Charlotte’s letter (3/3 posts today)

The wonderful Charlotte, a good friend and previous exceptional aupair of Lucas and Josephine would like to share this letter with everyone. Although it is slightly embarrassing I will have to obey her wishes. Thank you Charlotte.

on a side note, congratulations to dad for his promotion.

Love Pizza and The Soul of a Family

 

 

This year I have had the pleasure of working with the Nabarro family in Switzerland.  After speaking with Gillian over the phone for the first time last July I knew 3 things:
1 That David is kind of a big deal (which I already knew from University)\
2 That Tom was in a wheel chair after a snowboarding accident
And
3 The ages and interests of Josie and Lucas
….in that order, which was a little confusing because I was going to be Josie and Lucas’s Au Pair.  It was not until I got to know the family a little better that I understood why that was the case.  All year I have heard about Tom, how cool he is, how much fun they had when Tom was living in Switzerland, and I learned how deeply his accident has affected the daily life of the Nabarro’s.

 

I have seen the basement change from a dank grey room into a wheelchair accessible mini paradise with the BIGGEST flat screen TV I have ever seen.  The transformation process was an interesting one for me because the workers would be coming in and out all day, asking me all kinds of questions in French and sometimes Portugese.  It taught me how speak a little more French, but the Portugese usually left me in a frenzy of confusion.  But in the end it was the only room in the house that rivals the view from the top floor.

 

At first everyone was talking about Tom coming for Christmas, but the winter was too hard for Tom to travel for so everyone went to England.  Then he was coming for Easter, and that didn’t happen either.  Tom finally arrived for the PALEO Festival in Nyon, in the early hours of July 19th.  This was also my last full week in the Nabarro household.

 

Before I had even met him I had decided that he was probably a really cool guy, and that he was the soul of the Nabarro family.  The minute I met him I knew that these two opinions were very true.  Our introduction was no different from anyone else except the part where you shake hands of course.  Feeling slightly unsure of myself, and the situation I stepped back and watched everyone else interact for a while.  Some time around dinner that first evening Tom asked me a question and with a nod and a wink I knew we were on the same page and any nervousness I had went away.

 

Over the course of the week I got to know Tom and the entourage he “Rolls” with.  Tom’s girlfriend Ellen is a beautiful soul, with a lot of passion for life and fun.  Raj, Tom’s best friend a one man Circus would have me in fits of laughter one minute and eating up all of his sweet words the next.  Jamie and Vicci are phenomenal at their jobs and at having a rockin’ good time. 

 

The whole group was welcoming and really happy to have me as a part of the crew every night at PALEO.  We danced, we drank and listened to some really great music (not necessarily in that order).  Not one night did we come home until 4am, and on Thursday night (Friday morning) were watched the sunrise over Lake Geneva as we drove home.  The whole festival was one of the best times I have had anywhere in Europe this year.

 

On Friday evening Raj asked me a question and I think that my response surprised him a little.  He said, “I was just thinking how would all of this be different if Tom could use his legs?Â  Having not known Tom before his accident, as Raj has, I could see that this was something Raj was probably thinking about a lot this week.  But my honest first response was “Well we would all be here together, having a really awesome time, only there would be less space.”The one thing I noticed that Tom’s “Voiture” (as it was known after a certain point in the evening when everyone was brave enough to try and use their French) gives him and everyone in a 2-4 meter vicinity a lot of space.  For me a person that doesn’t really like people in her personal space, but loves to dance things couldn’t have been better. 

 

This space that Tom has is interesting in another way.  During the first few evenings Raj had brought the BIGGEST Irish flag I had ever seen in my life and was waving it around.  The flag created more space, and it attracted so many different kinds of people.  We couldn’t move 10 feet without people stopping to talk to us. 

 

As the first few nights wore on I noticed that everything surrounding Tom was like a show, only it was totally unscripted.  Everyone was dancing within Tom’s line of sight but not directly in front. At one point (during a fuzzier late part of one of the evenings) there was something going on involving dancing, eating, the flag lying on the ground next to a curb and some garbage cans.  Tom was on the pavement while everyone else was “performing” on the grass, and a small crowd formed behind him to watch whatever it was that we were doing that was so funny.  I only hope that Tom had as much fun watching us in that moment as the rest of us had creating it because though a little fuzzy it was a moment I will never forget.

 

On Tom’s last day everyone was a really tired, emotions were heightened, and some nerves were a little frayed.  It was then that he suggested that we make pizza for dinner.  Everyone went shopping for the supplies, while I took Josie to her scuba diving lesson.  When Josie and I returned to the house we walked in on a much more relaxed Nabarro family.  Jamie and Lucas were making pizza dough.  Raj, Vikki and Gillian were having a conversation at the dining room table.  Ellen and David were organizing something with the oven.  And Tom was directing the whole process.

 

There was an energy of complete and total LOVE in the house.  It will forever be one of the most powerful changes of energy I have ever experienced.  There was so much LOVE and solidarity in the room.  Everyone had gone from individuals a few hours earlier to a collective working towards a common goal.  I love Pizza and that pizza was the best pizza I have ever had in my life.  From that day forward I will never forget the affect that the soul has on a family, and how good something that is made purely out of love can taste.

 

SIA magazine (Forward) article (2/3 posts today)

Back to work

 

Getting back to work after a spinal injury is never going to be easy.  There are hurdles to pass, of a variety of different sizes.  Thankfully the rewards are great and the expectations of others are small because people tend to appreciate the effort and willpower needed to make this step.

 

Before my snowboarding accident I was gearing up to taking my finals in electronic and microelectronic engineering (bachelors) at Brunel University, I had just completed my dissertation on my final year project, and had successfully negotiated a contract with Roke Manor Research Ltd starting in October 2007 (my accident was in April 2007).

 

After my accident the administration board and lecturers at Brunel University discussed the possibility of granting me my degree based on past performance, expected exam performance and dissertation results. After much deliberation they granted me a first and I attended my graduation in July 2007 whilst still in hospital.

 

I am lucky (never fails to seem a bit ludicrous saying that) in that I had a software related job offer prior to being injured.  Transitioning from being a hardware electronics engineer with some understanding of software, to a software engineer with an understanding of Electronics was fairly straightforward.

 

After 15 months in hospital I was able to take up a position at Roke, the contract negotiation was not straightforward however, I required help from the human resources manager at Roke who performed much of the negotiation with hiring managers on my behalf. I was regularly in touch and updated Roke with my progress, undertaking small software projects whilst in hospital to keep my brain active and attempting to continue with my studies. I underwent further assessment and interviews at Roke whilst at hospital and was persuasive about my improving productivity levels due to utilising voice recognition software.

 

There was a long discussion with access to work, including an on-site interview with access to work and a human resources manager from Roke. Building modifications and workplace adaptations were discussed. In the end only the workplace adaptations were made, including adjustable height desk, voice regulation software, bluetooth earpiece and wireless microphone. Access to work have also helped me purchase a Permobil C400 wheelchair which allows me to stand at work enabling me all the associated benefits of standing during my working week (I would not have time to use a standing frame otherwise).

 

After a seemingly long negotiation period I was offered a temporary three-month contract as a probationary offer so that all parties involved could gauge the suitability of the employment. It involved a two day a week commute down to Southampton from Oxford in my adapted vehicle which had the potential of being very physically taxing if my health was not good.

 

Since then I have had a six-month contract extension and recently a permanent three-day week part-time contract. This contract took a while to work through the books as it is a non-standard contract type. I work two days a week in the office and one day a week from home.

 

At work I have had success as the technical team lead for a small but complex project, it has taken some time for people to get used to working with someone who has such a high level of disability. Mainly people are concerned with offending disabled people with even subtle actions and decisions, but the majority of the time the disabled person understands the good intent and is not offended. After the understanding of this, people can start to treat the disabled person in a manner similar to any able-bodied person but with obvious consideration as to timings and physical logistics. I do not expect to be given extra allowances in terms of productivity otherwise I would not be a fair candidate for the job.

 

My C4-C5 complete spinal cord injury has left me paralysed from below the shoulders (no arm movement), I have chosen to rely fully on voice recognition software to control an assortment of laptops. I use Dragon NaturallySpeaking 10 and a Plantronics wireless earpiece to control each laptop. I have two laptops with two wireless earpieces working at the same time. I have written a script* to enable custom commands so I can switch between operating each laptop with both microphones active. I also use scripts to perform monotonous tasks to help improve productivity.

 

Getting back to work has been a crucial part of my rehabilitation and has allowed me to retain a good standard of living within a relatively short period (2 years) after my accident. Financially it allows me to travel and lead a more dynamic lifestyle than I would otherwise. Having said that there could be more government incentive offered to make returning to work a more financially viable option (the reduction in benefits resulting from returning to work is often not met by a starting salary).

 

I live with my girlfriend in a house extension built onto my grandad’s house in a small village in Oxfordshire. Outside of work I am a huge music and film fan, my girlfriend and I enjoy watching films home and at the cinema as well as going to gigs and music festivals home and abroad. I’ve always loved travelling and will try to continue as best I can, even if getting on a plane is a little bit more difficult now. My father has just recently adapted his house near Geneva so I would like to spend more time there with his side of the family. I go out to local towns, Oxford and London to pubs and the occasional club and like watching live football (Spurs fan).

 

I still love snowboarding, even if it’s just watching.

 

*I use a piece of open source software called Natlink to integrate Python (a programming language) scripts into the voice recognition software (this is a cheaper alternative to purchasing the “professional” version of Dragon ~£500, I have the “preferred” version ~£100).

Sensation

This is the first of three posts in one day, an unprecedented feat on my behalf (although the third post will be a letter from someone rather than my own writing).

I would just like to share a thought I was experiencing when being massaged earlier, it was how to describe the feeling, or absence of paralysis to someone. In my case I have complete feeling from my head down to just above my nipples on my torso and middle of biceps on my arms, on my arms I can feel light/vague/non-specific sensation on patches of the top of my upper and lower arms (not symmetrical).
When I close my eyes and I’m being massaged, it is as though my sensation can be thought of as looking down a well into darkness, where my head is the top of the well and everything else is below. What you can see down a well is analogous to what I can feel on my body, past a certain point down the well is complete darkness, similar to the “darkness” or lack of sensation past a certain point down my body. Past that point down the well, everything else is unknown, similar to the unknown state of my body past the last point of sensation.

This is not the only “feeling” that I have in my body, I have non-specific/referred internal sensations that are unreliable and do not directly reflect the environment or geography of my skin and limbs respectively. These can be analogous to the sound heard when a pebble is dropped down a well, although the stimuli of the pebble on the well cannot be “seen” it can still be sensed through sound. Although in this analogy the senses described are different, the similarity is that the stimuli can still be detected/interpreted through peripheral sensation. The sound of the pebble will not necessarily relate the location of its impact or the effect on the environment of the impact, but the event of the impact will still be related through a type of sensation.

I hope someone will find this observation interesting.

Tom

the elephant family

Ellen’s elephant has arrived (one metre 50 white cartoon elephant which she is going to paint and design on) it is for an elephant charity called “the elephant family” and will be displayed somewhere in London soon alongside others designed by her famous but inferior contemporaries (I may be slightly biased).

The charity aims to buy land to stop development on migratory path of the endangered African elephant.

skiing and painted elephants

Dealing with some health issues over the last few weeks, only small and hopefully should pass on soon.
Dads 60th birthday party went swimmingly well with help from some great people helping and very special guests. Dad really enjoyed himself whilst taking a short break from saving the world.
The beloved Stephen Hawking Chrysler Voyager (Audrey the aubergine) has been a bit sick and has a refurbished gearbox, and a new vehicle is being ordered for the New Year, hopefully the Chrysler will last until then.
I went on a ski taster session at Bracknell dry ski slope to try out a ski cart for a potential trip to Sweden in January. Photos on Flickr account (accessible via this blog or Facebook now). The ski cart was a bit slow on the dry ski slope, although I can’t steer it at the moment, hopefully I will be able to in Sweden via some primitive mechanics.
Work has been going well, still on the same project which is overrunning but has great potential. Have avoided the redundancies at work due to being a graduate (and hence gaining immunity from redundancy). A good friend was unfortunately made redundant. Going to stay down in Southampton this week for an all week C++ programming course. Testing out the Holiday Inn disabled facilities, and thankfully they give a free carers room.
Ellen has a project in London to paint a fibreglass elephant which will be publicly displayed for charity (more details to follow).
Looking forward to the backup charity ball (backup trust charity) which promises to be a crazy night up in Birmingham, we are staying at the Hilton for two nights which sounds very luxurious. Gangsters and molls theme so I’m looking for a pinstriped suit.
Very excited by the prospect of John’s (Ellen’s dad) house adaptions up in Dumfries, Scotland. Which are looking great, it will be a great wheelchair accessible holiday venue when we are not using it.
Hope everyone is well, best wishes and love from us x