Category: mind journey

Perpetual Grief

I have experienced meltdowns for about as long as I can remember, such is the joy of the autistic human! To the outside onlooker it might look like I am upset as I usually cry, or agitated as might rock, or pace, or just be being obstinate or aloof as I don’t talk. So I thought I would try to explain what I feel on the inside.

It usually starts with a sense of disconnection, feeling that, even if I am surrounded by people, I am utterly alone. I know this feeling is common for lots of people, if not everyone, but that for me is the start. This can be triggered by, well, pretty much everything. I am also hypersensory, which pretty much does what it says on the packaging – noises, textures, visuals, smells, even tastes, can all create this feeling of disconnect for me. The world can be a scary place. Once I lost two hours of my day because someone brushed past me in the street, whilst I was wearing my new coat (only been hanging in the wardrobe for two years at this point, things need to acclimatise!) and as I had not fully pondered the new fabric (it was in the wardrobe doing the visual, not on my arms doing the ooh.. fabricy fabricy feeling!) it dragged funny. It felt horrifying. And more importantly, it felt new. So my brain needed to fully process this exciting new development. For two hours. Even writing this down, it feels ridiculous. For two hours, I hyperfocussed and cried over a weird sensation that my new coat created. But back to the start point, what does this actually feel like?

It feels like grief. Imagine the most intense sadness you can, the most brilliant white light of emotional agony, and then imagine the absurdity of someone asking you if you are alright? In this grief state, there is no room for questions, no room for answers, I am screaming so loudly, and I can’t make a sound. My verbal communication disappears (but I can usually type or write) so I cannot even tell anyone how bad things are. It’s now as if I am completely disconnected from the world and am consumed with such an intense grief, that if this goes on for more than hour (and sometimes, particularly if I am alone, several hours), it leaves me in a very dark place where thoughts of self-harm have been a feature. It is nothing I would wish for any other human, but sometimes I wish I could explain what is happening, as me being like this, breaking like this, causes people to distance themselves. This compounds things. Obviously. It isn’t that I am sad, depressed or looking for attention, its that the wiring in my head (if ever you have an idle five minutes, check out autistic brain scans, they are all different! Neurotypical.. all the same..) is different. My processing of the world is different, not better, although being hypersensory around bread baking.. I could literally lay on the floor and achieve mastery levels of meditation within about 4 seconds, and those 4 seconds are just me getting myself comfy – the world is no more, there is only bread smell! So maybe it is sometimes better, but largely it is just different.

I have explained to those closest to me what I need when I have a meltdown. Mostly they neve just go from zero to sobbing on the floor within two seconds. I usually have time to ask someone for help. That has been a critical learning curve for me. Getting diagnosed meant I understood what was happening better, and through that, could put systems in place to make things easier for me. I phone people and ask them to talk at me. I do not want questions, ‘are you alright?’ is about the worst one, as then my brain, clearly knowing that it isn’t alright then realises that it is obvious to others that I am not alright, process cycles round and round.. What I want is to hear about someone else’s life, what they have been doing with their day. It can be as boring as anything, and it grounds me. I don’t want to hear about me. If someone is in my space, then a huge extended hug often helps too. Both of these things reset my head space and I can be connected and in a happy place again.

Map Point: Where do I still need to ask for help?

There is something stuck to my sock

Only it isn’t a random something, it is a piece of Marmite flavoured rice cake, which I sometimes have something of a weakness for. I tried agitating said crumb away from said sock, but it seems attached. So until I decide to move, it can likely stay there. It occurs to me that a lot of things in my life are like said crumb, I don’t do anything about something until I can cease the inertia.

I guess it isn’t always inertia, sometimes I am really busy and simply don’t have time to contend with everything. Even the stuff that is aggravating. Sometimes, especially the stuff that is aggravating, I think about the times when I have been upset or cross with someone, and rather than dealing with it there and then, I have ignored it, and hoped that it would go away of its own volition. Self-removing problems. Something knows it has been aggravating, so simply ceases to be in my presence.  Win! This sounds marvellous on one hand, and utterly disempowering on the other.

Choosing to remain in low key frustration to avoid any sort of confrontation is something that I am really good at. Almost a CV worthy sort of skill. I have laughed and joked with people that have made my skin itch. And the thing is, me feeling frustrated is nothing to do with them, and everything to do with me. If I choose not to deal with things, then that is utterly on me. I can’t blame the crumb for attaching itself my foot. But it is now my choice as to what I do next.

Map Point. Are my pockets full of crumbs?

 

 

There are fish in the sea… and octopuses

No one sees the same world. I recently read something about how everyone perceives each person differently, creating their own image. And even you see yourself in different ways, trying to reach an authentic sense of self. And sometimes wondering if such a feat is possible.

After my ASD diagnosis last year, I read a good deal about autism. One of the key things that stuck in my mind was the rate of diagnosis between men and women (around a four to one ratio). So as such I signed up with universities that were conducting ASD research, as clearly more is needed! This week I got to wear a funky little cap whilst watching my brain waves appear on a screen. (I recommend this in its entirety.. I got to watch what my brain does when I blink!), but what struck me more through this process was how I regard others, and then conversely, how others regard me.

In this instance, I was person number 130 and the other person was a person completing her PhD. She regards me as a conduit to continuing her work, and I regard her as providing me with an excellent morning’s entertainment, complete with a hair washing interlude, EEG’s are messy!

But then we started talking, she was very concerned about a possible cancer scare and we started talking about waiting times and healthcare. Then I spoke about the delights of the place I live, as it is also her favourite place in the area. It is too easy to see people in fixed roles. That person in my doctor, that person is my mechanic.. It goes on. It seems too easy, however, to only see them as this singularly dimensional being, and if I want people to see me as complete and multifaceted, then perhaps it is time for me to extend that same courtesy to others as well.

We are never just one thing.

Map Point. Do I fear authenticity?

Badger for five points

I have this game that I play when I am on long car journeys with other people. I guess its a kind of like poker, but instead of cards, it involves animals that have met their untimely demise whilst investigating all that tarmac has to offer. Usually a more two-dimensional experience. But to break up the miles, and to alleviate the horror of so many ickle, smooshed-up fuzzies, the rules are as follows.

  • One point for unidentifiable roadkill, the completely flattened variable of animal squoosh.
  • Two points if the mess is recognisable as a bird
  • Three points for a mammal
  • Five points for a badger

The first person to reach six points is crowned the temporary winner. It is a somewhat hollow victory as I don’t think that being able to identify carcasses on the roadside is necessarily a skill that I would add to my CV, but it does serve as a temporary distraction. As a small addendum, if anything bigger than a badger is ever spotted, then its game over for that day. I once saw a horse in a lay-by. It did not make for the happy.

I am not sure why the badger became the holy grail of roadkill poker. I find badgers entirely majestic creatures. Once when travelling home late at night, one galloped (no word of a lie) across the road in front of me. I did not hit it, but I muchly enjoyed its apparent nonchalance. The badger could quite frankly have been terrified life for its life, but to my generalised perception, if I had to personify said badger, it was the king of all animal existence. It sauntered, smoked a cigarette (possibly whilst wearing a tiara) and gave me the eyeball as it crossed my path. Badgers are truly exceptional. I have also heard that hitting a badger can entirely write off a car. I would not be surprised if this were true.

I think that finding a way to come to terms with the random destruction in my environment has been really hard for me. So many things are so utterly beyond my control and that thought is almost as painful as the actuality. Sometimes I look at my friends and know that whatever words I have, however hard I listen, it just doesn’t feel like enough. Some stuff is so big. I can never truly know what anyone else is going through. And then I wondered why I felt I needed to take on the pain of others. Maybe just being present is enough.

But back to the badgers. The honey badger is my favourite animal. They can take down lions.

Map Point. What is important for me to acknowledge?

 

 

 

My little angry

This morning I was angry. Robert had double booked me with something else. It isn’t as if I have never done this. Countless times I have had to reschedule, but for some unbeknown reason, this morning I felt really angry. I felt sidelined, rejected and suddenly it was all I could think about as I was on route to meet him. Now at this stage in my anger, I am generally unable to look at the person until I have calmed down. Am really not sure why, maybe I might shout, or more likely I have to confront the feelings head on. And in absolute fairness, I would rather they just go away, just dissipate into the ether. When I saw him I told him I was angry, he accepted my angry, then after ten minutes of a hard run (we were at the gym) I felt much better and service as normal resumed. The most resounding positive that I can take from this was that my sprint at the end was a half minute longer and faster than it has been. Anger is curiously quite motivating!

Several thoughts occurred to after this experience. Firstly, Robert is one of only a very small handful of people that I can admit to being angry with. After I voiced my angry, I do feel a lot better, it is empowering. But I seldom ever do this. People have let me down in so many different ways and I instantly forgive them. At least on the surface. I make excuses for them, work out the motivations for their (appalling) behaviours, but I don’t confront. Inside I seethe and just get a little bit quieter on the outside. Generally, if someone causes me too much pain, I simply distance myself, as no one of a healthy and sane mind actively wants to cause themselves harm. But what would likely be even healthier for me? Actually resolving the issues that others create in me.

The other thing that I have learnt, quite some time ago, that I am not, in fact, the centre of the universe. As a child, everything is about us, every slight is deeply personal, every joy was sent to us gift wrapped. I know that many of the issues that make me angry have utterly nothing to do with the person creating the issues. Everyone has their own stuff. Rarely (I hope) would anyone wake up with the sole intention of causing someone else harm, but I am not naive in this either. We are all getting through as best we can, and sometimes, that does seem to involve making other peoples lives difficult. Everyone has triggers on the things that make them most angry. What will incense one person will not even be noticed by the next.

I love that I have a friendship with someone who I trust enough to share my angry. I feel good that my increasing self-confidence has allowed me to express how I feel, however dark that is. It is also good that Robert did not become defensive, instead, he listened.

And my last thoughts on this for now. Gym time is sacred Robert, mess with it not! (but if you do, we are still all good!)

Map Point. Where do I feel safe enough to express how I feel?

I am single

I have been on my own, single, without an other half for a fair while now. Years in fact. But the assumption is always that I will meet someone. Eventually. I was out recently with Robert and I bumped into someone that I had not seen for a while and her immediate presumption is that he was my boyfriend (he isn’t) but I get that. I guess if I see someone that I know is on their own and they are out with someone new, then I sometimes make that same presumption too. It is tricky.

I guess for me, the presiding issue is that I seldom, if ever, find anyone else attractive. It isn’t that I don’t admire awesome qualities in others, or appreciate the pretty (I utterly do) but I look on these qualities with the same sort of admiration that I apply to lots of things, a beautiful sunset, a Lichenstein painting, the complete Oxford Dictionaries. I love them all dearly, except I don’t want to take them home and keep them forever. Okay. I lied on the last one. I would absolutely love to own a massive set of a letter a book dictionaries. But essentially, I hope my meaning is clear. I have to have a lot of love for something to want to engage with it further.

Sometimes I do. But there feels to be a social pressure to this, until I am coupled off, I am unresolved, thus other people feel a need to see me ‘complete’. But what if I never have that sort of relationship again? Was chatting with my daughter about how she might feel if I had a relationship with someone and her resounding answer was ‘that it would be weird’. I agreed.

It isn’t that I have resolved to never fall in love and do the things of relationship. In the past, I have completed two seven-year stints at this, but I can’t judge my now against this sort of standard. What I wanted back then is not necessarily what I want now. So perhaps it would be useful to spend some time working out what I do want.

It is still the dictionaries.

Map Point. Am I still judging myself against past wants?

Permission

Over the last few days, I have been thinking about permission. What I allow myself to do, and more importantly what I don’t. Some of those things I know are based on fear, and I guess I will get to them eventually, but the ones that have no particular reason felt somehow more interesting, more important.

Buses in London. For years whenever I have travelled around London, I have done so by the tube. The Tube presents me with a wonderful map of exciting coloured lines that represent whole galaxies in my estimation (though realistically a fair few miles square). It is organised. I know that from my usual mainline station, it is four stops south on the northern line, followed by a couple of stops westbound on the circle and district that will take me to a not too shabby noodle place followed by the magnificence of Tate Modern. Has it ever occurred to me to do this journey on the bus? Not once. However, upon going to London with my Mum (who used to live and work there) I discovered she is massively bus proficient. She crosses bridges, ducks down side streets and somehow finds her way to wherever she needs. She is a bus travelling divinity. And for me, someone who doesn’t get to London very often, it is actually really nice to see some of London, the architecture is incredible, the shops, the parks. Which makes it more exciting than zooming through the blackened tunnels. But until my Mum showed me the way of London Bus, it never occurred to me they were an option.

In a practical sense, permission is easy, once someone else shows you something new, it is easier to replicate than having to forage your way alone the first time. But what about the emotional permissions that I have not allowed myself, stemming from lack of confidence and lack of self-worth? These ones feel much harder to overcome. The times I have held back, not through lack of skill, but through lack of voice or when I have felt alone and wanted to reach out to someone, but didn’t want to bother them. These are the permissions that feel like restraints, and they do not serve me.

It is really difficult sometimes to feel that I am allowed to ask for help, to feel that I am valuable, not only to others but to myself. And then I considered this. It isn’t permission I am looking for, its trust.

Map Point. Am I being honest about my motivations?

 

Growing green things

The first plant type things that inspired me enough for ownership were cacti. I was in my early teens and I loved the strange mystery of this previously unknown plant. I had several of them. I remember one afternoon hitting upon the most marvellous idea that if I put a huge block of ice on the cacti tray then it would melt slowly providing watering for several days. By the evening (it was summer) the tray and my window ledge had flooded. I learnt how fast ice melts which was likely a useful thing to know. I discovered several years later that cacti are more likely to bloom if they are not regularly watered. So my efforts concerning their daily deluge were somewhat redundant to begin with.

The next thing that I grew was a kombucha mushroom. I was given my ‘starter’ mushroom by my reflexologist. I bought the required bowl (this was at age nineteen, this bowl lived a long and happy life until my daughter’s dad managed to drop it on the floor some twelve years later. RIP epic bowl, may you be resting in kitchen paraphernalia heaven) and all the other bits too. The first mushroom worked beautifully, and the ‘tea’ that was produced was most excellent. The second time my mushroom went mouldy. I did not pursue this a third time, as the prospect of actively growing mould in my bedroom, was not something I had any wish to repeat. (Cue the miniature drawers on my Sindy Kitchen, in which I crushed some grains and mixed them with water. I then left the moosh to grow. I was five and I can still remember the acridity of the smell now). I also grew a crystal (it was blue), potatoes at the end of the garden (those things keep coming back, year after year..) and an assortment of other plants and malarkey. It was fun.

More recently I have grown little peppers (mass bug infestation, despite the daily leaf washing.. how did my world come to this?), basil (bug infestation and leaf mould, double win! One afternoon I could take no more and chopped them all to oblivion, well not oblivion per se, more like stumps, I chopped them to stumps. Now they sit near the window, quietly judging), spider plants (things of such radiant bug and mould free existence!) and my aloe vera. The Aloe Vera is my kitchen monster. She is radiant, forthcoming when I burn myself and is my most favourite plant in my house (the basil knows this, its why it only very quietly judging). It sort of scares some of my friends, but that’s okay, Aloe doesn’t judge.

Ever since I can remember I have grown things. This often comes with contention, but this is met from a place of love and unholy stubborness to will something into existence. Watching seeds sprout, and plants grow is something quite magical. Watching mould develop is somewhat disgusting but still incredible none the less. Nothing is constant and everything is open to change.

Map Point. What inspires me to change?