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.Â 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.Â 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.Â 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.Â I saw Josephine and Lucas with my dad and Gillian, which was amazing, as I hadn’t seen them for a while.Â 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.Â 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.Â I would like to thank all my Oxford mates (incl. Fred, Tom and Anthony),Â 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.Â 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.Â 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.Â I learnt about fully automated cars, with automatic locking, opening, ramps, wheelchair stabilisation and steering possible through chin control or head control.Â 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.Â 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).Â 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.Â 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.Â 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.Â 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.Â
As for now, I have to wear a brace which is proving a right pain, but can attend my graduation on Wednesday.Â 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.Â 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).