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.
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.
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.
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…