In response to the previous comments (thank you very much for leaving them).  Felix: Suze will be taking me to work every day I am working, Tuesdays and Wednesdays, and she will have access to the Internet and will hopefully occupy herself while I am busy.  I should imagine she will get on well with colleagues, people usually get on with her.  I only travel with one person in the car nowadays, it seems to work fine that way.  Shower share was a mistake, I meant to write shower chair.  Pat: I read using a mobile arm support (a device which takes some of the weight of my arm so I can move it across my body) to turn pages usually but at the moment I don’t have one so I am asking carers to turn the page.  Although I can read a lot of things on the computer it’s nice to read a bit of fiction from a real book now and then.

Not doing very well at writing regular posts, it is mainly laziness but I would also like to blame my being preoccupied with lots of new systems, novelties and adjustments.  I also feel that as I become busy with rebuilding a reasonably productive lifestyle I spend less time reflecting on my own feelings and interactions. This is what I feel people like hearing about because it is such a novel and interesting situation to reflect on and emotions encountered on dealing with the situation are often quite extreme.

I’m starting to encounter many new difficulties associated with pseudo-independent living on my own (Ellen spends weekdays in Cardiff at the moment designing a play called Hayfever at the Royal Welsh College of music and drama, the silver lining is that it enables us our own space in this experimental phase which allows me at least to develop my own routines and allows Ellen to focus without distractions).  Moving into a new home is never a simple matter and I am finding that doing so in such a disabled state requires even more careful consideration of everything from furniture placement to electrical wiring, lighting, storage, flooring etc.  I am now living in the new extension which is a great improvement even if it does feel a little empty at the moment, watching the pavilion construction is a joy as it looks like a fantastic structure.

Learning to live with carers is a challenge, maintaining the attitude of an employer whilst being so dependent and spending so much time with the carer is difficult.  Keeping a friendly rapport while at the same time being able to be firm and show displeasure at or correct the conduct of a carer is an awkward balance to strike.  The complication of not actually being the direct employer of the carer requires me to have an efficient form of communication through the employing agency and to be able to negotiate with the carer if my requests and the rules and regulations of the agency differ.  I’m lucky in that the whole package of care has and is working very well for me but at the same time I appreciate the limitations that it enforces.  The three-hour break that the live-in carer is entitled to means that every day I have to be at home during the handover hours or make special efforts to arrange for the carer to have extra break on another day, the strictness of this varies with the flexibility of the carer at hand.  I also have to be at home for handover days unless specially arranged.

I am content with being faced with these challenges and look forward to another which starts on Monday, my new job.  It’s an interesting scenario where I have so many things to do and yet spend so much time waiting for the seemingly small part of the day in which I can create, at least I spend a lot of time thinking.

That’s my self-centred rant for the day.  Best wishes to all.

4 thoughts on “challenges”

  1. Hey Tom

    Was great to hear your progress and that the work on your home thats been

    How is the new job going – have I read that correct that you started yesterday?
    What are you doing?

    Anyways all the best from those at Brunel
    Natalie :O)

  2. Dear Tom,
    That means you have started your job.
    Just getting your mind around the mediated employment relationships with people who are actually CARING for you is so mind boggling complicated that I expect to read that mere work is a piece of piss.
    How is it anyway?!

    And meanwhile you have all these architectural and design details to control – of a kind that most of the rest of us either never get to do or only much later on in our lives. And you have the real pleasure of watching the Pavillion rise from the grass. You will know it inside out when you start to work there.

    I’d love to see what’s going on at Standlake and how you are. But the time when I am free is your precious time with Ellen. Let me know if there’s a moment one weekend soon when you might welcome visitors.
    (Not this weekend as I didn’t get my flu jab in time…..)

    At my end of things, the year-long (but actually nearly 4 year long) intensive task of academic public service – the research assessment exercise – an ordeal for everyone concerned – ended on monday. And on monday too I read the draft concluding chapter of the tenth doctoral thesis this year. And the new Indian masters which has been my hobby was also born that day – with a group of extremely motivated and bright students.

    So at long last it’s a new era; and the first thing I want to do is to retrieve some space, leisure and sociability. The first thing to do is to make sure Eli and Ali’s wedding (!YES) goes smoothly in November. It’s rushing towards us fast! Meanwhile Kaveri is really enjoying her post-doc in Sussex. She will repeat some of the work on migration. health and family life she did earlier with Pakistani Punjabis in E. London with Indian Punjabis but she has yet to work out what British city would be best for that. Meanwhile she is really enjoying living in Brighton again – the first phase being weekends with Gordon in the 1990s – now living there for real. She loves the place.
    That’s our news.

    love to you, Ellen and the family, respect to your team!

  3. Dear Tom,
    Fantastic to hear you are in your own home now and adjusting to all that, along with setting out on a new job. Good luck, bon courage and stay well
    Maggie McK

  4. Hey Tom,

    It’s been a while. How’s the job going? Wireless security sounds pretty darn cool. I had to briefly read up on network security a few months ago – I didn’t get to apply any of it though, it was merely for reference. You must have a pretty mean wireless setup at your place. No worries about the lack of posts – I’m even worse at replying often! Anyway, I hope things are moving along nicely. Take care bro,


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