getting stable

3Direct e-mail for Tom is: whizz2000@hotmail.com

So, Laurafest was a great success and I’m very sore and I couldn’t attend, although I’ve been given a DVD of bits of the event by Laura which I have been enjoying watching. Rob Holden and co-raised an incredible amount of money and performed an amazing feat, I really couldn’t have imagined that scale of fundraising, a testament to all involved including the fundraising team, thank you. I have put the Widget below so that those who are unable to see the Sidebar can quickly see what has been raised. I am also going to post Rob’s report of the Ultratour and some other reports of the event (and interviews) in a new page on the blog shortly.

Since my operation I have been pumped full of antibiotics in order to stem the developments of the bone infections in my neck which caused the instability which resulted in a slip of the first plate and the need for the second operation. The pain in my neck has reduced a lot since the second operation, the infection that was mostly cleared in the operation is being reduced and my blood pressure is more stable and therefore I get dizzy and nauseous less of the time. This increase in stability allows me more time to focus on thoughts, reading, computers, guests or anything else.

last week my infection indicators went up slightly, which prompted the doctors to put me on more/different antibiotics to cover for any other bladder or chest infections, and this antibiotic caused me to lose my appetite for a few days. The other day after reviewing the infection indicators after a few days of this new antibiotic, doctors decided to stop all present antibiotics and to start on a new antibiotic. This new antibiotic is not new to the world, but it is very specific and will hopefully target the bone infection better. This stemmed from advice given by specialist microbiologists at Oxford. So today and yesterday I had been feeling much better and my appetite has come back.

I have been having visits from a psychologist, which had been nothing more than informal chat, and she believes for some strange reason that I am fairly sane. On a serious note, I am coping very well with a little help from my friends (to quote the Beatles, I have just watched “I am Sam “,which it is a brilliant film and anyone that has seen it will know the relevance) .

Yesterday I spent a lot of time with Ellen and my brother, and today I went to a pub lunch at the bell with the lovely Lauras, and then expecting a visit from Molly and family later tonight. As you can see, I’m not short of visitors and have been visited by many attractive women recently.Lucky me.

I’ve been thinking about ways to keep my mind occupied, as my life begins to regain some sort of daily structure. Much of my day is still involved in getting up, washing, eating, going to bed and other things that I need complete help with, but I’ve been able to spend more time on the computer which seems like the easiest way for me to be productive and to communicate with people. I’m on Skype occasionally if anyone is interested, my username is tom.nabarro.

I have set up a small network of computers in my room and I’m contemplating continuing work on my University project, I’ve also been asked to work with engineers in a company called Meru?? Who work on enabling people with disabilities by creating devices to perform simple tasks. This will be very interesting as I think one thing I have gained from the accident is the perspective of a disabled person (obviously). It is possibly the most useful thing to gain for an engineer working on devices for disabled people, be this controls for driving, wheelchairs, assistive technology, environmental controls, speech recognition or computer software. The reason for this is that engineers are not known for their communication skills, and the most important thing when designing for someone with specific needs is to be able to communicate effectively with them to confirm their requirements. I can help in this area, as I understand some aspects of the requirements of someone with a spinal injury, especially a tetraplegic, I may also find it easier to understand the requirements of another disabled person. These are areas that I might potentially be interested in working in the future as I think I have the potential to help a great deal of people.

I attended an employment clinic and talked to various people about returning to work and the feasibility of transport and accessibility. I would really like to be able to take up my contract with Roker Manor and work there, and I think there is a possibility of them honouring it at some stage in the future. This was a job I wanted badly, worked hard to get and it’s pretty much perfect for my skill set. I was encouraged to get in contact with them and discuss accessibility, this is one project for the future.

I am getting used to asking for help and not feeling guilty, which is a hard step. The times when I feel jealous of people doing things I would enjoy but can’t, and the times that I feel regret for what has happened are getting less and less. I am still hopefull of being able to move more muscles in my body in the future whilst accepting that for the moment the important thing is to focus on techniques to enable me to be more functional with my current physical ability.I feel lonely sometimes when alone, and feel sad that I’m not at home with my family, but the support I have allows me not to dwell on feelings of self pity. I feel that the most important tool that I use to avoid the settling of negative thoughts and feelings is the ability to focus on potential projects and plans for the future. I am lucky in that I have many interests in life, this enables me to really focus, as without genuine interest I can’t focus. This is one of the most important things I learnt at university.

I hope you are all well, and that you take care in Indonesia Dad.

Best wishes and love to all from Tom.

P. S. although Robs ultra-tour is over, donations are still possible through that site or this one, and obviously we will keep fundraising for the Pavilion trust itself directly. People can donate directly, and the Pavilion trust account details are as follows:

sort code, HSBC: 40 — 35 — 35

account number: 91392654

many thanks.

8 thoughts on “getting stable”

  1. Hey Tom,
    As always I’m glad to hear of your progress. It’s hard to believe that autumn is already upon us, the summer months went by so fast. For what ever reason I’ve got back into programming in C++ and have been brushing up for about a month or so. Surprisingly I haven’t spend much time gaming which is very unlike me, I guess after a while your attention shifts to other things – having said that I did sneak in 10mins of a great game called Phoenix Wright : Ace Attorney this morning; its a great game which requires a sharp mind more than anything else, it’s highly recommended.

    The work with Meru (Japanese? cos its sounds like it) is a really good opportunity I hope you enjoy working with them and keep us posted. I expect to see some interesting solutions. Anyway I’ve signed on to msn and it says you’re online so I’ll try and catch you there.

    All the best buddy,

    Lao

  2. Dear Tom,

    It is a great relief to hear that you are on a new antibiotic and getting stronger again. Thank you for being so open and honest about your feelings and thoughts. I am sure many of the visitors to your site have tried to put themselves in your situation and to imagine how they would feel if they were you. But not only engineers find this hard to do…

    I am so impressed with your ability to cope and stay positive. Anybody could learn from your strategies to deal with “blue” moments. And you are absolutely right, having a worthwhile project for the future is the best way to keep your mind occupied in a productive way. We all spend too much time worrying, envying others, and trying to solve the same old problems instead of creating a new and exciting future.

    All the best for a successful battle against the infection and continued improvement of your health!

    SY

  3. Dear Tom,

    I have been watching your site every day wondering how you are. This couldn’t be a better answer.

    You can use skills like yours in two kinds of way. Use them to develop technology to help other people who are disabled – for the good reasons ‘you give. Endless demand for this work; but you then make your disability the springboard for – and focus of – your life.

    Use your skills and have a regular career like anyone else. ‘Forget your disability’. That’s how my husband lived his life as a disabled person – gloriously.

    Many people don’t have skills which might transfer.

    But you do. You could actually do both, if the company using your ‘regular skills’ is sympathetic. Why not go for them both? Eventually!

    with love from us all at 36,
    Barbara

  4. Hi Tom,
    Just to say what a relief it is to ring up and hear you sounding so decisive and un-fragile this week. No fever since the weekend, appetite better (since I brought you a nacho wrap!), stamina to write a magnificent entry in your blog. Congratulations. Very good to read about the niche that you are targeting – hope you can engage a whole lot of people in this arena and move things on, as a specialist in 2 camps.

    I know you have lots of visitors this week and are watching the world whizz by, as the beginning of the university year approaches. Polly and many of her friends will soon be trying (?) to resist the multiple lures of freshers week, Ellen and her friends are going urgently into their final year, Oliver and co, new graduates looking to earn a living. Here in West Oxon, I’m back at the Health Centre much of the week now, so less free to visit you. Pavilion drawings for Standlake are with the planners for round 2.

    Lots of love from Susie, and Michael too.

  5. I was so pleased to see you and Ellen when I visited after returning from Indonrsia on Thursday 13th afternoon. You look strong again, with great colour. You seemed in much less pain and your appetite has returned. You spoke to me of your plans, of what you are learning about options for the future and told me that that you will go to Polly’s birthday party in Standlake Friday evening. And we had a great conversation about my intentions for the future and our (J, L, G and me) return to the UK. I was on a great high as I went to Oxford afterwards to see Polly, Oliver and Susie: we are all delighted at the way things have improved. Congratulations, Tom and Ellen

  6. Tom

    Thanks for such a long blog after the gap.
    I can understand that overcoming the infections must have taken a lot of energy and time.
    Wonderful that you now have turned again to mind occupation, really the most worthwhile of lifes pursuits, and as you say you have many interests and skills and the ability to see where they may provide a contribution.
    On top of your original ambitions and career path, your new direction is a bonus. You have a unique perspective and skills set that can benefit a wider constituency and give you some practical aids as well. I will try and search for Meru. In the meantime below is a weblink to a new Czech peripheral enabling non contact control of a PC recently developed by students at the Czech Technical University.

    Keep well and rocking and all love to you and Ellen.

    Have your Skype contact.
    Simon

    http://www.ict-prize.org/winners/detail.html?id=356_381&show=product&year=2006

  7. Dear Tom
    Thanks so much for all the news and sharing once again your thoughts and feelings with all of us out here who have never met you but feel concerned because we know a member of your wonderful family or simply because your blog is so inspiring. If only I could write as well as you !
    I am simply overwhelmed with the news that David and family are returning to the UK.
    There was a two page article in the Express magazine (6 sep) promoting Professor Stephen Hawking’s new book written in French “Georges et les screts de l’Univers” and photograph of him with his daughter and co-author Lucy.
    Philippe Streiff (whom I told you about in 9th august message) video clip has been viewed over 1,631 times !
    Please see You tube-video-Philippe Streiff témoigne sur le handicap. His gym equipment might give you some ideas .
    Best wishes
    marie.

  8. it’s great to hear ur getting thru the infections and all. and very importantly, more accepting of ur situation. i am finding the same troubles with my ms at the moment. happy that u have so many gd plans for the future and it sounds like ur really enthusiastic about it =) the futures bright! the futures orange 😉
    all the best from spain, Dan

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