Tag: mybrushwithdeath

Is death the only way to change perspective?

Recently I’ve been pretty busy and again explain who am I and what makes me tick to new people. A part of the story is my brush with death which people still can’t believe when I tell them.

There is nothing like a life and death thing to bring your life into pin sharp perception.

2 things I saw which are related…

The story of Jonathan Schwartz on Triangulation and Derren Brown’s Apocalypse.

That change of perceptive I can certainly relate to… Just wondering if there is a way to shake people without the actual life and death part?

The Shift and my own shift…

Near Death Experiences

When you have a near death experience (NDE) or I guess brush with death your meant to act or feel a certain way it would seem. I don’t seem to be acting or feeling that way (what ever way its meant to be) some suggest I might get posttraumatic stress disorder in years to come. If this is true, I’m certainly not looking forward to re-experiencing the original trauma through flashbacks.

I remember back in July last year talking to my social worker (I assume they get you one after a dramatic experience just in-case you decide to do something silly) the one and only time. He came to my flat and we talked generally about everything and how I felt. It was ok if a little weird (most of the conversation centered around my anger for the way I was treated at the hospital), but he said something which made me think.

Obviously I don’t remember exactly what he said but basically it was something like “such an experience will make you re-evaluate your life and your faith.” To which I answered… “Like faith as in God?” he answered, “…yes I turned to god when something like this happened to me for example.”

That was the last time I saw him really, not because he was bad. Just didn’t really need him. I’ve been figuring stuff out myself in my own time but to be honest I’ve not really been thinking about turning to god or anything like that. But every once in a while I come up against (for a better word) something which makes me think (not necessarily in favor of god or religion).

Bobby

This time, it was when I went to the Thinking Digital university/workshop on happie.st with Bobby Patterson. I wasn’t looking for happiness or even seeking happiness, since the near death experience I’ve come to appreciate life on a totally different level.

Its hard to explain… but I’ll try

I view life on a slightly amazed scale. The miracle of life is so precious and I’m in totally ore we even exist at all (thanks to evolution). We scuttle around and worry so much about our own problems while the rhythm of life marches on regardless.

Our brains are wildly complex and able to conjure up the greatest dreams and darkest nightmares. The mind can set you free or imprison you for life.

Its genuinely a wonder and thirst for life…

And I’m reminded of this quote… (no idea who from)

Your just a thought away from changing your life…

So when Bobby talked about happie.st and some of the thinking behind and why, it struck a cord with me and my recent thinking.

One of the many links he suggested was a link to a film called the shift by Wayne Dyer

From the creators of You Can Heal Your Life: The Movie comes a compelling portrait of three modern lives in need of new direction and new meaning. In his first-ever movie, Wayne Dyer explores the spiritual journey in the second half of life when we long to find the purpose that is our unique contribution to the world. The powerful shift from the ego constructs we are taught early in life by parents and society—which promote an emphasis on achievement and accumulation—are shown in contrast to a life of meaning, focused on serving and giving back. Filmed on coastal California’s spectacular Monterey Peninsula, The Shift captures every person’s mid-life longing for a more purposeful, soul-directed life.

I watched the shift and I thought about it. I wasn’t sure quite what to say about it.

It felt quite religious in parts but in other not so much. There’s a air of cheesy self helpness to it but actually its not as bad as it would seem to be. The hard thing is wanting to know, what its end game (as such) is? I felt looking at Wayne Dyer’s wikipedia page would help, and it did. The interesting parts included…

Although Dyer resisted the spiritual tag, by the 1990s he was altering his message to include more components of spirituality, in Real Magic, and higher consciousness, in Your Sacred Self.

My belief is that the truth is a truth until you organize it, and then becomes a lie. I don’t think that Jesus was teaching Christianity, Jesus was teaching kindness, love, concern, and peace. What I tell people is don’t be Christian, be Christ-like. Don’t be Buddhist, be Buddha-like. [cited interview]

“Religion is orthodoxy, rules and historical scriptures maintained by people over long periods of time. Generally people are raised to obey the customs and practices of that religion without question. These are customs and expectations from outside the person and do not fit my definition of spiritual.” [cited post]

I feel that should be going for this self help stuff, but I’m still feeling very uneasy about it. Some of the things from the shift are interesting but the overall tone is closer to something I can imagine someone with an agenda or religious view would have. I’ve certainly not damaged the part of my brain which deals with rational thought thats for sure. I expect Dyer if he read this and saw me, would suggest its ego talking but I certainly don’t think it is.

Anyway, I didn’t quite know what to think at the end but I certainly felt a bit like oh well thats a shame…

I guess I’m hardly changed in certain ways but forever changed in others. I do feel like I should be more changed that I actually am, but maybe thats the fighting response holding on to what I am or something… Who knows…

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…

This was almost the last night of my life

About one year ago, I went to sleep after trying to stay up watching the National Elections of 2010. It must have been about 1am. I remember watching the election show on BBC one and falling a sleep a few times. So in the end I went to bed, not knowing who had won the election. Who would have thought the Liberal Democrats would have teamed up with the Conservatives to create a collation government?

When I woke up the next day, the bleed on my brain had already started to cause damage to my memory because the only thing I remember is the cleaner knocking on the door and me thinking well my flat mate will get up and let her in.

No doubt May will be a time for reflection for myself…

As always its great to be alive…

Burning the midnight hour

Doc Searls writes about intelligence on his blog. But he talks about sleep too…

Smart people SLEEP LATE yells the headline of this opinion piece in the Winnipeg Free Press. It begins,

Sleep is a fundamental component of animal biology. New evidence confirms that, in humans, its timing reflects intelligence. People with higher IQs (intelligence quotients) tend to be more active nocturnally, going to bed later, whereas those with lower IQs usually retire to bed sooner after nightfall.

After that Doc Searls launches into a discussion about what is IQ and how silly the whole notion of a IQ really is… But what got me was the idea of sleeping late and waking up late.

Since #mybrushwithdeath, back in May/June I’ve been changing my lifestyle around. One of those changes is to do with my time I go to bed. Before I would generally go to bed about 2-3am and wake up about 10am on a week day and on a weekend sometimes go to bed about 9am and wake up about 2pm. Yeah quite shocking… But now I’m going to bed about 12am and getting up about 9am everyday (even weekends).

However things are starting slip, not purposely. Although I’m sticking to the new routine, I’m finding once again that I’m much more productive late evening and at night. I don’t know why, I just am.

I got a feeling I’m fighting nature/biology on this one.

One of the mixes while I was in Hospital – outta of hope mix

The outta of hope mix by cubicgarden

I had a listen to most of my mixes I recorded while in Hospital, and there some good stuff there. Its going to take a while to recover and make them decent for sharing because sometimes I had the cross fader in the wrong position which is a shame or forgot to do something equally silly. Anyway here’s a nice short one to kick us off. As always enjoy…

  1. Above the sky – Airwave
  2. Cafe del Mar (Marco V remix) – Energy 52
  3. Are you fine – Kyan vs Albert
  4. Sincere (pulser remix) – Firewall
  5. Language (santiago nino dub tech mix) – Hammer and Bennett
  6. Shadow World – Thomas Brozwaer
  7. Lately (Riley & durrant mix) – Airbiscuit
  8. She wants him – Moussa Clarke & Terrafunka
  9. Into Something – Richard durand
  10. The Blizzard (Monogato’s Filth Remix) – Kalopsia
  11. Gamesmaster (matt darey 1999 remix) – Lost Tribe

A letter to the hospital

My ex-wife rewrote my rant about the Hospital into something official sounding. I think you will agree its much better that my efforts. It sounds kind of weird my ex-wife helping me out like this but shes been excellent the last few weeks helping out where ever she can. So we’ve really made up and who knows we may actually be friends following this. Its a shame it took this to get us to talk but its a positive which has come out of this whole experience. I even met her little son the other day which is slighly scary because I didn’t know quite what to expect.

Anyway, here’s the letter we’re using for the complaint to the hospital (I’ve been told not to put the name of the hospital, just in case they are checking the internet for complaints or something) If you’ve been paying attention, you will know which hospital it is…

Following my verbal complaint at my discharge on 17 June 2010, I am putting my concerns in writing so as to be clear about the matters I believe need attention and/or investigation.

1. Lack of information to family members in ICU

My family was unhappy with the amount of communication during my stay in ICU. Some nurses would come along and do things but not tell my family what they were doing or why. My parents received next to no information about what had happened to me or what my prognosis was. In one instance, my mother was treated to an inappropriate lecture about hospital pay instead of getting an update on my condition. They were not encouraged to ask questions and generally felt uncomfortable approaching some of the staff. The consultant was never available and my family ended up having to book time with him several days in advance just to be able to speak to him. They (and I) feel more should have been done to make sure they understood what was happening.

2. Problems with ward management

After I left ICU, I was moved twice within two days which was very unsettling. It seems that no one knew quite where to put me, so the first ward I went to proved to be unsuitable, and in the ANU I was with people who were pre-surgery while I was recovering. Maybe there isn’t really a suitable ward for my situation, but I would have thought it made more sense for me to be with other people who are recovering from surgery (oppose to a medical ward). I also did not receive any sort of ward orientation and was not advised until several days into my stay that I was permitted to leave the ward.

One particular problem with my ward was another patient who needed constant care and attention and didn’t receive it from the staff. As a patient, I should not have to look after other patients, but I felt obligated to help as the patient next to me was constantly trying to get out of bed (risking a fall), trying to pull his tubes out, and asking me ‘when are we going?’ On most days, I had to call the nurse to deal with him several times, sometimes every five minutes, to stop him from hurting himself. I found this very stressful and certainly not what I needed with my already high blood pressure.

3. Missing medication

The most serious complaint I have about my time at the hospital is that I was not given my medication, though it was signed off in the chart that I’d received it. On 16th June the chart was signed in the morning, but I am certain I did not have the pills. There was one pill that was very bitter, and I have to be awake to take it, so I am absolutely positive it was not given that day. I am also certain that there were other days I did not get my pills. On the afternoon of 16th June, I told a nurse I hadn’t had my medication. She looked at my chart, saw that it had been initialled, and dismissed my allegation with no further investigation. The ward sister was told, seemed unconcerned, and did nothing. When the night nurse came on shift, I also told him I hadn’t received my medication, and fortunately he believed me. He opened the medication box and found that my blood pressure medication pill packet was empty. This begs the question, how many doses did I miss? Why did the morning nurse sign that I had my medication when I didn’t? Why didn’t the person who used the last pill arrange for more to be sent from the pharmacy? Why didn’t the afternoon nurse and ward manager investigate my allegation immediately? If they dismissed my allegation because they thought I was having memory problems (which I wasn’t), why didn’t they do something to prove to me that I was wrong (which, as it turns out, I wasn’t)? Without those tablets, I was at serious risk of a relapse. I am thoroughly disgusted that whilst I was at a vulnerable point in my recovery, the hospital’s medication management procedures allowed me to go for days without essential medication. This is serious medical negligence and I will expect to be informed of the disciplinary proceedings that surely will arise from this matter.

4. Lack of care/attention to special patient needs

I have a serious needle phobia which I made everyone aware of. When I’ve had hospital treatment for other conditions (including an operation needing anaesthetic), they were very accommodating as far as helping with alternatives to injections (i.e. using gas to put me to sleep before any IV was started). It was written in my chart that I am terrified of needles and should be approached with care. Until I was well enough to protest, I was given heparin injections in my stomach. I was told this was very important to prevent blood clots, but when I said I didn’t want injections this was taken as though I’d said I didn’t want treatment. I was willing to take alternative treatments, but as discussed below, my doctor was never available to ask about possible alternatives.

5. Lack of communication and attention by the doctor in charge of my case

After leaving ICU on 07/06/2010, I only saw my doctor once. The other patients on my ward saw their doctors on a daily basis and were told what was happening with their care. On the one occasion a doctor did see me, I still wasn’t told what was happening. After social services assessed me as fit to go home, I had to wait for 3 days to be discharged, ultimately by a different doctor because mine was never available. When I complained about this after my discharge, my doctor who we (me and my mum) had never seen admitted he hadn’t even realised I was still in hospital; he said he thought I’d self-discharged. Then he stated he had been ‘following’ my case, but had no answer when I asked how that was possible when he didn’t even know where I was. Basically, for three days I was taking up a bed that someone else could have used because my doctor didn’t know where I was and the ward staff didn’t seem to be able to communicate this to him, despite the fact that he was in the same building. I had been left in the ward to hopefully get better.

6. Lack of respect for patients and their visitors

Visiting hours on my ward were restricted to 2.5 hours per day, and that time is very precious for patients and their visitors. On one occasion whilst my mother was visiting, a nurse interrupted us and insisted that I put on a nebuliser mask. The nebuliser mask makes it impossible to speak to your loved ones, and there was no particular reason it had to be done at that exact time. It was very rude, and for the sake of an hour this nurse could have waited until visiting hours were over.

Additionally, I felt ignored most of the time I spent on the ward. The nurses were friendly to the other patients and addressed all of them by name, but for some reason I was left out. Perhaps it was the fact that no one seemed to know why I was there or what was supposed to be happening with my care due to my doctor forgetting about me. I was quite surprised when I was told by one nurse that she didn’t even know what had happened to me. I thought that was essential bit of information when a nurse is going to be caring for a patient.

In summary, the time I spent at the hospital was very disappointing for me and my family. The overall lack of communication meant I stayed in hospital much longer than I should have and that caused a lot of distress. With all the people that were supposedly contacting the doctor on my behalf (PALS, the ward manager, nursing staff), I do not understand how my doctor could ‘forget’ his patient is languishing on a ward. I have huge concerns over how medications are managed and I am appalled that when I brought the matter of my missing medication to the nurse’s and ward manager’s attention, I was not taken seriously. For a more non-communicative patient, mistakes like that could be a matter of life or death. I certainly feel safer out of that ward where I know that my medication is my responsibility and I do not have to depend on negligent medical professionals to get what I need.

I do expect a thorough investigation of these issues, particularly with regard to the missing medication and my doctor’s neglect of my case. I look forward to hearing what steps you will be taking to ensure my experiences are not repeated with other patients.