Memories

When I'm driving along or walking and autumn washes over me, I feel all scrunchy, and not in a good way.

When I first came out of hospital I was constantly assailed by completely overwhelming and uninvited memories. The slightest thing would trigger them and the emotions would take over me. It was exhausting, upsetting, and draining.

They come in ebbs and flows now; weeks where I'm much more here and now and weeks where I am being taken back in time throughout every day. New triggers pop up that I haven't met before and I'm back at day one, struggling to see the road through my tears as I remember somebody saying something a certain way, or filled with anxiety as I simply realise that something I am going to have to do may trigger memories. 

I can cope with the little ones that pop up a few times a day, snapshots of a time that seems so far away now, the odd turning over of the stomach. The unexpected ones and the new ones and the ones where the unidentified emotions just take you over or you've been dreaming about it all night and the feeling won't leave you are harder to deal with. 

It was a completely separate life. It doesn't fit into or link with my life outside. Nobody in my daily life has the same points of reference. That thing where people reminisce when something reminds them of a previous experience doesn't work, because none of my experiences from the last year are common to the people I spend my days with. You can't say "ah, remember that time when...?" If you want to share what's in your head (which is a big way most people communicate and build relationships, and occasionally it occurs to me to do so even though I am uncomfortable inviting attention by talking at the best of times, especially talking about myself) you have to tell them the whole story and they are still unlikely to really understand. It's not relatable, you'd just be the weirdo that's constantly talking about when they were in the loony bin... I also feel like that's somehow taboo, that I shouldn't talk about that time and that place in everyday "savoury" conversation, though I know this is probably just my own judgment. Over time I will build more recent experiences that do relate to my daily life and daily interactions and normal things that aren't about bonkers brains, but it seems that for the minute most of my recent frame of reference lies in that realm.

I don't know if I want to remember or not. It hurts, which is off-putting. Am I feeling like I am there again? Am I in the same emotional state as I was in at the time? Or am I having emotions about what it was like at the time? Do I feel like I want to be there again? Is my brain trying to experience it again because I have not finished processing overwhelming experiences? If I write about it in as much detail as possible will it help me to process? Sometimes I feel as though I need to go through everything in the minutest of detail with somebody safe and helpful, examining it all - what happened and how I felt about it and how I feel about it now. Being careful not to miss anything, until I am satisfied I have dealt with it all. I feel like the memories might become normal memories then with a normal level of emotion attached, just a part of the story.

I think not being able to share them stops me from integrating these memories into my story. They don't belong anywhere; they are in a separate box, largely to be got out only with my fellow loonies, then put back in again as I go back to real life. Except that my brain is telling me that they are important to me by refusing to let them stay in the box. They run riot because they need to be attended to, seen, heard, understood, given a place in my story and then somehow to become as unremarkable as everything else that happens. Maybe that's why I'm writing so much about that time at the moment. I'm sorry if it's boring or repetitive or weird, but as always, I write this for me, not for anyone else. When I can't talk about it (and it's isolating too, not being able to relate to others about a huge amount of what your brain is doing), I can see if writing helps a bit.

*DISCLAIMER* I use loony and bonkers as terms of endearment and humorous way of describing myself and my friends and celebrating our positive differences. We are all most excellent people, very capable and responsible and intelligent and interesting and, you guessed it, normal people (whatever that is!). Sometimes our brains do things that other people find unusual or that cause us problems if we or our culture are not equipped to deal with them. But that doesn't take away anything from our personalities and normal human qualities. Please don't think I am in any way demeaning people with quirky brains (yay to neurodiversity!)!

Sleepy feet!

So a few weeks ago I had a funny conversation with my OT. Not the one about whether I can put both feet behind my head, though that one was funny too. (It turns out I can, in case you were wondering and don't follow me on Facebook.)

On my agenda for our meeting was Item 4: Feet. He enquired as to the nature of what we should discuss about feet. I explained that my feet don't like being in shoes all day: they get very sad.

"Where is the pain?" he asked. 

What pain? When did I say they hurt? "There isn't any pain," I explained, "they just go sort of dead."

"Ah, so you can't feel them, like they're numb. Have you tried some different shoes?"

Insoles I already owned with a
massive metatarsal support and arch

Nope. It's like they're not there... they're not a part of me... I need to be able to feel them... They need more sensory input. We got there in the end! Luckily I'm pretty sensory-aware and was able to explain more to him about the exact kind of input I needed after I rejected all his initial suggestions because they were all wrong! Once he knew what I meant we came up with some great ideas. And I must get round to trying those toe socks we all had in the 90s, if I can find some cotton ones...

Trampoline park socks I already owned

The funny thing is, when I tell some people about the feet problem they know exactly what I mean straight away. Others have no clue what I am talking about whatsoever. Is this an example of the double empathy problem? We don't understand each others' method of communication. Or perhaps just that it is not a problem for some people (or not one that they are sensory-aware enough to recognise) and so they don't have language to describe it or to understand my description of it?

Compression socks (technically for
plantar fasciitis), dead thin and fit
easily under normal socks

Who knows, but it struck me as a good example of those times when I think I am talking about a simple everyday concept only to find someone has no idea what I am on about. Maybe I should start a running list of them, that could be interesting! I have a feeling the people that know what I mean tend to either be autistic/neurodiverse in some way or spend a lot of time with people with sensory differences...

Best buys from the last year

If you know me you'll know I'm not big on having "things" and buying stuff or spending money unless I need to or it's something I'm going to really enjoy (like a holiday!). But here are things that I have bought or received over the last year that have repaid me infinitely for my investments. All except the first one under £10 or £20 but genuinely life-changing.

Bose noise cancelling headphones. Definitely my biggest investment but totally worth it. My sister very kindly lent me hers while I was in the general hospital and actually I didn't use them too much there. Maybe because I didn't need them much, as I was originally going to write, being in a side room so having a door I could close. But probably more because I didn't realise I needed them. I didn't realise what a difference they could make. I had some normal in-ear headphones I used at times when I wanted to listen to something without closing my door so I thought that was fine - it was all I had ever known. But when some particular noises on the specialist unit became too much I tried out the noise cancelling headphones properly. I never looked back! The sound quality is fantastic and the noise cancelling reduces or eliminates a lot of background noise, particularly low-pitched hums eg. fridge/freezers in supermarkets, traffic noise. They make it more possible for me to use the telephone because at least I can actually hear the person on the other end, and they mean that I have varying degrees of removal from the ambient sound-world. If I play music loudly enough I can't hear my surroundings, or if I just use the noise cancelling I can hear my surroundings but the over-all input is reduced enough to reduce my stress levels. Sometimes just putting them on without turning them on is enough to take the edge off things that are just a little too loud, such as amplified music or voices at church.

Onesie. I love my onesie so much and wear it most evenings. revolutionary dressing gown alternative for people who can't help flailing around. Made of thick jersey (think joggers/tracksuit/hoody material) it is cosy without being that yucky stuff that is sold as fleece these days. Actual fleece is good - the furry stuff NO! Especially if it's shiny. 

Stanley (gift). Stanley is my weighted sloth. He is full of beans literally. He can go in the microwave and be cosy warm if you can cope with the smell his beans make, but if not, he is good for sitting on the knee, accompanying you in the car if in need of some extra comfort, swinging around in therapy sessions to help you stay regulated enough to say what you need to say, and he's very calming if you sit him on your head. NB. It doesn't have to be a Sloth, that is just the animal chosen by Mr Peggy who bestowed this most excellent gift on me last Christmas (OK, so technically not my own best buy, but a best buy!).

A tin of black paint, with gifted variety of sensory lights, shelf and beanbag. This was all that was required to make my sensory nook, and that has been a complete gamechanger. Low stim environment where I can go any time I am at home, to destress, recharge, regulate and either maintain calm or tolerate distress. Also more recently acquired: dark tent so I can have a nook when we go away places, and blinds for the car windows in case I need a bit of down time when I'm out and about.

Love my nook!

Compression socks. These are new and technically designed for plantar fasciitis, but I use them in a sensory way. My feet get sad and dead when they are in shoes all day at work. They need some light sensory input so that I can be aware of them being part of me during the day and this helps to keep me regulated. Wearing them for about half the day under my socks is about right. Other days I use insoles with a big metatarsal support or trampoline park socks with the little anti-slip bobbles on the bottom.

Tangles. You'll rarely see me in public without one! They keep my hands awake and give low-level anxiety an outlet so that it doesn't build up as quickly. They also seem to be quite a good indicator of my stress levels for other people, who can be better able to tell how I am feeling by what I am doing with a Tangle than by any other verbal or non-verbal indicator...
I have a nice collection of other fidget toys/stim tools from spiky spring rings (love these!) to squeezy balls (!) to magic snake cubes and natural objects like stones. Just shout if you'd like any inspiration!

Safe

Writing my post about community, I mentioned that I felt safe in the community on the ward. I nearly went off on a tangent about "safe" and decided it warranted a separate post.

Most definitions of safe state something to do with being protected from or not exposed to danger or risk; not likely to be harmed or lost. I looked that up after I wrote the following, and it fits right in! Danger, to the brain, includes not only injury and illness to the body but rejection by others and not getting needs met. Being despised, ridiculed or feared (all experiences of I guess most autistic people) probably come under that heading too.

Maslow's Heirarchy of Needs names safety
as a basic need required before we can access
the benefits of engagement and learning

I have had many conversations with people who live with mental health difficulties about safe people and safe places. In the general hospital there were some people who were safe and others who weren't. With the safe ones I felt empowered where I was otherwise scared and immobilised. People talk about whether they feel safe (and thus able to work to their fullest potential) with their colleagues. It seems to be a concept that we each think we have made up and yet we all understand. So I thought I'd see if I could figure out what I actually mean when I say I feel safe somewhere or with someone. And how could I say I felt "safe" in an environment when I had daily threat responses there? If safety allows thriving, what characteristics do I want to promote in my communities and in myself, to help me to feel safe wherever I go?

When I felt that I was not going to be judged (or if I were, there were sufficient people around who understood me to counter that message of misjudgment), I was understood, I was protected, and people were kind, then I felt safe. Later on, I found that I was valued. Now, this was by no means a perfect environment and there were definitely times where these things didn't happen, and I know that not all other people shared my experience, but these are the aspects that I think contribute to me feeling safe in any context.

I think a safe person or a safe environment is characterised by:

Non-judgment. I will not be judged or rejected for my needs, my mistakes, my character, my interests, my self-expression or anything that is intrinsically me. Some actions may not be acceptable but my character will not be judged by those around me.

Understanding. My needs are understood. My communication is understood. The people around me know me - they understand what is likely to cause a problem and why, and how to help. They also understand my abilities and give me independence and responsibility in the many areas where that is appropriate.

Protection. There is protection from danger, be this danger from my own actions or thoughts, or from those of others. I am helped to learn to how and when to protect myself. Perhaps a part of this is also boundaries. Although constricting, boundaries are there to keep us safe and every community has them. The clearer they are, the safer we feel, because we understand what can and can't happen, and the consequences if boundaries are broken. When this system fails, we stop feeling safe.

Kindness. I am treated with compassion. This encompasses most of the other points but I think it is so important it needs to be listed separately. When people are kind, the people around them feel safe. See my older post on Kindness here.

Freedom from social expectations (other than boundaries). I added this one afterwards because I was thinking about how my presence or input needs to be optional for me to feel safe. If I'm under pressure from others or myself to be present, the safe feeling goes. If I need to provide something (interaction, performing tasks, making decisions, just generally engaging to a certain level) I begin to feel under threat in case I cannot deliver. On the unit I was completely at liberty (outside structured sessions) to choose if and when I spent time in communal areas, and when I was there, whether I chose to engage with others and to what extent. Nobody expected anything from me and nobody would be offended or go without their needs being met if I were not there or not speaking. When I am truly free from social expectations I am at my best socially because I can do what is best in the moment.

... and the bonus, value and belonging. In a place that is good as well as safe, I am valued. My differences are not only tolerated but appreciated. I don't feel that it is a difficulty to accommodate my needs, but a pleasure because inclusion will also help others. I am not only not a problem, but I am an asset. People are fond of me partly because of my idiosyncrasies, not in a patronising way but because they genuinely see something they like in my quirks. My peculiar perspective is helpful in seeing things differently. I am recognised for the positive additions I bring to a community or relationship instead of my differences showing how I don't belong.

Is this what safety means to you? Have I missed anything out? As I have read this through a couple of times and added bits in I have noted increasingly that the attitudes in the people around us that foster safety are also attitudes that we can cultivate towards ourselves. If I can apply these lenses to the way I look at myself, I will increasingly carry my own sense of safety with me and perhaps become less deeply affected by the responses I find in different surroundings.

Edited to add, after this post from a friend, that feeling safe is as important as being safe. The brain and body respond the same way whether a threat is perceived or actual. And feeling safe then allows us to branch out beyond our safe place or take calculated risks knowing that we can return to safety.

Community, masking and belonging

Community has been pottering around in my mind recently. And then I wrote this and the first half ended up being about masking, so I'm changing the title.

Not this kind of mask!

I wrote almost a year ago about the revelation that I actually like being with people when I am sufficiently regulated. Although I have had friends since I was about 10, I generally had between one and three at any time and didn't feel comfortable socialising with them in an unstructured way or out of the context in which I got to know them (often interest-based or non-rejection-based) until I was an adult. I considered my friends as out of the ordinary in that the enjoyment of being with them outweighed the anxiety (which was decreased by their acceptance or appreciation of my quirks). Until I was an adult I was certainly still performing or "masking" when with my friends, though less than with other people. Even though as an adult and especially more so since being identified as autistic I have become more accepting of my natural self I think I have almost always masked: it was so much of a necessary survival strategy when I was younger that it became automatic and hard to identify how I would behave if I were behaving entirely naturally. For information on masking and its dangers, see here or here or do an internet search.

As I have become more noisy about being autistic and less hide-y, I have begun to lose the mask. Most of this work has been done over the last year. 

A perfect storm of conditions came together - I hadn't gone there to try and make relationships so I didn't have any expectations of myself or any pressure, I'd never met any of these people before so they wouldn't think it odd if I was different from how I was in the past, I felt safe, I was fairly well convinced I was not going to be judged (by and large anyway, and if I were there would be sufficient people around to give me the counter-reaction), my "behaviour" would not be out of place or unusual (OK, it was sometimes unusual, but it was very much accepted and even valued and I learnt that it was OK or even good for some of my oddities to become parts of my identity), and I was so much reduced to nothing as a person that I didn't have the will or the energy to hide anything. It was a chance to find out who I am when I don't pretend, and a bit like a reset button on my life. Who am I when I stop behaving how I think I ought to behave because I want people's respect?

This, I think, is the most I have ever been part of a community, which is sad, and maybe one reason why I was so sad when I left. In life I have been part of many communities. In some I have been more myself and in others have masked a lot, but never have I been able to simply be until this point. On second thoughts, perhaps it's not all sad. Perhaps it's happy that finally all the pieces came together at once to allow me to discover that there is a possibility that I can be me, and I can be me safely and happily with other people. And that the time when I didn't mask was when I first found belonging - it was my true self that belonged, not some self that I thought I was meant to be. There were things in my past communities that could have been more inclusive and helped me to belong, and there were things in me that needed to be in place to get the most out of the opportunity (look, both of these things can be true!! If you read my earlier post...). The right people, the right environment and the right point in my life experience came together to give me a kick-start on finding myself, accepting myself and educating others about myself.

Now I have to learn how to translate that into the real world. The real world is not made up of only people who understand neurodiversity and are full of compassion. But the more I carry on being me, the more I find out just how many of those people there are. And the more I carry on being me, the more people will become compassionate understanders of neurodiversity as they find out that people like me aren't scary or dangerous or incapable, to be despised or wary of or changed or hidden away. 

I have often been scared of communities in the past because I have been either on the peripheries of them or an outcast. Sometimes I have sort-of-belonged-a-bit but never felt comfortable except with a couple of people. Communities have never been somewhere I can relax. They have been fraught with danger and vulnerability, so many ways to get it wrong and find out once again that you don't belong. So I have preferred to stay with my one or two people outside the circle where we're happy. And I'm still happy to be there, but I've found out that there are circles that I do belong in too. If I am naturally myself the circles start to find me. My work circle is becoming a place of belonging - there have been pockets of belonging there since day one, but I restricted that circle by hiding bits of me. As I start to be myself, instead of my circle shrinking and my being cast out, my circle is growing. I am becoming part of the family. I am valued and cared for and I am OK with that. Actually, it turns out that I like it. 

If I don't accept myself I don't give others the option of accepting me. They may choose not to, and there are certainly still those around who don't (the security guard outside the supermarket when I shutdowned yesterday... luckily he wasn't nasty, just annoying, and the Supermarket Lady and Hair-Changing Passing-By Work Peggy were very understanding and helpful), but if I judge what I think they'll do without even giving them a chance, then although I may be protecting myself, I may be missing out too.

Will I be brave enough to offer this opportunity in some of my other communities I wonder, and will they take it up? And will I find anywhere I belong quite as naturally as with my fellow loonies?!

Now I have discovered that being part of a community is something for me too. It may be scary and involve risk and investment, but a safe community for me is a thing that can exist and a place I can thrive and belong and have all those things that people think autistic people don't want or can't have. Only because we've grown up in a society where we don't understand most people and most people don't understand us do we all have those beliefs. Autistic people do benefit from belonging, and we can belong safely.

Picture from https://artmiabo.blogspot.com/2015/08/colours-in-circle-abstract-art-by-miabo.html

What is this post even about?

I'm trying to write a post that feels like it needs to be written, but nothing I write feels quite right. Usually when I don't quite know what I want to write, I start typing and something forms itself that seems to get whatever I needed to get out of my head out of my head. As it were.

But I've tried this one several times and it's still not coming together. I want to write about how the events of a year ago are affecting me now, about how life is different and how I feel about it all and what the brain does and what still affects me and how I am coping with returning to all the previous bits of my life that went on hold. But I can't seem to gather my thoughts or pin them down. I can't find the nub of what causes me trouble and why. I can't identify the things that are happening in my brain or make sense of them. 

Sometimes I'm overwhelmed; sometimes it's like it switches off and none of it seems to matter, but this is accompanied by a sense of foreboding that it hasn't gone away - it's just hiding, ready to pounce when I'm not expecting it. Sometimes I'm too weary to care, but I know that is temporary too. I need to find a way to unravel everything that has happened, to acquaint myself properly with facts and feelings and integrate it all into my story so it stops jumping out at me, incessantly demanding attention, sending me alerts and notifications and generally causing trouble.

Ideas on a postcard please!

29th September

This night a year ago was the last night I spent in my own bed for nearly eight long months. I was trapped, terrified and almost hopeless. The following day I ended up in hospital.

This year I have just got back from ballet class where the familiar syllabus is like an old friend, constant through everything that changes. I have jumped and turned and been en pointe. Last year I could barely walk a few steps. 

Tomorrow I will go to work, to my wonderful new class of little people with huge personalities. I'm enjoying them so much, perhaps all the more because I only got two weeks of last year. 

It should be as simple as that. I was barely able to stand for a minute or two, to speak more than a couple of words together or to concentrate on anything for more than a few minutes. Now I can walk in the countryside, dance, drive my car, fly on zip lines, go to the shops, relax on my own sofa at home with Mr Peggy, going where I want to when I want to and doing what I want to. It should be that simple. 

In the hospital I found hope and fear in equal measure. To begin with, enormous relief that my ordeal was over, everything stopped, no more fighting. Peace at last. Hope for freedom and life to return. The first night's sleep I'd had in weeks. But the darkness didn't leave; it wasn't that simple. 

There was pain, fear of the immediate reality and of the future. Gradual realisation that this was going to be the long haul. So many experiences that overwhelmed in so many different ways, which I still haven't processed now and don't know how to (sometimes I think I have more problems now than I did before!!). 

The struggle continues daily, well multiple times daily. It rarely leaves my thoughts. I don't always win. Emotions and memories party in my brain and body uninvited and I struggle to cling to what other people tell me is the truth. 

But today and tomorrow I'm trying to focus on what I can do that I couldn't do before. This time last year I was deluded enough to think I could be back to school by half term. I was off for the rest of the year. This year I will be there tomorrow and on the first of October, and through November and December and 2021, full of life.