On Friday I got back to Occupational Therapy at OT for what turned out to be the last time – This was the final appointment where they show all the awesome disability-appliances, tell me how much easier life would be if I had an electric tin opener or a load of ergonomic pillows or an easy-to-grip pen, then break the news that they can’t prescribe me them, and that I’ll never be able to afford them. The cheapest item is the £5 tap-turner, for crosshead taps, which won’t necessarily fit *all* crosshead taps so you just have to buy it and see.
I now have a copy of the OT Stores catalogue, which may be the most depressing item in existence. An awful lot of “Your life is a sad mess, so here’s a load of white, beige and institutional blue stuff which might make it marginally easier to physically get around, whilst also ruining your self-image and making you feel reliant on us”. Because the worst bit about being disabled is the part where you can’t forget it, even on the days when you feel basically all right. There’s a grab rail next to my toilet, for when I can’t stand up on my own, and a flannel in the sink for the days where washing myself otherwise is impossible. Next to my bed, I keep a stack of high-energy food, Lucozade, and empty bottles. Even on days where I’m doing all right, where I race downstairs, make myself a pot of treacley Polish coffee, then go into town, I have to go past the extra hand-rails on everything, the perching stool in the kitchen that lets me cook, and then spend a few minutes debating whether to stick a full set of orthotics in my bag “just in case”, alongside the morphine and the overnight box of medication in case I end up trapped on a friend’s settee overnight.
It sounds like a minor whine, but I don’t want my house to look like an old people’s home. I want my decorating – Which I put a lot of thought into – to stand on its own merits. I want people to sit down in the living room and notice the Meiji-era table, the well-worn and comfy Chesterfields, the open fire in its cast-iron surround, the furisode hanging on the wall (Which changes with the seasons) and the bookshelves bending under the weight of a lifetime’s worth of books and scientific equiptment. Not to have to step around a contraption of white metal tubes and blue straps which helps me get in and out of a chair. I want people in my bedroom to feel drawn towards sitting on the bed, curling up in the pillows and sheepskins and blankets heaped up against the headboard of the victorian gothic fantasy that is the frame. I don’t want people in my bedroom to feel as if it’s a holding pen for a cripple, covered in beige “disability adaptions” and that they have to sit on a stool as if they were visiting my bedside in a hospital. I want people in my workshop to sit on the chaise longue, look around at the things that I’ve made, and be impressed, not to fixate on the weird contraptions around my workbench which make it safe for me to use.
I accept that I need things to make my house easier for me to live in – That there’s going to be an emergency walking stick in every room, that my bed has tall corner posts so that I can use them to steady myself as I stand up, that I have a mini-kettle so that I don’t need to try lifting a full one, but I resist the idea that all disability adaptions have to be so clearly marked-out as such, with their medical colour scheme, their wipe-clean vinyl padding, and their right-angled, safely-rounded shapes. I want grab rails made of turned cherrywood, support frames laquered black with brocade straps, multi-compartment pill boxes which look like cigar cases. There’s been a pleasant alternative to the “Everything must be beige” meme lately, in that disability appliances have started to be available in “cute” – Pastel-coloured crutches, heat packs in the shape of zebras – but there’s nothing commercially available that’s made to just complement the decoration of a room. The world of orthotics is slightly better than that of home appliances; My splints are mostly plain black, prostheses are getting to the point of both serious functional and aesthetic customisation (for a fee), and wheelchairs are available in almost any colour that you could spray a car in, but there’s still room for improvement.
Anyway, this wasn’t even today’s major complaint. Today’s big whinge was that RL had actually entirely forgotten to make the rheumatology referral for me which I’d been promised on the 22nd of May. I only found this out when I asked at the rheumatology department at CA on Friday, having decided to pop along and see if anyone knew how much longer I’d have to wait before I heard about it. And lo, nobody knew anything about it. Many long phone calls later – Phone calls which, if I’d not known to make, since nobody told me to make them, I’d not have done and thus wouldn’t have got my referral – and RL have promised that they’ll remind Dr F to get it done, and get it done quickly.
So basically, I might not get to see my local rheumatology team until after I’ve been down to London, meaning that I won’t be prepared for Dr Kk’s team, and meaning that they won’t have anyone to discharge me back into the care of.