My beautiful broken brain

I first heard about the documentary my beautiful broken brain via mindhacks. I then tracked it down and finally watched it. Lotje was 34 when she had the same kind of brain injury as myself. I ended up calling it #mybrushwithdeath.

Watching the documentary was unreal not only because there was so much I could relate directly to. The process of what she remembered and what she doesn’t really got me. I was in tears. There is absolutely no doubt I was incredibly lucky. The mix of reality and non-reality was frustrating to say the least, but I certainly didn’t have the big problem Lotje had with reading.

Some people will say why film it? Maybe the same people who asked why I would get on stage and do a TEDx talk about my experience? You only have to read the reviews to start to understand why, telling such a personal story is so important.

As a survivor of multiple strokes including a major hemorrhagic stroke in 1999 just 13 days after my 37th Birthday and a massive hemorrhagic stroke 2011 just before Christmas I can relate to the lady in this film, I went through and I am still going through a lot of what she had experienced from her stroke. I found this movie very good at explaining what we as stroke survivors are going through. I would highly recommend this movie to people who are interested stroke experiences and want to understand what we are going through because it is truly hard for us to explain to others what it is like to live life with our beautiful broken brains.

If I was to sum up the documantary, it would be the line from Lotje herself…

I’ve learned I’m strong, accepted my vurnability and focus on what matters…

Beautifully said…!

5 years ago, while I learned to speak again

Ward at Alpha Hospital

Its the June 2nd and its about the time I could barely talk (due to a trach) but my memory was less hazy and I can remember much more. My sister tried to create a communication board, so I could communicate without saying the word. It was pretty frustrating and too be fair i did tell her. I did feel bad about it, as she really trying to help. I remember writing, this is stupid and there has to be a better way… Luckily I didn’t need to wait long before I could talk again.

Ross and Carly came and saw me a few times and certainly helped with the healing process, by making me laugh and cough a lot. I think I remember Adrian seeing me at one point too, he gave me the printed information on Google IO 2010 and the much talked about Google TV.

This about the time when I started going a little stir crazy, as it was ICU, you were not allowed to plug anything into the wall.  My saving grace was my old kindle full with ebooks which I meant to read at some point. I also had enough of the woman next to me with her kicking action to get attention. I must have read about 10 or so books while I was in ICU, unfortunately lights out was 8pm and I didn’t have the paperwhite kindle at the time.

My parents did offer to bring my laptop but I originally said no (believe it or not!). They did bring my pacemaker which I had a hard time re-learning in the first hour but gave rise to a number of mixes later.

Not being able to get out of bed was a real pain, even when I could actually stand. The nurses wouldn’t let me go to the toilet alone and it wasn’t till I pretty much pleaded with a male night nurse to please let me use the normal toilet so I could have some privacy. I finally was happy again. Privacy is something while going to the loo is something I certainly like and the doctors did wonder if my body was operating correctly.

Hospital food is pretty bad but try having complan as your main supply of food, by this point I only had to survive a day or two on it before than it was via the drip in my nose. Food via a drip was weird and interesting especially when you are fully aware of whats actually happening.

The last thing I certainly do remember is the injections of  Anticoagulants better known as Warfarin. It was either have it in the arm or in the stomach. Don’t ask me why remember I hadn’t had hypontherapy yet, but I decided the stomach was best because I couldn’t move it and have it scratch and theres quite a bit of fatty tissue… It was painful but honestly it wasn’t as bad as in the arm. Having every day got me slightly use to it but any chance I could avoid it, I did. Unfortunately it would only work for a short while before they would hunt me down for another fix!

Mum and Dad kept writing blog posts on carringbridge thanks to Sarah and Sharon.


Ian had a very good day today!  He was able to stand for the nurses and was out of bed sitting in a chair for most of the day.  He was smiling a lot and laughing at jokes (which is helping to clear his chest).His breathing is continuing to improve and we hope the trach tube will be removed soon so he’ll be able to speak.

Hi everyone,Ian is progressing well.  He is breathing with very little help now.  They are thinking of transferring him out from ICU to a High Dependency Unit tomorrow.

Ian’s dad, sister and I have been back in Manchester with him since yesterday afternoon.The trach tube had to be resited and Ian is still having some ventilation through that just until his breathing improves.  They are reducing use of it and he is mostly breathing on his own.Ian’s sister has been reading him messages from the guestbook which are much appreciated.  However, at the moment we would still like visitors to be limited to family.  Ian is having ups and downs in his recovery, but on the whole is improving.  We want to make sure he rests and does not get frustrated with not being able to speak (this is temporary due to the trach tube).   He is communicating with us by blinking, nodding and occasionally writing, and he does understand everything that is going on.

Ian’s ventilator was removed again this morning.  To avoid having the ventilator back in, he has had a tracheotomy to help him breathe.  This is just a temporary measure until his breathing is stabilised.  The drain has been removed from his head, so now it is just the feeding tube in his nose.He indicated he was in pain due to having the tracheotomy, so he has had some medication to help with that.I have travelled to Bristol this evening, but will drive back to Manchester with Ian’s dad on Saturday morning.  Ian’s sister will also be back up to see him on Saturday.More cards arrived for Ian today and they are all being stuck up to the wall near his bed.  Thanks to everyone for all the get well messages.

Celebrating the life we have

I recently attended one of my (many as I discovered) aunties funeral on Friday. Auntie Melrose was very close and we would see each other quite a few times through the year. She was well known and well liked by the huge family and many colleagues in Bristol city council where she worked for 25+ years. She lived in Easton and raised my cousin alone from when she moved to the uk decades ago.

She was a quiet but resilient women who worked hard all her life. She was also the most tech savvy Antie I had.

I learned about her death from a Facebook message from a cousin (chris) in Jamaica. It turned out she was on holiday there visiting the family and while swimming in the beautiful blue sea which surrounds Jamaica. Suffered a bleed on the brain and died in the water. Other members of the family tried to recover/save her of course.

In the funeral a friend of the family stood up and said some words like many many people. But he talked about dying in the seas of the homeland of Jamaica.

Although at first I was a little upset and thought it was a little sore, I started to think about it a little different. I gather Antie never suffered any prolonged pain. As the man said “what a way to go… In the cool calming blue seas of the Caribbean. No pain, no suffering”

Now the observant of you will notice the bleed on the brain is the same thing I had 2.5 years ago (#mybrushwithdeath). Obviously I have some experience of the what its like. But I really want to think about the life she had, and further reminds me of the posts I make about living the life your given/have/want.

I’ve had this tune in my head since I heard about my Antie…
Its called “Fool For Life” by Dash Berlin featuring the strong vocals of Chris Madin. Don’t know if out really sums up anything (she certainly was no fool! But somewhere in the lyrics it may something about us and what we do to ourselves?) but I keep catching myself humming it in my head when thinking about my antie’s death in the warm sunshine, 1000’s miles away… Then thinking I must celebrate life more.

I have an incredible family… Just on my dads side there were 15 siblings! At the funeral I was introduced to so many of dads siblings and there families! I once estimated to Sarah I have 100 cousins. Now I’m wondering if I was being too conservative with that number…! When even I thought I was stretching it a little. And don’t even start on the cousins kids!

I happened to catch the bbc2 programme, this world.

Anita Rani goes on a journey to discover why the Japanese are not having enough babies

Its shocking to see a country like Japan having such serious problems while a little island in the Caribbean is responsible for some incredible characters.

I guess all these combination of things have gotten me thinking hard once again about the purpose of why were here and what I should be doing with my life before it ends.

Rest in peace Antie Melrose…

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