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...

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"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.