June has been a busy month, full social engagements and busyness. First there was my birthday, which was a lovely day. Breakfast and presents on the terrace with Mummy and Daddy in the early morning sun. Mummy had cooked what I'd asked for, the Sydney breakfast that I loved so much, scrambled eggs, smoked salmon, roast tomatoes and avocado. Delicious. Then we went a garden centre for a little pottering, then back home for a shower and change and then on to my sister Ant's for birthday cake and a big surprise, one of my stepsisters, Amanda, turned up. That's when I found out we were going down to Brighton where another one of my sister's, Clarry lived for a girlie night. It was a lovely night, we ended up at Jamie's resturaunt, and then on to a cocktail bar for a couple to end the night off. Clarry presented me with a concoction and all the she told me was that 'it has gin it.' God forbid what else.....but it was very nice and sweet.
The next week was hectic, a couple of days working on my redraft, which is how it seems to be working at the moment, fitting in a couple of days here and there, which is really frustrating, but I have to get it right, otherwise it won't be published. The rest of the week was dedicated to buying presents for my niece Fia's birthday, the 14th. She's dead into Hello Kitty right now, only I'd missed out on buying all the accessorises and merchandise, so instead I made up a lucky dip bag with the blingest pair of flip flops that I could find in Accesorize. I also had to buy Amanda her birthday present as it was her birthday the same day.....presents, presents, presents, that's all I seemed to be doing that week....But by Saturday I was able to calm down a bit at Fia's party, it was a more chilled affair than the previous year, despite the face painting, the games and the rabbits that were hopping around the garden with the labrador and lurcher not taking any notice.....you wouldn't wonder why other people call our family barking.......
And the following week....oh yes believe me there's more.....I ended up shopping again. This time for food. Once it was done, I start chopping, mixing and grating and by the end of lunchtime on Monday I had bowls of invisible slices of celery, half inch cuts of spring onions and a mountiain of grated cheese. What were all these for you ask? Well I was attempting to make cheeseballs for my housewarming on the following Saturday the 19th. But by the middle of the week everything had gone completely tits up because both mixtures ended up being to runny to form into balls. So instead we made one into a quiche, and the blue cheese one into a dip which actually went down like a storm......
So you could say that I've been on the go all month.... but in the midst of all the goings on, I had a head trauma that shook me up for a couple of days. As far as I can remember, it was the week before Fia's party and I had a full 'to do' list on my IPhone. I had headed out to complete the first item on my list, I needed to send a birthday card to James in Australia, he was going to be four. So there I am standing in the queue in the post office when I suddenly feel a complex partial seizure come on. I have simple partial seizures, complex partial seizures and secondary generalised. All in all it doesn't matter to me, the complex partial, whether level one or two have always been 'ices' or - even 'ice in the bottoms' that was when I was around three to five - Doctors used to ask me why I called my attacks 'ice in the bottoms' and I had no idea. So they then asked me what it felt like. I always use to tell them that it felt like a piercing hot knife travelling up my back and then disolving into a very frightening sensation. They looked at me even more strangely as you can imagine!
Anyway I digress, this ice was a strong'n for a complex partial it would have rated no 2, which on the protocol that I carry round in my bag states that 'this is a stronger version of a simple partial (as described above) when Nick has to sit down and cover both ears 'to block out the fear, block out everything.' This is actually a very good explaination because when I have a strong ice, it feels like the whole world is going to crash down on me and it's my way of stopping it. But as I got older I stopped doing it because when I sat down on the street, I'd get 'what's wrong?' 'Are you ok?' I wouldn't be able to answer, because I needed all the concentration I could muster to drive the ice away. In the end I found it difficult and embarrasing and eventually I stopped, saying to myself that it's mind over matter and I could train my brain to cope with the strong ices.
So there I am in the middle of the post office queue, my face completely frozen, my ipod turned off as I'm talking to the ice whispering to myself 'piss off,' making sure nobody can hear me. This gradually progressed to 'fuck off' as the fear became a vision of a Boering 747 landing on me, and squashing me into pieces, until I couldn't breath. Only then did the ice pass but I was left with seriously strong tingles. And then all of a sudden it wasn't just those daddy longlegs and tarantulas that were crawling along my right side. They'd called in the big enforments. Elephants were stomping around, trying push me over. I got really scared then, because knew I it was time to sit down incase I fell, but I was in the middle of the queue stuck between an old age pensioner who was the size of my great aunte Ro Ro (which is small) and a mother with two young children who were swinging between the rails like baby chimpanzees. There was no way out, so I had to hang on to the rail feeling elephant hooves punching my calf, hoping that my knee would buckle under. It shook with mighty force, I'll give you that but I wouldn't let them win. Five minutes later I couldn't feel my right side at all and my vision in my right eye was in a very weird state. I could see, but it was if it was being blocked. This must sound bizarre, and it's only something you can experience, nothing can explain how it feels.
Somehow, and I really don't know how, I managed to get to the front of the queue and then in front of a post office window. As quickly I could I asked the woman what I needed, breathing in, one, two, three, four, out, two, three, four, trying to keep myself calm, thinking to myself please please God don't let me keel over now.
Luckily I just about made it. As soon as I walked out of the post office I sat down. It wasn't the best place to sit, just by the letterboxes in the wall, lots of people stand and smoke there and so I was aware that I might be sitting on fag butts which wasn't a very pleasant thought, but needs must at this stage I had no other choice. I searched my bag for my phone, dial Mummy's office number....we have a brief conversation about whether I'm going to carry on or not. I want to carry on, she wants me to stay sitting down. It's called a battle of wills, a determined girl and a protective Mummy....but to honest I wouldn't have it any other way. The thought of having a Mummy that didn't care was just horrendous. Anyway to cut a long story short, I take 20mg diazapam and wait to see if I am able to. But after five minutes I realise it is impossible, the jungle that had possessed me, was shoving me down. But knowing that I'd done something to make them retreat, made me think that I could walk the five minutes home. So pushing myself up, I started walking, even managing to get to the other side of road safely. Once there, I scrambled around for my phone, phoned saying that I was on my way home. 'What do you think your doing?' she said, 'you need to sit down, where are you?' I told her I was outside the Adult Education Centre. 'Right stay there. Ant'll be down to be pick you up in five minutes."
So I slipped down the wall into yet another sitting position, this time looking left and right, not knowing which direction Ant's car was going to come from. It felt like I was there for ages. And then something happened that I wasn't expecting. A woman with blonde hair, wearing a green cardigan asked if I was ok. What was funny though, was she didn't stop, she sort of went rushing by, and turned her head backwards and asked the question.
I wonder if she'd have stopped, if I'd said no and told her I was about to have a fit. I'm sure that there are a lot more nice people than we give the country credit for, I remember feeling so lucky the day I had my worst fit because a friend of Ant's saw me having a problem in the middle Embankment tube station and stayed with me all the way through. God was smiling on me that day, I can tell you....
The thing is, those times don't happen very often, maybe it's because when I grew up the perception of having epilepsy was seen as a stigma....people didn't understand it, didn't want to understand it, epilepitics were best seen and not heard....that's how it felt when I was at school. It was like living in the dark ages when epileptics were believed to be insane and locked up in nuthouses, you just need to read the history books to find evidence of it.
So it's all down to embarrasement. But is it the embarrasement of the person asking because they don't know what to do, or they're afraid that we're actually just drunks hanging out on the street. Or is it the embarrassement of the epileptic? I know in my case, it's my own embarrassement, because of the perception of how I was brought up and that I have to live with the stigma.
Interesting. It's something I've never thought about before.
Tuesday 29 June 2010
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