I am terrified of using a strange toilet and will do anything not to go near a public one. A bush is fine or squashed between the car and the open door. Other people say that they have it too, but they mean that they don’t like the mess or the lack of comfort or even maybe the smell. I worry and shake and picture what it will be like for days before and for years and years afterwards. As I approach an unknown loo, my mind will sift through every picture of everything that I have ever seen. The overflowing youth hostel in Greece in 1987 to the train station in Ayutthaya last year. I don’t want these images in my head and want to tear out my eyes so I can’t see them anymore. But they would still be in there because they are a constant feature of my nightmares too. I am frightened of what I will see or hear or smell. I am told that I talk about every visit to the toilet far too much, but once I have seen it, it is too late. The image is stored, and I will see it forever. I start to retch even before arrival in the cubicle. Well, first I cough and then I retch. It is the same with travel sickness. The coughing is the warning sign. And the exact same thing happens if someone else is sick. For years, Pete has had to mop up the car sickness because I run retching into the hills.
Getting lost inside.
This is still a toilet thing normally. For some reason, I get lost trying to exit the ladies’ loos in hotels and restaurants and any other unknown building. I managed to get in there but getting out looks completely different and doesn’t have the same signs to guide me. If I remember, then I turn around on the way in and try to remember the exit. I tell myself the directions and try to picture something that will help. Ok, so you have to go left and then past the plastic plant and round the back of blue table. I end up standing somewhere looking around and have a small panic about where I am. I know that it will be ok. I can’t be far away but for a moment I panic about how this has happened. Why am I so stupid? I used a hotel spa with various saunas and strange steamy things once, but I couldn’t remember which was the exit door. I didn’t try for very long, couldn’t find it, and sat down and cried. When I finally escaped, I was drained and shaking. Everyone else thought that this was very funny, so I tried to pretend that I thought the same thing. I have learned that being funny or doing weird things is why people like me, and so I indulge in this with them.
I have always wondered why I get really flustered and uncomfortable in these large shops. I had no idea that there was such a thing as Asperger’s for women and had never considered having sensory issues and overload. Even if I had been told about these things, I would most definitely have denied that they could affect such a sociable and successful individual as me.
Firstly, I always get lost. Well, more disorientated than lost, since I have no clue where I am supposed to be going anyway. I can’t find the stairs and can never exit in the same recognisable place that I entered. I feel really hot and dizzy; my skin feels prickly and itchy. I have always presumed that I am just a rubbish woman who doesn’t understand how to shop. I can take my coat off but then holding it on one side feels irritating and wrong. It’s the same sensation with hand-bags. I can cope with a cross body strap, and in fact, love having my things pinned to my front where I can see them and easily access them. I prefer a backpack, but then it becomes awkward and complicated to remove and swing to the front. I then end up kneeling on the floor rummaging to find what I need. Not at all dignified and I feel like the grandma who can’t find her purse. But a normal type of hand- bag only sits on one side which is very uncomfortable and wrong. I can’t run with just one water bottle on one side for the same reason. One in each hand is fine. Maybe I need 2 identical hand- bags?
Back in the store, I wander around looking at things from a distance. Sometimes I touch something, and I know that the material is too scratchy. I love a fluffy fleece really, but Pete thinks that I probably have enough of those already. I also like soft velvet but touching that makes him shudder, so I tend to stay away from it. I can’t stand fuss and frills, lots of straps, or dangly bits, or tassels or belts. I gravitate towards things that are bright and patterned but force myself away to look for something more sophisticated. But I have no idea what on earth that is or what that means. I don’t know which me I am anymore, so I have even less idea who it is that I am trying to dress.
Gifts – why should I see this? (The line in my head is Mrs Bennetts!)
The absolutely worst thing of all is receiving presents. I have kept this hidden from at least most people for most of my life because I presumed that I was a really unkind and ungrateful person. I have not kept this hidden from my family who therefore think that I am an unkind and ungrateful person. I have listened to my son say that the convention of surprise gifts is ridiculous and why should he buy something for someone that they haven’t asked for and probably don’t want. Although I agreed with this, I also recognised that this is not the perceived wisdom of everyone else and so I tried to do it their way.
I only succeeded a little bit, on occasions, but I really did try. I start to worry and panic days before a situation that might result in a gift. I practice my responses days before. Why would I want something that I didn’t choose and probably don’t want? Why is this something to be grateful for? Why do I have to pretend to appreciate something that I don’t like, don’t want, probably don’t need and did not have any involvement in choosing? Why can’t I say this without causing offence? Being given a gift that ‘isn’t me’ really upsets me and it can be days or longer before I calm down or stop thinking about it.
I have never wanted to lie about gifts and have found that really difficult and ridiculous, but even worse was Father Christmas. I did not understand why we were going to lie to our children about some crazy man who would only visit the house if they were ‘good’. And I did not understand why they should get lots of things for which they did not need to thank anyone and did not even need to respect because they could always point out that we didn’t pay for it. I said that it would backfire and that our son would be really upset when he found out. He was. He couldn’t comprehend why we had lied in this way and I completely understood but again was sucked into conformity and told him that everyone needed a big of magic. Lying is magic now is it? I will never understand people!
Why must I wear extra layers of material containing hooks and clasps and fiddliness beyond comprehension? For years and years, I refused to wear a bra, and if possible did not wear knickers either. Trying to get into a bra is an obstacle course waiting to trip you up. The clip has to be controlled at the front, but then needs to go to the back, and the straps need adjusting but I have to take the entire thing off to do this, and if they are not entirely equal in position, then I need to start again. The bits of plastic that control the straps are far too painful to be placed directly on my shoulders, so the bra is probably too tight or too loose, and why must I have a piece of metal intruding into my front. How is this helpful? Knickers do not present the same challenge, but they are uncomfortable. I only want to feel one layer of fat wobbling about, and knickers encase some of the skin, but let the rest creep over the top. If tights are needed, then this is a disaster because they do exactly the same thing, so why wear them both. And, I have always put another pair of knickers on top of the tights because I hate the sensation of slipping and moving. Reading that back now, I do wonder if that is normal? I have always thought that I could easily get into being a naturalist: just so much easier.
Clumsy and clothes.
I break everything. The delicate necklace chain, the pearl bracelet, every light fitting and smoke alarm that I have ever tried to fix, scissors, tin openers, glasses, tubes of toothpaste and anything remotely fiddly really. And everything else breaks me.
Chopping vegetables always makes me shake and I have never understood why, but it was only when my physical symptoms became unmanageable that I started trying to find help and diagnosis. I am incredibly frustrated if I can’t do something; I am angry at myself for not being good enough. I tell myself to concentrate and to stop being so stupid, but I can’t chop, and I can’t cut and normally spill, splash and drop everything. I can manage to grate cheese and carrots, but only as long as everyone is fine with the skin from my knuckles being included in the dish. I do have a food processor that could do this but I pushed the carrots in too far and too hard and so broke the bowl and covered the coleslaw in shards of plastic.
Trying on clothes is a physical attack on all of my senses. The heat, the confined space, the forced multi-sided views of my body and then the top, which has probably been tried on by someone else. The label gets twisted and my arm doesn’t fit. If there is a small thread, I pull it and the top unravels or the buttons pop off and I try to escape. I’m not sure what I am doing when I try to buy clothes. I feel like I am rehearsing for a new play and need to assemble some props. What does this character need for this role? How do they want to be seen? Do they want to be seen at all? I gravitate to very bright clothes which my daughter says are too childish and calls them my ‘toddler tops’. I thought that these things were just external displays of my outgoing and extrovert personality. If this is not really my personality, if not knowing what to say, or how to say it, or when to shut up, is not actually a sign of the super confident wacky out-there person that I thought I had created, then maybe these clothes aren’t mine either?
I love wearing hats. Woolly hats are my favourite and I am rarely seen without a brightly coloured hat from the end of September until at least the next May. I find umbrellas far too fiddly and too lop sided for my body so prefer a hat just in case. For the summer I have berets and caps of all shapes and sizes. Everyone tells me that I am really brave to wear a hat. I don’t understand this at all; I wear a hat for protection. I feel that I am less able to be seen if I am wearing a hat despite the very obvious fact the opposite is actually true. When I was interviewed by the American police who thought that I set fire to the house, I found a charity shop and bought a hat. I felt braver somehow.
I wonder if it is this pressure to conform that causes so many of my physical symptoms. I can feel my hands shaking when I try to wear a pretty piece of jewellery that has been bought for me. Often, if it is particularly delicate, I break the chain or the clasp within seconds of taking it out of the box. And if I do manage to extricate the item from the packaging then I will immediately get the chain tangled and knotted so that it is unwearable. Who invented something so stupid that if moved it ties itself up in knots, and also, why should I want something so sexist that I need a man to fix the ridiculously small clasp for me? It makes me feel uncomfortable and I don’t know why. I think that this jewellery looks like something that a sophisticated, grown up woman should be wearing. I can see that, and I can say that to myself, but I don’t understand who that woman is, and it certainly isn’t me. And because I don’t believe that this is intended for me, I make the natural conclusion that the gift giver does not like me and that they are trying to change me into the sort of person who would be able to cope with delicate and feminine chains of gold. I shake when I am trying to put make-up on and even when trying to dry my hair. I smear the lipstick across my teeth and blink so often that I need to remove the mascara and start again. Don’t get me wrong, I really like to look nice. In my head I want to look nice, but my body often disagrees, and I just can’t get it right. I think that maybe my body is shouting at me for trying too hard or being too fake or maybe I am just too clumsy.
Nail polish. Why?
Sometimes I try to be feminine and paint my nails. Most times, because I have no patience, the colour is smeared before it has had chance to dry and I remove it again. If I do manage to create a coat, then within an hour it has started to feel like an intrusion on my body and I start to scratch it all off. I even scratched off gels, which I am told you are not supposed to be able to do. Finger- nails annoy me too. They hurt too much and so I cut them short. And as for facial hair, is it supposed to be that painful? How do men cope? I can feel a solitary black hair starting to force its way out and am inconsolable trying to scratch, pick and pull at my skin.
I thought that all of this was normal, but now I am wondering?