A new beginning

Unfortunately, this is Tom writing after an absence of a few weeks and some great experiences, with some bad as well as good news.

Since my last post, where I was pleased about being able to communicate on a computer, I had some good times where I was stable and could think for extended periods of time without worrying about my health, and therefore was able to plan and think of the future creatively.  This was a welcome sense of normality, enabling me to prioritise and get back in touch with people, and plan my days in chunks of hours days and weeks rather than seconds minutes and hours.  I took some time to learn about subjects related to my injury through patient lectures including issues such as pain management and the spinal cord, although my biology and physiology knowledge is very basic.

I have enjoyed so many good visits from so many great people, all unbelievably understanding, generous and caring.  Friends from Switzerland, including the Leisingers (possibly the most amenable and welcoming people I have ever met, thank you Maria for the music by Denner?, I really love the first few tracks they have been playing every morning for the past week), Thomas Ernst, Sean visited from Malta and gave me a beautiful present which means a lot as well as attending the festival with me, my brother, my father, ellen, colin, Mr Lalani, dan, cousin Nat, tom, Fred, Philippe, Max and Sherin. I saw Josephine and Lucas with my dad and Gillian, which was amazing, as I hadn’t seen them for a while.  They made me smile lots and asked some surprisingly astute questions, I wish them lots of love, hope to see you again soon guys.

I think that it is hard for my very close friends, with whom I have spent a lot of time with prior to my accident, and know me very well, to maintain the same relationship with me.  I’m very grateful to all of them for trying to do this, it has meant a great deal to me and makes things seem more normal, which is a great help when everything else is upside down.  I would like to thank all my Oxford mates (incl. Fred, Tom and Anthony), university and London friends especially Raj and Laura for coming and taking the Mickey occasionally, and my brother, sister,ellen, and parents for all the support.

The festival was a big highlight, it gave me confidence to see people being so friendly and having such a good time.  There is also an aspect of it which brought some things home including the fact that I was unable to dance too much, but this is just a small obstacle to overcome.  Another beneficial factor of the festival was its ability to allow me some small endorphin releases of which I crave and cannot get due to my inability to exercise, these were achieved by headbanging to repetitive clever engulfing music by some of my favourite produces and DJs.

I visited the Oxford wheelchair service in Headington, Oxford, where I was enlightened in terms of knowledge of assistive technology to aid my mobility.  I learnt about fully automated cars, with automatic locking, opening, ramps, wheelchair stabilisation and steering possible through chin control or head control.  I also learnt about different types of wheelchair, I was particularly concerned about their ability to perform off road, including caterpillar track wheelchairs and Rolls-Royce equivalent type wheelchairs.  We discussed environmental controls, including the control of lights TVs and radios to mention a few devices, and I was comparing the potential reliability of computer system based environmental controls (of which I saw when working at Intel) and dedicated environmental controls (seen there).  I imagined the potential of a computer system based on Intel environmental control being installed within the Pavilion.

Now I’m afraid it’s the bad news, for the past few weeks I’ve been experiencing severe back and neck pain, I assumed this was mainly to do with muscles relearning and effective physio but after a while I was able to discern different types of pain within my neck and realised that the pattern of pain differed for different types.  While primitive painkillers were just about doing the job, I pushed for further scans to make sure there was nothing going amiss, and between the sixth and the eleventh of July, the titanium plate in my neck became loose due to an unwound screw, as shown by the CT scan yesterday.

The doctor that I trust explained the need for an operation as the situation was unstable this operation involves replacing the titanium plate and correcting the spine alignment.  Unfortunately this means a six-hour operation, potential artificial respiration and a trip back to ITU (intensive care), as well as more drugs and concern for those close by.  As I’ve done this before, we hope that the trip back to rehab will be faster this time.
The operation will hopefully be scheduled for some time next week.

Some of you smart readers will have noticed that the plate slipped around the time of the festival, I would just like to say that I don’t regret this at all as it was bound to happen and I see this as simply an accelerated test. 

As for now, I have to wear a brace which is proving a right pain, but can attend my graduation on Wednesday.  Anyway I have to go, I’m getting a prize 🙂

I hope some of you might be still reading this, thanks to everyone who visits, writes posts, telephones or just reads these messages and sends their best over the ether.  Thank you for your support and keep your fingers crossed for round number two.

I hope everyone is well and enjoying their summer
all my love
tom and Ellen (is absent and eating dinner).

20 thoughts on “A new beginning”

  1. i’m sry ya have to go thru this again but as u say, was bound to happen. congrats on receiving a prize!! sounds like ur startin to get urself sorted with being more independent. thats wonderful 😀 was gd seein ya at antiworld and i wish u all the best for ur oncoming surgery,
    Dan

  2. tommo tommo. me sheps and possibly fred and chobey are coming tomorrow. probably afternoon cos you have stuff to do up until 3-4pm right? Milan was the shee-dizzle, but i have been violated by mosquitos. evil beasties. 10 bites on the back of my right hand alone! Ten F*&%$£& itchy pimples aagh! Im off to hawk some antihistamine. see you tomorrowcrow. ol. x

  3. Yes we’re still reading this. Glad you enjoyed your head banging. Perhaps crowd surfing would get the endorphines
    flowing next time ;-). Good luck with your graduation, hope its a great day. Hope all goes well with the surgery.
    Love, your cousin Zoe x

  4. Hi Tom,
    Do you still have Nicole’s amazing tube connected to the backpack full of water?
    Is that going to last?!
    I am so very glad you are going to get to your graduation ceremony and to feel
    all the positive vibes and that the powers that be are going to wait until afterwards!
    Keep taking those painkillers, zooming around
    the hospital and TALKING.
    much love, Barbara

  5. HI Tom,

    It was lovely to see you last week and i hope that the ‘camel back’ heath robinson self drinkin system Irigged up is proving useful and still working?!
    Its SUCH bad luck that you have a screw loose….but I know you are a fighter and when it is fixed that pain will be gone..:)

    Have a fantastic day at graduation tomorrow…. You deserve your prize..

    Sending a big hug…
    Nicole x

  6. Hey Tom,

    Haven’t posted in a while but I have been reading. Its good to hear you’ll be at graduation – I look forward to catching up with you mate.

    Lao

  7. Tom
    Have a wonderful day at graduation. I will certainly be raising a glass to celebrate your achievement.
    I am really sorry your visit here is to be delayed. (the ramp up the side of the house and one up to the garden are now ready)
    I hope to see you very soon
    John
    (get Ellen to give you a big hug from me)

  8. Thank-you Tom for all your news. Not only do you have a “First” etc. but you also write extremely well. Your love,kindness and concern for all your family, friends and loved ones means so very much to us all. The photos and news bulletins are a joy to us all. The Panama hat (très chic) suits you well. The photos are a great success considering the number of times they are viewed !Please, please can we (your well-wishers) have a video on your graduation and a speech if this is not already in the pipeline !Do you know about the Benedictine monks philosophy on life ? One third of the day is spent in manual activity, one third of the day in intellectual activity and one third of the day in spiritual contemplation and prayer. Don’t they ever go to sleep ?
    love Marie

  9. Dear Tom
    Congatulation on your first and so sorry to hear about your bad news. We will all think of you and wish for all the very best. Bhutti is coming over from Switzerland tomorrow till Monday. We were wondering if you would have time for a quick visit from us over these next days? I could bring you a bunch of Leigh’s DVDs if you fancy.

    lots of love

    claudia

  10. Dear Tom,

    It’s really great to hear from you. Enjoy your graduation day to the utmost with your family and friends. We all look forward to seeing photos on the website! So sorry to hear about the upcoming operation; we will all be thinking of you and wish you the very best. love, Mary Lyn

  11. Hey Tom, sorry to hear about the operation however I am not concerned this time as i know you will bounce back at twice the rate. You’ve learnt the technique for good recovery, now you can master it – this appears to be the way you approach most things in life, learn the technique then master it, I don’t see why this should be any different.
    I’m glad you had fun at the festival, which I’d known about it – Debs and I would have been there headbanging with you. Enjoy the graduation dude, make the most of it as it is a great occasion and doesn’t come round often. You’ve worked damn hard at university and deserve any prize that’s on offer.

    Carry on being a legend Tom, i’ll be thinking of you as always. Love to Ellen and the family.

  12. Hey Tom,
    grand to hear that you had a wonderful time at the festival the pictures are fantastic, nice timing to choose one of the rare sunny days. well done being so stoical about your setback, and for your part in identifying the problem..so hope the operation is a 100% success and you bounce back in double quick time
    lots of love
    Hugh & Hoonie

  13. Dear Tom, thinking of you and sending lots of positive vibes for your op. It seems you managed to catch the only sunny festival thus far…. I am looking at my tent and sleeping mat in preparation for WOMAD next weekend, and its dawning on me that I am a fair weather camper – I suspect I will retreat to somewhere warm and dry if it all gets too much. Lots of love, Claudia xx

  14. Hi Tom,

    really good to see your recovery is going well. Can’t believe you made it to the Antiwolrd festival, major respect! Its great to see all the photos on the site and the amount of people wishing you well. The plan for the place at your grandfather’s with the Pavillion sounds nice, will definetly be making a contribution. Also, many congratulations on the Uni result! I’m well up for coming to visit, so I’ll speak Antony and Shepard about it, I think Dali wants to come to see you aswell. Shame about the setback but I’m sure it will be fine. Anyway, best of luck with the op. and stay positive.

    Sam

  15. Thank you Tom for sharing all your news with us. It is really good to know how you are doing in such detail, but also concerning, I suppose because you have a big operation coming up which will be another test to the limits. Her’s wishing you all the very best for a quick recovery and freedom from pain. I shall be thinking of you.
    With love Zanna

  16. hi Tom! Do you remember me? I was working in the Bar Brigida last year in Levanto;) And i’m again in the same place this year. Anyway i met Isaac yesterday at bar Nadia and he gave me the website adres. I just wanted to say hello to you and Elen and that i think about you really often. It’s nice to read your posts. I whish you a lot of positive energy!
    Have to finish now.. the “aperitivo time” will start soon, have to go back to work.
    Big Hug
    Aggie

  17. Happy Birthday Tom. Michael FitzSimons here, surrounded by my family celebrating Luke’s 36th birthday and remembering that yours is around the same time. I would write in reflection about all mischievious things we did while you were visting out here several years back but probably not worthwhile seeing that both our mothers are breathing down our necks. Anyhow, I hope all is going well for you, I have been meaning to write you to tell you how proud I am to know someone who has shown the type of strength of character you have shown over the past year. I have been keeping up with your blog and it really comes as little surprise to me that you have so many people around the world who care about you. I remember thinking to myself years back that you were the type of person blessed with that touch of magic who was put on this planet to change the world, and although life’s maze will often divert us from our expected paths, I still think that you are here for that reason. Say hi to your Mum, Oliver and Polly for me, I trust I’ll be seeing you in California soon some day- I wouldnt be the least bit surprised if we take the same stroll we took that one starry night, if anyone can change our worldly expectations, its you. Keep the good news coming my friend. Much love and respect from across the pond.

  18. Dear Tom, Although we haven’t been very good correspondents, you are always on
    our minds. It seems we had a dual birthday celebration for you and Luke just a few
    years back. Luke and Michael’s dad, John keeps me up to date with copies of your
    blog while my computer is on the blink. So great to hear how well you did with your
    studies. Michael and Robyn have their hands full keeping ahead of young Averie who
    is now 18 months old and enjoying her first week of pre-school. Luke and Missy are
    expecting in late October but they are not interested in knowing if it’s a boy or a girl.
    Rumor is a “British” name is in the works one way or the other. This is not much of
    a letter, but we did want to wish you A HAPPY BIRTHDAY from all of us in Laguna/
    Newport Beach. I hope we’ll be able to catch up with you, Oliver, Polly and Susanna
    in the not to distant future. Lots of love from all of us to all of you.
    Keep up the great work Tom.

    Sharon Fitz

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