What is wrong with him, then? Part 1.

There are an awful lot of things right with him, too. He is my dear heart. He is the complete opposite of a wet blanket and will put a brave face on and cover up all the pain he can. “Pain is weakness leaving the body” is one of his favourite sayings. He’s very proud. He is full of cheeky humour which occasionally spills over the edge, especially given the right company. He adores animals and has a great respect for wildlife. He is almost impossibly gentle and yet will fight with all his strength to defend those he loves and those who cannot defend themselves. His two absolute heroes are Ray Mears and Han Solo. He is steadfastly loyal and always keeps his promises. He is honest to an absolute fault and holds fast to his moral code. I admire him deeply and utterly.

However, you can’t live on these qualities.

He was born with a few differences. A prescribed morning sickness medication (Debendox) left him and others the same age with congenital deformities. Although he is better off than most, it left him with fewer fingers than usual, without the associated musculature and therefore thin, weak wrists.  Apparently there are also “spurs” on his spine that make it look a bit like a dinosaur’s! Although the company was pursued by a group comprising of the families of those children, no settlement was ever reached. (I think this is important to state, as otherwise it may look like Everything Is Now OK As Compensation Was Accepted). Of course, the full effect of the drug on his system might never be known. As no doubt will be appreciated, the more obvious differences were character-forming. He’s had all manner of bullying and insults over the years. True to form though, he’s coped. As he says, he’ll never be able to play the flute, but has adapted well. He’s changed tuning on guitars so he can play them; he did a lot of active stuff in his youth like mountain biking that bulked his wrists up with muscle. And he developed a fondness for sticking up for those who couldn’t, and standing up to bullies.

S first had trouble with his back about ten years ago. He was working two jobs to help support us; no layabout slacker he. He was proud of his work ethic and had no problem with cleaning toilets, heavy lifting, dealing with drunks or anything else he may have had to do.  An incident at work left him with two collapsed vertebrae after lifting an overstacked trolley into the building. They pretty much crumbled under the weight placed on them. His back is odd to look at now. Imagine someone with a healthy eye closed. Now imagine that their other orbit contains no eyeball. The hollow in his back looks a bit like that – a sunken place where a smooth one should be. The workplace has since improved its procedures and there is now a handy ramp and no lip to lift anything over, but this came too late for S. Much like the first bit of Things That Are Wrong, there was again no financial comeback for him.  He had minimal sickleave and was then laid off after failing to get a job elswhere in the organisation. He had previously been very physically active. He’d been a drummer and mountain biker, and got exercise through his jobs as well. All of a sudden, he could do none of that. Depression hit; apparently a recognised effect of a system used to having regular bursts of adrenaline suddenly being without its hormonal impetus. He is also a proud man, used to earning his crust and being independent and to have that taken away was a big blow. He started to withdraw, but fought his bad back all he could. Through bloodymindedness and hard work, he managed to get himself mobile again. (Because of this, he is not able to get an operation for his back on the NHS). With painkillers and a stick he could now walk but found standing up or sitting down for any period of time very difficult. His muscles wasted; his wrists thinned. Now, he can lift some things some days but will suffer increased pain for days afterwards. Other times, he can lift a part-filled kettle and that will be enough to set his back into spasm. Sometimes he gets stuck in bed, so I make sure he’s up before I go to work. He won’t go for a bath unless I’m at home, in case he gets stuck there too. He’s too embarrassed to have his teenage daughter come in to rescue him. Sometimes he gets stuck on the loo. It’s all very unpredictable. He also has lovely things happen like a dislocating shoulder which again is related to his back. He’s had physio for it, but because of the time it took for referral he has constant pins and needles in his fingers still. At least he’s got the feeling back in them.

So, this was why he was on long-term incapacity benefit in the first place. There’s more to come; the big, dramatic stuff, too. Probably in another post though.

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5 thoughts on “What is wrong with him, then? Part 1.

  1. This post makes me want to take Atos and all associated cronies and ram them so hard up David Cameron’s jacksie that he’s on the moon. Without a space suit.

    I was curious about S’ hands – I never knew that it was because of morning sickness medication. I would never have asked because it didn’t matter to me personally whether he has three fingers or ten (though that, surely, would mean he would be the best piano player in the world?! And I might have to ask for free concert tickets.) But I’m glad I know now, because it just makes my belly burn even more at the sh*t b*stardness of this whole thing. I know you two and I know you would never fish for sympathy. It’s not sympathy in the simplest sense but pure anger that the country I live in can be so bloody cruel to two people I love, and who I wish the world for.

    And I will support you both as you fight them in whatever way I can. That’s probably just letting you lounge on the floor with my cats, and shouting a lot at the media. But I’m here.

    Love you both xxxxx

  2. I am the mother of S’s teenage daughter. I thought that I would post a few things about S from when we were together in the early-mid 90’s. When I met S, he was incredibly charismatic and funny and always had a tale to tell and of course, a very talented musician and artist (thankfully my daughter got his genes in those disciplines and not mine!). However underneath that, he was very self conscious about certain things, especially holding hands even though I would tell him that it didn’t feel strange to me. He was sometimes clumsy because of the way his body was miswired and that would make him angry.

    We were both players of MUDs and members of a well known BBS and at meets S would make friends instantly. Those activities meant that S had to learn to type quickly and S did. Despite his alternative appearance, long hair, black trenchcoat, black skinny jeans, something which back then would make ordinary people uncomfortable, he could charm anyone and everyone. I’d be looking at something in a shop and he’d have the shop assistants in stitches.

    When we found out that I was pregnant, very early on in our relationship, he went on to charm midwives and health visitors.

    S and I fell out of touch for a significant amount of time but the wonders of Facebook allowed me and then our daughter to get back in contact with S and R. The S I know now is still the S I knew then sometimes but it’s buried deeper than it used to be and that is not good. I love S and R now as family and I have huge admiration for R, my fellow Mum to our daughter. It makes me angry that they have been treated so poorly by the system that is supposed to provide support. That R has had to put her degree on hold even though being qualified will improve their circumstances but they are stuck in a vicious circle.

    (For those that know me and want to know why things ended the way they did, I’m happy to answer questions via email.)

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