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.

Titanium plates

A question for people who *wish to understand about titanium plates* that we people have it smashed into our skulls whilst not understanding anything about the after effects🤔

Is my titanium mesh:

A: Alpha alloys

B: Beta alloys

or

C: Alpha+beta alloys

Trying to understand [by trying to read ho ho] the information about a piece of metal in my skull 💀 is extreme. Aphasia is still moving forward, but I still cannot understand well, as I cannot comprehend unless I have help. Help can be like sunshine in winter. Very little.

Having a chat with a doctor is not useful. Simply because I am unusual. 1 in 59 who survives with the effects of my brain bleed / subarachnoid haemorrhage / aneurism [and after 8 years, most people think I am now “fine” - I just love that 😳]. The type of stroke that I had after the craniotomy was minuscule compared to the bleed.

So. The pain in my head during extreme cold appears to be quite extreme. Therefore I am trying to work out the best thing to do. Wearing a woolly hat maybe the only answer but to recall putting that one my head each time? 🧠

Send me a postcard if you have any input about extremities after a Craniotomy in the titanium plate. When the weather is freezing 🥶 

See info that I cannot understand 100%

Struggling already

#blogpost01

#day06

Oh yes. Already I am trying to NOT do this blog. If I had a secretary I’d simply waffle down the phone and watch my words appear in the local newspaper 📰 each day. But hey - at least I’m honest when I do my little teeny social media attack. Mass communication. Broadcasting the info that passes through my Incredible Brain. Pros and Cons. 

Getting carried away in five different ideas. Ten times a day…

To try to stop, so I’ve started! Yesterday went into race mode. Today is our Crimbo lunch, all the Moving Tribe art will be there if they are well and it’s wonderful to get together to celebrate. We are alive. 

I love that word suddenly too: race mode… who on earth says that, ever? Anyway. Running which gives me fatigue. 

Fatigue makes my brain angry. It has taken me a VERY long time to understand the difference between fatigue and exhaustion and tired.

My brain forces the mind to over compensate. I wonder if somewhere, someone has that type of brain that actually tells you things. Instead of just wandering of, deciding things with asking first.

Rage. Hmm. 

Trying to look forward; presents were the hardest . I want to be a millionaire. Whose assets are worth everything and nothing. Money can be handy, but actually finding the thing you wish for is harder. But! I battered that mind and finally won. If my friends don’t like their pressies? We’ll flog ‘em for money for art ✏️🖌

Last night I built a large salad, a bowl of baby potato’s with mint - astounding how my brain remembers how to do a “proper” salad. And we are doing our lunch in winter. 😂🥗 

One of my mates is doing ALL the cooking! Roast spuds, turkey - you name it, that’s what coming. We are taking Christmas spirit to all- not what you buy. What you bring in your heart.

Today one of my beautiful friends will have a celebratory drink from us all. He is not in the room, but he is in our hearts. At the moment I am struggling with people who are leaving, piece by piece. Family. Friends. 

So holding on. With rage.

P.s: I found the ‘Justify’ bit for the paragraphs - oh so chuffed….✍🏻📖

 

Tenacity…

#blogpost01
#day04 

#blogger is in tired mode today 🤣

 😳

#keepingtrack 

Third day!

#blogpost01

#day03

It is raining. Non stop. And windy. Totally tedious weather. So, here I am, in the kitchen basically wandering about. And wondering. A lot.

For what I was, what I now am, where I am going. Too many things battering about in my head. Worrying about silly things - spelling / confusion with words / rereading 🙄 etc. 

Blogging. Hilarious, considering how long it has taken me to be able to do this. Again. And [genius!] no one needs to read this. No one. Unless they want to. Last time, with cancer, I was more logical - I.e.: if you don’t wish to know, leave. 

And I knew I was going to get better. And move on. With my #newlifestyle? It is going to be with me always. Forever. #ffs

In the meantime, trying to find a way of putting ALL my #stuff in a more logical format. A sort of formal way of thinking would be really useful. 🧠🦸🏼‍♀️

For anyone who has the after effects of a brain injury, and has aphasia as ONE of the after effects, and you have no one to listen to your questions [when you ask it 55 times and still can’t comprehend it? They sort of run away] - 

Headway - the brain injury association are in the HealthUnlocked forum. 

Impressive. 👍🏻🫵🏻🙏🏼

After 8 years it is still there for me - an email that appeared every couple dof months but I could not read them for a long time. Because I went on there coping with ovarian cancer, I am still part of some of the forums. But not with Headway. 

That was in 2008. I met many other women who were looking for chats and help. And I still talk to those wonderful people whom I met through HealthUnlocked 

We all had blogs, no matter our age, our background or anything other than the fact that we wanted to help one another to survive. 

Coping with cancer when you can chat on a forum is very useful. And it’s easy to be informed by double checking any research that is passed around.

Trying to chat / check / ask for help and understand after a brain injury? Very, very hard. And that is exactly what I mean when I say I am re-learning. How to comprehend. How to understand. How to assess and reappraise. How to remain calm instead of allowing my brain to crush my mind.

And sending the message to all; a brain injury NEVER goes away. 

Aphasia never goes away. 

Determination is the best, as even now, after 8 years, I am still moving forward. Finding humans that try to understand how extremely difficult it is to change you entire life - and how it takes so long.

And how many simply walk away.

This chuckalious #blog of mine - it is speaking for all who cannot speak. And allow others to try to learn.

#1in59 #brainbleed #SaH #artist #invisibledisabledartist #riottospeak #aphasia #arttherapy #artlife

Day 2 - see how I go...

#blogpost01
#day02

Putting anything on Instagram has become the "You Will Follow The Leader " plan. 

Written posts are constantly re-copied...or creating reels [reels invite you to create fun videos!] Ah - immersive videos. Educate your audience! Ho-hum. 👾

Creating a NEW #socialmedia account? Hmm - unless you have the time to remain relevant + fixated [24/7] - or, if your mindset cannot find or comprehend those #copyandpaste words? Nor find realism to pass out to the masses?

Oh yes! Do be sure not to say words that are now #verboten: [not permitted or allowed : forbidden or prohibited by (or as if by) **AUTHORITY**] ✍🏻
Anybody met that astounding Human who has the Power (or right) to Give Orders to all of Us? I don't think so... 🤨💬

Sometimes, #aphasia can help [I know - a startling thought, to say the least] as copying online is easy. If you can read other peoples words in an instant.

Between my brain 🧠+ my mind 🤯? I still can't 'copy' unless it is spreading something that I feel is true.
And to comprehend well? That is 24/7 without social media.
Spelling? Extremely interesting if it is incorrect.

My social media attack is now dreadful. Because I can't lie. Ever. 

So. You may say:
• #thatsamazing • #thatsinspirational • #youlookamazing • #selflove 🙄

#loveandadorable #beautiful #happy #lookinggood #follow

So - I have discovered something astounding. FB is more interesting.

Perhaps taking 8 years to get to the point of reading more than 2 lines before standing back to reappraise and assess?
Or perhaps my brain is simply still moving forward. 🧠☺️

One day, I may be able to read a book again. 📚👩🏼‍🏫
A book that takes away all the sadness 😭 - reading fiction! Reading allows your imagination to become engaged. Connecting emotionally to characters. Reflecting ones own feelings, problems [!] and desires - as you read.

So. One day. Determined. 👩🏻‍🦳👩🏼‍💻👸🏼