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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.
Looking forward to this tonight, last-minute tables still available!
should be a cracker
looking forward to this tomorrow night
Have had some frustration with wheelchair services over the last few years. I have been very impressed with the resources of the wheelchair maintenance departments who have very good engineers, also with some of the senior clinicians in the wheelchair service who have a lot of experience. The areas that seem to be difficult are provision of equipment for niche areas for example head controls and clinicians with a medium level of experience (there seems to be a number of less experienced staff and a small number of extremely experienced staff but not much between).
This results in very large waiting time for a specialist head controlled wheelchair as is my requirement and has led me to try to source it privately through grants in order to maintain sufficient reliability to work.
Link above to exuberant trust website, the trust just put on a great classical concert with music from Chopin, Lizst, Tchaikovsky, Handel and others.
spent Friday morning listening to Debussy, and the weekend enjoying the company of friends in the sunset at Standlake.
Hope you guys enjoyed yours.