September is Brain Aneurism Awareness Month

#speakingforall #brainaneurysmmonth
~ subarachnoid haemorrhage + coma + aphasia
~ the fun after effects
~ learning every day
#complexdisability
A Brain Injury is a rather complex disability;
For many people after a brain injury, there appear to be no lasting effects from their injury.
The effects of #cognitive, #executive + #psychological deficits are, unlike those of a physical disability, often NOT VISIBLE
This ‘invisible’ disability confounds many people because often they lack the relevant knowledge + experience
"When someone begins to heal from living in survival mode,
they have a desperate need for honesty & authenticity.
They’ve had to fight for their ability to think clearly & know who they are.
It’s been quite costly.
They’re not willing to engage with those who won’t respect that."
~ nate postlethwait


#keeplearningeveryday
#anuerism #score1coma #subarachnoidhaemorrhage
#invisibleillness #consciousness #fuckbrainaneurysm #brainaneurysmsurvivor
#brainaneurysmawareness #womenrule #braininjurysurvivor #movingtribe #iamme
#mentalhealthstigma #readingcomprehension #writinghelp #riskfactors #aphasia #titanium #craniotomy
#effects #communicationiskey #womeninart #1in50 #BrainAneurysmAwarenessMonth

#stopthepop 

Headway Devon
Headway North Staffordshire
The Moving Tribe_art

my Scary Mind…being the ‘exception to the rule’

µ - small

'Nerve cells Do Not Renew themselves'

They do not divide at all. There are very few exceptions to this rule – only two special places in the brain can give birth to new neurons. For the most part though, the brain cannot replenish dead neurons.”

So, as usual, I need some help please. Learning every day. Moving forward.

A Rather Boring Human who is constantly asking. Again + again. Until I comprehend. Because my reading is still at 6.

From a meeting approximatly 2 years back, My Astounding Surgeon, Mr W, appeared to feel that something in my brain that doesn’t always work, is now working in mine. Hence interesting speaking / comprehension [in my own fashion] walking / reading [again, at a different way but also STILL recovering] and creative art.

Art + Reading. My nemesis; the long-standing rival; an arch-enemy: I.e.: “a downfall caused by an inescapable agent: one risks nemesis by uttering such words” - you are too slow Sandhy…you are no longer artistic...you curse with rage. Tut tut.

I understand [again, I think so] that ‘the brain cannot replenish dead neurons’ - but what I understood was that some piece of my brain is one of those ‘exceptions to the rule’. Hence after even 9 years I am still recovering.

I cannot comprehend this:

Is it a NEW part of my brain that has started to work, unaided simply because it is determined? And - where IS it?

Is the correct word ‘neurons’? So what ARE those? Are they sort of working like electricity? Putting things in new places; almost an impossibly thing to actually ‘see’?

Why don't scientists and daktari's want to know HOW to make that start on everyone?


Learning...

One other thing moving inside my brain from trying to read - neurogenesis.

“In the human, adult neurogenesis has been shown to occur at low levels compared with development, and in only three regions of the brain: the adult subventricular zone [SVZ] of the lateral ventricles, the amygdala and the dentate gyrus of the hippocampus.”

The hippocampus was ‘named’ in Latin as the Seahorse. And the information about the hippocampus is a little disturbing.

But my brain is grasping at the Sub-ventricular zone. “The C cells then produce neuroblasts, or A cells, that will become neurons.”

So - do some people's brains begin to produce neuroblasts after relearning after battling a subarachnoid haemorrhage?

Therefore, which part of my brain is redeveloping? When it seems that it is unusual to be able to keep on relearning. 1 in 59. Death or destruction. Or life with instruction.

Asking and asking. Watching “A.I” - Artificial Intelligence - follow the leader? Or keep trying to use you OWN brain?

One of the most astounding thing is that asking anyone about this is hard. Easier to speak about having aphasia / having an ‘invisible disordered after-effect’ upon my brain.

Therefore this is going mainly to my Bodhi - the term Buddha literally means enlightenment one, a knower - because many cannot take the time to understand and then explain. Or find out, simply to help another. Another Human who has helped me so much - but now I am moving - and spreading the Moving Tribe North and south. Speaking for all.

9 years still rewiring and only the last 2 have been remotely more relevant. Onward + Upward!

Memories - honest or not?

One of those astounding memories that reappear on Facebook every year - the beginning of a new life 9 years back. At the time, it was not for me really - but for the FH. For my family. For my friends. My backup. Then.

At the moment, during #AphasiaAwarenessMonth, people are beginning to comprehend that a #braininjury is not an ordinary #stroke 🧠🗣️

At last 😤😂

I am getting better when I am not told that I am 'too slow' - 'two many curse words'...and definitely far too much honesty. Stand at the back #sandhy 😭😶

And no. The *after effects* of surviving a subarachnoid haemorrhage, which only INCLUDES #aphasia - does not go away. 

Onward and upward - we do try not to be a bore; we have to relearn our lives.

For me? Yet again. I always thought that getting better after ovarian was so hard. And it was - but I recovered with 2 years. I was on my feet by 5 years. Then? A new and interesting brain injury - and I am STILL trying to get back there. Hence rage. And having horrid speaking - and no, it's not who I was before.

So, working with the #tribe - and working together. Helping one another. And trying to stop talking bullshit - trying to be honest. #reading #writing #comprehension

Things we battle with every single day. Forever. 

It’s not #amazing 🙄 - BUT we are battlers; incredible Humans…🐱‍👤🧠

Stand back and bow 🙏🏼✊🏻 - but only those who try to understand the after effects of a brain injury.
And hey!  I am no longer 'too slow' 

When the FH was alone... 😶🤐

Happy anniversary to the other side of me…

A good day on Friday. Another good day today.

 

We sat in the hospital, just waiting - most people find it very strange that that is the only time I become calm - just waiting to see my Human - my ‘sort of’ new plastic surgeon. Bara El-Khayat - his name reminds me of my friend, Sulayman. Another part in my mind…

“Hence it follows that to make a gift of something to someone is to make a present of some part of oneself.”

~ Marcel Mauss

 

It happens when visiting anyone from the cancer department. Renninson - my Mighty Hero. And Gail + Jacky - the beautiful clinical nurses who tried to help me speak after my brain injury. I was still far away inside my head. Still trying to understand anything. Making a cup of coffee was like trying to fly to the moon.

But even then, my brain was clawing my past. With the Beautiful People that kept me alive. 

 

Whitfield down in scary Plymouth…Dr Chan - when I was dealing with spinal surgery. Wallace, who reworked my broken face 7 years back.

 

People who wish you to get better have become so trusting in my mind - over the years. 

 

“The people we surround ourselves with either raise or lower

our standards.” A sentence that has become resonance in me - for many years; struggling to read it. Trying to comprehend something that within, I understand. But without, I become disturbed. 

 

Not all people are honest. A thing that is a new thing for me. 

Surprisingly, many people lie. 

I detest lying. #rage

It has taken me a very long time to understand that. 

 

‘scientists dream of doing great things. Engineers do them’ - my dad was one of those, so the images + ideas from Dr Ciléin Kearns fill my mind. Sitting in the hospital looking at information created by an artist. Which somehow sends something into those new pieces in my brain that are not supposed to be there…

 

Have never seen another actual engineer giving input on who created the titanium plate + how the surgeons hope the brain can remain above infection by installing it in the correct place. 

Hence parts in the skull being replaced + reinstalled can become #broken - engineering disasters often arise from shortcuts in the design process. In surgery we don’t have engineers. 

And surgeons do not make shortcuts. 

We have surgeons who try their utter best. 

And keep you alive in whatever way that they can.

 

Surgery cannot create aphasia. The brain 🧠 has its own invisible fashion of being slightly sneaky. Losing things. Breaking things. Like treading on egg shells.

 

But Friday was good. Past the fright of having #Botox. Remaining calm.

Knowing that I am within the long list of surgery for Humans who need help.

I am at last understanding that I expected too much from others. Remembering that there are so few - very few - people that follow that code. My own philosophy. From before my brain injury. But still - moving forward. 

The FH deals with that everyday. 

That hard side that is not remotely ‘inspiring’. That side that no one sees. Aphasia is not notable. It is invisible. It helps others to feel happy that I ‘am amazing’.

 

Survival within. 1 in 59.

 

So. The best thing today, on a Tuesday; my backup + I are on our 23rd anniversary 

Got married and stayed married. 

Our gifts to one another: hubris. The extreme self-belief in our ability’s to stand, back to back against the world. Fighting for our lives - forever.

 

A lot of things to think about when your brain keeps on battling. Now, moving. Again. Backup. 

 

For my FH - my heart:

“Promise me you'll always remember: 

You're braver than you believe, and stronger than you seem, and 

smarter than you think.”

~ A.A. Milne

 

It has never occurred to me, no matter how far I had gone within my broken brain, that the FH would become invisible like aphasia.

We have our own personal code - love is not a feeling of happiness, it is a willingness to sacrifice. Our sacrifice keeps us alive. 

 

“Just follow me and run like your life depends on it. Because it does.”

~ The Maze Runner

 

Happy anniversary to the other side of me…

x

 

#myhero #identity #art #arttherapy 

#movingtribe #recovery #hubris 

#underthesurface #understanding #movingon 

#theself #ego #id #braininjuryart

#braininjury #aphasia #everyage #infinity #communicationiskey

#tbi #braininjuryrecovery #abi #anniversary 

what you do defines you...

#blogpost01 #day 21

The word “week” is a very interesting word…

This #week - • drawing birthday cards

• creating ceramic style clay articles • chatting madly to a pc fellow called #dave to buy a new #pc #aphasiasucks #comprehension

• massive rage with the local doctors letter [ok if you can read comprehensively] telling me I will be checked for a #mini stroke? #fucksakes

• BUT a wonderful girl in the reception helped me feel a million times better. Booked an appointment with a #daktari that actually reads what actually happens to others. Hoorah

Love that receptionist at Claremont Medical Practice

• another brilliant chat - this time with first direct to be able to ACTUALLY use it again… amazing • thank the lord for the FH

• And: creating a 2nd head for my #smallhuman family - another art #prototype

• waiting for the snow, hail, hideous cold to bugger off in order to collect my first prototype + Tony’s #leopard clay animal

• waiting to see the surgeon to re-mend my broken face

So the word: “week”?

It feels like a word that said “weak” as I constantly struggle to remain focused before losing the plot with the anger of my brain. Not understanding whilst many find that I MUST be understanding.

And NO darlings, having had so many checks including the after effects of menopause, happily, it is actually created by my chuckalious broken brain…

“It is not who you are underneath, but what you do that defines you."

~ Batman

I will survive...

Running through my memories - I love that. Note. Sarcasm.  

Ovarian cancer
Bells palsy
Coccygectomy
Brain injury

Again, a particularly stressful few years before my brain injury [see Ovarian cancer?? pass the wine...now!] - thinking about not to take life for granted - so I am using the words of others - but getting the idea across...

Here is an excerpt from Steve Jobs’s 2005 commencement speech that mentions his philosophy of living each day as if it were his last.
A hard thing to get ones head around.

Try. I survived. 

Twice. 

Because every moment in life is valuable - so don't let it be taken away - hold on to life - with rage.
Cognitive reserve...

-------------------------------------------------------------------

"Life is full of surprises. You’ll never know for certain what your future will look like. You’ll never know where you end up or what you’ll accomplish in the next few years. You’ll never know who you will befriend, what you will experience, how you will feel…

If you only had 24 hours to live, you wouldn’t ever think about laying on your bed all day eating Doritos, watching mindless content on YouTube or scrolling through Instagram all day.

You’d realize how much time you’d spent on things you never cared about which made you feel good in the present, but would never amount to anything in the future.

We’d love a little more time to finally be able to say the honest truth; things you would never have thought of sharing about yourself without the thought of your impending death.

You won’t take your time for granted and would only pay attention to the things that are most important to you. You have no time to waste, because your life can end any minute."

~ Steve Jobs
1955 - 2011


Ovarian Cancer Action

I re-started. From zero.

#blogpost01 #day18/19

Second day of the year. Happy New Year all. From me and the Moving Tribe art.

Now it is the Thursday and I still haven't put this up. Still worrying. So I am simply putting it up on my blog.

Read. Don't read. Your little invite. From me and my #broken brain.

Right - back to my blog again. The more days I don’t try to do the blog the more days I will stop doing it. At all. Again. Fight + flight.

Just after Christmas my brain was in the ‘oh dear Sandhy; you are SO slow, SO stupid, stand behind the rest as you are so VERY unpleasant when you manage to speak dear… you MUST be fine! 8 years…gosh’ etc. etc. etc.

Rage. Distress. Sadness. Learning still.

The brain is here. The mind is down in the Arctic Wastelands. Cursing. It’s so astounding that even now, after 8 years, my brain still moves forward. Leaving the mind behind…invisible.

The new [almost] piece of information that has appeared into my head - remember Victor Frankenstein's creation? If I did not have all the back notes of my Other Life, I would literally think that the image with the story is simply…me.

I am: “assembled from old body parts and strange chemicals, animated by a mysterious spark” - “I then [he enters] entered life as a total zero [eight feet tall] and enormously strong but with the mind of a new-born.” The monster is Victor Frankenstein's creation. I re-started. From zero.

Christmas was really lovely. In some ways. My vision of it this year broke down. But - we managed. Bit by bit; little by little.

We had Mumsy down. I struggle to constantly chat + understand conversations. I worry about things that many do not worry about at all. That is more than my remit. So I am so grateful for the FH. Helping me to look 'normal'

We got together with friends and gave gifts. We had the best Christmas lunch when we gathered together with the Moving Tribe down at the Headway room.

The weather is horrendous. That word - depression. But hey.

In the meantime I have started using Laura Croft again! My favourite favourite FAVOURITE game on the pc. And I was doing SO well! Logical. But [as per] it has simply started to keep not working. Just stopping. Full stop. Grr.

to bumble on...

Chaotic moments:

First Direct - 1993 to now

Initial understanding by the bank regarding brain injury after effect’s. Good method of trying to find a way. Calmed my extreme rage / heart banging / brain injury / banging noise on the phone / waiting

But. The FH managed. But this time it was so bad.

The rage. When I cannot follow. Beyond help for a long time.

But we did it. Once again. A new Secure Key. Done. Phew.

Extreme head hurting with the New Spectacles

Extremely thick prescription glasses. Why? Because they didn’t ask, and didn’t check how a brain injury creates extreme pain in my broken head - they made my new glasses so heavy.

Back the Specsavers again this week.

I get so tired of everything going wrong. Over and over and over.

Collecting water 24/7 from under the kitchen sink!

Over a month waiting for a plumber to take the time to stop me & the FH from crawling underneath our sink. Twice a day. I found a bigger 'under-the-sink' bucket. Hoorah. F#@k sakes.

Arthritis is just SUCH fun 🤩

Plumbers are almost like god. Except they get paid.

Adding 5 pounds in 2 weeks #slimmingworldrace

It has taken me 2 years to get rid of 2 stone. From 10 stone 7 ounces to get back to 8 stone 7 pounds.

In 3 weeks of eating all the scrumptious food that I love [NO - never, EVER McD 🙀] - roast potatoes + crisps + chocolate 🍫😹 and basically sitting on my butt. Idle mind. Bad.

So a good day to re-begin that astounding diet that to me is the best way to eat. For possibly 25 years. I think I should ask for a badge. Hooray for Slimming World! Bring back my 1999 clobber which lives in my wardrobe - riot in the kitchen 🍎

Wondering wildly about Saturday - there is a little info on LinkedIn to say ‘have a coffee and do some colouring’. At the XCentre. With Headway Devon.

So if you can’t read if you can’t understand are you supposed to just KNOW know that you are invited? That the coffee morning is there for you? The Incredible Human who battles with brain injury EVERY SINGLE DAY

I think I best stop.