Chrissie running the London Marathon in aid of the Pavilion Trust..

Here’s a message from Chrissie Verduyn, a very good friend of my mum’s (& she’s my brother’s godmother). She is very generously and courageously running the London Marathon in aid of the Pavilion Trust.  Best wishes and gratitude to her – thanks very much, Chrissie:

“I know that I was only going to run the marathon once, but…….
This year’s event is on April 13. My training is going well and I am hopeful that if uninjured and free of colds I will make it to the start line.
I am fund raising for Tom Nabarro, the son of my friend Susie Graham-Jones. Tom sustained a serious neck injury in a snow-boarding accident last April. He is still mostly at the Spinal Injuries Centre at Stoke Mandeville hospital, but will soon be discharged to his grandfather’s house in Standlake, where a small extension is being built for him. 

Additional funds are needed to build the Pavilion, a specially adapted and equipped work and social space for Tom, who is a computer engineer.
The building will also be used as a venue for charity concerts and events.
Having this extra space will make a great difference to Tom’s quality of life.

If you would like to sponsor my run, then you could send me a cheque made out to the Pavilion Trust ; or you could make a direct payment to the account below, & email me or Susie to let us know you’ve done so – (drsusie123@aol.com).

PAVILION TRUST account : HSBC sort code 40-35-35
Account number : 91392654
Thanks for any support. We will keep you posted!
Chrissie.”

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I had a great Easter weekend, and watched Arsenal versus Chelsea at Stamford Bridge on Sunday.The atmosphere was very intense and the football very enjoyable.  A big thank you to Michael Mosselmans for the tickets and the opportunity.         

Easter 2008: Important message to all readers at the end of this post

David here: I returned from an intensive week of work with colleagues from international organizations in Bangkok to join Tom in Stoke Mandeville on 21st March where he was on excellent form full of plans and ideas (he really enjoyed the visit by the Bleasedale family…) and with much progress to report.

After lunch his mum Suzie and sister Polly came in the van and we went in convoy for his Easter “out” at his grandfather’s house – The Limes in Standlake. It was great that Ellen was able to come later in the evening: she is on grand form.

Next day – Saturday – it was snowing one minute and bright sunlight the next: Gillian, Josie and Lucas who came in from New York on the 21st joined Tom, Ellen and Polly – Josie and Lucas had rides on his chair: Ellen and Polly organized a difficult Easter Egg hunt in the garden where Tom’s keen “spotting” skills were much in demand. The house was decked out with orchids kindly provided for Tom by some of my colleagues at the Bangkok meeting (pictures follow).

After eating together Gillian and Josie went on to my sister, Ruth’s, in Essex…Lucas and I stayed in Oxford so that we can join Tom on today’s expedition to see one of the football games of the season….

And there is great progress on the steps towards the construction of both the extension and the pavilion at The Limes following a meeting with Charetered Surveyor David Kemp to look at builders’ proposals on 22nd morning.

Tom and I go to Cardiff later in the coming week to join Ellen and see the fruits of her labours on her latest stage-set design project.

It is nearly a year since Tom’s accident – and after 12 months of quite stormy recovery Tom is stronger and more focused than ever. I am putting together a collection of notes to him – if you would like to contribute do put a comment on the site under this post, or if it is easier, mail me direct at either david.nabarro@bluewin.ch or david.nabarro@undp.org indicating whether your message is private for Tom or OK to put on this blog with others. I will put the messages together for him during the first week of April.

overdue

Overdue

I haven’t written in a while, and feel like I should because I’ve been thinking a lot and I know some people like to hear about my thoughts.  For the past few weeks I’ve been fairly stable not suffering too much from dizzy spells or severe blood pressure changes, my appetite has recently started improving greatly and as a result I’m eating properly and feeling much better.  This improvement coincides with the growing feeling of restlessness and dislike for the hospital environment, I do however spend most of my day chatting and having fun with staff and friends around the hospital.  I’ve been spending a lot of time with a few lads who will be leaving soon, Ryan, Simon, Charlie and Phill to name a few who are all a really good laugh.  Me and Ryan went to the social club to watch a football game, which turned out to be an adventure as at some stages I was unable to turn right because of sloping to my left, and occasionally needed to do a zoolander type 300 plus degree turn to the left in order to go right (that was a film reference).  We talked about how our experiences enabled us to glimpse with an original perspective at the extent of the hole that someone leaves in other people’s lives when they go unexpectedly.  It is also this type of exposure to your loved ones suffering that spurs you on to not give up when things get tough.

My feelings of restlessness within the hospital and need to escape are signs of improving health, I’m focusing more on routines to make me comfortable and finding ways of streamlining tasks and getting the most productive and efficient use of people around me.  A very selfish but necessary pursuit.

I am in the process of arranging my own care, I’m going to have 24-hour personal assistants and have decided to try to minimise the use of agencies in order to maximise flexibility of my care, this is very time-consuming as I am effectively an employer and have the associated administration overheads.  I have found someone who is very suitable to work Monday through Thursday, but am having trouble finding someone to work Thursday night through to Monday morning.  I may have to go through a care agency if I can’t find one myself, which is not the end of the world, although I know how exploitative some care agencies are.  It’s interesting to see how many proactive disabled people in similar situations there are from the adverts on the Internet, I was amazed at how much some people will pay (I saw 24-hour shifts paid at £146, most of this time would be on call time).

This is such an important aspect of my life and it’s very interesting trying to mould in my head and imagine the type of relationships I want with my personal assistants. 

The work aspect is promising but requires me to be discharged to proceed much further, so still waiting on this.

The pavilion and extension work has gone to tender so hopefully and eventually the construction work can start.  Many thanks to everyone who made that possible, Peter and David for their work on planning and everything else.

My weeks are getting busy and even if the days are empty I seem to have no spare time because all time seems to be consumed, and the only time wasted is that spent in regret.  Spending lots of time with dad helped me feel more productive and we got things planned and some executed.  I enjoy a very strong relationship with my dad now and I think we both greatly benefit from it.  Last weekend I was in Winchester and went to Ellen’s aunt’s birthday party in a very nice country hotel, and it was a really nice evening I enjoyed speaking to members of Ellen’s family.  Everyone was very accommodating to me but not in a way that made me feel uncomfortable and I managed not to dent too much antique furniture with my wheelchair which was a great success.

I am enjoying, and learning to make use of, the independence offered by my new wheelchair.  You get used to this independence very quickly as you can imagine and soon enough you are frustrated by new things which you need other people to do for you, so there is a perpetual search for methods of performing small tasks independently, while not taking too many risks.  This is however the time to be experimenting, while I am still in hospital.  I find my head quite clear at the moment, probably because of basic things like good sleep and lots of food, but also find myself very fortunate in the fact that I don’t have to take too many drugs that inhibit my mental processes.  Although I’m not taxing my brain as much as I would be working, which I would like to be, I am developing lots of peripheral skills to do with description, visualisation, memory, management, communication skills, organisational skills (which I needed to improve anyway) just by thinking about all processes related to my rehab and discharge.  I feel I am now a lot more assertive, precise and direct but well mannered, self focused (but I wouldn’t say selfish) and organised (mentally) and think in a much more structured way.  I need all of these characteristics to live productively and generally make more effort with everyone I meet slightly selfishly because I may need their help at some point, and so minimising the number of people who dislike me is a necessity.  It may seem like I have become a shallow person, but this is not the case, I appreciate everyone who is dear to me more than ever, but to survive and achieve ambitious goals I need to reach out and grab otherwise people who are not dear to me will not be in a position to assist.

Until next time…

there will be an answer, let it be2

29th of February 2008

Since Tom’s arrival at Stoke Mandeville Hospital in early April and transfer from Critical Care to the Spinal Injuries Centre at the end of that month, Tom has been under the care of Dr Alison Graham and her team. Much of the day to day contact was with Senior Registrar Dr Raj Singhal. Raj – who first heard about Tom on April 3rd 2007, within hours of the accident – always made himself available when care was needed, He took great pains, and never appeared rushed, when explaining what he thought was happening to Tom, Ellen and the family. He described some of the dilemmas with care and indicated the rationale for clinical decisions as well as working closely with nursing and therapeutic staff. He joined the surgical team that performed the marathon operation to repair the neck fixations in August 2007.

Raj was due to leave the Centre at the end of February to take up a Consultant position in New Zealand. Tom told our friend Peter Leisinger (a Swiss doctor, painter and wood sculptor living in Malans, near Davos) that he wanted to give Raj one of Peter’s paintings. Peter chose an aquarelle of Box Hill and sent it from Malans to his daughter Claudia in London. Claudia had the painting framed in London and then brought it to the Centre with her fiencee Leigh on February 24th. Tom then gave the framed painting to Raj on his last day (February 29th) as a reflection of his gratitude for all that Raj did for him during the ten month period since the accident.

29 February 2008 Tom and Dr Raj Singhal

29th February: Dinner: Tom, Ellen, Laura, David

29th February 2008: Dinner: Tom, Ellen, Laura, David

1st March: Standlake: Tom, Ellen with Michael and David

1st March 2008: Standlake: Tom, Ellen, Michael, David