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My friend Russell shared this piece of writing with me:
“Our nervous systems are composed primarily of biological cells called neu- rons, which pick up chemical signals from other cells and then transmit that information down a long, thin arm of the cell, again releasing chemi- cals into the gap, or synapse, between cells. The neurochemistry of these transmissions is what is behind much of the revolution in the pharmacol- ogy of how to affect mental states and emotions, such as the treatment of depression with prozac. But such pharmacological treatments are rela- tively crude in comparison to the complexity of brain organization, the brain being the most complicated object in the known universe. Paul Churchland (1989) put the issue of its scale into perspective: We each have about 100 billion neurons, each of which has synaptic connections with an average of about 3,000 other neurons, so even an individual neuron can be a fairly complicated processor. This makes for about 100 trillion synap- tic connections. If each connection has even as few as ten different activa- tion levels, the total possible number of distinct brain states is on the order of 10 to the 100 trillionth power. Although this number represents only a realm of logical possibility, it is a very large number, given that the esti- mates of the total number of elementary particles in the universe is about 1087. Even if only 0.1 percent of those states are functional neural states, and only 0.1 percent of those functional states are conscious, that would still represent 1099,999,999,999,994 possible conscious states. Such an under- standing of scale makes it easier to imagine that this “piece of meat” might actually be what makes mental and spiritual lives possible, what is shaped by and subsequently generates the stories, narratives, and myths by which we make sense of our lives.”
Unbelievable magical emotional
handsdown the best festival
met so many great friends and listened to so much great music
#wilderness #pandemonium #Londongrammar #futureboogie #tomMiddleton #zero7 #wewereevergreen
Had my 30th birthday celebrations over this weekend and thoroughly enjoyed the company. The weather cleared up on Saturday so we had a lovely barbecue with an excess of Food & Drink, quite an appropriate sendoff into my thirties. So thank you so much everyone who came and made it memorable occasion. It was very special to be with such good friends and particularly to be able to spend the early hours with my siblings Polly and Ollie. Love to my dad and other siblings who were not able to be there (In Kenya).
our annual pilgrimage to Paleo Festival was great, this year marks 10 years since I met Ellen on the navette (tram) between Paleo and Nyon (nearest town).
This year we had the pleasure of cousins (Euean, Ffion and Ben) and friends (Lizzie, Lizzie, Heather, James, Pablo, Andrew) as well as wonderful family and Swiss friends.
The music was an extensive mixture of pop, rock, alternative, reggae, electro with highlights including Elton John, Jake Bug, Prodigy, Seasick steve, Jack Johnson, fat Freddy ‘s drop, Placebo, James Blunt, Stromae, Ky-mani marley, The Parov stelar band and some unexpected delights including St. Lo, Gestaffelstien, Robears, gypsy sound system Orchestra, Mantanza, Che Sudaka, Jagwar ma, mr oizo, fills monkey, woodkid, tweek.
weather held out mostly during the actual festival but the ground was horrendously wet which made for a very slippery time, which was entertaining but messy.
looking forward to the 40th Paleo festival next year… photos on Flickr and Facebook
Had a lovely 2nd anniversary, dinner at “rickety press” in Jericho, Oxford and saw “begin again” film @ Phoenix picture house also in Jericho. lovely film and food, good weather and wonderful wife, what more could one ask for?
love to all
Posted by: Tom in: news
Gave a talk at the conference today. The subject was employment and assistive technology for someone with spinal-cord injury.
photo slideshow from the previous backup city dinner talk:
Posted by: Tom in: news
Enjoyed this talk and agreed with its almost entirely.
Had a great weekend with my dad and uncle talking about current affairs, peacekeeping, modern web services and wine while barbecuing and watching the World Cup. Not a bad performance by England, better than a fair few I have seen. Italians just reminding us that Pirlo is a master.
enjoying the sunshine,long may it last
enjoyed a lovely weekend with some time relaxing in the hammock in the garden and then skiing in the biski in Hemel Hampstead(lesson with DSUK). my first snow faceplant in a biski!
pictures on Flickr, of everyone is enjoying the sunshine
Our Italy trip was great, fantastic hospitality as usual from the well renowned “a durmi” holiday accommodation. Great company with Ellen, Angela, Aniko, Chiara, Elisa, Alison, Christine, Didi, Lisa, Ermano, Clara, Graziella. the most spectacular food from our friends at “l’artichoka” and “totano blue”.
Due to the recent refurbishments of Levanto and the access to surrounding towns we were able to travel along the coast through the tunnels (which are fully wheelchair accessible) to the towns of Bonasolla and Framura. We travelled via British Airways from Gatwick to Genoa and then used an accessible taxi (not cheap but very good and driven by a supplied driver) to get to Levanto.
Treatment at Genoa was very good if unorganised and the staff at Gatwick were friendly but there was no communication between groundstaff and airline staff. Not much of a surprise but definitely manageable.
Going to start looking into finding ways to help with the cost of flights for personal assistants as this is always a barrier to travel for someone with high dependence.
Great to get some much-needed sunshine and take the mind off work for a while, reading my iPad from the chair via the head control proved a great success using the “Perrero” module.
Stunning food and scenery as you would expect, managing the uninhibited staring from the Italian populace was often uncomfortable especially when a returned smile was not reciprocated. I think a minor cultural Revolution is necessary to help with the acceptance and accommodation of physical disability in Italy. Makes me really appreciate the relatively positive attitude we have in this country.
So thank you so much to Angela and Aniko for facilitating such an enjoyable break and mitigating against potential skin related disasters with due care and diligence.
I’ve uploaded a few photos to Flickr…
Buona Giournata (I think!)
The short introductory videobefore my talk at the backup trust city dinner
taxis there Just leaving for a bit of respite sunshine in Italy, flying for the first time (to Italy) and trying to pack minimally!
So let’s just hope be accessible taxis there when we get there
seemed to go down well, hopefully helped raised a lot of cash for the cause
WHAT GOT ME HERE TODAY
I am going to share with you my experience over the last 7 years since my accident, and about three features that have got me here today:
- the generous energy from my family, friends and – most of all – my wife
- my stubborn personality
- BackUp, the original restorer of my self-belief.
I was in Bulgaria when the accident happened, visiting Ellen who was doing an Erasmus placement at the Art Academy in Sofia. I was snowboarding up in the snow park on my own. My memories are vague but after a few hours I did a jump and over rotated. I felt a certainty when flying through the air upside down that something was inevitably going to go wrong and there was nothing I could do about it. The next thing I remember was opening my eyes and staring at the clouds knowing things were going to be different from now on. Before I drifted out of consciousness there was an onset of panic as my lungs filled with blood from where they were punctured by my broken ribs. I regained consciousness briefly and tried to say “ellen” so the Mountain rescue could find her number on my phone.
From then on it’s all a bit of a semiconscious nightmare, I suppose I had what you would call an out of body experience where I was floating high above myself watching medics perform CPR. I’m told I had a cardiac arrest on the mountain, in ambulance and in a&e.
I had an eight-hour operation to fix my neck and I find it strange thinking of my family and girlfriend in Bulgaria being told I wouldn’t survive, or be able to breathe without a ventilator, or that I would be brain-damaged…
After the accident was a sustained period of drug induced amnesia, being on a ventilator with an inability to speak when only Ellen could lipread me. I used to “click” with my tongue to get attention and that if that didn’t work I used to set off my ventilator alarm by holding my breath. It was a slow transition to full consciousness and realisation, I struggled with the idea of paralysis after the shock wore off. it felt like my life was over and I didn’t want to wake up. I would try not to cry in front of Ellen, I spent a lot of time trying to talk through it with my dad. It was hard to cope with the idea of not walking out of hospital, not playing football, not being able to dance, not feeling snow beneath me and especially not being able to hold Ellen.
I went from being an athletic student with good grades and potential to now being a slightly overweight, moderately competent software engineer and husband after starting work two months after discharge from hospital and getting married in 2012. The surprising thing is that i’m not miles away from where i would have been if It had not been for the accident.
But it wouldn’t be possible without a determined mindset and a belief. That’s what Backup gave me.
What I learned during my recovery is that the number of things I could do with my life used to be enormous and the number of things I can do with my life now is also enormous. There are things I cannot do now and this is still sad but it’s not enough to keep being sad.
When I left rehab backup helped me challenge the notions of physical fragility that had been developing in my mind since my accident. Going on a skiing trip immediately after rehab seemed implausible but the backup trust trip to Aura – Sweden where I got back on the slopes was the perfect adrenaline injection. This was also my First disabled flying experience, something I was very nervous of before but now do as a matter of course.
What I learnt on the course was invaluable, being able to put trust in others, realising that people want to help and don’t mind being asked and practical lessons like transferring into the sauna and Jacuzzi without a hoist. Through Backup I met people who had done it before: they encouraged us to be brave. They helped us realize we still had stamina and could manage subzero temperatures and being thrown around on the slopes. We just had to prepare more, to wrap up and strap up.
Being able to fight for myself gets me a long way. The energy of family and friends powers me forward. One of the most difficult steps in lifestyle adjustment is living independently and gaining CONFIDENCE by stepping outside my comfort zone helped me enjoy ADVENTURE again. Going skiing with BACKUP got me back doing what I LOVE and reminded me I’m not made of China.
As well as activity courses, Backup provides well structured mentoring services and much-needed peer support, not just advice from people who think they know what it’s like, but people who have actually been there.
I met so many amazing people in hospital, from all walks of life, and experienced some top-quality health care. Fellow patients weren’t all doing crazy sports or other life threatening activity when they had their accidents, some had simply slipped on a magazine, had a common road traffic accident or fallen down steps. Peer support was one of the most important factors in coming to terms with paralysis as we were all trying to manage similar difficulties. Even if the difficulty was just getting to the pub, we did it together.
Backup helped extend this beyond rehab. They helped me to realize that I could enjoy travelling as I used to and that I had the confidence I needed to return to work and not live within the shadow of my disability.
I met Ellen ten years ago at a music festival in Switzerland, we have been every year apart from one and we will be there again this year. We still have… what a silver lining. Conc natural.
I still feel like the same person I was, perhaps a bit more grounded. I still do things I enjoy like clubbing and travelling and I still like a drink with my friends, in fact sometimes too much.
An unfortunate example of how I’m still the same old tom as before, on my unforgettable 10-day stag do in Ibiza I managed to smash my front teeth out by bouncing my face off the curb after hitting a pothole and falling out of my chair. a month before my wedding day! That took some explaining as she definitely wasn’t impressed.
Even though we live a happy and fulfilling life now, every time we hear of someone having had an accident and becoming spinal cord injured it breaks our hearts . Not because they might not be okay or because they might be stopped from getting on with their lives but because that beginning stage before you realise all the potential is more than hard. With the help of backup we can find the strength to maintain our mental and physical stamina. The ability to live life to the full will depend on this and our self-belief. BackUp certainly helped me and hundreds of others to find ours and keep it with us, to relocate it when mislaid, and to use it to chart our paths ahead.
Thanks for listening. Please help them continue this life-saving work.