after the marathon – back to the concrete road

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The title was my mums idea, this weekend I have been looking at the concrete foundations of the extension and trying to figure out what it’s going to be like. It’s too small for my liking but then I don’t think it would ever be big enough for my liking, I feel that because my mobility has been so greatly affected I need a lot more space to compensate. I am spending a lot of time battling with various fund managers to try to get funding for my accommodation and my care in the way that I want it. This may involve solicitors and letters to government but at least it’s keeping me busy. I’m still waiting on various equipment, referrals and news from my prospective employer, and apologies about the ITV Thames Valley story that never materialised, I am being assured that it will appear one day, I will let you know when I do. I really enjoy some of the comments I get on the website and the e-mails I get, thank you to those of you who do leave comments on the website, I really appreciate it but I don’t reply to them.

Today I have been a bit down, I seem to have either neck pain or strange neuropathic pain/sensation a lot of the time. It becomes very annoying trying to figure out what is causing the strange sensations, if it is some stimulus or if it is just sporadic and random. I think I find the hardest part of my situation is being uncomfortable or in pain and not knowing when or if I will get better, my body is broken and obviously the physical capabilities will most likely not recover. Aside from the physical aspect, sensation is all broken, at times I can’t tell if my sensations are due to damage or just malfunctioning nerves. I am so used to feeling ill for a short time and then feeling better or waiting for the effect of something toxic or physically damaging to wear off and the body to heal, it is hard to accept that the sensations I feel may not get better. Having a GP for a parent I always used to be confident in asking how long my stomach ache will go on for or what antibiotic to take for my chest infection or asking her to have a look in my ear because it hurts. There always seemed to be a solution or a finite duration of the pain, now it seems more difficult, I try to explain the pain/tingling/pins and needles but few people know what I’m talking about and sometimes no one has a solution. The most I can do is ask people to check any of the Hundred and one different things that could be making me feel ill. People tell me I should take more medication for my spasms neuropathic sensations and pain, but I would prefer some sensation to none, I can’t feel most of my body so therefore I don’t really want to dampen any sensation I do have. I believe that there are ways to reduce most of the uncomfortable sensations I have and some of the sensations are very important symptoms which I’m learning more and more about. It’s almost like my body is sending encrypted signals and can no longer perform the decryption autonomously, and therefore I have to try and figure out the causes myself. This coupled with sporadic random neuropathic sensation can be difficult to deal with let alone try to decipher, but I suppose slowly I will become more able to discern the differences and figure out what is going on.

I find it helpful to write these things down, and as Fiona, a friend from hospital said, these trials are sent to those that can manage.

I had a great weekend, spending time in the sunshine, playing board games and talking to my grandad girlfriend sister Mum and Elena (brother’s girlfriend). My grandfather’s house is such a beautiful place, I am really lucky to be able to spend time there. We had some interesting discussions, about the nature of effort, whether an effort denotes a spending of energy or just the transfer of energy to be recouped at a later date in benefits, whether you lose or in fact gain something when you make an effort? We were discussing about success and why people become so focused on success and whether people can become totally self-involved through the relentless pursuit of success. This led on to a discussion of selfishness and me voicing my opinion that human nature is to be selfish and this has to be for evolution to occur, if we are not selfish by instinct then we would not survive, it is only the conscious wilful overriding of our selfish instincts which allows us to put others before ourselves and this is the basis and human characteristic that allows for religion and society to thrive. Since we are not always conscious of the decisions we make, instinct will often make those decisions for us and therefore we will make selfish actions. We then talked about compromise and my grandfather’s idea of a virtuous compromise as opposed to a destructive compromise, where a virtuous compromise leads on to other opportunities and developments, and the idea that progress cannot be made without compromise. Thank you to Elena, Polly and Michael for this very interesting conversation.2

5 thoughts on “after the marathon – back to the concrete road”

  1. Dear Tom,
    I woke up early and reading your blog is the first thing I do on a day I am going to Brussels. We have been celebrating ten years since my husband died. One of those celebrations was an event with lectures on the legacy of his work in China – with a drinks reception and meal afterwards. Even the lecturers couldn’t keep to the point and wove stories about Gordon’s rock and roll band, his compulsive joking, his care as a mentor and teacher, his passionate feel for politics and his insistent holding onto life – even when, as happened so many times over the 28 years of his illness, he was expected to die. That was the public face. The private face had many many moments of the kind of pain you describe in your blog. Sure he was slightly less paralysed towards the end than you and had the use of his arms, but that didn’t make the pain and the nervous sensation any the less invasive or less peculiar to interpret. So many people think that if you are paralysed then you have no sensations. Yes, it is true that you can tip hot water on yourself and not realise. But it’s simply not true that you have no sensations, there is a new world of them, and the sensations as you say are ‘coded’ , some apparently random and others referred from all over the place. You may get to understand some of the patterns, and maybe even avoid some of the cause-effect relations you discover over time, but there will be others you can’t ever be scientific about and some pain that you’ll anticipate because you want to do the action that you eventually learn actually has this wierd effect.. You know as well as anyone else that you are lucky to have survived that accident and you have a new life. In many aspects of this new life you will be ‘differently enabled’ but just like everyone else. But in some respects this new life that you have will need you to learn things about life and being human that other people, and other medical professionals, have no idea of. In what you wrote when you felt ‘down’ for this blog, you were conveying unpleasant and difficult ways of being human that the rest of us can only wonder at. Perhaps that is why there are no replies yet to your blog. I am sorry if this is a rather inadequate one but I felt compelled to reply.

    I had wanted to communicate anyway because as I go about my daily work I think of you a lot.

    My daily work is completely uncivilised at present. On top of everything else (and I had imagined that the ‘eveything else would be lighter this year) I took on a public service job as part of the hundreds of academics who have allowed themselves to be the teams that assess the quality of research in their subjects for the government. The government requires this exercise. it is non-negotiable and someone has to do it. The rules have changed for this round . (They take place every 5 to 7 years. ) We now have truly enormous amounts of reading to do. Almost impossible amounts. I had thought that I would read my way back into my subject after three years of running a department but the pressure of reading and the breadth (and richness) of what has been produced and the arbitrary order in which we are required to read means that you have to become some kind of processing machine. It is dehumanising, brutalising, very very tiring and exactly the opposite of what the academic life ought to be about. I have a wonderful team of co-readers and we keep one another’s spirits up somehow.

    Today I will travel to Brussels for a week of Board meetings since I am a trustee of a food policy institute. It’s an active board rather than an advisory one. we have to keep close track of what is going on. It is all very interesting and because of the shooting prices for food worldwide, food riots and much quiet distress there is likely to be fireworks. Not that it is this institute’s fault because it has been warning about this for years. But there will be big differences of opinion about what to do now we are in this mess. Even if we can do little about it, we need to know why warnings are not heeded too. David sent me a piece about the current wave of animal disease and this also affects the price of people’s protein even if it has little to do with the argument that the competing demand for cereals for fodder has raised the price of people’s energy supplies.

    Anyway that’s enough. I must pack and go. Keep up your own energy and seize the day!
    with love from Barbara

    PS Thinking of cramped spaces, Elinor is now living very happily with her new friend Alastair on a narrow boat at Folly Bridge. What a lovely world the boat-people have and she just steps from the boat to her high tech job!

    And , yes, one of the reasons Gordon loved that shabby old house in France that you visited once is that it has huge horizontal spaces and you can get up speed. We ramped it all and you can easily get into the garden. Let’s plan for you to visit sometime. I am returning from Brussels via that house next weekend to sort out the leaky pipes and the new kitchen work surface – we have been camping there for 35 years. It is difficult to do by remote control.

    Now I really must stop!

  2. PPS
    I disagree with you about selfishness. i don’t think that the cross cultural and historical evidence suggests human nature is selfish. Selfish plus a lot of unselfishness – perhaps – at a stretch. You can reduce patental-love and nurturing to selfishness only by sleight of hand (long term selfish interest in care in old age? oh yes?); and without a lot of co-operation hunter-gatherers (which is how we evolved) would never have survived. When we create art and music we are not selfish – at least I don’t think so. I do think that market society under capitalism requires us to be as selfish as we can, however, both if we own assets and also if we are employed to create them. And the mentality and the logic spread out to all sectors – including the skilled services. So it may seems that our selfishness is the only valuable drive we have. This is not true in my view. Let’s talk about it when I get back.

  3. PPPS
    I think that the size of a space is to some extent inside your head. What the space means is elastic. There’s a beautiful poem about this, I think by Louis MacNeice which I will try to find for you.

  4. What a great find – thank you, Barbara!
    How did your interview go today, Tom?
    Good night, Tom

    Louis MacNeice – Sunday Morning

    Down the road someone is practising scales,
    The notes like little fishes vanish with a wink of tails,
    Man’s heart expands to tinker with his car
    For this is Sunday morning, Fate’s great bazaar;
    Regard these means as ends, concentrate on this Now,

    And you may grow to music or drive beyond Hindhead anyhow,
    Take corners on two wheels until you go so fast
    That you can clutch a fringe or two of the windy past,
    That you can abstract this day and make it to the week of time
    A small eternity, a sonnet self-contained in rhyme.

    But listen, up the road, something gulps, the church spire
    Open its eight bells out, skulls’ mouths which will not tire
    To tell how there is no music or movement which secures
    Escape from the weekday time. Which deadens and endures.

    Louis MacNeice – Snow

    The room was suddenly rich and the great bay-window was
    Spawning snow and pink roses against it
    Soundlessly collateral and incompatible:
    World is suddener than we fancy it.

    World is crazier and more of it than we think,
    Incorrigibly plural. I peel and portion
    A tangerine and spit the pips and feel
    The drunkenness of things being various.

    And the fire flames with a bubbling sound for world
    Is more spiteful and gay than one supposes –
    On the tongue on the eyes on the ears in the palms of one’s hands –
    There is more than glass between the snow and the huge roses.

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