“… And then you’d be getting paid for something worthwhile complaining about.”
I looked at her; a pretty woman with blonde hair, a stinky attitude and a smug expression on her face. I stand some inches taller than she, and yet I could feel myself shrinking under her gaze as she regarded me in the same way you’d regard something nasty that found its way onto your shoe.
All because, in appearance, I look fit and healthy; therefore I must be one of those so-called benefit scroungers and the scum of the earth.
I am not one to be cowed by anybody. Looking directly back at her, refusing to shift my gaze to the ground with a shame that I shouldn’t have to feel, I quietly asked her which part of “Having epilepsy” she didn’t understand, and if she had any idea how much of a danger my condition poses to anybody and everybody around me. I asked her how she dared to judge me when she knew nothing of the many years now that I have been trying to find a suitable job for myself.
I asked her how she would feel if, every time she looked for work, she had to hear the words “I’m afraid we’re out of options given your limitations” (Job Centre) or “We’d love to hire you, but…”
At least she had the grace to look ashamed, I suppose – which is more than she had bothered to do when I’d turned up on her doorstep to express my concerns about the welfare of her dog.
She knows – because she has seen me out and about – that I rarely need my wheelchair (I purchased that specifically for getting around town and being able to exercise my upper body locally when I can’t trust my legs – you need to be strong in order to power a wheelchair alone successfully, and I am not). She knows that even my use of a stick very much depends on how far I have to walk and whether or not D is with me. Heck, she’s even witnessed me collapsing across the road from her house (whatever it is she does from home – and I wish she’d tell me what it was so that I could get a paid job working from home too – seems to involve plenty of time to spy on the neighbours’ comings and goings whilst leaving her dog to bark itself hoarse in the back garden).
The oncoming storm
The neurological pathways of the human brain are busy enough when the brain is normal. Take a look at the above picture and ask yourself how somebody can think clearly, stay concious or even get out of bed with all of this going on to some degree or other all the time, every single day. Just because you can’t see it, that doesn’t mean that it isn’t happening. The person you are so happily conversing with could well be showing outward signs of calm, but inwardly they may be struggling to keep hold of the thread of the conversation because they’ve “blanked”; they could be hiding some truly horrific-looking injuries underneath their clothing because, yesterday, they had a seizure and fell down the stairs, or they blanked and slipped, dislocating their arm at the same time.
Just like this, you see?
I do actually work from home, as it happens, but that work (Media Volunteer) is sporadic and I don’t get paid for it. That doesn’t prevent me from enjoying it and coming into contact with the wonderfully friendly team at Epilepsy Action though – I’m still doing something that could change somebody’s life for the better.
I wasn’t even going to broach this subject because my concern for the woman’s dog is the most important thing, but a blogging friend gave me pause for thought in a comment she left me, and I realised just how much this callous statement hurt me at the time. Another twist of the knife; another painful and shaming reminder that other people are able to do things that I physically am not able to do, and that some of them see this as a failing in me and feel that it’s okay to rub my face in it.
If I could swap my epilepsy for any condition that had a fair chance of improving then I would trade it in a heartbeat so that I could go out and be useful again – but since that’s not going to happen any time soon I just have to deal with it and hope that, some day, we will find a medication that will control my seizures enough for potential employers not to fear me. Perhaps one day my brain won’t be an unstable, unpredictable bomb just waiting to detonate at the wrong moment.
I gave up looking at the jobs section of the paper a long time ago; the physical longing to be able to be interviewed for “that job” and the tears of frustration through knowing that even turning up would be a waste of everybody’s time and another blow to my fragile self-esteem became too much.
We’ll find that perfect medication, one day, and I will find that job that I want so badly. I absolutely refuse to give up hoping for that.
