Uncomfortable

Like a pendulum
Swinging wildly,
Undamped.
My mind has still
Not settled.

Where I fit
Into this new identity
Is still unclear.

I talk to people
And many of them
Expect answers,
Where I still have
Only questions.

Some days
There is despair
And a feeling
Of life being limited
Permanently.

Some days
There is hope
And a feeling
That life will improve
Substantially.

But where I fit
Into this new identity
Is still unclear.

I am suddenly forced
To confront issues
I had discarded
Years ago.

Things very very uncomfortable.
Offspring. Female identity.
Neither of which I possess.
Autism forces these things
Into my consciousness.

Not to mention
My own childhood,
A door I had long since closed
Forced open for diagnosis.

Can open.
Worms everywhere.
Wriggling around,
Demanding attention.

The past
Begging to be analysed

But where I fit
Into this new identity
Is still unclear.

There is no stable backdrop
To my life.
Everything wobbles.
Precariously.

And my mind
Is trying to alter its perceptions
Of who I am
But progress is slow,
Like an ocean liner
Doing a three-point turn.

As I try to plan
For a changed future
I desperately search
For familiarity
And stability.

Autism is exciting,
Enticing, shiny, new.
But this very newness
Makes it also feel
Alien and unfamiliar.

I have never fitted
Into a community
I am not used to being
“Part of things”
As soon as I become so,
I feel uncomfortable
And withdraw…

Where I fit
Into this new identity
Is still unclear.

My past needs
Reframing.

My future needs
Replanning.

There is uncertainty ahead
How functional will I be?
What can I try to do?
What do I want to do?

Preserve the old
Familiar interests
(accepting my limitations)?

Embrace the new
And shiny interests
(accepting intimidations)?

I ask myself
And many times
I search for answers,
Where I still have
Only questions.

Where I fit
Into this new identity
Is still unclear.

My mind has still
Not settled.
It swings wildly,
Like a pendulum,
Undamped…

Where I fit
Still
Unclear

Unknown

Uncertain

Uncomfortable

Unable to Wait

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This wasn’t the original first post for this blog. I wrote another one, over a month ago, which was to have been posted after things were “properly sorted” and I had the confidence of a piece of paper to enable me to tell my story to the world.

However, “proper sorting” is taking too long. I was told that things would be sorted last week – they were not (more on that in the future) and the effect on me was so catastrophic that I became suicidal and spent 48 hours living one hour at a time, waking in the night screaming, constantly tearful, and hanging on hour by hour, minute by minute.

I’ve never been good at concealing things. I can keep other people’s secrets totally reliably, but all my natural instincts are to be open, straightforward, and plain-speaking about my own life. I have written candidly about my mental health in the past, and for me that is much much easier than concealing the difficulties I’ve experienced. This new facet of my life will be no different. After last week’s disaster I finally started to feel that life was maybe worth living again when I decided that I would proceed with the original plan (slightly modified) with or without the piece of paper. I also now know that getting that piece of paper might be difficult, and a battle, an uphill struggle – the person I saw last week told me that “intelligent women were a problem” and that I was “very complicated”. I became so distressed during the appointment that I ended up self-injuring. My husband and I will continue to fight on, but my new life and way of living has already started and I need to be open about it now because concealing it is destroying me from the inside.

I don’t expect most people reading this will grasp the full enormity of what has happened to me since the summer. I do know that other people have been through the same thing and will fully understand. Some who’ve known me a while and have a little knowledge of their own might not be surprised. Maybe some won’t believe me at all (hence part of the desire for the piece of paper). Some might not have the faintest clue what I’m even going on about and will reach for Google to try to make sense of it all. Or perhaps think I’m even more crackers than I always have been and will wander off for a cup of tea, scratching their heads as they go!!!

However, for me, this is huge. The biggest thing that has ever happened to me. No question. It dwarfs getting married, getting my degree, burying my relatives, even discovering I can’t have children (I’m not talking here about whether things are good or bad, just about their magnitude in my life). This is the biggest. Is it good or bad? The answer at the moment is probably both, to some degree, although the question is much more complicated than that – and a discussion for a future post. In general, though, I believe this new knowledge will transform my life – it already has in many ways.

It has caused me massive swings of emotion over the last few months, from deep depression to relief and excitement, from severe anxiety to calm beautiful acceptance, and has meant that I’ve had vast amounts of new information to process and absorb. It’s still taking lots of energy. I’ve read over 20 books, hundreds of blog posts (one reason I’ve chosen to blog is that others might feel less alone by reading what I will write here), and lurked quietly on groups and pages on facebook, learning as much as I can. I’m probably still going to make mistakes with new language, recently learnt, and I expect I’ll look back on these early posts in a year or so and laugh at myself or cringe, but this blog is now part of the process too. Please forgive any errors while I’m still learning.

And as I am still learning, I’m not really in a position to start answering lots of questions yet – I still have more questions myself than I have answers, and my ability to respond to comments and questions might be somewhat limited for some time to come. My brain is still massively overloaded with new information and I absolutely need to learn everything at my pace, doing my own research, in my own way. That is really really important to me. I have now reached the stage where I can present the initial research and give my paper to conference, but taking questions from the floor will have to wait a while.

I have entered a world that, paradoxically, is completely new but also absolutely familiar to me. I will tell you as much as I can about it all in the weeks to come, but I’m not going to say exactly what it is yet. Let me just say that it has blown my mind, changed my life, and made sense of almost everything. If you already know what it is or have guessed, then don’t reveal it yet in case there are those who like a story. I’ll tell you very soon, I promise – after I’ve given you just a little bit of background in the next post.

I am still very much me. The same me. Much of my life will return to a normal, maybe not that different from the old one, once I have fully recovered from the seismic effects that the discovery is currently having on my brain, but I am learning a new way to live. A gentler, more forgiving way. A way that I hope will make life a bit easier and more suitable for me, now that I finally know what I am dealing with.