A shared passion for the brain

How To Retrain Your Brain Funzing talk in Manchester

How to Retrain Your Brain was my 3rd Funzing talk I have been to. The 1st I wasn’t that impressed with, while the 2nd one (Neuroscience of Decision Making) was great. With my interest in power of the brain. I’m happy to say retrain your brain was

I had no heard of Lisa Upton but during the evening hosted at MadLab, we got to learn a lot more about her.

Just over a year ago, Lisa was faced with a decision that would change her life forever. She had to decide whether to have awake brain surgery to remove a tumour which lay deep inside her brain in the left temporal lobe, close to the area responsible for speech and language. This decision came with extremely high risks – having the operation meant that she could have a stroke, may have to learn to talk, read and write again, or worst-case scenario, not survive the surgery.

Not having the operation meant living a life with four/five epileptic seizures every day and the chance that the ticking time bomb inside her brain could go off at any moment and this could take her life.

Lisa made the brave decision to have surgery.

It was weird hearing Lisa talking about her experience and noticed some interesting parallels in my own experience and outlook on life.

In the months following her operation Lisa’s life changed beyond measure, she thought about life in a completely different way, she approached things with a different attitude and as a result of this, saw new and amazing opportunities presenting themselves every day.

Its incredible to see the opportunities just presenting themselves. I’ve lived by those opportunities ever since. I always remember Derren Browns show about the secret of luck, facing my fear of injections (Belonephobia), facing the fear of rejection, going on dating shows and much more…

Lisa wanted to understand why this was happening and couldn’t accept that it was just “all part of the recovery”. She spent months researching the brain and its many functions, spending time with neurologists, neurosurgeons, neuro-researchers, neuropsychologists and patients at The National Hospital for Neurology and Neurosurgery.

Now thats really cool, if I hadn’t spent so much time in hospital and had the issues I had; I likely would have gone back to Salford Royal to thank the staff again years later. But spending time would have been amazing (too be fair it still would be).

With a heart filled with gratitude, Lisa will share with you the amazing things that she learnt about the brain, and how we are all capable of reprogramming our brains so that we can achieve greatness and euphoria.

I reflect back on a blog I wrote years ago, while trying to explain to others how different life was since. My parents always thought I’d want to forget about the whole thing but I refuse to forget. I didn’t put my cards away for a whole year and still have them stored away even now. It gives me power and brings a new emphasise to life. Some people near me noticed how much I changed and some couldn’t quite comprehend the changes.

Lisa and others have called it living a conscious life. Its something I’ve noticed in myself, but weirdly very fitting with some of the dyslexic advantages, especially living in the moment. It might not come as a surprise the doctors also found an increase in the right brain activity (usually commonly associated with dyslexics, I know this is massively contested!) in Lisas brain. ThisĀ  reminded me of the early months after my brush with death, it was suggested by the professionals that I might have forgotten/unlearned a lot of my coping mechanisms for dyslexia. Almost switched back to my natural state of some kind?

It also reminds me I need to do more about writing my gratitudes down following Sarah Raad’s workshop at Thinking Digital Newcastle last year.

I honestly really enjoyed the talk and it was a joy to hear from someone else as interested in the brain/mind due to similar reasons…

Story of Me, the TedxManchester video

Sometimes my slides can seem very odd, theres little information and it tend to be quite difficult if you’ve not heard me talk before. I also don’t tend to write notes but instead use slides as a prompt my memory. I can stand up and talk freestyle without a slides but to be honest if you want me to stay on topic, its best to let me use slides…

Anyway I’m really happy to say, my video of me talking at TedxManchester2 went up today.

Thanks to Nathan Rae for removing the Herb Kim spoiler at the very start (bless his cotton socks or something like that). As I said previously Herb Kim, talked about the experience before I even got a chance to leave my chair and although it was slightly embarrassing having my presentation spoiled beforehand (in a nice way) I almost couldn’t get up because it was incredibly powerful and ever so humbling…

I’m pretty much through-out holding it together but only just. At the end, when Herb comes on, that was it – The whole experience of going through it and coming out well enough to tell the tale got to me… It was amazing to think just under 2 years ago I was dying and there was nothing I could do about it.

There was so much I wanted to fit into the slides including the visit from Josh, Julian Tait, Sheila Thomson, Dave Crossland, Sarah Blow etc. The amazing support I got from my sister, Ross + Carly, Parents and Family. The fact without Billie my mortgage advisor I would have lost my flat for good. I wanted to include stuff about my dreams and the idea of mydreamscape. I wanted to extend the part about my troubles with Ebay and go into serious details about the way I was treated in hospital and the official written apology I later received. I swear there was about another 20mins of things I could have talked about…!

I’ll refer to my thanks you’s after I came out of hospital, because I can never say enough thank you to everyone who was involved and hopefully I’ve inspired people to take a deeper look at their lives and live it to the best of there abilities. As I’ve always said, stop living someone else life, live your own because you are unique and ever so complex on ways which we can not understand.

As Cobb on inception says

I can’t imagine you with all your complexity, all you perfection, all your imperfection.

Later in the presentation it may seem like I went all zen but honestly, it sums up the way I see the world now. I can’t imagine it with all its complexity, all its perfection, all its imperfection.

Once again, hopefully it helped/inspired/reached someone… Don’t forget to share it with friends and family, I certainly will be…

One year on from my brush with death

Get well cards from 2010

It seems only yesterday when I was totally stressed out about the closure of BBC Backstage, trying to help Future Everything, buying my first flat on my own and goodness knows what else…

I assume this time last year is about the time Adrian got the call saying I didn’t have mengentis, instead I had a massive bleed on the brain and they were going to operate straight away, could he contact my parents.

It still makes me very sad that I put everyone through everything but then again I really wasn’t to know. The bleed was caused by having high blood pressure and although my size doesn’t help, its also in my family genes. Both my mum and dad have high blood pressure and to be honest I’d never really thought to ask them about it. Ever since, I’ve asked them all types of questions…

In my flat, I have had all the cards I received during my time in hospital up. It reminds me what happened and how I need to move forward. My parents would rather I had taken them down but I did say I would keep them up for a year then put them away for safe keeping. This is exactly why I’m writing this post I guess.

I know I’m one of the luckiest people on this planet. To survive a bleed on the brain (Angiogram) is one thing but to be able to walk away with little permanent damage is just something else altogether. I’m not one for religion but as my parents say, god must have been looking down on me that day.

Get well cards from 2010

The blow by blow

Over the next week the story of last year becomes a lot clearer in part due to my caringbridge site/blog, which was setup by my ex-wife Sarah, who at the time I was not on speaking terms with at all.

Ian had been feeling very unwell, and his flatmate and his boss convinced him to go to the hospital to get checked out. We were called on Monday 17th May and told Ian was in hospital. Originally they suspected meningitis. However, all we know at the moment is that he had a bleed on his brain. He had surgery that day to put a drain in and has been heavily sedated in the ICU at Salford Royal (aka Hope Hospital).

It all felt like a lot longer, it almost felt like I was in hospital months, but I guess thats the powerful drugs effecting my judgment and memory. I assume looking at the dates I was only in ICU for about 2 weeks.

I do remember this moment

I spent most of the afternoon and evening with Ian today. They have taken him off the medication that was keeping him asleep and his condition is fair. He’s opened his eyes and is able to communicate with me by nodding. He is still on the ventilator but he is starting to breathe naturally. They want to keep the ventilator in for the moment in case he isn’t responding properly.

He had tears in his eyes while I was reading all the get well messages to him. So far he will only open his eyes when I ask him to, but he will not do it for the nurses.

I could hear my mum calling my name… And I woke up in a strange place mainly of white. My mum, dad and sister were standing over me. My mum asked do I know where I am? I shook my head and she said hospital. They read out a few messages I had gotten and I fell a sleep with tears in my eyes.

The next day (Saturday)… I remember slightly more.

Ian wanted to know what happened as he cannot remember falling ill; his sister has explained it to him. He then wanted to know what the doctors said so I’ve told him about having the bleed on his brain. He was listening and nodding to say he understood.

By Monday my mum certainly knew me very well because she wrote about my recovery, she did say to me later in the year that she knew I wasn’t going to be physically disabled because my legs and arms kept moving now and then while I was under…

I still feel very confident that Ian is going to make a full recovery. Today he smiled and squeezed my hand, and he laughed when we told him a joke. He knows where he is and recognises his family.

He is still quite tired and drowsy, but I am reading him your get well messages when he is awake enough to listen. Alvin and I had no idea how well known Ian is until we saw the messages coming from all over the world.

Yes I certainly remember trying to stay awake and learn more about what was going on around me but struggling to stay awake even during guest visiting hours.

I am staying at Ian’s flat in Manchester and am pleased that I have figured out how to turn on his television!

Good for my mum… I kind of forgot how alien it must have been for her, shes so use to just turning on the TV and sound coming out. While I had it setup so all the sound on the TV is muted and comes out to the cinema amp instead. Luckily I changed the Sherwood amp to the Onyko amp sometime before otherwise it would have been impossible to work out.

Tuesday, and I’m wondering about Google IO 2010 and was in tears to hear about what Jeremy Keith did for me

I held up some of his cards and messages for him to read. Ian wrote on a piece of paper asking for an article about Google, and one had been sent to him so he got to read it (thanks to the sender!).

The doctors are hoping to to take him off the ventilator again tomorrow and see how his breathing is doing.

On Wednesday Ant/Adrian posted this blog post on the Backstage blog. While Thursday…

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.

I remember the tracheotomy, in actual fact I’ve still a year later got the scar from where the hole in my throat was. The Feeding tube in my nose was very strange. I remember when the nurses would change the feeding stuff to something sweeter and my nose would almost tingle as it slowly got pumped down the back of my nose.

By that weekend (last weekend of May)… I think Ross and Carly came up to see me and my mum wrote this.

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.

The messages and cards were overwhelming… They really helped me. I remember thinking I can’t believe the amount of peoples lives I’ve touched. Not being able to speak was a nightmare… my sister (bless her) came up with a system for communicating but what she missed was the fact it was based on speaking language and so required far too much effort to make it useful. My frustration was clear but I was able to somewhat laugh with Ross and Carly.

I’ll leave the walk down memory lane there for now… but its worth poping along to Thank you part 1 and Thank you part 2 which cover my thoughts and thank you’s when I left Hospital.

Time to pack away the cards

Life goes on

Now one year on, my life has totally changed around. I’m doing a lot less but also going deeper in certain areas. I’ve decided to leave the open data movement to its own momentum. I’m now full of creative ideas which I keep writing down in Evernote for future use. Some of those ideas are to do with the BBC and some to do with other aspects of my life like djing. I’m also less likely to hold on to them, which fits nicely with my need to use less brain cycles.

I’m living much more of my life publicly, trying to hold back requires effort and brain cycles so unless there’s a very good reason, I tend to share it. I’m also less guarded with information about myself, heck I’ll pretty much tell anyone about my experience with the bleed.

I also have a total new appreciation of our brains and the system which keeps it ticking over. I’ve of course taken advantage of mine to trick it into thinking giving blood and injections are not as bad as they should/could be via hypnosis. Also a better understanding of the need to stay fit, healthy and have a very positive outlook. I really hate to see life being thrown away, even more so than before.

Generally my brush with death has changed me in many positive ways and I never want to end up back where I was. Although I’m thinking about popping back into the hospital to see some of the nurses to see if the changes I complained about have actually happened or not… But thats for another blog post later in June.

Its certainly time to stop the #mybrushwithdeath thread. Archive and move on but never ever forget…