I haven’t written in a while, and feel like I should because I’ve been thinking a lot and I know some people like to hear about my thoughts.  For the past few weeks I’ve been fairly stable not suffering too much from dizzy spells or severe blood pressure changes, my appetite has recently started improving greatly and as a result I’m eating properly and feeling much better.  This improvement coincides with the growing feeling of restlessness and dislike for the hospital environment, I do however spend most of my day chatting and having fun with staff and friends around the hospital.  I’ve been spending a lot of time with a few lads who will be leaving soon, Ryan, Simon, Charlie and Phill to name a few who are all a really good laugh.  Me and Ryan went to the social club to watch a football game, which turned out to be an adventure as at some stages I was unable to turn right because of sloping to my left, and occasionally needed to do a zoolander type 300 plus degree turn to the left in order to go right (that was a film reference).  We talked about how our experiences enabled us to glimpse with an original perspective at the extent of the hole that someone leaves in other people’s lives when they go unexpectedly.  It is also this type of exposure to your loved ones suffering that spurs you on to not give up when things get tough.

My feelings of restlessness within the hospital and need to escape are signs of improving health, I’m focusing more on routines to make me comfortable and finding ways of streamlining tasks and getting the most productive and efficient use of people around me.  A very selfish but necessary pursuit.

I am in the process of arranging my own care, I’m going to have 24-hour personal assistants and have decided to try to minimise the use of agencies in order to maximise flexibility of my care, this is very time-consuming as I am effectively an employer and have the associated administration overheads.  I have found someone who is very suitable to work Monday through Thursday, but am having trouble finding someone to work Thursday night through to Monday morning.  I may have to go through a care agency if I can’t find one myself, which is not the end of the world, although I know how exploitative some care agencies are.  It’s interesting to see how many proactive disabled people in similar situations there are from the adverts on the Internet, I was amazed at how much some people will pay (I saw 24-hour shifts paid at £146, most of this time would be on call time).

This is such an important aspect of my life and it’s very interesting trying to mould in my head and imagine the type of relationships I want with my personal assistants. 

The work aspect is promising but requires me to be discharged to proceed much further, so still waiting on this.

The pavilion and extension work has gone to tender so hopefully and eventually the construction work can start.  Many thanks to everyone who made that possible, Peter and David for their work on planning and everything else.

My weeks are getting busy and even if the days are empty I seem to have no spare time because all time seems to be consumed, and the only time wasted is that spent in regret.  Spending lots of time with dad helped me feel more productive and we got things planned and some executed.  I enjoy a very strong relationship with my dad now and I think we both greatly benefit from it.  Last weekend I was in Winchester and went to Ellen’s aunt’s birthday party in a very nice country hotel, and it was a really nice evening I enjoyed speaking to members of Ellen’s family.  Everyone was very accommodating to me but not in a way that made me feel uncomfortable and I managed not to dent too much antique furniture with my wheelchair which was a great success.

I am enjoying, and learning to make use of, the independence offered by my new wheelchair.  You get used to this independence very quickly as you can imagine and soon enough you are frustrated by new things which you need other people to do for you, so there is a perpetual search for methods of performing small tasks independently, while not taking too many risks.  This is however the time to be experimenting, while I am still in hospital.  I find my head quite clear at the moment, probably because of basic things like good sleep and lots of food, but also find myself very fortunate in the fact that I don’t have to take too many drugs that inhibit my mental processes.  Although I’m not taxing my brain as much as I would be working, which I would like to be, I am developing lots of peripheral skills to do with description, visualisation, memory, management, communication skills, organisational skills (which I needed to improve anyway) just by thinking about all processes related to my rehab and discharge.  I feel I am now a lot more assertive, precise and direct but well mannered, self focused (but I wouldn’t say selfish) and organised (mentally) and think in a much more structured way.  I need all of these characteristics to live productively and generally make more effort with everyone I meet slightly selfishly because I may need their help at some point, and so minimising the number of people who dislike me is a necessity.  It may seem like I have become a shallow person, but this is not the case, I appreciate everyone who is dear to me more than ever, but to survive and achieve ambitious goals I need to reach out and grab otherwise people who are not dear to me will not be in a position to assist.

Until next time…

there will be an answer, let it be2

4 thoughts on “overdue”

  1. Tom
    I greatly enjoyed your last paragraph, and finding your clarity. This is a good time to move around your mind, I would hazard a guess that these experiments of yours will continue all your life. Most people never give themselves the space to do this, but you have seized your chance.
    I am glad that you do not consider yourself or this process shallow, the ability to self reflect is a sure way to then feedback and influence the next action or exchange.
    It was a challenge in translation and cultural understanding for us westerners in Dharamsala to appreciate fully the Buddhist term Virtue. The nearest approximate was Skill. The constant application of those skills and the increased sense of awareness and focus in the moment, brings the clarity you are experiencing. Can I add that in all the recent interactions with you, that clarity has touched me with your lightness and concern and I have left feeling so much the better for it.
    Thank you

  2. Thanks for the latest news and your thougths Tom.I am quite unable to compete with your superb English prose and that of Simon Rawlence.

    It’s almost Easter weekend. In England as in Germany Good Friday is a Pubic Bank holiday.In France this is not the case!

    In my childhood as a catholic there was always the traditional “Stations of the Cross” at 3pm followed by Hot Cross Buns…

    This Good Friday at 3pm I will be having an interview for a new job despite my young age!
    I am trying to prepare myself mentally and your thoughts help me.

    France has one of the lowest levels of employment for the “seniors” and is infact classed 26th for the whole of Europe!
    Only 38 % of men between 55 and 64 years old work and 35 % for women!

    Hope your out of the hospital environment for the long weekend.
    Take care

  3. Dear Tom,
    I havent left a message for a while but as ever I come back to your site and find myself extraordinarily enriched by your energy, honesty and creativity.
    Like Simon (hello Simon!) I can only say “thank you”
    Ros (Carne)

  4. Dear Tom

    Like the others here I’m grateful for your generosity in sharing your thoughts and feelings so openly. It’s something that I would find hard to do – not only because I don’t think or express myself as well as you do, but also because people of my generation are conditioned to keeping such thoughts private. I’ve been thinking about the loss of privacy that dependence on carers must entail, and that your situation means not only that you have to keep good relations with everyone whose help you may need, but also that you have to put your trust in many different people as well. I can understand how hard it is to find just the right people to help you.

    I’ve just had a long phone chat with a friend now living in the depths of Cornwall, who has had severe ME for many years and is able to do very little physically. We were at school together and were reminiscing about how lucky we were to grow up in London where we could go to museums and the theatre and have lots of opportunities to be stimulated mentally. I think that Oxford is an even better place to grow up because it has many of the benefits of London but not the disadvantages of noise and crowds and aggression and lack of fresh air.

    I hope you’re getting out and about this weekend and that it won’t be too horribly cold for you.

    Continuing good wishes


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