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Recalled to life by Oliver Sacks, a review

I loved this book, especially the chapter 'Recalled to Life' because of its insights into how stroke victims could lose certain faculties but learn to compensate for them by developing tactics in other areas, to cope. It also disclosed how strokes could lead to an inability to either translate sensory data into verbal terms or interpret input, to make sense of the world around them. Some people suffered word blindness - others lost facial recognition as an ability. Some were able to talk in an intelligible manner but when asked analyse what they'd said or done, they couldn't make sense of their thoughts or actions. It affected verbal and visual memory as well as passive (receptive) or active (transmissive) states of mind - in other words input or output. It was like they never reached a perception point of realising what they were seeing or a recognition point because their memories of what they were seeing weren't there anymore or available to them.

Some of these difficulties involved abstract knowledge as opposed to objective reality (written or spoken language as 'representational' data): Could lack of a sense of direction be down to the same magnetic sense in migrating birds, being lost or damaged?

In The Beth Abraham Hospital for Incurables, residents / patients found ways round their disabilities through mimicry - that is using other sensory input to kick start memory in lost areas or to communicate in new ways (visual or verbal mostly as for instance, tracing the shape of letters in mid-air or forming words with their tongues; 'Only connect...' CS Forester): Children's books teach the alphabet by simulcra that resemble the abstract forms of letters e.g's a post for 1, a sail for 4, a catapult for Y etc.

Phil Beadle, the teaching trouble-shooter, says that there are three ways of sensory learning input - visual, sonic and tactile. This reflects the areas of difficulties for stroke victims as they try to relearn communication skills.

As a side issue, people who are deaf, appear to be dumb to the hearing because they associate mental sharpness with clipped speech. The deaf can only approximate word pronunciation which makes them 'sound' like they have learning difficulties. However given sign language, the deaf can appear as swift and erudite as any voiced person can. This is because it builds upon a sense they are strong in (vision) as opposed to one they are not (sound). This is the opposite of the blind of course.

You cannot expect a man in a wheelchair to run upstairs or play football because this is his area of weakness, not strength and trying to force him to fit in under such circumstances, shows weakness on the part of the enforcer, in the brain department. This is why I think positive discrimination is foolish and humiliating to the person with the disability – depending upon their attitude to the situation of course. Ben Parkinson for instance, the Afghanistan combat veteran, has struggled and is struggling now against brain damage and the loss of both legs and it is people like him that push medical science and technology along but on a voluntary level.

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A pain in the neck (part 1)

I am thankfully passed all this but I had twenty or more years of migraine (now 72 but was told that by my mid fifties I would lose them. I didn't. Fine if you are a menstruating female but not true of a grumpy old pensioner, trying to write. Mine disappeared in the mid sixties. In light of this here is a story I wrote from that time:-

I've got to get this paperwork finished by tomorrow but all I can hear is this thump, thump, thumping bass above me. I want to get into my head. I 'need' to get into my body, to get this stuff done but no matter where I go in the flat, this incessant noise grabs my attention. I could kill the bloody bastard!

The pills don't work anymore. I've got a splitting headache and I know tomorrow it will have turned into a full blown migraine: Three days in bed, vomiting, sweating like a pig, stuck in delirium...

It starts with tension in the neck. I can sometimes feel a sharp pain where it joins the skull. One day I know this blockage will turn into a stroke that will kill me but there's nothing I can do about it. I tried anger management but left after punching the guy who ran it. He knew how to push my buttons, so I pushed him back. The guy above me is different. I fantasize about taking a sledge hammer to his music centre (Kicking in his door and kicking that thump machine into a million pieces). Any resistance from him and I'd do the same to him. The reality of course is different...We pass in silence or polite greetings. He doesn't care one iota about my feelings, the arrogant sod. It's like being in an abusive relationship. I hate him but my feelings don't touch him. This is a living hell.

I won't let him drive me out of my own flat. Sound smashes your ability to concentrate. It splatters all over the place, so that you become a flat, empty, mindless husk like him. Responsibility is about seeing but he wants to remain blind. Drinking, partying to all hours. Where does he get the money from? How's he even fit for work? Still I never am - mainly because he makes me sick, literally! Why do we have to carry these wasters? Why!? Why!!? Why!!!?

A silent, contemplative society - that would be my dream (A monk to his viking raider). Peace! Peace! Peace! That's all I want! Christ, is that too much to ask?

I'm a workaholic - I admit it but where would this society be without people like us? They'd just let things fall apart or worse still, rip them actively to shreds. They'd rob people, beat them up, threaten and cheat them, just to get their needs met or expect to be spoon fed like the babies they are. They resent the world and everything in it, including themselves. Work is a four letter word in their vocabulary. Honesty is another swear word to them. They'd rape and kill, to get what they wanted but ask politely? No way! They kill cats, grunt obscenely and drive their cars and lives into the ground because they don't really want to be here. Drugs, alcohol, lack of sleep, reckless abandon of all sorts - anything but settle down and develop inner resources, inner knowledge for dealing with the world they find themselves in. They're damaged goods that they helped damage. Self-sabotage motivates them, not thought. They call people like me boring: Shopkeepers, accountants, academics just as they called the first farmers the same because they were the mighty hunters - posturing and pouting, in their antique roles as time passed them by. They see themselves as predators still and we as their prey. And why not? We've got the real power in society, not them. They are the victims of this world - dinosaurs left behind when the rest of humanity caught on, to what we were about. We want to see a different world - they are only happy if they can take their old one with them. They want to convert the new world to their old ways, dragging us down into their hell. We don't conquer the outer world and turn it into replicas of our own lives. we conquer ourselves and our primitive fears, to better appreciate anything new and different we encounter. Still enough about them and our efforts to convert them to a better life, raising their consciousness to our level.

I know an attack is coming on because get this vile taste in my mouth that reflects the mental bitterness I feel inside. My skin feels like it's flea infested. I get severe indigestion because I feel life is hard to swallow. Perversely I also get the munchies, where nothing I eat satisfies this craving inside (Stuffing down my feelings because being sick means no longer being able to control them). Coffee is one of my triggers. I know this from vomiting up a cup I'd drunk half an hour earlier, in a distilled version (no sugar or milk, just the black steaming caffeine).

I reckon the reason migraine is on the increase in this society, is because of the ever increasing pressure on its members. It's like an orgasm or a massive electrical discharge. Things build up to a climax then explode like a volcano. Epilepsy is that way and I think migraines are no different.

It's like trance dance as seen in voodoo and whirling Dervishes too. Continual motion, leading to inevitable collapse of the organism through adrenal fatigue or society through panic attacks par excellence! I believe were just vacuoles sucking in and blowing out experience or electricity generators, accumulating then discharging energy. I believe too this explains ageing as motion between two points and again dementia as chronic delirium or loss of contact with the world, leading to balance problems, loss of appetite and inability to keep food down (The big trip of unconsciousness as opposed to small deaths on the way). All of this fascinates me and why not? My doctor says I'm talking rubbish in his own particular, polite, professional way. I accept his reaction with a pinch of salt. What does he know? He should be on my side of it.

I awake the following morning. Awake, is that what I really am? I feel like death, staggering about the flat like a zombie. It took ages to drag myself out of bed and look in the mirror. Yes that confirms it - I am dead again. That sallow skin, those lifeless eyes - black around the edges, bloodshot within. Tongue out. Yes it's that white flag of surrender again (another overnight snow storm, covering it). Sometimes it's yellow with vile bile and it tastes bitter and ugly like my mood too.

I just want to curl up and die - oh God, here it comes! The wretch throws himself down before the God of the toilet seat and retches. He prays to the Lord of Vomit. 'Please accept this humble offering - yurp!' Oh God, here we go again. Yurp, yurp, yurp! Nothing there but I don't listen to my stomach. Once more with feeling - yurp!'

I sit there for five minutes, leaning back on my heels. Is it over? Is another eruption on its way? Eventually I stumble back to my feet and walk shakily back to my bed. 'I'm ready for my shot, Mr Romero! No, I don't need anymore make up and I remember my lines perfectly. Groan, grimace, stagger isn't it?' I don't need the thump, thump, thump of his music above me anymore - I've got the recording going on in my head already. Sorry no, make that the sound of blood pounding around somewhere in my crunched cranium.

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Supporting a loved one who is ill

Supporting a loved one who is ill is a new and precious part of your relationship. As you embark on a road trip to wholeness, you will grow with that person.

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If you feel helpless or stuck I invite you to contact me and make an online or in-person appointment today!

#DrBarbaraLouw #inmyrosegarden #Blog #healingjourney #counselling #Cancer #BreastCancer #cancerinspiration #cancerrecovery #reconstruction #Recovery #Trauma #Trauma #recoverymotivation #Support #Amputation #Stroke #Mastectomy #FightCancer #cancersurvivor #cancerwarrior #cancerthriver #CancerFree #MedicalTrauma #Oncology #AquillaWellnessSolutions

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Asperger's and Communication (Part Two)

We are non conformist, not because we deliberately want to rebel against authority but because we don't have the social skills to fit in (we are size ten feet in size five shoes as I once put it). Our rebellions (temper tantrums) are because of sensory overload. Like a bucking bronco we kick off unwanted pressure and distractions from outside. For instance when I was a volunteer at The Dunn Nutrition Centre in Cambridge, I lost my temper because my room was beside the toilet block and I got fed up with banging doors and toilet seats. I locked the entrance into it and threw the keys in the courtyard, leaving shortly after that.

Digestive sensitivity (histamine reaction to wheat and food additives), disclosed themselves through indigestion, hay fever and twenty odd years of migraines. It may also be why I have to continually crack joints in my body (not only knuckles but knees, wrists, neck, lower back, between the shoulder blades, ankles and for some odd reason my left big toe but not my right). I also have restless leg syndrome, which is probably an offshoot of this. I also flick, tap and raise individual fingers, which I assume is my form of ticking but not like a clock.

Why is apparent deafness is one of autism's principle symptoms? Well that is because hyper visual concentration means shutting out all distractions from the other senses and that includes sound, hence the appearance of deafness. Even ordinary people need to do that because sound especially, turns our attention outwards into the world and away from visual attention aimed down and in.

The OCD component is I believe two fold but related. The first is the obvious fear of contagion (disease mostly) and the second is a fear of chaos. This is why we have our own rituals and the urge to create order around us (disease and dis-ease as objective and subjective parts of the condition). Illness creates internal chaos in our bodies and dis-order does the same thing with our minds.

Visual thinkers like me can instantly see answers to why things are the way they are. If you look at my writings (philosophical speculation), you will see that they are formulaic or even balanced equations, unless I didn't write my thoughts down instantly when they came to me, in which case they would have rambled into lengthy diatribes, no better in most cases than anyone else.

I too find talk confusing because of its speed and the efforts of verbalisers to work in depth is minimised. Temple Grandin’s point about the blind using bat echo location, falls into line with my point about sign language and forcing the deaf to talk. They have no sonic feedback ability, so cannot improve their ability to talk. They do see however and can speak with their hands as quickly and fluently as verbal speakers can with their mouths. My next door neighbour has developed motor neurone disease, so can no longer speak clearly but her handwriting is still as legible as it ever was, so this remains her principle means of communication.

Alters, valences and MPD sufferers are all attempts to take on the characteristics of those who are more successful in society than we are (adopt their persons).

At school my maths teacher at secondary level, always picked on me because he knew I couldn't answer any abstract questions he threw me. Then on the last day of the final term in his class, he produced a game for the whole of the class to solve and I was the only one to work it out because it was visual (you have two rows of three coins, arranged so that the top row is offset, sitting on the bottom row: all the coins touch two others and you have to turn the design into a circle by moving one coin at a time, so that they still touch two other coins, until the figure is complete).

When the autistic talk about their condition being a traumatic experience, they are correct. My wife broke her wrist about a month ago and since then has had an NT arm and an autistic arm. The injured hand is ultra sensitive. When she uses it to touch the sleeve of her jacket, it feels like sack cloth she says but the other hand has no such effect (hot and cold are equally contrary).

When I used to have migraines, it was the same for me but there was little discernible difference in body sides just a whole body sensitivity to touch, light, sound, smell and taste (in all cases input was too much). This makes me wonder if it's the same for epileptics and stroke victims? Is autism simply nerve damage that remains undetectable by our present medical technology, which in turn is not sensitive enough to pick up such data?

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I'm new here!

Hi, my name is Sol_.
I have balo's concentric sclerosis, a rare subtype of MS.
I’m still in hospital, everyone thought it was a stroke. I’m unable to speak, I can’t move my right arm and my leg is affected. I’ll be going to rehab soon. This is my first post, I’m just trying to reach out to people who have been affected, because it took me by surprise. Would love to get to know the community.

#MightyTogether #MultipleSclerosis

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The nights are the worst 09-05-24

By societies standards, I should feel great. I should be grateful than my life was saved. I should be thankful that nurses and doctors put hours and hours of labor into my corpse and I am grateful but I do also feel guilty. I don’t want them to feel like their work was all in vain, but at the same time I struggle but I don’t struggle like people would think that I’d struggle I don’t have issues with money. My wife left me two weeks in the hospital stay so I no longer have relationship issues although it was a toxic relationship and kind of glad I don’t have those issues.

Of course, the loneliness of things sets in. The nights bring memories of things I did in my past that were fun times spent with friends now time spent with my ex-wife where we weren’t fighting and things were good.

My uncle left me his house of which I now live in, which would be a blessing if he hadn’t passed away here if I hadn’t found him in this house if the walls didn’t reek of my uncle. Every night here is torture. Knowing what happened what suffering took place here.

Im in pain, not physically but mentally emotionally I don’t know what to do. I want to run but I don’t know where to? crawl out of my skin.

Ive felt many pains over the last few years, but never the pain of what I feel now, I feel I’m one step closer to going catatonic. Life’s finally broken me, people tell me to get out, where do I go? And no offense I don’t want to be around other people like this.

find a hobby they say, what? At the moment in life I enjoy nothing.

You’re just being difficult they say, you don’t value how lucky you are. No I know how lucky I am however my luck came with a curse. Money can’t cure my heart, money can’t bring me happiness. Money can’t find me companionship or connection that lasts longer than a day.

take a trip, where? I don’t want to leave my house

therapy, I’ve tried several, they don’t tell me anything I haven’t already thought about myself in my mind.

And believe me I feel like I’ve tried all of the above, why I may have had fleeting instances of joy and happiness soon I had to come back to reality.

I’ve tried the medication I take 15 different ones for my heart my physical pains I was left with, my kidneys liver just about everything, I have a partially artificial heart and a machine that keeps my heart beating. I’m covered in scars from the vampire scars on my throat where the ventilator was and the medicine tube was, down ny chest and the xxs on my stomach and back I had lines coming out of for months.

Whats wrong with me? Have I just come to the end of my road?

I apologize for these jumbled thoughts they’re from a mind of a sleep deprived individual who’s barely hanging on by a thread.

im not even sure if im looking for some inspiration that might help or save me as I’m not sure there’s much left to say or do that could help that already hasn’t been said I think I’m just leaving these notes so if by some stroke of magic change happens and everything turns around I can look back and remember where I came from. Or if i simply can’t carry the weight anymore at least I’ll have said something and my friend and family will have closure, they’ll at least know how much i suffered inside and that im free and onto greener pastures.

#Suicide #Depression #self #alone #Pain #Life #Journal #PTSD #Broken #empty

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Summer Joys

Oh the joys of summer! Apart from the blocked or runny nose, has anybody else noticed other odd symptoms of hay fever, blighting their lives? For instance itchy inner ears, accompanied by wax build up, itchy nostrils, grit in eyes and running thereof? Then there is the scummy feel of pollen all over your skin, like a crusty suit of armour. Also, for me at least, the sneezing is now accompanied by coughing fits, owing to the drying of the mucous membranes in old age. So does any of this strike a chord with anyone out there and can they add to the list? Forgot to mention the visible presence of pollen scum on rivers and ponds, for those who would say it is imagination on my part: if it can be seen that easily, then it can also be felt that easily, by those sensitive enough to notice it and be irritated by its presence.

Of course what summer in Scotland would be complete without midges. I remember putting my tent up one evening in Torridon, having something to eat and then making the mistake of opening the flap, fully intending to wash the residue off my plate (big mistake). Literally within seconds it was covered in the little blighters as was the tent roof.

This was annoying but tackling clegg flies on Loch Eribol was infinitely worse (as William McGonagle would say ‘The clegg flies on Loch Eribol, were something terrible, I felt I would die, if one bit me in the eye!’). In the eight mile walk, it was like I was in a war movie, with squadron after squadron of dive bombers attacking me (11 hits on the deck of the carrier (me) but I took a few down in the skirmish). They bit me here, they bit me there – the damned elusive clegg flies were everywhere! But it isn’t all in Scotland’s favour.

One hot day in Wales, prickly heat took its toll on me, on The Gower Peninsula. Hot day, cool breeze and that night I had bubble wrap arms, forcing me to lay on my back. Every time I forgot about this and tried to turn over, the pain would gently remind me.

Abroad, a group of us got lost in Athens, in a Volkswagen van (no sign posts, so we went round in round in circles all night, eventually getting out of the city when one of the party, who had had a little sleep, took charge and steered us back on course. Arriving at our destination, we all collapsed on the beach. The following day sun stroke struck three of us, me included. We were like shuffling zombies, the burnt skin and dehydration effects, making all movement slow and painful (ah, the glories of summer as I say!). Crouching over holes in the ground, considered toilets at the time in Greece, is one memory I’d rather forget but can’t.

But wait the sun can’t be blamed for all my misery. I remember getting drenched to the bone, after getting caught out in thunderstorm and squelching home in wet shoes. I also carry the childhood memory of dragging a sled home, my clothes frozen solid, in one of the worst winters in history and no this was in England, where I was brought up (Only years later did I see the Tin Man in The Wizard of Oz and think that it reminded me of someone but I couldn’t think who…).


Mild stroke-like symptoms

I sometimes have strange, sudden extreme weakness, inability to talk, dizziness, feeling faint ... is this part of Lupus too?

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You're gonna wanna be here for this

If y'all have seen any of my posts, you know some of my ups and downs. I know I haven't been as active, but that's because I've had a LOT of mental legwork to do. Ain't nothing wrong with taking care of your needs! So, I did 😊

Made a post on facebook this morning and thought maybe it might #help someone out there. Either way, posting this to look back on for myself isn't a bad thing either. With that being said, here is my post (also take note of the picture of me from 5 years ago to today. Just the difference in the smile is wild to me 💜:

BLANKET #triggerwarning :

I'm going to share a LOT in one post (especially for so very early 😅). It's going to get deep and it's going to get a bit long winded, but please stick with me and feel free to share. I'm making this public in hopes it might help someone, anyone, even if it's just my future self to remember. I'm also a pretty open book so feel free to ask questions of you'd like 💜 fr let's talk about it!

The "me" in the top photo is NOT the me I am today. Even looking at, to me at least, the difference is striking. If only I could have known just how far I'd be, just mentally, that I'd be, just to let me know I'd be more okay than I could have EVER hoped to be just 5 years later. At the time, 5 years would have felt like forever to the me who couldn't see past moment by moment.

To the me then:

Oh, how I wish I could have assured me that I'd one day have an ounce of love for myself. How the situations I was in wouldn't last forever and that sooner than later, I'd actually be happy with the life within me. That one day, the heavy cloud over my head would dissipate. That one day, all the "faking it till I make it" wouldn't have to be faked anymore. All of the med changes, mental hospital stays, moving, losing my tangible things, losing sight of myself, would one day bring me to actual peace, happiness, protection of my peace, understanding of self. I'd tell me then just how proud of me I am for doing anything and everything to be honest with my support system the best i could so that I could make it another minute, hour, day, because all of the just "surviving" the moment to moment would lead me to today. That, no matter how you quantify or measure the distance of a single step forward, that moving forward is still progress. I'd let me know that one day, I'd look at myself more kindness and love than I ever have and that one day I'd learn just ow valuable my peace is and how one day I'd actually take steps to protect it and that boundaries aren't as scary as I thought they once were.

Oh, little me, how I'd love to let you know so much. There's so much I wish I didn't go through, if for no other reason than because now I know that I made a lot of lessons a lot harder than they had to be. That one day I'd be writing a post about me with the kindness, understanding, and compassion that I've spent so long giving to others.

I think I would have laughed. I wouldn't have believed it. Even if I could have stood in front of myself like a mirror reflection come to life, the me who couldn't see a future, who thought I wouldn't be alive to have any of what I have now (mentally, physically or otherwise), wouldn't know what to do with the information I have today.

And that's okay.

Oh little me, I'm so proud that we lived to see another day. This day. Because it's all we ever wanted and hoped we could get to.

Bad days will come. Ups and downs happen, I know. However, may the me I am today never forget the me I was, lest I lose the raw appreciation for just how far I've came.

FOR ANYONE WHO MADE IT THIS FAR IN MY POST: please know, as long as there is breath within you. As long as you're here to see tomorrow, there's always hope for an even better day after. In spite of the hiccups, the unfortunate, the unforseen and unplanned, there is always room for a better tomorrow....but ya gotta be here for it to see it 💜 PLEASE NEVER BE AFRAID TO BE HONEST WITH YOUR SUPPORT SYSTEM!!!!! THIS INCLUDES YOUR DR/THERAPIST/COUNSELOR!!! I used to be terrified to until I realized that you can not be involuntary committed unless you are actively planning to hurt yourself or someone else! Please, don't be so afraid that you don't get the help you know you may need.

-2x in a mental hospital voluntary committed
-years of therapy
-years of med changes till where I think we finally got it the closest to right I've EVER been
-dv/sa survivor
-"sewer slider" attempt/and ideation survivor

There is hope
Ya just have to be here to see all the hard leg work you've done, even if it does take years.

Remember, a painting up close seems chaotic. Every brush stroke looks imperfect and messy, but a step or so back, when you're actually able to look at the bigger picture more and more, I promise it's so beautiful and so very worth it. 💜

You're gonna wanna be here for this 💜


The previous 988 Lifeline phone number (1-800-273-8255) will always remain available to people in emotional distress or crisis.

The 988 Lifeline’s network of over 200 crisis centers has been in operation since 2005 and has been proven to be effective. Trained crisis counselors listen, provide support, and connect callers to resources when appropriate.

Callers who follow the “press 1” prompt are connected to the Veterans Crisis Line. A Spanish Language line is available by pressing 2, and more than 240 languages are supported through a Tele-Interpreters service. Callers now also have the option of following a “press 3” prompt to be connected to a crisiS counselor specifically trained in supporting LGBTQI+ callers.

FOR MORE INFORMATION: The Lifeline and 988

#MentalHealth #BipolarDisorder #BorderlinePersonalityDisorder #PTSD #Anxiety #Depression #SuicidalIdeation #SuicidalThoughts #SuicideAttemptSurvivors #Selfharm #Addiction #Loneliness

The Lifeline and 988

988 has been designated as the new three-digit dialing code that will route callers to the National Suicide Prevention Lifeline. While some areas may be currently able to connect to the Lifeline by…
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