Don’t die of embarrassment


An exciting day. Lewis arrives from the sunny south coast. As I write this he should be just about dragging himself out of bed for the 4 hour train journey north. The plan was that we would be going to Leeds festival together, but there was no hesitation from him in accepting the inevitable cancellation when I informed him of my condition. There is no-one I would rather be with me on Thursday and so I am glad he will be here.

Lew was one of those kids who tried everything, football,, cricket, cubs, collecting, all the usual things boys do, but never really connected with any of them. He struggled intellectually, due to the constraints of severe dyslexia, yet his mind and intelligence often astounds me, and others, to the point where he leaves us all behind in his understanding of such complex matters. For someone who has so much difficulty reading, his choice of books would even leave Prof. Stephen Hawking scratching his head. Proverbially of course. Everything changed for Lew after I took him to Glastonbury for the first time in 2000. What an eye opener that is for any child. Lew embraced everything there was to see and came away with a different view on life, and a focus on the direction he would be heading. Within weeks he had his first guitar, and the rest is history. OK not a history everybody knows, but there’s time for that to happen yet. He had found his vocation in life, and is now an accomplished and very talented bass guitarist and musician. I think both he and I would agree, that going to Glasto was the best thing that ever happened to him. We’ve been to countless Glastonbury’s and other festival together since, and there is no-one else I would rather be with. As much as I may have had an influence on the music he listens to, the favour is returned ten fold, and I value his opinion and guidance on things I need to listen to or go and see.

Just when you think it’s over I pull sibling out of the hat, (and there’s plenty more) sister Marion (as opposed to Marian – my Dads partner). Maz is a living angel, not always for her own good. She has, and has had, more to cope with in life than you could wish on your worst enemy, but has done so without any consideration for herself. She is such a lovely, sincere and caring woman. Maz deals with whatever life throws at her without complaint, including a disabled son and a daughter that has suffered serious medical problems for many years. During the most turbulent of years she qualified as a Nurse and now works full time as a nurse, mother, grandmother housekeeper etc. etc. Yet she still finds time to telephone me to check on my health. Better informed than most of us (she deals with cancer patients regularly) and is both frank and understanding when discussing my condition. She re-assures me when she thinks it’s required, as she’s probably able to read the thoughts already embedded in my mind.

Medically, there is nothing to report. I’ll let those that are making the decisions get on and do so. I’m delighted to be back into a good sleep routine, another 8 hours last night and I feel good. Someone at Weight Watchers is having a laugh, sending me emails on their latest special offers on membership. The challenge for the next few days is having someone in the house who wants to eat real food ! This is someone that would order a family bargain bucket for himself from KFC, always orders and eats the spare meal if three of us are at Two4One, and would easily have a 16 inch pizza for a snack, with chips. Somehow I don’t think he’ll be joining me in soup and energy drinks.

The messages, comments and good wishes that keep arriving continue to amaze me, particularly the encouragement to keep this blog going. I was afraid that my writing would be nothing more than therapy for myself, but so many of your have commented on how my blog has made you think. I never wanted this to be a crusade, but I can’t ignore the fact that raising awareness of this awful disease can only be good. To borrow a well used phrase “don’t die from embarrassment”. I am reminded that my journey is only just beginning, I am going to have to live with the consequences of this disease for a very long time. I hope by the end of it, news stories like this  are a thing of the past.

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3 Responses to Don’t die of embarrassment

  1. Sarah says:

    Iam a Glastowatch regular and came to this blog via that one! I have already commented on that site but Iam avidly following your blog. I cant possibly know what you are going through but I support you wholeheartedly by continuing to follow you. I hope you can be an inspiration to others just by your warm and witty ramblings!

  2. afriend says:

    I’ve never found myself wanting, cheering and wishing that a total stranger turns out okay.

    Hopefully one day we can share a neutral flavoured drink together.

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