My brain, again

At the beginning of the summer, I had a doctors appointment. I had been waiting for this appointment for around nine months (which was an improvement on the year that I was originally quoted!). Part A took place in London, and part B was closer to home, and for this one, I was required to bring support, so I enlisted the assistance of Robert, as he knows me well. By the end of the appointment, I had two things. A wet face and a diagnosis of A-typical high-functioning autism.

A while back this was called Aspergers but medical chaps and chappesses are trying to phase that term out as it means the same as high-functioning autism. I understand why people like the differentiation. The autistic spectrum covers a huge range of people with hugely varying behaviours. And to put everyone in the same box can feel somewhat misleading. Some people develop better coping skills, others not so much. I have been told that high functioning autism means autism without learning difficulties, but I don’t know how true this is.

What I do know is that as a woman, my chance of being diagnosed is only 20% compared to that of a man. Women apparently develop stronger coping strategies much earlier, thus it is less likely to be picked up. And everybody has quirks, things that would qualify as being on the autistic spectrum, but that does not make someone autistic. Having lots of quirks, that have always been present, does. I can never appreciate what it is like to have a neuro-typical brain and I guess the reverse is true too. (Incidentally, the a-typical bit means that I don’t present as a typical autistic person, in case anyone is wondering, I have exceptional coping strategies! I rock!).

When I first got my diagnosis it made sense of the obvious things, my social ineptness in unfamiliar environments, my broken sleep and levels of anxiety. But as I started to read up, it has become increasingly apparent that other things that I do are also common traits. Like rarely initiating social contact despite having lots of love for my friends. It mostly just doesn’t occur to me. And if I have one appointment in the afternoon, my morning will most likely be entirely unproductive until that one thing is done. I was diagnosed as hyper-sensory in my early twenties and apparently, this is true of almost 80% of people with autism. When Robert recently got into my car in the evening, having used TCP disinfectant in the morning, it was still strong enough to make my eyes water. And I should probably not share the most voraciously grim smell that I could smell in Kate’s car recently that no one else could.

The biggest contention is how I think. I never stop, even when I am sleeping, my brain is running variables on situations and I have to make a conscious effort to stay asleep. And am not just considering one thing, it is usually two or three. sort of like listening to piece of music and being able to pick out every instrument’s melody. Or maybe more like listening to a few different pieces of music at the same time and being able to follow them all. Curiously, analogy aside, I find that listening, playing or dancing to music really helps my brain to switch off its usual chatter; the quiet is sometimes nice. I recall an ex once asking me to tell him everything that was on my mind. Forty minutes later he was looking like he had just been steamrolled into oblivion and back. He was a brave man to ask that question!

The most utterly best thing about diagnosis is that I seem to be going easier on myself. I am not judging myself as harshly when I struggle with things, which has led to me mostly feeling a lot calmer. It is also giving me permission not to do everything just because I feel I ought to. This is massively empowering.

I had many reservations about writing this post, but it has been on the forefront of my mind for a while and has made writing other things more difficult. I am also aware that this might change how others perceive me, but that is ultimately down to them. I am no more or less me than before my diagnosis, but I am happier.

Map Point. What am I scared to say?

Photo note, I love liquorice allsorts, but not the fondant, they are the wrappers to the good stuff!

 

Skill up

The Summer of 2017 was a most excellent one. I enjoyed family holidays and lots of chill time with my daughter. I asked her at the beginning of the holidays if there was anything special that she would like to do, and she said yes, she would like to go to the circus. I had sort of been aware that I hadn’t sorted anything out, but as the last week of the summer break approached, I remembered a flyer that I had picked up earlier in the year. It was for a circus that was only a half hour drive away. Win!

The name of the circus that we saw was ‘Nicole and Martin’s White Tent’. It involved two performers (Nicole and Martin I presume) and a child that was possibly their son, who came on a couple of times throughout the performance. And it was magical. It was the kind of show that allows adults to see as the eyes of children do, with wonder and amazement. Everything that the performers pretended to see, I could see too, with sharp clarity. And it was beautiful. My daughter laughed so hard that she went bright red and tears streamed down her face. It was a high point of the summer.

After the show, I started to think about the skill sets that I had witnessed that were employed by Nicole and Martin and how truly incredible they were. I saw them play clarinet, trombone, tuba, flute, trumpet, piccolo, violin, double bass and a host of percussion instruments. The both sang beautifully too. This was accompanied by juggling, magic and acting along side the myriad use of a small selection of props. There was also the acrobatics, the displays of balance and strength that were utterly astounding (think you can plank? try that on one hand, whilst balanced on someone else’s head, whilst they walk around.. whole new level!). And if that was not impressive enough, they also perform this whole show in at least four languages. In short, I was awed.

I can’t speak any other languages (am attempting to rectify), I can play maybe two instruments and I have never been able to touch my toes. It is desperately easy to compare myself to others and to come up short. There are so many amazing people in the world with skills that I will never have. I could see this as inspiring and could attempt to learn all these amazing things or I could simply be grateful to have such beauty in my life and appreciate the skills that I do have. I am not less by seeing greatness in others.

Map Point. Have I learnt not to spread myself too thin?

First

My friends Robert has just purchased his first car, it is blue and has two seats. My first car was a racing green Triumph Dolomite and she was beautiful. Until she rusted, when another whole Dolomite was bought to replace the bits on her that were turning that glorious shade of orange. I then gave up both cars as a bad job and bought another Dolomite with slightly less ‘flake’ about it. This one also went to the great garage in the sky and I then got a more modern car which I didn’t fear for when the air outside became damp. But my first car, she was beautiful in a way that no other car since has been. Firsts are important.

I remember my first pair of trainers (bought from a catalogue) and they were Reeboks, my first jeans (Levi), my first ‘designer’ t-shirt (poco loco) and the first time I tried sun dried tomatoes (mana from heaven!). I then pondered if things that aren’t firsts ever have the same sort of impact?

I then remembered a particularly spirited discussion I had with someone. I have been something of a Nirvana fan since my teens (when Kurt Cobain was still breathing) although I never saw them live, which retrospectively was a disappointment. I made the statement that seeing a band live was the most authentic experience that you could have of them. The other person contended that a fan is a fan, irrespective of anything else.

Being a fan in that ‘first wave’ is more authentic experience than what future generations could have. This isn’t to say that supporting any band that is no longer in existence makes you less of a fan (most of what I listen to isn’t exactly ‘current’) but being around at the same time as a particular band does give you a different appreciation. You are living through the rest of what is being offered in the current music scene, along side the current political and social scenes as well. Retrospectively we can all have an appreciation, but it will never be the same experience as living through something. It is a different sort of ‘first’.

Then I think back to my car, and realise how different material things are to experiences that we have. I wasn’t the first person to own the car, didn’t own the car when they were first released and were a common sight, so I guess that I lost out on the camaraderie of that. Which would make my friend right, as I likely loved my car as much as everyone else who owned it. But the experiences that I have had, the bands I have seen live, this will always be a more authentic experience to me than anything second hand can create.

The older I get, the more I value authentic experiences. Maybe this is a mirror. The closer I get to my authentic self, the more I crave this same immediacy elsewhere.

Map Point. What is my definition of authenticity?

 

 

 

My most glorious evening

Most of my friendships are what I consider sometime friendships. They are not based on seeing someone often, just every so often. This is no way reflects badly on the friendship, and it is a truly glorious thing to have so much news to catch up on!

I had an unexpected evening out with Kate. I had some free meals at a local restaurant and my daughter who I had intended to go with got a better offer with friends so I was faced with a conundrum. Do I not go, eat out alone, or see if anyone is free. I looked at the menu and made the choice that I was definitely not going to miss this meal. Options two and three were looking good!

I think I was around fifteen when I started doing a lot of things by myself. I think it was cinema first. To me, there is such a delight about going to daytime cinema Often I have been the only person in the cinema, they show the film just for me. Then the meals started. I have always been a prolific reader, so would simply take a book with me, and eat delicious food whilst engaging in some marvellous literary work. Not having a book isn’t a problem either, but I think it makes other people uncomfortable. Sometimes.

One of my most culminative independent activities was going to Stratford-apon-Avon when I was twenty-one. The few day away were planned with the skill of a military logician. I made a series of four cassette mix tapes from all my vinyl to keep me entertained for the multiple hour coach journey. In fairness, they did get dull after four days away, I like lots of variance in my music and four cassette tapes was simply not enough. I stayed in a Posthouse Forte that was most glorious (my own bathroom!) and went to the theatre three times (Cymbeline, Merry Wives of Windsor and Much Ado about Nothing. I also engaged in a night time theatre tour and went to the church that Shakespeare is buried in. Allegedly.

When I want to do something, often it doesn’t occur to me that anyone else would want to join me in said activity. Similarly, I love my friends deeply, think about them often, but only sometimes do I initiate contact or meeting up. My diary is a blurry mess of scribble and sometimes the prospect of putting extra ink onto a page feels heavier than it should. I also know that my friends are just as busy and sometimes I have too much story to tell.

Seeing Kate was awesome, we watched fit and healthy people exit the gym close by as we ate copious amounts of deliciousness. On the way home I bought some nail glue which I then proceeded to cover me and Kate’s floor in (requiring brake fluid and thinner to remove). So other than no longer having nail glue privileges, I had an amazing time.

Map Point.Where in my life can I express myself better?

 

All hail the bucket

Music festivals are definitely one of my happy places. I have not been to one in years, but during my twenties, I went to a fair few, and they were so much fun. One year I went to Reading Festival with Kathryn. We were prepared. We had purchased a tent, which apparently is helpful, food, and other essential liquid provisions. We were packed and ready. My then boyfriend was driving us down with his friend (they were possibly going fishing for the weekend) so off we all set.

We had been in the car about five minutes when a reality struck. We had forgotten the eggs. This was not catastrophic, more eggs could be purchased. We could move on from this minor error. Another ten minutes down the road it transpired we had forgotten the tent. We had to go back for this one, it is allegedly a central tenet of the camping experience. And neither of us felt mad fussed about dying from exposure. So the journey continued uneventfully until we got to Reading, when the traffic started to move woefully slowly. It was a hot day. Eventually, we got out of the car and went to the place of festival, only to have to return to the car some minutes later as we had once again, forgotten the tent.

Likely the best thing that I packed for the trip was a bucket. This bucket proved king! It could be sat on, used as a makeshift table and also used to carry stuff. I seem to recall on the first day we walked into town and purchased new speakers for our little walkman so we could listen to cassette tapes of the bands that we loved when we were not seeing them on stage. We were all set up, we had the basics of festival camping – music, alcohol, food and shelter.

Two things stand out about the first night, the first was the marvellous game we played whilst engaging in the second thing that stood out massive absinthe consumption. The game involved us stretching out our guylines as long as possible (all the tents were closely packed, most people had not bothered with the luxury of pegging their temporary domicile to the ground) and waiting for drunk people to walk into them. They did, often, and will much profuse apology. I don’t believe we actually injured anyone, but after an hour or so, we upped pegs as we feared for the structural integrity of the tent.

I wish I could say that we saw more bands, but we utterly didn’t. Camping is hard and with effort, so we agreed that as long as we saw two bands each day, that would likely see us through. There are bands in the lineup that retrospectively became some of my favourite artists, but I never saw them at the festival, because as previously stated, camping is hard.

We did manage to wash our hair each day using only a bucket of water each (the bucket rocked hard!). Kathryn made some seriously inedible noodles topped with processed cheese (muchly poor choice) and I didn’t wander off and get lost too badly. And when we did make the effort to see some bands, we almost got to the front.

For those unfamiliar with making it to the front at a festival, it basically involves using all your body weight to manoeuvre forwards whilst simultaneously getting to know around eight people all at once, incredibly intimately. We watched the Foos. Dave Grohl is a festival legend. It was starting to rain, the floor was becoming a little muddy underfoot, and on the cool night air, we could see the steam rising from our squashed together bodies. And then Muse came on. And the jumping started.

If you didn’t jump you were at risk of falling over, if you did jump, slightly less risk, but still a strong possibility. People were falling down everywhere, and whilst people were helping them back up, me and Kathryn decided this might be a good time to exit the masses and return to the ‘oft left behind’ shelter. In this chaos, I lost a really good hoodie. When we finally downed camp, we found an abandoned supermarket trolley in which we put all of our stuff. This was a godsend on route to the station.

It was an incredible few days and one for me that transcended the simple act of going to a festival. I was going through the motions with my life, nothing new, everything just ticking along. Taking a step back from my ordinary, seeing my life with a fresh perspective was a definite start point of an ongoing adventure.

Map Point. What do I see when I look at my life from an outsiders perspective?

 

 

Sunny days of melody

The first singles that I ever bought were ‘Hey Mickey’ by Tony Basil and ‘Come on Eileen’ by Dexys Midnight Runners. I feel proud that my first foray into music was with two such legendary songs. Today I have been thinking about other songs that have inspired me, moved me to a new way of thinking, with their melodies and lyrical poetry. Here are my first three.

‘Newborn’ Elbow

Elbow was one of the bands that I found whilst listening to the radio. It was on XFM before it went too commercial and it played so many new and amazing tracks. I was sitting at work. At the time I was working as a research archivist at loss adjustors, which is basically the company that haggles for the insurance companies in event of a claim. I worked in the downstairs that was seldom used, so I was mostly by myself, surrounded by thousands upon thousands of case files. My job was to look after them (I didn’t read them any bedtime stories) and produce statistics. So, for the most part, I could listen to the radio. I was sitting mid-stack, siphoning off the files that were bound for destruction and I heard an ethereal voice issuing from my little box of noise. I remember stopping, inhaling this haunting melody deep into my being. The lyrics were in sharp contrast to this beautiful cadence. It was a song about love, about an all-consuming love that a person can surrender to in entirety. I became a quite a fan after that one song, although never saw them play. I think that would have been nice. Several years later they won some quite big awards and broke into the mainstream. But for me, that first song, and the first album that I heard will always make me pause, breathe deep and smile quietly inside.

‘Every Me, Every You’ Placebo

Placebo is a band that I have seen. Once at a festival where they were not very good and once at the Astoria, where they shone. It was a small intimate gig, and so much fun. It was also the night where someone from the mosh pit fell into my right shin, causing unspeakable agonies. On the train home with my friend Tina, I untied my high boot and discovered that it was bruised from knee to ankle. But it didn’t hurt, so I untied the other to discover that I was not in fact bruised, but with the dancing, the sweating, my legs were stained with dye. Not sure if the expected bruise ever materialised. But it was an epic evening. ‘Every Me, Every You’ was the first song that I ever heard from Placebo, only it wasn’t. It was the first song that I recognised as Placebo, but when I heard their other songs, I already knew them. Sometimes bands can go like that, blend in with the hub until one song makes them stand out. The song was later used in the film ‘Cruel Intentions’. There is so much energy to this song, I have never really pondered the lyrics too much (but I am word perfect!) they are dark, but hint, for me at least, towards ideas of authenticity. This is the biggest draw to me with their music.

‘Fire and Rain’ James Taylor

I can’t remember when I first heard this song, but know that it was in a film that I watched when I was around fifteen. I found so many songs this way. This was in the days pre-internet, so it took me a goodly time to track it down. I have never felt confined just to listen to what was current, there is always more that you can find looking back. Some songs when you hear them, take a little bit of residence inside your chest and stay there. Every time you hear them, the world seems brighter. I found out the meaning and correct lyrics to the song many years later, which made me love the song all over again. I love the honesty of committing those sorts of feelings into words and then elevating that further with harmony.

Map Point. What songs in my life have the most memories?