Friday, 19 September 2008

A Series Of Unfortunate Events

I enjoy writing this blog, it keeps me entertained and apparently one or two of you as well. It does, however, present me with a problem. How much detail should I go into when discussing the ups and downs of my disability? Of the hundreds of you who will read this I only know in the real world a handful of you. The vast majority of you will only ever know me through this blog and the miracle of cyberspace and the picture I paint of myself is the one you are stuck with. My sunny nature, sweet disposition and fabulous good looks are something you have to take on trust. Unfortunately (for me) some of you really do know me. You may be one of my family, taking the occasional peek to check I'm not libelling you, or may be an ancient and decrepit friend from childhood who with rhumy eyes seek desperately for glimpses of lost youth and the hope of an immortality of sorts by mention on these electronic pages. (See you soon guys.) Equally you may be someone from my youth, with hopefully fond memories of teenage dalliance or sweet college days who read this blog out of affection and to provoke remembrance of when we were young, carefree and with the future laid out before us with it's tangle of paths not taken. Or you are someone I meet at the school gate, drink coffee with and go out with to the cinema or the occasional quiz night. The question is: how much do I want you to know? And equally importantly: how much do you want to know?

As the more astute among you will have realised I've been going through a difficult time recently. One of the reasons I started this blogging business was because back in April I realised that the FSH Muscular Dystrophy that affects me was starting one of its periodic stages of decline. Slings and hoists have been introduced into my life, afternoon sessions on the BiPap are now necessary, uninterrupted nights sleep are a thing of the past. But these things, though wearing, are bareable and in some ways even improve the quality of life. There are other aspects that are just plain miserable though, with no redeeming properties whatsoever.

Yesterday was the straw that broke the dromedaries spine. I'll keep the details vague, but it involved bathrooms and no time for hoists, humiliation and misery. It was the culmination of a series of horrible occurrences that pushed both Polly and me to the brink. At 3.15pm we called the doctor and at 6.10pm Dr Toosy arrived for a house call. There is no magic bullet but I have the feeling that a ball has started rolling down a hill of badly mixed metaphors and I have no idea where it will come to rest. Something needs to happen because if it doesn't I don't where I'll end up. In some ways it's a relief that things have come to a head. There is a kind of peace that comes with admitting you can't carry on as before, even though you have no clear idea what you can do about it. All I can suggest is that you keep reading and I keep writing. Wish me luck.


  1. Stephen, I appreciate your letting me into your world. Though we will likely never meet in person, I know that if we did, I would find you as charming and convivial face-to-face as you are in your writing. I'm glad you have Polly beside you as you deal with the "slings and arrows of outrageous fortune." And a caring doctor; that's a nice, too rare touch.

    What should you say in your blog? Whatever you want. I figure that anything you write is a gift of yourself to your reader, and I'm not one to complain about a gift. So, thanks for writing.

  2. Yes do keep writing, although people may focus on some less expected aspects of your posts: Like me today:

    You eloquently and gracefully describe your latest difficulties and I can only sit here, dumstruck, thinking; "His doctor makes *house calls*? The only way I can get a doctor to come to my house would be to put it on the market".

    I am shallow, I admit it. But shallow people can appreciate good writing.

    One Sick Mother

  3. Stephen, I also have FSH and your condition sounds similar to mine. My adopted children are grown. One of the best comments I have heard about dealing with the loss of function is that having FSH is like being in a continual state of grief. We keep losing function without time to integrate the changes into our self perception. Makes it difficult to adjust to new losses.

    Good luck with your blog.

  4. Buddy,
    As one of your duey eyed friends of old I can state (on behalf of both of us) that your blog has allowed us into an aspect of your life that was never spoken between us before (40 years is a long time). Its not that it was hidden shamefully away, far from it.... just that we were amegos and immortal.

    It is an honour and a priviledge to read of your day to day life, especially knowing all that has led up to it.

    Mind you....your not the only one with troubles brother I can tell you....I am a martyer to my bloody knees....I can't see a thing anymore...and you'll weep if you hear of Bassbins ailments...yet, do we grumble? Ruddy well right we do!

    Your blog helps keep things in perspective, and I'm glad we are still all here to grumble about it.

    Keep writing and I will keep ripping those roof tiles off for you Steve.

    God Bless
    Top Loader


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