Also Being Autistic

Bizarrely, the point made in the last post, that I find it hard to imagine how life could be good again when it’s bad and hard to imagine how it could be bad again when it’s good, was proven when I finally clicked publish on that post and immediately felt a weird sense of dishonesty.

I wrote the post a few nights ago, in one of the good phases, put it onto the blog site in draft, and numbered it to be posted next. But by the time publishing time came, I was struggling again, and it felt a little weird to post something so unrepresentative of my current state.

I also suddenly worried that I’d equated lack of social imagination with lack of empathy. If I did, then I didn’t mean to – I’m still trying to figure all this out and this blog is a learning and analysing experience for me as well as something for others to read if they wish to. I still need to find proper words to describe all these things better. I still need to organise and structure my thoughts better, and I’d like very much to be able to explain all these terms properly.

This constant back and forth, constant switching between feeling wonderfully neurodivergent and fabulous and relieved to have discovered who I really am, and feeling frustrated at how limited my life is and how difficult I find things, is still characterising my life quite strongly at the moment. I described some of the effects this has on me in Oscillating, and it continues to be true. I suspect it might continue to be true for some time to come.

The warm fuzzy feelings in Being Autistic are real. I AM happy to have discovered my neurology and to have solved so many mysteries from my life. I have no issues with people thinking I’m strange, or with stimming in public, or with stigma from anyone immediately around me (I realise this makes me massively privileged – when my friends see me flapping my hands or rocking back and forth they don’t tell me to stop, they just check with me that it isn’t an indication that I’m in any sort of distress). In many ways it’s all good. Lovely stuff – stick on the dark glasses and ear defenders, take my phone everywhere in case my speech fails, carry on with life. Proud autistic stuff, rainbow infinity symbols, stim toys, clothes without labels, and not a worry about what society thinks. Even before I was a nonbinary autistic I was an AFAB who hadn’t worn make-up or a bra for over 20 years and was happy existing in socks and sandals without caring what others thought. I’ve been miles away from many societal “norms” for decades, and I have enough confidence not to worry about that most of the time. If people like me and want to be friends with me on my terms, great, if they don’t, then no big deal. Now I have a reason to explain just why I fail to comprehend society’s codes I feel even more justified in being myself and not worrying about it. I am fully “out” as autistic to anyone who cares to know (and probably people who don’t too) and absolutely happy with that (to be honest, anyone who knows anything about autism can figure it out in about a minute anyway if they meet me – I do present as stereotypically autistic in many ways and even if I try really hard to mask, at the moment I’ll last only about an hour before I start to collapse or get sick). Additionally, I can take the pressure off myself to be “strong” so in many ways it’s even better than before – I can ditch the self-blame, I can relax, I can just enjoy being me.

However, there is a flip side. I am still coming to terms with the fact that I am not the Strong Woman of my mask. My day to day existence is, for the most part, relatively low quality. Most days I spend between 14 and 24 hours on my own in a grubby, overcrowded, dark flat, trying to recover from the days and times when I CAN get out and do things. I look at my former colleagues from college days, many of whom have houses, children, and jobs, and I have none of those things. Certainly my inability to sustain employment is down to me being autistic (and, maybe even more so to remaining undiagnosed for 45 years – I never asked for adaptions at work because I didn’t know I needed them and I lost every career and job I ever had), and my consequent large debts and relatively poor living conditions are a result of that. I read memes that tell me if I want something I have to work for it. I have done nothing less than work as hard as I possibly can all my life and the things I wanted didn’t come – those memes sound like cruel lies to me. I spent a pleasant evening socialising and drinking with friends a couple of weeks ago – the resulting overload caused an entire night of meltdowns and panic attacks and suicidal thoughts. Everyone else went to bed and woke up with a slight hangover. Every so often I ask “Why me?” and then I feel guilty because I am betraying the neurodivergence movement and I become frightened of those autistics who tell me that autism is not a disability, just a difference, but I am so very disabled by it so very often – no work, no money, some days I am a 46-year-old who cannot even get myself a hot drink or work out how to get enough food to sustain me or even manage to get dressed properly. And not all of this is “society’s fault”, it is just the way that life is and is often a result of simple practicalities. I am actually surrounded by non-autistic people who are doing their absolute damndest to understand me and to help me and to compensate at every turn for my disabilities – they are brilliant and loving and patient and I am very very lucky with them, but I am still struggling. And at those times I wish I was “normal” (yes, yes, yes, I know the old cliché that there “is no normal” etc etc, which, to be honest, to those of us who are so far up one end of the bell curve that we cannot even see the middle of it, sounds a bit trite), at those times I wish I could go to work for a week (even part-time) and go down the pub for a few hours on Friday night and enjoy a weekend with the family, which I can’t. I wish my gender was one that was recognised and understood by everyone (that is society’s fault), but it isn’t. That is the sort of “normal” I wish for…

I could go on. There is still much to explore. There are two sides to this, the dark side, where I just want all this to go away and to live a regular life (and, yes, I use the word “regular” advisedly, as I do the word “normal”), and the wonderful quirky side where I can finally be me and enjoy it and live a life that is right for me. Practicalities constantly intrude on me “being myself” because I have to eat and drink to stay well, I have to find enough money to survive, and unless I never go anywhere or do anything ever again I have to interact with other human beings in a way that often makes me very uncomfortable. To an extent, there is a part of me that needs some interaction too – less than most people I suspect, but not none at all.

I suspect these thoughts will continue for some time. I am still new to all this, only just over a year since I discovered I was autistic. As far as being knowingly autistic is concerned I’m only just learning to walk, at age 46, after over 4 decades of trying to be something else and failing at it. I’m also still very burnt out and still trying to find help, still waiting for referrals to services, still trying to discover if there is any medication of any description that might help (I can’t take many of the things that might help because of co-occurring conditions). Perhaps things will improve as time goes on – it’s still really really early days for all this stuff.

It’s also a big switch, a total change in life parameters, and I suspect I’m still fucking things up quite a lot. Still not explaining myself right – remember, I’m also very alexithymic, which doesn’t help. I’m still working it all out. It’s all still evolving, much like this entire post evolved out of a simple feeling that I should add a short explanation about the previous blog post.

Strange times.

NOTE: Since I wrote the words above, I feel different again. At the time I intended to post Being Autistic, I was in such poor shape that I couldn’t even turn the computer on to press publish and I had to do it the next day. I’m actually in better shape again now, happier, more relaxed. That’s how quickly things keep shifting, how fast the oscillations sometimes are. But I won’t write yet another post about that at the moment because this cycle could go on for a very long time!

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Another Step

Having admitted to myself that I was autistic, and having already approached the doctor to be referred for diagnosis, I knew there was something else important that I had to do. I had to let my family know what I’d discovered, and the obvious place to start with that was to call my mother.

I recorded my feelings about doing this:

Deep deep breaths. That was a biggie. Told my mother.

And then noted some of the things that she had immediately said when I’d told her that I would need information about my early childhood and please could she start thinking whether there were any incidents that occurred in my early life that she could remember, or any ways in which I differed from my brother (who is not autistic) when we were young, and could she possibly just start thinking back to the time of my early childhood and triggering memories because the assessment people would want to know.

And without even a pause for breath, my mother remembered being summoned to my primary school (as I’ve described in Circles) when I was 4 years old. She recalled me learning to read at age 3. She recalled my nursery teacher commenting on my behaviour at nursery. She recalled something about a hearing test at 7 months that went wrong because I didn’t behave like a 7 month old should and the person administering the test telling her off about it. She told me how I didn’t respond to spoken words as a baby, only to singing, and how I hardly slept and constantly fidgeted in my pram.

And all this was instantaneous recall, the moment I asked, with no pause for thought. Memories from over 40 years ago. Little things, none of which seemed significant at the time, and none of which was ever followed up (because it was the 1970s and I seemed healthy as far as anyone could tell and when my mother asked what babies were supposed to do (I was the first child and my parents were young and inexperienced) she was told that all babies develop in their own ways so not to worry about anything), all started to indicate that my development when I was very young was, in fact, rather a long way from what would be considered “normal” by most people.

This first conversation was, it turned out, only the “tip of the iceberg” as far as my childhood was concerned. There were further pieces of information to follow, and I’m still, really, in the process of absorbing them all and trying to go through the questionnaires that we did as part of the assessment process. Maybe I’ll manage to write about it all thoroughly at some point, but that point is not yet.

My instant reaction to these revelations was to make a bunch of hashtags:

#theplotthickens
#wouldseemivebeencausingtroubleforalongtime
#thiswholethingisratherextraordinary
#ialwaysknewiwasabitunusualbutbloominheck

I subsequently went through a phase of finding these discoveries about my early life really rather odd and weird, and in many ways, traumatic. It was strange to think that there were things I’d never have discovered about myself and my early life if I hadn’t been going for an autism diagnosis. My husband and I had started to document my own memories of childhood a couple of weeks earlier, but this phone call to my mother took things to a whole new level, because I started to discover things that weren’t part of my existing life narrative.

Furthermore, since I was never able to have any children, I didn’t know whether the things my mother was telling me about my early life had any resemblance to any sort of “normal” childhood development or not, and I ended up having to do a lot of really triggering research to find out, research that brought back horrible memories of infertility clinics and pain and heartbreak and failure, so it turned out to be a triggering and difficult experience from that point of view too.

And, of course, my own memories of childhood had to be activated. And many of them weren’t that much fun either – I was bullied consistently through school and even when teachers tried to find out why things weren’t as they should have been, they weren’t able to come up with any answers, despite sometimes trying, as I described in Head’s Office.

These things are things I still haven’t yet worked through, things that still upset me, things that I know would have been picked up if I was a child today. I can’t help feeling that had I known that I really was different when I was growing up, not just naughty, that I would have felt less bad, been less self-blaming, and not become the suicidal burnt out adult I now am. I’m still not really in a place where I can consider all the things I want to consider – I have to do it a bit at a time, because it is difficult.

My mother, somewhat comfortingly, said to me a few months after that first conversation, that she wishes she had a time machine. Of course, there are so many factors at play that it’s impossible to say that changing one thing would have produced this result or that result (I KNOW all the stuff about autistic kids being “written off” and told they’d never be able to get anywhere in life – I had exactly the OPPOSITE problem and was consistently told how bright I was and given massive expectations accordingly, expectations that I could never fulfill so I was doomed to failure). However, maybe I’d not have been chastised for meltdowns, not been forced to wear wool polo necks which hurt me and so on, and not have learnt, through my early years, to behave and to internalise everything because I was frightened of the consequences and the punishments.

Furthermore, because I learnt fast and turned out to be academically able, by the time I was at secondary school exam stage nobody worried about me. I was succeeding academically, top grades of my year, therefore I must be happy. What nobody knew is that I hardly bothered revising for my O-levels because I assumed I’d be dead by the time the results came out. I didn’t tell anyone because I’d learnt by then that you just didn’t talk about that sort of thing. You worked hard, you behaved, you churned out the exam results, and everyone was happy. It was all part of the act.

Except that the act had a massive cost for me – the thing that had eventually made me as well-behaved a child as I was able to be, turned me into a mentally ill twentysomething and a burnt out thirtysomething. And nobody really knew why until I was in my mid forties.

Getting an autism diagnosis late in life is a weird thing. It opens all sorts of cans of worms that have been sealed shut for decades. I had long since closed the door on my childhood, and on everything to do with children in general, sealed away in a place in my head marked “Do not open – just move on with life!” but I was forced to reopen the door, to take the cans off the shelves, and to let the worms loose all over the place. It was part of the assessment, and it is part of coming to terms with why my life has turned out as it has. It’s something that needs to be addressed as best I can in order to move on and try to build some sort of future with whatever life I have left. I’m not sure it was something I particularly wanted to be doing at this point in my life – having just moved away from all things child-related after my own failure to have any, the last thing I needed was to go back to my own early life – but it turned out to be necessary, and perhaps going through the painful stuff now means that there will be less of it buried and I’ll eventually be less mentally ill as a result, more at peace with it all, and maybe, possibly, more at peace with my own childlessness and consequent response to children, which is something I still struggle with terribly.

And, as I have read in so many places and am experiencing for myself, getting an autism diagnosis late in life is not only about the future, and learning how to live from now on, but also about reframing past experiences, reviewing all of life that has gone before, looking back at so many times when things have gone wrong, or been inexplicable, and looking at them from an autistic perspective. It’s part of the process of making sense of life, and, of course, the later the diagnosis, the more of life there is to go through.

And in my case, it’s not just me who is reframing past events. Many of my friends have now made sense of experiences they’ve had with me over the years. My husband now understands things that have long been slight oddities in our marriage. And my family are trying to understand the whole thing.

I made the first phone call to my mother a year ago today. It had taken nearly 45 years for her to find out why her non-sleeping fidgety baby had messed up a hearing test at 7 months old. As soon as I asked the right questions and explained what I’d recently discovered, it became obvious.

I didn’t even know I’d had a hearing test at 7 months until I started gathering information for an autism assessment!

On The Sofa

Legs rocking,
Foot hitting the sofa back
Over and over again.
As usual.

Moving my wine
From hand to hand
So I can flap each hand
Even numbers of times.
Ah. Flapping. Happy.

Flicking my fingers
And waggling them
Fast.
Flick flick flick.

Occasional noises.
Just sounds.
Tonight a
“Nya”
Sound.
For no reason.

Wrinkling my nose
Which is my newest stim
Only a week old.
I don’t know where it came from
But it is.
So I go with it.
Wrinkle. Wrinkle.
Feels good.

Twisting my hair.
Allowed.
Picking my scalp
No no no!
Trying to let it heal enough
To dye my hair.

I rub my face instead.
Distraction.

Rock, hit, flap
Flick, waggle, sound
Wrinkle, twist, rub.

Just a normal evening.

Stimming.

Variability

Today has been an OK day.
Not amazing,
Nothing much achieved,
Just clothes
And a bit of lunch,
But fine, OK
Perfectly contented
Just to be.

Yesterday was miserable.
I didn’t want
To exist
At all.
Really depressed,
Really low.
Not seeing any value
To my life
Nor any point
In staying alive.
Desolate.
Hopeless.

The day before was nice
I visited my best friend
Had coffee with my husband
Bit of shopping
Good stuff
Nice dinner.
Contented
Fine.

The day before was impressive
Coffee and breakfast
First thing
Cheese and mushroom toastie.
Two lots of shopping
Trousers, washing powder,
Bath foam, food.
All good stuff.
And then a 12K run.
Successful, good day.
If all days were like that
Life would be worth it
Totally.

The day before that
Tried to make tea
Couldn’t.
Drove to town, parked.
After three different coffee shops,
All too busy, frightening,
No words, even to ask for
A latte, which is what I always have.
No hope of buying food.
Returning home
In tears.
Fighting the urge
To damage myself.
Not able to eat.
Seeing no hope.
I’m a jobless, childless, useless
Person in their 40s
Who cannot even
Get a hot drink for myself.

This is the variability of my life.
This is the difference in capability
From day to day.

And I never know
How the new day will be.

And I struggle desperately
To imagine how life
Could be any different
From how it is
In that moment.

When it is good
I make plans
Based on the good persisting
And I imagine
Things will improve
Consistently
And I can achieve
So much.

When it is bad
I see no way
It is worth staying alive
And I have to fight the urge
To give up.
Sometimes
Taking it
One hour, minute, second,
At a time.

This is the variability
Of my life.

(And is also why
This blog
Is so unpredictable.)

Wild Idea?

A year ago today I posted the following status on my facebook wall:

What a day. Along with flu jab and asthma review, a very successful meeting with the doc who listened to a whole load of my waffling and has put in a referral to the sort of docs who will try to fathom what’s going on between my ears!*

Feels like a huge relief and real progress.

*good luck with that then folks!

Since, at the time, I wasn’t telling very many people about the “autism hypothesis”, I didn’t elaborate further on my visit to the doctor. It was easy just to talk vaguely about what might or might not have been going on between my ears and also to refer, as I did in another post, to “head stuff” because it had been well known for years that I had considerable mental health problems and I was already totally open about them, so, for most people that probably covered it.

What I didn’t mention at the time was that we’d purposely made a double appointment with my GP, and that I took my husband and about a dozen pages of notes with me. We’d made the notes while out on a walk a few days earlier (“Starting to examine my childhood”, from Still Here), taking 25 kilometres and six hours and several cups of coffee to persuade my brain to start thinking back to my childhood, and to pause every so often while my husband wrote my rambling thoughts down in a notebook he was carrying. I think very much better while on the move – in the car, walking, running – so it seemed like a good way to approach things. It had been a strange process, forcing myself to think back and to remember things I hadn’t thought about for decades – as far as I was concerned, the “real childhood memories” file had been closed long ago and I just remembered the sanitized version as part of my life narrative. I certainly hadn’t tried to remember the difficult bits, the painful bits, the bits that were needed for an autism diagnosis.

We’d already been at the surgery for some time before the appointment with my GP because it was also time for asthma reviews and flu jabs, so we’d seen the asthma nurse and discussed inhalers and so on first. By the time we were in the waiting area for the doctor I was ready to go home. I regretted that the only way of getting to the surgery was by car and so I couldn’t even have a drink to try to calm myself down. We sat and stimmed in the waiting room (although we still didn’t refer to it as stimming at that point as we’d only seen the word a few times and weren’t quite sure what it actually meant), and I was determined not to bottle it and give up.

I didn’t even know, back then, what “self-diagnosis” was. It didn’t occur to me that, having found something that might be “wrong” with me, my first course of action wouldn’t be to go and see a doctor, not because I had any notion of being “fixed” but because I believed that, as with bipolar disorder, with which I had considerable experience, autism was something the medical profession might help me manage (that turned out to be somewhat optimistic on my part)! I also, even at that early stage, needed official permission to “be autistic” and the thought of telling anybody that I was without an official piece of paper seemed far too wild to even consider. My thoughts on official diagnosis were developed further as time went on, and I examined some of them in Why Bother?

Once we’d been called in for the appointment, the conversation ran something like this:

Me: Hi Doc, this is going to sound well random and well weird and you’ll probably think I’ve gone even more bonkers than I usually am, but I had a bit of a strange summer and my head went a bit wrong and a bunch of folk said they thought I might be autistic or something so I read a couple of books and we made some notes about all sorts of stuff and, er, here we are, and, yes, I know it’s a bit barmy and a seriously wild idea and stuff and… but anyway… erm… well…

(all the time, jiggling my leg, flapping my fingers, and staring fixedly at a bit of badly done paintwork in the corner of the room)

I then looked hopefully at my husband because I’d run out of what to say next.

The doctor saved both of us having to say anything.

Doc: Oh of COURSE! It’s so absolutely obvious now you mention it. So sorry for not knowing earlier, but with only short appointments and so much to get through and so little time to spend with you…

(then, the doc paused, as if a thought had just come out of the blue)

Doc: Didn’t you have an incident at the swimming pool a few years ago? And they called us here and said you were violent and aggressive and you came in and said you weren’t violent at all but you were scared and distressed and they’d got it all wrong…

(there followed discussions of meltdowns, of how these episodes had been happening all my life, and of various other things, and by this time I was rocking hard in the chair and the pennies were dropping fast in the doc’s head, just as they had in mine a couple of weeks earlier)

The referral for formal assessment was being started before we were even out of the door. My GP had needed no convincing whatsoever. I didn’t know then that that had been the easy bit, and that finding somebody who could actually diagnose me as autistic would take a whole load more work, and that “letting the medics take it from here and look after me” wasn’t an option, and that I’d have to do my own research, fill in forms seemingly infinitely (that’s what it felt like at the time), and that I was only at the beginning of a very long journey, but that journey was underway.

I left the surgery and went round to my best mate’s house for tea. I told him that yes, the doc thought I was autistic too. He already knew what was going on and was totally cool with the whole idea and thought it made absolute sense. I then went off to a rehearsal that evening, and then away for the weekend to play music, still very fragile and broken after the summer, still reeling from the discovery, but starting, already, to accept myself as an autistic person, even at that stage. I still hadn’t actually said that I WAS autistic at that point – every time I mentioned it to anybody it was “it’s been suggested that I might be autistic” taking the label (or diagnosis, or whatever you want to call it) for myself without anyone giving me permission to seemed to be terribly presumptious at that stage, so I stuck to “might” and “a possibility” and so on.

The fact that my GP believed it made a huge amount of difference though, and something that had been “just an idea being pondered by me and a few mates” became something a little bit official. We’d told someone “proper”, who hadn’t dismissed the idea, and had, in fact, confirmed it.

I regained a little bit of confidence. Maybe I wasn’t totally crazy after all. Maybe this wasn’t some sort of “weird thing that happened over the summer but now we’re back to normal life everything just goes back to how it was and the “holiday romance” is over!”

It still felt really odd. Two months earlier I’d had absolutely no inkling that I might be autistic at all. I wasn’t one of those people who’d “suspected for a while” because I didn’t have enough knowledge of anything to suspect. I’d only started taking the idea seriously and investigating it properly myself about three weeks earlier. The whole of life felt so very peculiar and weird and like it had all gone a bit crazy somehow. My mental state was still fragile, and was, in fact, although I didn’t know it at the time, getting worse. Things felt wrong…

…but things also, suddenly, after over 4 decades of a different sort of wrong, felt right.

A Silly Tale

My Executive is not functioning
Their suit is creased,
They cannot find their papers
And their briefcase
Is full of ash.

The ash is from my burnout
And it spills all over the office
In great clouds,
Covering everything
In a fine dust
That will take some time
To clean up.

In the meantime
My constant hand flapping
Is spreading the ash still further
And it reflects the light
Coming in from the windows
And makes stimmy patterns
In the air.

When the ash settles on the desk
I like to run my fingers through it
And make circles in it
And then wash my hands
Because it feels a bit weird
On my skin.
Sand is nicer to play with.

My Words keep going AWOL
But they never leave a forwarding address
They just disappear.
I think they go off for a holiday
Sometimes.
Or perhaps they’re just down the pub
Enjoying a few pints
And a pie and chips.

Maybe that’s why my Diagnosis
Was so late.
It was sitting in the pub
For 45 years
Eating pies and drinking beer
And because it has such
Severe
Time agnosia
It didn’t realise that it had missed
The last train.

Although it finds trains
Rather stressful anyway.
And leaving the pub
Would have meant change,
Doing something different.
So maybe
It just gave in to
The inertia.

And, of course
Because everybody has such poor
Communication skills
Nobody was able to tell anybody
Where it was.

And night after night
My Executive got home
And ate the same takeaway for dinner
Every night.
Because even before the burnout
They couldn’t function very well
And needed their friend Routine
Who liked to have the same thing
Every night for dinner anyway.
And keeping Routine happy
Was always good.

Mask bullied my Executive
And tried to make them function properly
And told Routine to stop being so stupid.

Mask was an annoying tit.
Irritating and itchy,
No matter how many labels I cut out of it.
It looked good though
Everybody told me so.

But it got too warm.
Overheated.
It kept trying to keep the Words
At home
But they kept slipping out
The back door
And vanishing.

Then things started to melt
At the edges
Senses went a bit haywire
And there were explosions
And people started to notice.

My Executive stopped coming home some nights
And stayed at the office
To keep cool
And avoid the bullying.
Routine gave up eating
And sat in the corner
Rocking hard and hitting themself and tearing their skin.

And then when the Words got home
After a night on the town
They told me that my Diagnosis
Had been seen in the pub
And that closing time
Was fast approaching.
Last orders had been declared.

When my Executive
Returned from the office the next evening
They found Routine crying in the garden,
Clutching a fidget cube and a furry tangle.
My Words explained what had happened
By typing into an iThing.

Mask had got too hot.
Way too hot.
Melting down had increased
No time to cool.
Mask had cracked in the heat and would no longer stay on.

Sparks, flames, and total burnout.
Explosions so loud that ear defenders were needed.
Piles of smouldering ash everywhere,
Which my Executive tried to put into their briefcase,
Though they didn’t help with functioning
And eventually made a mess in the office.

But just as all seemed lost,
My Diagnosis finally got back from the pub
With an official Report
(And a kebab).

Mask should never have been worn for that long
Masks when worn for long periods
Can overheat
And are a burnout risk.
Safety procedures had not been followed.

Report said that
Routine needed care and love,
My Words should be allowed to come and go as they liked.
My Executive needed an assistant to function
(And would also have to sweep up the burnout ash,
Which could take a while).

Diagnosis explained that communication was hard
For everybody
And that Report had said so.

And everybody finally understood
What had been going on
And jumped up and down to celebrate.

Diagnosis was a bit drunk by now
So they went on the Internet
And ordered loads of spinners and toys and pretty lights
And everybody settled down
Under their weighted blankets
To recover from the events.

And they ate kebabs every night for months.
Because they always ate kebabs.
Because Routine liked them.

Limitations

Advice often seems
To tell me
To consider
“The positives”
And to focus on
What I
CAN
Do.

If I’m honest
This strategy
Isn’t always
Terribly helpful.

I’m perfectly well aware
Of my strengths
And achievements.
They’ve been pointed out to me
Many times
Over the years
(Because people seem to like
This sort of
“Feel good”
Stuff,
I think).

I don’t need this information
Again and again.
I already have it.

What I am finding
MUCH
MORE
HELPFUL

MUCH
MORE
HELPFUL

(Twice,
And capitals,
For emphasis)

Is to learn
What my
LIMITATIONS
Are.

I have been told
All my life
About working hard
And succeeding.

But the things
That I
CAN’T do
Have rarely been
Considered

Or have been ignored
Or have been thought
To be the result
Of me being lazy
Or wilful.

So,

I have continued
To blame myself
For my failures.

I have struggled
To learn strategies
To compensate
For my difficulties

I have never learnt
How to ask
Other people
To help me.

(Because I have always been told
To focus on my abilities
And strengths
And how strong
I am).

If I’m honest (again)
Then allowing myself
To admit
What I CAN’T do
Is a sweet blessed relief.

To learn that I am disabled
Means that I’m not bad and lazy.
It’s Not. My. Fault.

To focus on my struggles
Means I can start
To work out
How to cope.

To drop the “strong” act
Means that I have permission
To ask for help.

(And it’s even OK
To admit
That there are things
I will give up
Even TRYING to do
Because they use
Too much energy
For me).

It is relief.
Really really big
Relief.

After 4 decades
Of trying
To live up
To the high expectations
That so many people
Have had.

Can I stop now?
Please?

Can I give up the quest
To be impressive,
High-achieving,
Sparkling,
Witty,
Attractive?

And just be me.

Not impressive.
Not special.

Just me.

And allow myself
To consider not my strengths
(Because I’ve done that
For too long
Because that’s what people
Have told me to do)
But the things I cannot do
The things I need support to do
The things I find difficult
And the problems I have.

Because I need to do that.
I need to learn
I need to discover
What I CAN’T do,
What I’ve been faking
All these years,
And where I have been
Pretending
To be capable
And where that pretending
Has damaged me.

I need this time.
I need this space.
I need to be allowed
To be weak
And to learn
How that is
For the first time in my life.

Because that is new to me

It was never part of my mask

Or my plan

Or any plan anybody else
Had for me.

I was never taught
How to give up
Or to let go
Or to rest
Or to relax

Or to accept
That there are things
I cannot do

And that it’s OK
To stop trying
To be strong.

I believe
That only
Once I have examined
My weaknesses,
Accepted them,
And worked out
What to do about them,

Will I know
What my true strengths
Really are.