Spring developments

Hope everyone is well and enjoying the sunshine as much as we are (Ellen and I).

Very sad to hear that Stephen Hawkings is in hospital, we are always very grateful for his generosity and enabling us to use his vehicle from such an early time after the accident, an invaluable benefit in moving forward quickly. I hope Stephen is back flying around the world soon.

I’m very proud of dad and his work on the pandemics, I’m sure the world would be in a much worse state if it had not been for his and his support teams work over the past few years in preparing for such an outbreak. I guess no one will ever know the measure of the success he has achieved, thankfully. He’s obviously extremely busy working behind the scenes and preventing a catastrophe as we speak, but then not much changes.

Since Scotland, been extremely busy with work, had a work review last week (two reviews a year, next one in October which is the end of year review). Extremely positive feedback about the work I have been doing, a permanent contract in June is looking likely. Some difficult decisions in choosing which project to do next (the choice affects my flexibility in terms of working from home occasionally, a privilege I would like to keep if possible), as my current project is scheduled to finish over the summer. Can’t decide whether to work in an area I’ve acquired some experience in and enjoy (networking) or to branch out to unknown territory (telecoms technology development). Fortunately my manager is very good at offering his valued advice and will help me to make the decision. I will be starting to work three days a week, possibly with one day from home. I’m still looking at options of staying down in Southampton one or two nights a week.

Thanks to some very generous fundraising at the gaelic fundraising event in Witney for the pavilion and exuberant trusts, we are looking to buy some blinds for the pavilion. This will really top it off and is getting to be needed as the summer draws closer.

The new wheelchair has finally arrived (a couple of pictures on Flickr account =>), after taking nearly 5 months. As expected it is a full on lifestyle change, affecting every thing I do physically (besides eating, speaking and breathing). I can be elevated to eye level which is one of the most beneficial changes, I can be stood up with limited assistance and the chair is more stable over bumpy ground (and faster ;)). There are obviously things that need to be fixed, the chair has a built-in computer for controlling the environment which unfortunately is very complicated and high maintenance so requires a lot of time and effort (and money if I call out the engineers, although I’m hoping to be able to hack it myself and do the programming). Controlling my home cinema setup and access to my media from my wheelchair without having to have a laptop with me all the time is my new hobby.

The control system (extremely new, only just released) is a proximity switch (sensor doesn’t require physical contact, only physical proximity), takes a great deal of practice because it is so sensitive and there’s no way of changing the sensitivity without calling out an engineer, so I’m trying to learn to be very sensitive with it.

Stability in the chair is the main issue, because of the lack of muscle, below my shoulders, compared to the majority of the people the chair is aimed at (people with at least some arm movement who mainly use joysticks). I share similar problems but different solutions to the majority of people with my physical limitations, the majority of which use some sort of chin control joystick rather than a head control. Everyone who uses their head (physically) to control the movement of their wheelchair is very sensitive to lean and sideways tilt, even the camber of a road, so to bumble around the garden a bit more successfully I may need a chest strap, something I’ve previously avoided (the majority of people encountering this problem strap themselves up on the upper body, something I found not very appealing). Other problems arise due to the complexity of the system’s moving parts, a lot of thought has been going to have to stand safely and not inflict damage without noticing, all the little systems I’ve become used to in the old wheelchair now have to change (although crude, the previous chair was very simple to adjust-analogous to someone buying a new car, with all its blackbox magic, after having an old car with discreet and replaceable/fixable components).
Constantly trying to find new ways to reduce the discomfort of not be able to reduce pressure efficiently (as every wheelchair user does).

I am very excited about the challenges and flexibility the new wheelchair will afford me. I’m very grateful to access to work for helping with the finance, an extremely efficient government initiative.

Having great luck with PAs, the active assistance agency really putting in work, Vicci and Rachel are great friends and consistently help me out, and hopefully Jamie and  Janina in the future with their uplifting attitudes to life. Without experienced and compatible carers, all of my time is spent managing my care and none of it living my life. Unfortunately Rachel is leaving soon, which will be a great pity but she has to join her soulmate in another land, and her visa runs out. Ellen and I will miss her so much but value everything she’s done for us.

Have been scheduling lots of live music to go out to (something I’ve never done enough of) been to see doves yesterday and have:
Rob da bank tour with ebony bones and passion pits, the kooks and the killers at Hyde Park, supergrass and Pearl Jam (I’m so excited). Plus paleo Festival with a very impressive lineup, I’m looking forward immensely to spending time with dad, Gillian and Lucas and Joseph. Also have a trip lined up to the south of France our friends wedding in August.

Ellen is very busy with work, having designed high school musical 2 which was a great success, designing a friend’s wedding and now a new play up in Manchester. A previous schoolmate of Ellen’s, and good friend of ours, Tom Draper and his father John got me a 4 foot, Draper tools, aluminium ramp which is perfect for getting in and out of houses and up and down three or four steps. Such a useful device offering much more flexibility.

Flexibility is still an issue in life, spontaneous meetings with friends/parties/nights out/flings (only joking), are no longer a possibility for me and everything has to be planned otherwise things go wrong. The number of peripheral tasks required and time spent on issues regarding health care and PAs means that although I’m constantly surrounded by amazing people I don’t necessarily get to spend enough time with friends and family. This is a strange sort of isolation and I’m so incredibly lucky to be able to spend so much time with someone so incredible and who understands me as well as Ellen does, but the lack of spontaneous normal relationships with friends sometimes does leave me feeling a measure of loneliness. I do still get to see my amazing friends and have been catching up with a lot of old friends recently. I’m looking forward to a barbecue with friends this Sunday and spending more time with brothers and sisters over the summer (Oliver is coming back from Australia and Polly has just returned from travelling).

Feeling very grateful for everything that has been given to me, including the support of everyone which enables me to live such a privileged life while being so physically limited.

Love and best wishes to all.

2 thoughts on “Spring developments”

  1. New chair looks awesome & great to hear about the positive work review. Back on the 28th – see you then. O

  2. tom I havent visited the site for a while, so very pleased to catch up with yours and Ellens full lives.

    glad about the job and the future prospects. thank you for explaining the intricacies of state of the art wheel chair navigation.

    maybe the spontaneity of life is something that happens in youth, your thoughts on this found an echo in me.

    hope the barbeque was fun.

    nice words keep them coming Simon

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