survivor supporters!
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