Clear Air

The storm didn’t really come in the form of a meltdown in the end. I was so exhausted that it morphed into a shutdown instead.

I’d had a really really busy day. The busiest in months. I went to play in a performance of Mendelssohn’s Elijah with a local choral society – playing my viola from time to time is one of the very few things I didn’t abandon completely when burnout hit. The gig entailed a three hour rehearsal in the afternoon, then being hosted at someone’s house for supper, then the concert in the evening, which also lasted nearly three hours.

I’d done a similar gig last December, but declined the supper invitation and spent the intervening time sitting in the car on my own. This time I braved supper – partly, admittedly, because it was done on a “get in touch if you don’t want to have supper” basis this time around and my “getting in touch” abilities are pretty poor at the moment!

So I’d had this massively long full-on day. I’d been totally open about being autistic and having mental health issues (I’m getting slightly better at talking about it all). I’d kept my sunglasses on for most of the day. I’d coped with eating while sitting on a proper chair at a table and even participated in the conversation over supper a bit. I’d left supper slightly early to give myself some space to be alone before the concert. I’d spent most of the interval sitting on the floor, wearing my ear defenders and rocking back and forth. And I had, of course, played all 90 pages of the viola part of Elijah – twice (perversely, although physically very tiring, that was actually the easy bit)!

I got home and downed a few glasses of wine and ate some cheese, then went for a bath.

And then felt exactly as I had done in the pub episode in Sudden Illness.

I suddenly felt absolutely dreadful, sat up in the bath, unable to keep still, and burst into tears.

And this is where what happens now deviates from what used to happen in the past.

In the past, I would have stoically continued, as I did in the pub, to act as “normally” as possible. I might well have ended up being sick, and would probably have got almost no sleep and have spent the night in bed lying awake, shaking, believing myself to have some sort of illness that I couldn’t quite rationalise. I have pushed on and on in such circumstances so many times.

And the result of that pushing has been a continual decline in my mental health, a continual drain on my energy, and the resulting burnouts and erosion of my functioning abilities. Trying to be strong has, in fact, weakened me. “Faking it until I make it” has not worked – in fact, the more I faked it, the less I made it.

So I sat in the bath and cried, and my husband came to investigate and found a distraught mess. He calmed me down and drank the orange juice that I had asked for not long before as I indicated that I couldn’t drink it. And he also realised that my ability to speak was completely gone. Fortunately he’s used to it – and actually rather reassured now that we know I’m autistic, having thought, for the last fifteen years, that when I didn’t speak to him for hours at a time I was actually cross with him for some misdemeanour!

Then I went to bed, and beat my head against the pillow for a bit, before finally settling down to sleep. And I did sleep, where, in the past, I would have been unlikely to.

The next day my words didn’t return until mid-afternoon. My system finally closed down, and I did little more than lie on the sofa and sleep from time to time. But I felt calmer. The tension had gone. The storm had passed. The air had cleared.

And now I understand why this happens from time to time it feels easier to cope with. I’m not getting ill in the same way I did when I tried to fight through and keep still and so on. Although, perversely, the behaviour I exhibit probably looks more disturbing and maybe even frightening from the outside, from the inside it is very different.

In the past, an outside observer would just have seen someone who seemed like they were unwell and therefore became quiet – I’d have looked as most people expected me to look. But inside I would have been feeling utterly terrible, utterly unable to comprehend why I felt so bad, and in a total state of panic and desperation.

These days an observer would see someone who was completely unable to talk, compulsively rocking, maybe flapping their hands, bashing themselves against things, and even (though I try not to do this too much) hitting their own legs and arms with their fists. The part of me that has spent over 40 years trying to fit into a neurotypical world knows that I must look odd, and even maybe distressing, to the outside observer.

But inside, these things calm me. Inside they feel instinctive and normal and OK and can very quickly make me feel much much better, better enough to settle down to sleep. Better enough to wake the next morning and know that it doesn’t matter if I still can’t speak and I have to draw a letter T on my husband’s skin with my finger to indicate that I’d like a cup of tea.

And he no longer thinks I’m just asking for tea that way because I can’t be bothered to ask properly. And I no longer force the words to return before they are ready, and my brain therefore has time to recover.

It still feels very new, because it is still very new, allowing myself to be like this. I know from reading posts on groups and so on that many late diagnosed autistic people struggle to allow themselves to be who they really are, after decades learning to live a different way. And I’m certainly not always finding it easy – the intersections with the outside world can be particularly difficult at times, and the change from the old life is huge. But I am determined to live as my real self – 45 years was quite long enough to maintain the act that so nearly killed me on many occasions.

So that is the way it now is. And my way is to allow myself to be as fully autistic as I need to be wherever and whenever possible. And to be open about it as much as I can.

And maybe it sounds really odd, but that actually makes me really really happy, because it feels so completely right.

The new life becomes more and more real as time goes on.

Oscillating

The undamped pendulum mentioned in Uncomfortable continues to swing. My life continues to feel like it has some way to go before it settles into whatever my new “normal” becomes.

I don’t imagine, for one moment, that I shall ever achieve the stability that many people seem to in their lives – I’m just not built that way, and I know that monitoring my mood and my functioning abilities and so on will probably always be a part of my life. I know that my abilities and skills are very uneven and that they fluctuate significantly from day to day – yesterday it took me 3 hours to make a cup of tea, but this morning it was less than an hour. And, when I look back through my life, these things have always been the case.

But I do believe that things will eventually settle into something a little less crazy. I’m still only 9 months out from the very first suggestions that I might be autistic and only 11 weeks out from my diagnosis. These are early days, and things I have read by others suggest that life will calm down somewhat over the next year or so.

As I start to recover a little from burnout I’m also pushing myself out into the world a bit more. Strictly speaking I don’t NEED to push myself quite as much as I do (people say to me that I should take time, rest, and so on), but I am keen to get back to things and to do as much as I can (simply because I’m generally interested in stuff I think). The result of the pushing when out is that I’m regressing slightly at home – returning to the simpler comfort food more often, spending more time stimming, losing verbal functionality a bit more often, and so on. I’m starting to work on observing the patterns and looking at ways of monitoring them.

And so, each time I increase my activity, or push myself, or whatever, the oscillations get bigger, and then I need to stop and allow things to settle a bit. I find myself switching, every few days between two basic states – one in which I’m really negative and struggling and finding life tough, and the other in which I’m actually quite positive and optimistic and keen to make plans for the future.

So, during the negative times I end up with these sorts of feelings:

1. I want to hide under the duvet, away from the world, safe underneath a blanket, and just stay indoors in the dark for ever.

2. I do not want to eat, drink, or, sometimes even move. I am anxious and distracted and every tiny thing feels like a huge huge effort.

3. I am hypersensitive to things that I read, and I worry that I’m getting things wrong socially, even online. I constantly find that people don’t react to things the way I expect them to and I feel like my judgement is off somehow.

4. I struggle even to post on this blog or on my facebook wall and don’t feel that I have the right to be around or to even breathe the air. I’m frightened of the whole thing, nervous to post blog links up in case people hate them and don’t want to read them, fearful that I’ve upset people when the number of page likes goes down, and so on.

5. I feel like an alien everywhere and like a total beginner, even within autistic communities such as on social media and the blogging world. It’s like everyone else is somehow a “grown-up” and I’m standing in the corner at the party trying to work out what to do.

6. I feel huge fatigue at the whole “autism thing”. I look at the pile of books and scroll through my feed and I wonder what happened (I’d hardly even heard of any of this a year ago). I feel worn out by the last 9 months, the constant research, the incessant discovery, and I just want to do something different.

7. I sometimes feel totally freaked out by the whole thing. Everything has happened so fast. Suddenly my life was upended and I’m autistic and what on Earth happened there and I don’t know who I am any more, and I just want life to go back to normal and stop throwing weird shit at me.

8. I feel as if it will never get better and that if life is going to be like this for ever I can see very little point continuing with it. I feel useless and believe that I will never be able to contribute anything of real value to society.

And during the positive times I end up with THESE sorts of feelings:

1. I want to be out in the world again, back in my running shoes, back playing in orchestras, going for coffee, seeing people, and so on.

2. I’m even starting to fancy particular foods again on the better days and I can manage to eat a little more and a little more sensibly. I can do laundry and a bit of admin work.

3. I’m better able to respond with humour and more capable of brushing off the difficult stuff using brainpower. I put a more positive interpretation on things that are said and am learning to weed out the “advice” that I now know is not helpful for me. I cope better when the response is not what I was expecting because I know that’s part of my social imagination difficulties and I can rationalise it.

4. I will happily chat away on social media, share blog posts, and even write more posts with a certain level of confidence. If fewer people like the page then it’s no big deal, and if people don’t like me posting links to blog posts then I’m not really worried – folk have a right to choose what they look at or otherwise.

5. I feel that I do have some experience and knowledge about being autistic that I can contribute to the discussions, and when I feel like an outsider I’m perfectly comfortable with that – I’ve never needed a “tribe” before and I don’t really need one now. I can just be me, whatever that turns out to be.

6. I still feel that there is so much to learn about autism and being autistic. There are more books to read, more things to learn, and I have a huge list of things to research and blog about and discover. I’m even diagnosed now and can do this at my pace, and I might even find an area that interests me enough to form part of my future.

7. I feel so much more “at peace” with myself than I’ve ever felt. Discovering that I’m autistic might be new and unfamiliar and a bit crazy, but I know it’s right and it explains so much and I feel so much happier already and am treating myself more gently and appropriately and there’s no way I could go back to the old life, ever, because this new one is so much more ME and I find myself thinking how wonderful it is to have discovered it at last and I want to go and shout it from the rooftops!

8. I feel like there is hope for a much better future. I make plans for things I’d like to do in the next five years and I start to think about what I might like to do with the rest of my life. I feel like I might even be able to do something useful at some point and think about what that might be.

And so, these two states describe my life currently. I oscillate between them approximately every 2-3 days. On the good days I catch up with admin, write blog posts, try to do a little work, maybe play my viola, get some exercise, and sort the house out a little. On the bad days I just try to get through, to survive, and to still be alive at bedtime.

There’s some connection between the amount I push myself and make myself do things and go out into the world and the two states above – sometimes I deliberately maintain a positive “act” of sorts (maybe I am still masking somewhat) in order to do something I want to do or have planned and don’t want to cancel, and the result can be a tumble into the negative state. I’ve also noticed that the negative states often end with me becoming nonverbal, as though they’re caused by my head needing some sort of “reboot” and also that meltdowns are more likely in that state, particularly when I’ve pushed myself out and maintained the “act” described above.

And so the cycle continues, and I expect it will for some time to come as my brain continues to process things and I continue to work out how to deal with such wildly fluctuating moods and energy levels.

I guess it keeps life interesting…

Speech Levels

During the days following my first autism assessment, the one that went terribly wrong and during which I was declared “too articulate” to be autistic, I did quite a bit of googling of various things in an attempt to establish whether I really was simply going crazy. I found something posted on a forum somewhere, I can’t remember where, about autism and speech. The person who’d written it described how their speech varied and assigned different speech capabilities “levels” from 1-4. Much of what they’d written aligned with my own experience, and it helped me to understand my speech capabilities and how they work.

I have since thought about this quite a lot and have eventually come to the conclusion that I have 5 main levels of speech. I have very little control over which level I’m actually at, and if I try to force speech when it isn’t there it can make me feel really very unwell – these days, now I know what’s going on, I force it less and less, just accepting that my speech isn’t always as it might be expected to be – it’s no big deal, and just allowing it to be as it is (or, indeed, isn’t) is actually starting to allow my health to improve somewhat, even though it makes things a bit more awkward socially.

Interestingly, my husband has always said that when I’m ill or tired or really low and depressed my speech becomes monotone, so I evidently have noticeable speech difference even just in tone of voice at these times, especially once I’m home in a safe environment and not deliberately trying to inflect my voice in the way that I know I should from years of conscious learning. The assessor who diagnosed me as autistic also picked up on the fact that I don’t have the sort of variability in vocal modulation that might be expected – and my range of vocal expressiveness is much more formulaic and limited than most people’s. I, of course, had never noticed this, since my normal has always been my normal!

So, what are my five levels of speech?

Level 1
Fluent easy speech. As far as I know, this level of speech would appear totally typical from the outside and nobody would guess I had any speech issues at all (except, maybe, that I might appear exceedingly confident and dominate the conversation). It feels natural and not difficult and doesn’t use much energy. It might, I suspect, occasionally be a bit too fast, loud, or intense (this, I have been told by others, and I have always linked to the hypomanic phases of bipolar disorder in the past), and it’s more the sort of speech that I use when recounting a story, giving a lecture, or telling someone about something that’s already formed in my head or about which I am knowledgeable and confident. It hardly ever happens if there is interaction with anyone else, and it can be disrupted very easily if anyone stops me, interrupts me, or asks me a question. But the words flow just fine and it doesn’t feel difficult or use a lot of conscious energy.

Level 2
Fluent difficult speech. To the outside observer, I expect this level of speech appears exactly the same as does that of level 1, and, again, nobody would guess I had any issues at all. However, once interaction with someone else happens and I have to listen and interpret as well as talk, or I’m forced to start improvising and talking about something I hadn’t prepared for, from the inside it feels like much much harder work. Being able to continue to sound fluent and remembering to inflect my voice and use the right sort of language and so on is extremely tiring. Once I start to tire I’ll often get quieter and contribute to the conversation less. This is the sort of conversation that feels very different from the inside, but gives very little away to the outside observer. It’s probably formed the majority of my interactions with other humans over my lifetime, and although it serves me well socially and gives me quite good abilities in many ways it often makes me feel dizzy and sick, and if combined with sensory overload can often lead to meltdown if I try to maintain it for too long. It can leave me utterly exhausted, and the effort of producing it often means I need a full day to recover from the exertion of a fairly ordinary social occasion.

Level 3
Idiosyncratic speech. This is still good enough that I can communicate effectively, but, moving from level 2 there would be a number of slight oddities that could be noticed from outside. My word order sometimes gets mixed up (I can hear it as it emerges), and I start to substitute words for more readily accessible ones – I might, for example, be unable to think of the term “extremely bad” and say “very very very not good” instead, simplifying vocabulary. I’ll also simplify my tense structure somewhat. I’ve spoken like this within my own home and to close friends for years, but have usually tried to maintain level 2 out in public. At this level I also often leave out words such as “please” and “thank you”, because I am using speech purely for communication and someone like my husband knows that they are meant and I don’t need to use the extra energy to say them. My best friend informs me that he has heard many examples of this sort of speech over the last couple of decades. It has always simply been taken to be me being a bit eccentric or quirky, or even as some sort of humour. It is easier than maintaining level 2 though, and once I get to a certain stage in any sort of public conversation I will, again, simply be quiet.

Level 4
Fragmented speech. At this point it’s fairly certain I’ll eventually lose speech completely, but I CAN still talk, albeit in a way that is unmistakably atypical. I can use single syllable words, or sometimes ones with two syllables (but slowly). I will usually give up worrying about tenses, and there will be no noticeable sentences. It is the most basic spoken communication, but it’s sufficient for me to say, for example “drink” to someone and to get a drink. It is, however, really really effortful. Each syllable has to be deliberately constructed, consciously and with great care, as if learning a brand new foreign language. It feels like there is some sort of faulty connection in my head, and that connection is failing. If I need to communicate anything other than the most basic information at this point I will be typing on my phone and the person with whom I’m communicating will need to read what I’ve typed to really understand what I’m trying to tell them.

Level 5
No speech. This is when the words are gone. Just gone. If I open my mouth and try to make words, I cannot. It’s not a choice. It’s not even, like in levels 2 and 3 above, a strategy to maintain my energy levels. I can still make sounds. I can still hum tunes (wordlessly). But I cannot produce speech. It’s as though the connection between my brain and my mouth has been unplugged. I can usually still type perfectly coherent language (there is a disintegration of typing language sometimes, but it is much rarer) and all my communication will be by facebook message or typing into my phone or some similar method. However, even when I cannot speak at all and am totally mute, I can usually understand what is going on around me just as well as I can when my speech is at level 1. There is no loss of thoughts in my brain, no issue with being able to formulate arguments or learn or think or anything else. The thoughts are all there – I just cannot articulate them via my mouth. “No speech” is very much not the same thing as “no thoughts” and unless I am so deeply shutdown or in the midst of a meltdown or other crisis, I will be absolutely aware of what is going on around me – just not able to respond with speech.

So my speech varies between “articulate” and “nonverbal”. It’s not as simple as an either/or, but is a sliding scale, and I move between the levels fairly often, depending upon my level of tiredness, my mood, my circumstances, who I’m talking to, and what the sensory environment is. Most of this movement is beyond my control – if my words start to fragment and depart there is nothing I can do about it. I have, in the past, maintained level 2 rather heavily as part of my mask – the price for doing so is quite sizeable and leads to situations such as that described in Sudden Illness. It also results in the immense exhaustion I’ve felt over the years, and I’ve found that just allowing myself not to worry about speech and to let it ebb and flow as it naturally does has already helped my health and energy levels enormously. There is a sense of inner peace I get once the words completely go, a sense of calm, recharging, and stopping fighting.

In the past I didn’t know why, but I knew that once the socialising had finished, once I stopped trying to talk to people, once I went home from the restaurant after an evening sitting outside on the pavement, shaking and feeling terribly ill, once everyone else had gone home and it was just me, I breathed a sigh of relief and started to feel better. I always got a certain feeling, one that I’m still struggling to describe, but I can identify very easily, once I was alone and starting to feel better. It’s only recently, as I’ve been seriously experimenting with trying to speak, that I realise that is the feeling of speech being gone. Maybe one day I’ll be able to describe it a little better.

As I said in the previous post, this is still something I’m trying to analyse and to figure out. I’m still working on how I communicate to the rest of the world that speech is often either very hard work and requires intense concentration or is not possible at all. The amount of time I spend at each of the five levels I’ve outlined above is still fluctuating as I continue to adapt to my changed life and as I continue to recover, slowly, from the burnout that was already starting around a year ago. This is very much an ongoing process for me.

Losing The Words

I have known two things all my life (or, at least, as long as I’ve been old enough to know anything at all, which is probably somewhere around 40 years or so). The first is that when I get really really angry (as opposed to just very angry), I stop the shouting and the noise, and I show my anger by being completely silent. The second is that when I’m really really really tired (as opposed to just rather worn out and wanting to go to bed), I am also totally silent and I need to get away from everyone and just curl up in a corner and go to sleep.

These two extremes, the furious anger leading to silence, and the utter exhaustion leading to silence have always been part of my life. The first situation, the extreme anger, has always been put down to stubbornness, stroppiness, and a general wilfulness and unwillingness to compromise or to say sorry. I remember numerous occasions where I was utterly steaming mad and my reaction was to scream and scream and then to just run away and go and be completely silent by myself. I recall an argument with my father, sometime in my teens – at the time I kept a diary, and I remember writing up the experience afterwards and being frustrated that “this was my Dad, who usually understood me and was so like me and I opened my mouth to try to talk to him and no words would come out”. I can picture the scene now, me lying on my bed in my parents’ house, following some furious argument, the subject of which I cannot remember. I just remember feeling really really bad and that I couldn’t make any words come at all, about anything, not to apologise, nor to continue the argument, nor anything.

Equally, there have been times throughout my life when I have collapsed with total utter exhaustion. My mother and I were discussing these times recently, which have been known since my early childhood as “zonking”. She cannot remember exactly when “zonking” started, but she thinks that it was sometime after we moved house when I was 5 years old. I remember “zonking” as a child. I remember the absolute feeling of exhaustion, of being unable to move, of, sometimes, literally, lying down wherever I happened to be at the time. If I tried to keep going I would be sick, and would feel like I was terribly ill and had something terribly bad happening to me. A couple of months ago when I was discussing these episodes with my mother, she said that she remembers how my eyes would glaze over and I would go completely silent and unresponsive and I absolutely refused anything at all to eat. She said that the first few times it happened they were rather worried about it because it seemed so strange, but that they observed that if they simply put me to bed and left me with a glass of water in case I got thirsty then I seemed absolutely fine again the next morning. So nothing was done (and, to be honest, nothing really could have been done – if they’d taken me to a doctor in the 1970s and described these episodes then the doctor would almost certainly have been as mystified as they were).

And “zonking” was just part of my life and it always has been. I had these phases where I needed to go to bed and be silent and alone and I couldn’t interact with the world and I couldn’t do anything about it. It often occurred at times when I’d been out a lot and very busy, or when I’d been to parties or was away from home. It happened throughout my early adulthood and I simply went home from wherever I was and put myself to bed. It happened after I was married and I simply told my husband that there was this thing I did called zonking and that there was nothing to be done but to leave me to sleep it off and I didn’t know why it happened or why I was always silent, but I just accepted that it was a thing I did.

And for over 40 years I was a silent angry person who zonked from time to time!

Until I started to investigate autism. Until I ran away to hide in a shed in the summer of 2016 and didn’t let anyone know where I was for a while because I knew I couldn’t interact with them. Until I told someone by facebook message not to send any food over to my tent yet because I knew I wouldn’t be able to thank them for bringing the food. Until I realised that the times when I had this severe exhaustion were times not when I WOULDN’T talk, but when I actually COULDN’T talk. Because I started to try, even though I didn’t feel like it, and I found that the words were gone. I hadn’t previously attempted to talk at these times (a few “arguments” aside, when I just assumed that being cross rendered people “speechless” and that was what was happening to me) because I’d just run away or gone to sleep or cried or whatever. But as I started to experiment and to see what was possible, I realised that there was a reason I’d been running away or taking myself to bed or whatever all my life.

My. Words. Were. Gone.

Since I discovered this I have been doing experiments, such as described in Can I Sing? I have tried to talk to see what happens – I can make sounds perfectly well, but I cannot make words. The revelation, after over 40 years that I have been having nonverbal (or, probably more accurately, nonspeech, though I believe nonverbal is the usual term) episodes all my life, is quite startling.

And, although being unable to speak might, at first, seem odd from the outside, and, in some ways, can be frustrating because the world is so geared up towards speech, it DOESN’T FEEL BAD. In fact, what makes me feel ill, and sick, and distressed, is the effort of trying to keep talking when my words have gone. When I try to continue to be social and to act “appropriately” I start to get ill, as I described in Sudden Illness. When I let go of the speech, and just abandon spoken words, the nausea, the bad feelings, and all the illness feelings go away, and I can feel my system start to recover, either from the meltdown (in the case of the “angry silence”) or the shutdown (in the case of the “extreme exhaustion”).

I can also often feel the slide down into wordlessness. My sentences start to jumble and my speech starts to become unorthodox and to fragment (I’ll do another post about speech, and my different levels of speech sometime). After a while I become monosyllabic, and then, gently, the words just go, sometimes for several hours at a time, and even overnight. Although my written words can often be quite a big effort during this time and don’t always flow fluently, I am often able to communicate by typing written words when I am completely unable to produce speech, as I have described in Silence.

I can also feel the return. Initially the speech that returns isn’t totally fluent, and is a bit disjointed, with one syllable at a time. Then it gradually builds up until it is fluent again.

I am still exploring this. I am still discovering. I am still analysing my speech patterns and still experimenting. I know the feeling of being unable to speak rather well – I have been experiencing that particular feeling all my life – but I am only just starting to understand it.

Limit Exceeded

Two days
Out in the world.

Drinks in a pub.
Walking,
Talking,
To three other people.
Some difficult subject matter.
Decisions to be made.
Negotiating.
Head already overloaded.
Working so very very hard.

A meal out,
Eating,
While talking,
With noise,
And people.
More difficult stuff.
I managed half
My food.
Achievement.

Then home.

A stimmy evening,
Unsettled.
Sleep
A long time
Coming.
Wakefulness
Followed
Quickly.

Then up again,
Dressed again.
Coffee and a snack.
More noise
More conversation.
Lots and lots of voices
Trying to filter out
The necessary bits
And to describe
And explain.
Eating again too.

A shop.
My legs starting to tire.
The lights brightening.
A walk.
And, already overloaded,
Unable to cope
Unable to explain.
Needed neutral
Or gentle
Non confrontational,
Or silence.
Didn’t get it.
Head overboiled…

Meltdown.

Unstoppable
Inevitable
Out of my control
Fuse tripped
Bottom fell out
Of
My spoon drawer…

Trying not to bash my head
Against a stone wall.
Desperate to damage
To replace the pain
In my head
With easier pain,
To make the wrong feelings
Right again.

Collapsed on the pavement.

Pulling my hair
Tearing at my leg
Simultaneously
Regretting and glad of
Short fingernails.

Wishing I had never
Been born.

The sun
Dazzling
Through dark glasses.
Bright bright bright.

Distant voices.
Phone call.

Another universe
There are people there
But they are outside
My head.

I understand the words
But am unable to respond.

Words gone.
Connection severed.

I head for my car,
Safe space.
Mine.
Closest there is
To home.

Trying to sort
With others
By typing on phone.
It wasn’t supposed
To end like this.
I was supposed
To be stronger.

Driving home
Waves of nausea

The last emergency spoon
Used.

Sofa.
Blanket.
Darkness.
Silence.
Everything
Hurts.
Ears ringing.
Head in pain.
Body aches.

My husband messages.
He comes home
Early
To care for me.
I eat a few crisps
For dinner.

Eventually,
Exhausted,
I sleep.

I wake, tearful,
Wishing I was no longer alive.

Finally I get out of bed
At three in the afternoon.

After an hour and a half
I manage to get
A glass of water…

I know I should eat.
I don’t want to.
But I eat soft white cheese
With a spoon.

And recovery begins.

This is why
I have not blogged
For a few days.

Life is not
Easy.

Special Days

I’ve never really been a person who makes a big deal out of “special days”. I’m the one who never sends Christmas cards, the one who sends birthday cards to everyone at the same time about once every five years, the one who never bothered with bonfire night or Halloween or sending valentines or waiting until Easter day to eat chocolate or marking nearly any other sort of “occasion”. I should imagine that greetings card retailers would very soon go out of business if everyone was like me. The only days that have been an exception have been New Year’s Day, when I’ve tried to set goals for the coming year, pancake day, when we have pancakes for supper, and our wedding anniversary, when we have potted meat for breakfast!

Since the advent of the internet, however, these “special days” seem to get rather shoved in my face. And many of them are really ones I’d rather not think about. This time of year seems to be awash with “days”, and I’m not really enjoying the whole “day” experience very much right now.

On Sunday it was Mother’s Day (or Mothering Sunday, depending on your preference). As an infertile childless person, Mother’s Day really really doesn’t work for me. It’s a reminder, every year, of something big and painful and missing in my life. I know I’m not the only one who feels this way about it, for a variety of reasons. This year I tried to spend most of the day staying off facebook, but that was also, in its own way really tough – I now have very little life that isn’t online, and cutting myself off from my only real social life can feel really lonely at the moment because I’m not well enough to do anything else that would otherwise distract me for the day. I had been coping, just about, with life until then, but that really was the last straw, and I’ve really been struggling since.

Then, of course, next weekend, we have April Fool’s Day. Another day when I’ve tried, by and large, to stay away from any sort of internet or TV until midday. I have never understood the premise of April Fool’s – it seems to me to run thus: tell a lie, then when someone believes your lie, tell them they’re stupid! And some people, for some reason, find this funny. I KNOW I don’t get this sort of humour – I never have, and my memories of the day as a child were that people constantly told these lies, then told me I was stupid, and the whole thing is an exercise in embarrassment and humiliation. I got to the stage where I simply didn’t believe ANYTHING anyone said on April the 1st in order to save everyone the trouble. I’m quite happy to declare, these days, at the outset, that I know I’m an idiot, I know I can’t tell if it’s a joke if you don’t put a winky face by it, and please don’t complicate social interaction further by deliberately saying stuff that’s false (the same applies, by the way, to the internet “jokes” where someone then “catches” you and sends you a message telling you that you “fell for it”).

And now, to add to the pain of Mother’s Day, and the humiliation of April Fool’s day, there are two “new” days to add into this time of year. It is, apparently, World Bipolar Day on April 30th and Autism Awareness/Acceptance Day on May 2nd.

So here am I, an autistic person with bipolar disorder, sitting here wondering what I should do about this. Because here am I, supposedly articulate intelligent blogger with insider knowledge of both bipolar disorder and autism, and I should really really be doing something about these “days”.

But I am stuck. I cannot “perform to order”. My husband writes a weekly “column” for an online magazine, and has to produce this thing week in week out, whatever the weather, however many meltdowns his wife had that week, and however many times he was required to go to the shop that day because the only damn thing she’d eat was milkshake and cheese and we’d run out of milkshake and didn’t have the right sort of cheese. He performs wonderfully – he is a skilled enough writer that even when his spoons are running low he can still write, just as even when mine are low I can drive a car and play an orchestral viola part without much difficulty. However, I am NOT a skilled writer. What might or might not be apparent from this blog is that, although I might post the posts on consecutive days, I often write three or more in one sitting but then don’t post them all at once. I have days when I can barely even write a facebook status – so the thought of having to produce something particular for a particular day throws me into a horrified paralysis where I can’t produce anything at all.

So I feel guilty, because I should be doing something spectacular for these days. I should be making memes and posting them on the facebook group. I should be explaining bipolar disorder and autism to everyone I meet in the street. I should be helping others with both conditions (conditions was the best word I could think of here) to understand and to feel less alone and more loved and all sorts of other lovely positive feely helpful stuff. And I really can’t do all that just at the moment, because I don’t have the spoons. In recent months I’ve spent a lot of time on groups with autistic people – I’m becoming aware of the vast variability in people’s experiences of autism, I’m learning how offensive many autistic people find the “puzzle piece” to be and how it’s tied up with all sorts of harmful and damaging therapies that attempt to make autistic people “look normal” from the outside, while breaking them inside (one of the advantages of not being diagnosed as a child is that nobody actively tried to “cure” me, although the exterior pressure to conform and to behave “normally” did damage me very badly anyway – I looked great in my early 20s, and if I’d been known to be autistic as, say, a 23-year old, then I’d have been held up as a model of “success” and my graduation photos would, doubtless, have been turned into memes and plastered all over facebook if it had existed, but the damage was being done inside to such an extent that by the time I reached my late 20s it was a totally different story – they wouldn’t have been making memes about my life at 29, which largely consisted of breakdown, burnout, spending night after night banging my head against the wall, and downing bottles of whisky and boxes of pills in an attempt not to wake up the next day or ever again).

And I should be telling this tale. And I should be learning all the politics and finding out which organizations are listening to autistic people and which are not. I feel like I should be going online and telling parents to let their autistic children flap their hands and jump up and down and communicate in ways other than by speech and eat soft food and wear comfortable clothes and so on and so on and so on. And, as an autistic person who can communicate by writing, I should be advocating for all autistics to be able to be themselves because none of us should have to mask or pretend or to be abused or to damage ourselves in order to “fit in” with a world that is difficult enough to cope with anyway.

But I’m still struggling with my own issues right now. I’ve had my diagnosis for only just over 5 weeks. I didn’t even have a clue I WAS autistic until just over 7 months ago. I’m still adjusting. I look at the people who have written much better blogs than this and had books published and all sorts and I feel like I should be doing the same (I was brought up to be a high achiever – the fault of the exam results discussed in Expectations Gone) but then I remember I’m really very very new to all this. I’m also coming to terms with my own childhood whilst being exposed to parenting issues in a way that is really tough as I’d largely withdrawn from anything to do with childhood or children prior to autism stuff entering my life. And I’m in the midst of the menopause and getting used to the idea that my father has terminal cancer and trying to navigate the stresses of applying for benefits so we don’t end up bankrupt. So my head is rather full.

I lay in bed this morning wishing I’d never met my husband – because he is the one who has kept me alive and if I’d never met him I’d be dead by now and all this malarkey would never have happened. I’d have cosily committed suicide some years ago and my affairs would all be long since dealt with. (This sentence did, of course, prompt me to think that there must be a “suicide day” too, so I googled it and discovered that it’s not until September, so I don’t have to worry about that one for the time being, which is a relief). But that’s how low my spoon drawer is right now. (I KNOW this place, I’ve been there many times, and I’m not in immediate danger so don’t worry about sending the cavalry – my executive functioning is too poor to do anything drastic right now in any case and my autistic adherence to routine is keeping me going in a bizarre sort of a way). I’m better than I was earlier today, but in order to start to feel better my speech had to vanish – I have spent most of the day today completely nonverbal from a speech point of view (I often feel very very ill and extremely bad just prior to my speech disintegrating, and when the words go it is usually a big relief). Fortunately I didn’t have to be anywhere today or make any telephone calls!

And so, for now, I come to the conclusion that the best I can do is point people to this blog, which is the place that, so far, I have best managed to explain the many many thoughts that are in my head, and where I have translated more thoughts into words than, possibly, I ever have before. Of course, I’m not very GOOD at pointing people to the blog (although I’m trying), because I’m possibly one of the worst publicists in the history of publicity, but it’s here, and it is what it is. For myself I need to practise enough self-care to get through all this. I need to try to eat and drink regularly. I need to continue to use this blog as something to help me, rather than something to stress me (I’m not, after all, being paid to write it, and nobody asked me to write it – I sometimes wonder if anybody’s even reading it, although indications are that a few people are glancing through it from time to time).

Maybe I’ll see something on facebook that will trigger a blog post relevant to one of the “days”, or maybe it won’t. Maybe I’ll be more equipped to talk about awareness or acceptance or whatever next year, and I need to cut myself a bit of slack for now – I can’t answer every question on facebook or call out every mistaken post or fight with everyone who posits some crazy idea – I just don’t have the energy. I’m very much having to choose my battles right now!

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!