The gap in postings is because I've had to gear myself up. Or, rather, having geared myself up several times, I've written too much and crossed everything out. Never mind cars and Nexus 7s. Light-bulbs are where it's at. These matter. Which means - I'm going to post a long post. If I don't I'll never get round to posting ever again. No, not ever.
The EU has decided to bring an end to conventional bulbs. This change will save people a lot of money. It will save power. It will help save the Earth. But, as many of you know, I have epilepsy. And as some of you have already guessed, my problem with ecological light-bulbs is that some give me fits. Not all. But enough that when I'm round and about, I'm always anxious. I don't want to contribute to our extinction but I don't want to live in fear either.
Living in fear is not good. This fear, fear of falling over and not being able to get up for a few minutes because I've had a fit, may be a low level fear but it is, none the less, at times - real fear. I'm not in danger of being shot or tortured. I know that. I'm not likely to die of epilepsy. I know that. I don't want to claim too much. But this in-the-background concern-ed-ness wears at one. It's not just fear of flickering lights. It's more generalised. What if I fall in the road? What if I have a fit and can't move and I'm on my own and someone unpleasant comes along? There's lots not-to-worry-about.
At home, we are working through a box of conventional light bulbs. We have enough for another year. Maybe two. But, when they run out? . . .
There have been several stages in the development of ecological light-bulbs.
The first to emerge took half an hour to turn on. These were good for character development because, once installed, we, all of us, had to do a lot of forward planning. You couldn't just walk into a room and expect to find a book. You'd need to turn the light on now and go back for it later. Maybe the country has been running more smoothly ever since? We've learned to be better organised. However, the manufacturers slipped up in at least two ways. First, they should have provided a torch with every purchase. Second, they should have offered handy tips - like how to pass the time waiting for light while children spew all over bedclothes in the dark. After missing several evening calls because we didn't find the phone till after it had stopped ringing, we took all our ecological light bulbs out and put the old ones back in.
Next were the flicker-flicker ones. A free light show with every bulb. I don't think these did affect me adversely but there was always the worry they might - and my husband and children would start shouting 'shut your eyes, shut your eyes' every time a light had to be turned on. Not exactly restful. And the spitting and on-and-offing was, in itself, alarming. We took them out and put the old ones back in.
Some recent long-life bulbs aren't too bad. They may take a few minutes to get up to full power but they don't flicker in a way I notice and there's enough instant illumination to make their use feasible in the hall and bathroom. But elsewhere in the house - I'm in rebellion. Not only are we not using ecological bulbs, I've taken out all the conventional 40s and 60s and have replaced them with 100s. Maybe it's something to do with growing older and nothing to do with being cross about being forced to use bulbs that make me ill - but I can no longer bear dullness. I'm belligerent and angry with the world. Brighter lights brighten my spirits.
But . . . out and about . . . ?
There's a new kind of light which looks conventional only bigger. Pubs and places are putting them under lampshades. All looks well. I trot in, order a coffee. Take a few sips . . . abandon ship and rush back out before I keel over. If these spread. I'm stuck.
It's quite an odd and irritating thing, epilepsy. It affects people in so many ways those of us who have it can't sensibly be treated as a group. There are all sorts of fits, all sorts of causes. The rhythms and patterns that affect me don't affect everyone in the same way. Indeed, they don't always affect me. I know danger spots - specific stairways, particular patches of pavements, certain shops. I can be there sometimes and be fine. And at others - wham, I'm staggering.
I confess there are moments too when I get bitter and jealous. A theatre with ramps for wheelchairs may also have a notice outside saying people with epilepsy had better not see the show. There are white and yellow lines painted along the edges of steps to make them easier to see. Some are ok but, sometimes, I can only negotiate them safely with someone supporting me. Wobble, wobble, stagger, stagger. Of course I don't want people to be excluded from places because they can't walk, or be forever falling down stairs because their eyesight is poor. Of course not. But I might as well let you know (for I doubt I am the only one) that there are times when my insides cry out 'What about me?'.
And ever since the EU decided old fashioned light bulbs should be outlawed, and ever since the large-bulb version of long-lifers hit the market, I've developed an extra fear - fear that I'll end up excluded from the world entirely. I'm not going about trembling and abject. None the less, 'frightened' is the right word.
Apprehension plays an almost constant part in my life. I avoid candles 'just in case'. I avoid places with strip lighting 'just in case'. At Christmas, I lowered my head against flashing decorations 'just in case'. I don't know which, if any, will affect me. And if they don't one day, they might the next. So there's always a sense of being pushed to the edges 'just in case'.
There are, I know, people with disabilities much more challenging than my kind of epilepsy. Sometimes, though, having an invisible disability is embarrassing. I wonder if people wonder why I don't have a job. I wonder if people think I'm some kind of fraud that I am running (literally running) along one day and refusing to go out or walking in an odd bang-footing way the next. When my voice is fine for most of the time and then it slurs - do people assume I'm drunk? And why should I mind so much if they do? After all, some people get drunk on purpose!
There's my rant about light-bulbs - and the reason I'd like a life-time's supply of the old-fashioned kind. It may well be - and I hope it is - that the next generation of long-life lights will be perfectly steady, they won't flicker, visibly or invisibly. In the meantime . . .
. . . they lead the way to my fourth desire (in a later post) - to a campervan. We are thinking, my husband and I, that a time may come when a conventional house with unconventional bulbs will no longer be a comfortable home for us. At that point, we may hit the road. After all, we would like to see the world.
The previous posts in this series about my wish list are:
For an article about the EU and light-bulbs - Light Goes Out for Incandescent Bulbs (Guardian - August 31st 2012)