Vague Head

Yesterday I posted the following status on my facebook:

Somewhat “vague” today. Not bad, just somewhat purposeless and lacking in any sort of knowing what to do. I’m sure there’s something must need doing, but I haven’t quite figured out what it is. And my head’s doing that “wandery” thing where it can’t quite figure anything out!

And later, replied to a comment on that post with the words:

I’m in one of those moods where I want to write stuff. But the head is blank. There’s nothing there. The little translation people in my head who sort the words have taken a day off.

As it turned out, I wasn’t wrong that the little translation people had taken a day off. By the time I got into bed my spoken words were becoming somewhat nonsensical, and by the time my husband had fallen asleep, they’d gone completely. I didn’t manage to get any sleep myself until nearly 4 am, so it was a rather tedious night. Even by this morning I still wasn’t able to ask him what time he’d be home from work because I couldn’t summon the energy to form a sentence that long and complicated.

And I’ve spent most of this morning in a state of some sort of shutdown. And that sort of “sad” feeling pervades. And everything seems to be a bit triggering and there are so many things on facebook that make me angry but I don’t quite have the capability to debate them because I’m right at the start of this process and I haven’t yet got to the stage where I can analyse and present the arguments in a way I want, so I read that according to the labels I’m supposed to be “high functioning”, because I could speak as a child, and I feel so desperate because I can’t remember how to work my socks and it’s nearly 2 pm and I’ve not yet been capable of eating or drinking anything, but that’s OK, because I’m “high functioning” so my life must be brilliant, like those autistic people in silicon valley who can do computer things without crying and so on. And everything’s all jumbled up in my head and I can’t really quite get the spoons together to make sense of it all, so I just sit at home in my horrible dark messy flat, staring at the forms for the state benefits I don’t want to claim because they scare me so much but I know I have to because I cannot hold down a job and my husband’s working flat out and we’re still not breaking even. But it’s OK, because I’m “high functioning”, and my sort of autism would be described by most people as “mild”. And there are parents on groups talking about their autistic children as some sort of tragedy and saying that because their children are “severe” they will never be able to live independently and that the adult “mild” autistics don’t understand. Even those of us who cannot live independently – independent living is a distant dream for me, a world that I might never attain! And they even have children at all, which, to someone like me who was never able to have any, seems terribly ungrateful. And I see the success stories and the smiling graduation pictures and I remember how hard I worked (not at the subject, but at being able to live) to get through my degree, and the early morning drinking to enable me to cope with the world, and the picture that everyone else saw of a smiling person in mortarboard and gown and how much damage I was doing behind the scenes by pretending to be strong that by the time I was in my late 20s I was downing bottles of whisky and packets of pills in the hope that I wouldn’t ever wake up again.

And all this goes round and round in my head like some sort of mess, from which I hope, one day, to extract some sense, some coherent argument, some way of trying to explain all this to people that they will understand, that they will think about. And how important it is not to pressurize autistic people into appearing “normal” from the outside because it is doing us so much damage on the inside. And I sort of hope that people will realise why all this stuff is so triggering and difficult for so many of us, but I realise that many of them probably won’t, and just like I’ve had to learn in other areas of my life, there are times when I really should hide the offending posts on facebook and move on, because my own quality of life is often so poor that I need not to make it poorer by staying awake all night, nonverbal, triggered by all this stuff, and wishing that I’d never been born because my life is such a bloody awful mess. And even as I type that sentence I’m worried that I’m lining up “nonverbal” next to “triggered” and so on, and I want to go back and change it (but I don’t have the spoons) because it implies that nonverbal (which really should be called nonspeech anyway because typing is verbal, just not spoken) is bad, and it isn’t, at least not from the inside – it feels calmer and less stressful than trying to maintain conversation, which is often hard deliberate work. I usually find that I start to feel worse and worse when I’m trying to hang on to speech, but feel much better once it has gone, an inner peace that isn’t available when trying to communicate by talking. Yet so much of the outside world seems to see this silence as a bad thing. And I am confused. And now, reading that paragraph back, I realise how social media, which is largely responsible for triggering many of these thoughts, is simultaneously wonderful and difficult, because without it I would spend most of my life without any human interaction at all, but with it I am exposed to things that are often difficult to cope with. And there’s another whole blog post to be written about that too.

And as I type this I wonder whether even to post it. Because I want to make proper, reasoned posts about all these things at some point, and I want to explore as many angles of the debate as possible. Despite my never having succeeded in academia, I am an academic at heart, a scientist, a person who tries to be as rational and logical as possible and to try to understand the opposing point of view in arguments, even if I subsequently dismiss that point of view.

But I am also just a person. A very broken person, with a lot of baggage still to unpack, a lot of self-esteem issues to deal with, a lot of practical problems to tackle, and a very very struggling head that doesn’t even think in words and needs to expend vast amounts of energy to translate the concepts and pictures and feelings into words in order to communicate them to other human beings. Even then, I don’t always get it right – it’s clear from replies to things that I say on facebook that others don’t always understand what I mean and maybe I’m not clear enough.

Note: I ran this post by my husband, who suggested that I add the words “I do understand that people who say ‘you aren’t broken’ are trying to be helpful but it is often the opposite of helpful so please, if you would like to know how to help, you can start by not telling me ‘you’re still you’ or ‘you’re not broken.’ Thank you.” (There’s a whole blog post to write about that at some point too – the extent to which I’m “me” or “broken” is massively complicated in my head and I need to work it out for myself, which will take some time).

I will do the proper blog posts at some point. The ones on my list, in which I discuss functioning labels, in which I discuss speech, in which I discuss how damaging internally it can be to an autistic person to try to behave socially in the same way as most other people can, and about how some of us who have been doing it unknowingly for decades have struggled to work out why life has consistently been so tough and gone so very wrong and have ended up so very broken and burnt out as a consequence of putting in so much effort for such a long time.

But I need more time for those. I need the soupy mess in my head to settle, so I can see. I need to do it when the translation mechanism is running smoothly and my head is clear and I’m not dealing with so many other things at once.

If I do decide to post this, then it will feel like one of the “braver” (to use a word that others have used to describe this blog) posts, because I am raising issues that are difficult, and I’m doing so without even having the capability to debate them, or with the backup of sufficient knowledge in my head, which feels like a rather frightening, and maybe risky, thing to do. But one of the things I was determined to do at the outset of this whole blogging enterprise was to try to be honest (or, at least as honest as I can be – there are things I have to leave unsaid sometimes to protect other people because my story is my own, to use as I please, but where it intersects with the lives of specific others I sometimes have to tread more carefully).

Maybe, however, it will be worth it if it encourages others to think about these issues. Although I know I’m already triggering myself massively just by typing this stuff up, never mind what will happen if I post it.

Perhaps the very best course of action at this point would be to go and see whether the connections in my head are working sufficiently well to make a cup of tea. And if they’re not, to get someone on social media to talk me through the process so at least I’ve had a hot drink today, even if nothing else!

Accepting Wrong

51-2017-01-05-23-23-12Sometimes I feel wrong.
And I don’t know how.
Just wrong.

It is not always easy to tell
What I need to do
To feel better.

I try moving and stimming,
Lights and soft fabrics,
But still wrong.

I look at my weighted blanket
And my compression clothes.
My skin recoils.

Maybe I’m hungry and need food?
So I go to the fridge,
And feel ill.

I probably need a meltdown.
I’m probably anxious.
Maybe.

Upcoming social events,
Assignments and commitments,
Already pressing.

Ongoing situation with assessment.
Still constantly flashing in my head.
Tough times.

Pushing myself in recent days.
All takes its toll.
Uses energy.

I listen to my body and ask what to do.
It just says it feels wrong.
No more detail.

There are feelings of something
But impossible to know
What they are.

Sometimes I feel wrong.
And there is nothing to do.
But live with it.

And wait…

***

About half an hour after I wrote those words I heard a bit of a kerfuffle going on in one of the rat cages. I went to see what was going on and opened my mouth to say “Hey dudes, what’s doing?” or similar, as I would usually do.

The words were gone. Completely. No possibility of producing comprehensible speech.

Fortunately rats don’t care about words. They respond to any sounds.

But I discovered what the wrong feeling was.

Impending loss of words.

Can I Sing?

35-2016-12-29-22-15-02The question above isn’t one regarding my musical ability. I wouldn’t call myself a singer in any real sense, but I can be a moderately useful choral soprano from time to time, got grade 8 in singing when I was in my late teens, and have occasionally sung solos, although that’s all very very rusty these days!

However, I have asked myself that question on a couple of occasions recently, most specifically when I’ve “lost the words” (I’ll do a whole blog post about that at some point, but regular readers will by now have picked up that I have times when I am non-verbal and unable to speak).

The first time I wondered about singing was when I had around 3 hours of lost words while my husband and I were staying in the hotel (see Balancing Act), but by the time I had thought to consider the question my husband was asleep and I decided that wasn’t the moment for the experiment. Picture the scenario – you’ve just fallen asleep after a busy day fetching food and coffee, and you’re suddenly awoken by some sort of noise, and then you have to put your glasses on to read the words your wife is typing to you on her phone to discover that your valuable snooze time has been interrupted to conduct some sort of bizarre singing experiment! I’m barmy, but not quite that barmy!

Anyway, last night I lost the words again. Not really surprising after the week of the cancelled second assessment and all its attendant strife (there was yet another round of telephone calls and crossed wires yesterday afternoon). I gradually observed the feeling, familiar since childhood, of first a sort of sick exhaustion, then being (as I’ve always assumed) simply too tired to talk. I’ve spent my life assuming that everyone gets too tired to talk, and that’s just normal.

Since my husband was out late last night working (there’s a reason I don’t wake him when he’s asleep), I was in the flat on my own, so had the opportunity to try the singing experiment. It wasn’t a sophisticated experiment – there was an old episode of Top of The Pops burbling on the telly, and I thought I’d see what happened if I tried, from my non-verbal state, to sing along.

The answer was this – if I tried to sing with the words of the song, then nothing. Couldn’t do it at all. Like there was no connection, something unplugged (I really do want to try to work out how I can describe all this properly sometime, but for now it’s the best I can do). So I tried without the proper words – just “la la la la la” type of thing. Also nothing. Not a hope.

But if I just forgot about the words and hummed the tune alone. Absolutely fine. Like normal. No problem at all. Just like normal humming. Totally wordless, but all completely intact from a pitch and music point of view.

It really is the actual WORDS that are the issue. I have some sort of circuitry issue with making words. Which is, of course, why social events and conversation are so absolutely exhausting. Even when I’m apparently speaking fluently, I’m working overtime to make that speech, and sometimes I just can’t do it at all.

It’s all very interesting!

Responding and Communicating

04-2016-12-11-09-12-11As I mentioned in the first post of this blog, my ability to engage fully in discussion might be rather limited at the moment. It is true that I can sometimes write reasonably comprehensible prose, and sometimes the translation mechanism in my head, which converts the thoughts to words and words to thoughts, runs smoothly and efficiently. But sometimes it does not.

After I posted yesterday I received quite a few messages and comments on Facebook, some of which I wanted to answer fully and compassionately, some of which I wanted to scream “Yes yes yes” to, some of which were beautiful and eloquent and touching, some of which I wanted to challenge quite heavily, and some of which I found really really amusing – one in particular, for a very particular reason, which will be discussed on this blog in due course.

Some of these communications are lengthy and need more attention than I’m currently able to give. I just can’t read them and deal with them right now, so please go gently on me. It might take weeks to get to long stuff, so brevity is appreciated. My head is processing things really really slowly at the moment. I’m using most of my available energy to try to eat regularly, to keep clean and healthy, to try to salvage my maths degree (which is once again hanging in the balance – the Open University have known about my autism since October and are thus far being fabulous, but time is not on my side), to try to preserve a book project, and just to prevent the rest of life falling apart. In the last few months I have had to reduce my schedule drastically, pulling out of several marathons, declining playing things I really wanted to do, and spending time just getting to the stage where being a public autistic was something I could cope with at all.

Furthermore, I’m still deeply mired in the process of trying to get an official formal diagnosis and have filled in so many forms and gathered so much evidence that it has almost been a full-time job. One reason why the assessment at the end of November was so traumatic – it should have been the biggest day of my life, instead of which it was an unmitigated disaster. I’m still not able to write it up, although the bruises I inflicted upon myself while in meltdown in an unsafe place with no soft furnishings are starting to heal.

I’m still somewhat amazed at the number of people who thought I knew and weren’t surprised. I really didn’t have a clue – had I known I was autistic I’d have been talking about it years ago, because it is my way to talk about things whenever I can. Evidently my mask really was full of holes, and despite my spending 40 years believing that I was just a bit eccentric and the world was a really really tough harsh place, anyone who knew what they were looking for could see what was underneath. Sometime maybe I’ll try to discover where the holes were. What did people see that I didn’t? What made them suspect?

I also have quite a lot of e-mails in my inbox that really need answering, but I’m only capable of doing so sporadically, and I need to set up a calendar for 2017 and seriously work out what I can commit to and what I must decline. At the moment I’m struggling even to go out for a coffee, although I am, to some extent, trying to get out and about when I can because the alternative is becoming a complete hermit, and I know that however tough it is, when I can manage it, there is a world of things I enjoy – I just need to work out how to cope with them.

The effect that posting publicly yesterday had was not unexpected – I lost verbal functionality. I have had “silent” spells throughout most of my life, from somewhere around 5 years old. I have long known that when I am very cross, or very distressed, or very tired, I simply go silent. It has never occurred to me to wonder why because it has always been the case, so I assumed it was normal.

Since I’ve discovered I’m autistic, I’ve been paying a bit more attention to these silent phases and realised I am silent not through wilfulness or because I’m trying not to talk, but that I am actually unable to speak at all during those times. I have experimented with trying over the last few months and I really can’t make the words in my head come out of my mouth. They just won’t. There are sounds, but no words. Like someone pulled the plug out on the word channel. As I start to recover functionality I am first able to type, but not to talk, and I type on my phone if I need to let my husband know that the words are gone. When the words return they are at first monosyllabic and stilted.

I tried to reply to a couple of messages early in the day yesterday. The results, produced with immense effort, were also almost monosyllabic. There was this outpouring on my wall to which I couldn’t respond. Things improved as the day wore on, but by that stage I was utterly utterly exhausted.

However, one of the other slightly odd effects that “the autism discovery” has had (there have been several) is that I’ve suddenly started producing slightly different words, which I can do when proper sentences aren’t possible. I don’t know whether it’s poetry, since I don’t know much about poetry. But it is what it is.

Yesterday morning, when my spoken words were monosyllabic, my ability to communicate in writing impaired, this was what I did manage to pull from my head:

And so they know.
I cannot immediately discuss.
The words – difficult.

I lose words.
Sometimes.

Words are effortful.
Sometimes.

Other times they flow without stopping
And I do not know how to make them finish…

Alone, the thoughts are there.
And I can translate
But struggle to interact.

Thoughts on branches.
Concepts.

Thoughts in pictures.
Visual.

Sometimes they come as words but jumbled
And I have to organise them…

Discussion. Interaction.
Will have to wait
For better words.