06 October 2017



In a sense sickness is a place, more instructive than a long trip to Europe, and it's always a place where there's no company, where nobody can follow.
Flannery O'Connor 


There are days when I have to tread very carefully to avoid this all consuming anger. 
Or maybe it is all consuming jealousy. Or this overwhelming feeling of life not being fair. 
And before I know it, I am stuck at entitlement and why me.

Most days, I catch myself in time, let it settle, recognise it and watch it fade, slowly. That's a skill I am working hard on accomplishing. Life long learning etc.

Other days, I am helpless but at least try not to show it. And then there are days when I let it all hang out. You better not come near me then unless you bear hand selected or at least mindful gifts of comfort and distraction. And I am getting very choosy. I am a veteran by now.

Once again, I sat for long hours in the blue recliner with the slow drip feeding into my vein. My co-sufferers of the day included a confused and newly diagnosed man on his first round of monoclonal antibody therapy. I made it my mission to inform him on the intricate aspects of auto-antibodies and immune suppression, night sweats and fever flares and fatigue, disability and early retirement and life expectancy studies. 
His response was: Hell, no way. Not me. But that was before the clemastine kicked in. 
While I listened to him snoring and gulping, I felt awfully superior and so much more advanced and educated about my/our shitty disease. And then my double dose of clemastine reduced me to counting the strips of the window blinds for the next six hours, over and over and over.

On the way home, I vaguely noticed the active world through the car window, cyclists, groups of elderly tourists queuing at the museums, kids chasing leaves and dogs, smart suited business people running or at least striding with purpose, all that healthy energy outside my little bubble of chronic illness. Not my world. Not anymore.

And later, I was lying on the carpet in the sitting room with the sun pouring in and the patio doors wide open. This glorious carpet is the most expensive item in our house, purchased on the spur of the moment from a smart young man in one of these come and go warehouses by the motorway, ('no child labour, madam, all made by ladies in my valley, look at certificate here') and I traced the intricate patterns with my finger. Apparently, you can identify a real handwoven Persian carpet by its tiny mistakes in the patterns, which are left there deliberately to show human humbleness in the face of god's perfection. Or something like it.

There is a metaphor here somewhere. 




11 comments:

  1. Your incredible talent to take the vile fibers of illness and suffering and weave them into something quite beautiful is amazing. But oh, how I wish you did not have reason to do so! Suffering is absolutely not a beautiful gift in any way and just because you have found a way to shine the light on it does not rationalize or trivialize it.

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  2. I shall spend the day recognizing and being thankful for my good health and wishing I could give you the same.

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  3. Eloquent post. So much is unknown to so many of us. I suffer what I think it would be fair to call a "moderate amount" from chronic pain and a lesser amount from disability, but so far anyway, nothing that might kill me. Still, my wife and I are in our upper sixties, so the time of great suffering and eventual death is seldom far from my thoughts.

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  4. Dear Sabine, I wish it were different. But oh, how you write. Love to you, dear friend.

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  5. Oh you remind me of the time I sat at my mother's side as she got her slow drip of monoclonal antibodies. The time moved so slowly there. Afterwards it was a long day of quiet. I hope you are feeling better and stronger today, and that the carpet still shows you the intricate beauties of our imperfections.

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  6. 'Not my world. Not anymore.'

    But it is, isn't it? Just seen from another perspective now. And if your mind can still see it while you're sitting in your blue recliner then you still have a richness in your life that's 'A Good Thing'. At least I think so.

    I'll be taking to the blue recliner in a week or so (for a complaint other than yours), along with concurrent doses of supposedly therapeutic radiation, so your words have touched me a little. I hope to be as resilient as you. Sterkte, as they say in NL.

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    1. Interesting thought, Nick. I suppose I took her words to mean that she's in a state of forced loneliness, something akin to what returning soldiers experience, but that the majority of people can only imagine and even that much poorly. And then there's the feeling bad and the fatigue. I picture it as being as constrictive in regard to the outer world as having to live alone in a tiny room.

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  7. I'm sorry to read this. All I can do is hope that there is a better future for you (immediately).

    Greetings from London.

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  8. We all have to find a way to channel our thoughts to carry us through each day — often no effort necessary, but health issues do alter that situation. You eloquently present considerations in your adaptation to this “place” where you have been thrust. I wish you many “better” days.

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  9. Your honesty and willingness to share your thoughts are deeply moving. Have I told you how much I like you? I do.

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  10. I don't even think you need a metaphor. Rage on. You know how I feel about anger and resentment. Your feelings are not yours alone. We are legion. (And we are also about love and joy).

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