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Amanda Thorpe


...a speeding car screeches to a sudden and abrupt halt at the side of a road. The door opens, without warning, I am ruthlessly shoved out and land in a sprawling heap. Wheels spin, such is the hurry of its departure and the car is gone. I wait and I wait and I wait until I realise that no one is coming back for me. Still, my gaze searches every passing car hoping for that spark of mutual recognition. Surely the car will return for me, the occupants perturbed by my absence. Nope, long gone, all gone, they’ve moved on…


Scleroderma shoved me out of the life I was living, dumped me curbside and sped off, unfortunately taking many of my relationships with it. Having dismantled the body it grudgingly inhabits with me, having totally invaded and subdued this host, it had my relationships in its sight. Target acquired, missile fired, relationship expired.


It has not succeeded with all of my relationships, mind you, it’s just that the ones it has are rather telling. Akin to the monster in a black and white film, "IT" picks off those vulnerable, on the peripheral, yet “IT” refuses to adhere to the norms we’ve come to expect from that genre. That only those on the peripheral become prey, the main character and entourage remain untouched. With at least 30 minutes dedicated to introducing the minor and major characters, the audience is reassured that only those marked with terrible personal problems or a devastating family secret will fly out of the fuselage or be eaten alive because even when the end is nigh, cinematically speaking, someone survives. How else is the tale told? The hero(ine) is always left standing.


Scleroderma follows no such guidelines, makes no such agreement with its host. Alas, it can't read and is not a big movie goer.


I was recently told by a close relative that they avoided socialising with me. I had already realised this and guessed the "why". Mind you there's a difference between knowing in a small corner of your mind and knowing as an acknowledged fact with the attached feelings. Well, now I know and I feel that knowing.


I have been left behind, ditched, abandoned and the like because I am unreliable, no longer fun. I am want to cancel an engagement. Having arranged to go out, I then fail to do so when the specified day rolls around. Or, should I actually partake of the occasion, I fade halfway through, by the time I arrive at said destination, get into the joint, sit, order and stare down the first plateful, I have flopped, fizzled out, faded away, succumbed to the familiar, tired and wanting to go home. All of this makes me a massive spoiler of other people's fun and I know that this is why I rarely, if ever, see certain people.


Of course this puts the blame and responsibility squarely on me even though I have no control over the cause and am just as much “IT’s” victim as those whose fun I spoil, not that anyone acknowledges this. I am hit with a double whammy, when I am unable to go out, I miss out on doing so and when I am well, no one asks me out in case I cancel so I again miss out. It's a wonder I see anyone! Apocalypse now, tomorrow or already, what difference would it make to me?! Okay, now I exaggerate but that's how it feels.


Scleroderma, having started the dismantling process, will at some point finish it but I never expected people to get in on the act in the meantime. When you have a chronic illness, become disabled, have an uncertain life trajectory and expectancy, you don’t expect your family’s response to be one of self preservation by shunning. I am not yet dead but sometimes I wonder if they're pushing me away now so that when I am, they'll already be used to the resulting vacancy. I can only speculate. What I do know is that this ploy won't do the trick. You can't prepare. Death is brutal, selfish, and sudden, even if you know it's coming which of course we all do there’s a difference between knowing in a “vague, one day in the distance” kind of way and “very likely with physical pain and suffering, sooner than it ought to” kind of way.


I am still alive but the life I had pre scleroderma is not, it was butchered, hacked away from me piece by piece. The loss I felt was brutal, sudden and selfish with some relationships withering in the fallout. All I can do now is regroup, like a true remaining survivor of “IT”, not blown out of the fuselage, not eaten alive, take stock, plot course and plod on, wondering where I'm going, if I’ll ever get there and how I’ll know when I do.

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