Karma Police - Addendum

I gave Karma a prod in my last post and bemoaned the consequences, but it turns out my little stash of validity has been looking after itself very well thank you, while my confidence has taken a dive.

Not long after sending my email withdrawing from the application process, I received an email from the prospective employer seeking a meeting to make sure there were no misunderstandings about the nature of the role that might have wrongly influenced my decision.  I considered replying to say I couldn't attend, but remembered another occasion when I had been asked back for a meeting and the outcome had been surprisingly positive.  I had enjoyed much of the experience yesterday, despite the pressure associated with the tasks and interviews - the staff were all lovely and I saw many familiar faces, so I thought I owed an explanation at least.  So I agreed to a meeting.

I don't know quite what I was expecting to hear, but the genuine warmth and understanding with which I was greeted was entirely unexpected, as was the fact that this person had clearly read my application in detail and had understood how my Asperger's actually enhances my ability in many ways.  They also seemed to appreciate my enthusiasm for learning and capacity for retaining factual knowledge, and even recognised it's value, and respected my honesty and openness in talking about my limitations and difficulties.  It also turns out that the hours for this role will allow me to keep up my commitments to a student group I run at my present school, which had been of some concern to me.

I have the weekend to mull things over, but I feel I have been handed a polite and eloquently worded invitation, and I am inclined to accept.

At Glastonbury this year, Karma Police was the last song played in Radiohead's set.  Even after they had left the stage the huge crowd continued to sing chorus after chorus...
"Phew, for a minute there,
I lost myself,
For a minute there,
I lost myself..."

Karma Police

What an odd title I have chosen for this post.  And yet I can think of nothing better to encompass the feelings I have at recent events.  Perhaps this is the first sign of my sense of validity starting to fracture...  (I wouldn't be surprised, what with illness and issues at work catching up with me.)
My confidence is crashing.

I have just sent an email eloquently backing out of the post-interview process for a job that represented the best chance at alternative employment I have seen in seven years.  And I don't really know why.  I think I may be scared of change, scared of failing, scared of succeeding, scared of taking on too much... but one thing is for sure:  I was told I would be phoned at 4pm yesterday after the interview, and did not receive a call.  It is not unusual for these calls to be delayed, and they would have called if I had been successful or unsuccessful; that is not in question.  But the delay gave me enough time for my terrified mind to talk myself out of accepting it.

At the moment, I feel sad, but relieved.  Tomorrow, I suspect I will be livid with myself.  By the time next term starts, and I am back in the toxic environment I am so desperate to leave, I'm sure I will be seriously questioning my sanity.

Interviews are such dreadful things for Aspies to navigate, and this one was no different in that respect...  A total of 4 hours in which to complete administrative tasks to do with behaviour and attendance tracking, a critique of a 20 slide Powerpoint for a Media lesson, a tour of the premises, a student panel, teaching a lesson (psychology), observing and commenting on a taught lesson (Geography), and of course, the formal interview... So many different tasks in such a short time in unfamiliar surroundings...  But I cannot bring myself to ask for additional time or consideration in these things - the nature of the role means it is pressurised and, naturally, they wanted interviewees to demonstrate they could cope with this kind of pressure.  And it is this kind of rationalisation that makes it so easy for me to stay exactly where I am.

It's odd how a simple delay in notification is enough to open to door to doubts; doubts to certainty, certainty to sabotage.  Of course, there is no guarantee that I would have been offered the post.  No guarantee that it would have been within my capabilities.  (There I go again.)  They asked me an odd question in the interview and, in a single moment, I saw that chasm of difference between me and most other people.  The question was:  "What would you do if you were presented with a challenging situation?"  Clearly, in hindsight, they were imagining the question framed in the sense of a challenging situation in the classroom, and were expecting to hear about some creative strategies for dealing with it.  I, however was flummoxed by it. Where would I start?  Practically everything was a challenging situation to me...  I did a pretty decent impression of a goldfish for a second or two before explaining my confusion, and they asked a more specific version that I was able to answer.

I talked a few posts ago about how my despair had evaporated at my new found validity, but it seems that it's not gone entirely.  It reminds me of a close Aspie friend I heard recently relaying his thoughts about his chances of ever being in a relationship with a partner and his resignation at being alone.  It made me sad, and I felt compelled to make supportive comments, but they would have felt like platitudes, because I myself feel a similar resignation:  A resignation that I will never have a job that shows off my skills or fulfils my potential (or comes anywhere remotely close to it).  People who know me, my work ethic, skills and ability would balk at such a statement, but the odds are stacked against people like us, externally and internally.  Perhaps I'm just too tired after all these years to keep trying.

But there is hope. Maybe it's my little stash of validity fighting back, but there's a little voice in the back of my head telling me that I'm too good for this job, or the new one:  That I am meant for something else, and if no employer can give me a platform for what I can offer, then perhaps I should build one myself.  Maybe it's Karma that I have such a distressing job.  Maybe it's Karma that I am so terrible at interviews.  Maybe Karma is trying to tell me something.  Maybe it's time I listened.

Still from Radiohead's 'Karma Police'

"I've given all I can,
It's not enough,
I've given all I can,
but we're still on the payroll..."

The Incident Pit

As I sit here, towards the end of a busy, full day of cover at my local secondary school, wondering how long the Epi Pen training will take and if my son will make a big fuss about his guitar practice tonight, I realise that things have found their way back to a kind of normality.

I have missed this.  Things have not been normal for some time.  Over a year, in fact.  I don't know how long this respite will last, and I have no intention of letting paranoia shorten any positive effects.  So, this is me drawing a line under the past year's difficulties, and looking ahead to a continuation of all the good stuff that had begun to happen.

However, I think it's worth pausing to reflect on how incredibly difficult these 'hiccups' and 'blips' in our lives are to navigate without a decent support network, real understanding or the ability to properly communicate your experience to those who need to hear it.  Of course, this is the norm for many people on the spectrum, who live every day of their lives without the comfort of a circle of close friends, or the confidence of being able to make themselves understood.  I count myself among the exceptionally lucky that I have a small but exceedingly genuine and responsive circle of friends, and an amazingly understanding husband and son, who have weathered my rants and complaints and soothed my pains and fears.  I don't know how I would have managed this last year without them.

They couldn't help me, however, when it came to explaining to medical personnel the effect of the illness with regard to Asperger's.  Whereas I am sure my Doctor sympathised that my inability to make concrete plans, stick to my schedules or escape into a book or that my ability to draw my super-detailed doodles had been utterly compromised by the threat of severe migraines, I am sure the full impact on my life was lost to her:  The function that reading or doodling fulfills in calming me down at the end of a stressful day of social interaction.  The role that drawing plays in my relationship with my son, the part it plays in our understanding of one another and our creative processes... Without my plans and schedules, I am rudderless and days can pass in a morose of sedentary catatonia.  The pleasure I took at exploring pattern has now turned to fear and anxiety due to the very real prospect of triggering a migraine... It is all extremely distressing and my anxiety quickly rises past it's usual elevated position to new heights, causing sleeplessness and a cascade of other associated difficulties.

It has always been difficult to explain to NTs, how the impact of  familiar issues such as these differs in autistic people.  It reminds me of something that we learn as scuba divers:  To dive within our limits.  We are told that things can deteriorate quickly into a serious situation if we do not follow this rule.  We are told to consider the Incident Pit:  A metaphorical place where a certain number of small incidents can be weathered without major consequence, but one too many, and nothing with halt your slide into panic and its inevitable, fatal result.  I realised that all these 'small inconveniences'  (not reading, not drawing, staying out of bright sunshine, not diving, not eating certain foods, not looking at patterns, not being reliable etc) had me skating perilously close to the edge of my own Incident  Pit.  I faced a future without any of my coping mechanisms, without any of my methods for sharing ideas or connecting with people, and I panicked.  It has been many years since the idea of suicide entered my head, and I'm fairly sure that the only only reason it did recently, was thanks to a rare side effect of the latest medication, but I resent bitterly that it arrived at all, and the terrible impact it had on my family.


So, in summary, although I do, tentatively feel as though I have turned a corner, and that some normality is returning to life, recent events have served to remind me how vulnerable we can be when we isolate ourselves, and how difficult it can be for others to see this.  It is ultimately up to us to recognise our limits, and when to ask someone to throw that lifeline.

Derailed

Things have apparently been going too well.  My blissful transition from anxiety-wracked nerdy under-achiever to contented, thankful, hopeful individual has been rudely sidetracked by something known as Chronic Migraine.  This insidious and little understood condition is extremely distressing and I have found myself ill-equipped to deal with it or its wider effects.

I am a creature of habit. As an Aspie, schedules lists and patterns weave the aspects of my life together into something that I can navigate reasonably successfully. I rely on reliability.  But my reliability has been taken from me, and it has been devastating.

To explain:  I had only had migraines rarely in the past, perhaps once every one or two years, and they were fairly mild: a few visual fireworks , a nasty headache tempered by a feeling of elation once the event was over.  Then, about a year ago, I began to have severe migraines with 'aura' (a visual disturbance that take a number of forms, but in my case, was a flickering zig-zag pattern that started in the centre of my field of vision but soon expanded to fill it entirely, for at least 20 minutes.)  This would be accompanied by nausea, disorientation and a loss of verbal dexterity (I would struggle to find the right words).  This would be followed by up to 8 hours of severe headache, centred in one or both eyes. I would spend the next day (if spared by another migraine) in a mindless fug - my thought processes muddled and slow, de-motivated and depressed.)

Within a month of having the first migraine, they were occurring almost every day.

My life stopped.  I could not work.  I couldn't drive. I couldn't manage a decent conversation.  I couldn't watch the TV, read, or work on my computer.  I couldn't work on my book, draw or paint or write my blog.  I couldn't go outside in the sunshine or open my eyes in the bathroom thanks to my striped flooring.  Worst of all, I couldn't think.  I have let people down, missed deadlines, broken promises and failed to turn up.  All cardinal sins to an Aspie.  I feel as if I have regressed to the sorry state I was in when I was 20: No confidence, no prospects and no idea.  Only the stalwart support of my amazing husband and son have kept me afloat, and for that I am extremely grateful.

I have always avoided taking medications - I seem to be particularly sensitive to their side effects and have suffered many that were quite severe and rare.  The drugs available for managing chronic migraine come with lists of side effects that are almost more frightening than the thought of a never-ending migraine.  Over the course of the next 6 months I tested medications and compared side effects and efficacy.  Nothing seemed to work and everything made me feel terrible.  It is testament to my desperation at this point, that I settled on a regimen that blocked only most of the effects of the migraines, but left me dizzy, faint, prone to blacking out.  (Being unable to drink alcohol or go diving now seem minor considerations.)  Now, however, the medication is failing, the migraines are back with a vengeance and I am back at square one.

I find myself wondering whether I can realistically continue to work at all.  How can I offer services when I am so unreliable?  I cannot convey quite how horrendous this concept is to me.  This is the one thing I had complete confidence in:  My ability to get stuff done.  The one quality of mine that was never questioned by anyone:  I could be relied upon.

So, I find myself about to embark on a new regimen of scary drugs (the list of instructions and side effects for this one took a full 45 minutes to read through!) that will lessen the effects of the migraines at the acceptable risk of liver failure, kidney stones and blindness.  As I sit here, feeling my neck stiffen and watching the tell-tale sparkles appear at the periphery of my vision, I hope I have made the right choice this time...  I am still waiting to see a neurologist, a year down the line, but there is no guarantee they will have anything helpful to tell me about this debilitating and misunderstood condition.

The hits keep coming...

So, has the bubble burst?  Has my new-found validity run out of steam?  Met it's match?  Died a death? The answer is most assuredly: No.

Indeed, I have put it to the test.  I have thrown everything I can think of at it:  There have been social events, stressful health issues, concerns about the educational future of my son (SATs and Secondary Schools), and the most potentially incendiary of all: A meeting with Senior Leadership at my school: (a second attempt at an abortive OH follow-up meeting that led to a very public meltdown...)

I had given it much thought, of course; (don't we always?) the reasons why this meeting ended so quickly and so disastrously...  The unexpected venue of the large conference room next to the Principal's office... the equally unexpected attendance of my line manager and a representative of the School Federation's HR department, as well as the one person I had expected.  As they began to go through the points raised in my OH report, I immediately began to feel defensive, hearing demands instead of questions, ultimatums instead of realities.  I felt tears prickle at my eyes as the panic rose, and that was that.  Less than 5 minutes and the rest of the day spent agonising about how annoyed everyone would be at me, that they had arranged this meeting and made the time... etc. etc.

Weeks passed, and so did the TA 101 part 2, (where my husband's TA Epiphany took place) and where validation was achieved, despair was mislaid...  Then came the email:  Would I like to meet up and try this follow-up meeting again?

Was I stricken with terror?  Did I arrange to be absent?  Did I refuse, saying it wouldn't be necessary?  No.  Not only did I agree, but, when the meeting details were sent - I asked for them to be changed:  Could we meet somewhere less formal?  Could it just be the two of us?  Of course, this was accepted, because they are reasonable requests.  I was very pleased with myself indeed.

When the meeting came around, the atmosphere was entirely different.  I asked that we omit the blow-by-blow account on the OH report, in favour of an informal discussion about things I found difficult at work.  I talked about the lack of interaction with my line manager, my difficulty with networking.  I spoke confidently about what I have to offer, and my frustration at not being able to communicate it.  I spoke about the shame I feel that I have to ask for explicit, verbal feedback because I cannot rely on picking it up through non-verbal cues common in the professional relationships most of the staff here share, (mainly because this is often misinterpreted as needy or egotistical.)  As the conversation went on, the panic never materialised... I felt almost equal, justified, calm, articulate - my vocabulary did not desert me.  I voiced my suggestions and they were not dismissed.  There was no awkward end to the meeting.  We were just two colleagues walking to our next appointments and casually finishing a conversation ignited by our discussion.

I realise the only thing that has changed is my attitude towards myself.  My ability to understand non-verbal communication has not improved miraculously, I have not become more confident, more social, observant...  No.  And the hits keep coming. But I now know that other people can understand my world, and that gives me validity.  Therefore my thoughts, words, feelings and actions must be valid:  This upturn in my professional fortunes is merely the result of my analytical mind applying new knowledge to an existing situation.

But it changes everything.

In a different light: A full-disk multiwavelength extreme ultraviolet image of the sun taken by SDO on March 30, 2010. False colors trace different gas temperatures. Reds are relatively cool (about 60,000 Kelvin, or 107,540 F); blues and greens are hotter (greater than 1 million Kelvin, or 1,799,540 F).
Credits: NASA/Goddard/SDO AIA Team

Invalid

I have been struggling with the task of adequately describing the sea change that has occurred in my life - to verbalise the subtle, yet profoundly positive shift that has occurred in the relationship I have cultivated with my husband for 30 years.  I have considered and rejected numerous passionate adjectives to illustrate how deeply I feel this change and how shaken I am by its implications. However, none seems appropriate.  Instead, I find myself drawn to focus on what is now absent. What has been alleviated.  What is no longer important... There is a word I keep returning to in my deliberations:  Invalid.

Invalid: Logically inconsequent.
Invalid: Being without foundation or force in fact, truth, or law.
Invalid: One who is sickly or disabled.

Whether spoken as an adjective or a noun; what an awful word this is:
I see now that this change is more to do with what has been lost, not what has been gained. I have been an invalid and invalid, all my life.

Every soul seeks validation, whether it is from family, friends, colleagues, strangers or the wider public...  Most will receive it in some form, at some time or other - although the quality, quantity and frequency may vary.

One of the most sad and debilitating aspects of life with Asperger's is that the neurological differences present make the social mechanisms one would usually apply in acquiring this validation seem to be absent or so underdeveloped as to appear absent.  We do feel however, (and in exquisite detail) the pain of our failures and the void that exists in its place.

We attempt to compensate for its loss by using systematising strengths to develop valuable technical skills, in-depth or encyclopedic subject knowledge, or to collect catalogues of 'appropriate responses' and body language that can be mimicked. The cruel truth is that these mechanisms all so often exacerbate the lack of validation instead of helping.  (People are intimidated by my skills, confused by my subject knowledge, and suspicious of my programmed responses.  My acting is never quite good enough to fool everyone all of the time, and to be caught out is disastrous.)  Even on those rare occasions when validation is offered unconditionally, we may fail to recognise it, or even learn to avoid it, as being without it is more familiar.

I am astonished, therefore, that a simple knowledge set, gifted to my husband and myself, could have overturned such engrained mechanisms and processes so quickly and so completely. The odd reality is that I have not changed.  All that has happened is that my husband has shifted slightly in his perceptions from 'sympathise, but will never really fully understand' to 'I get it'.  I feel that my response can be eloquently characterised as 'Oh. What?'

Every attempt I have ever made to explain my experience, the way I think, my difficulties etc. in my entire life have all led to the same disappointment.  Cumulatively, the effect is better known as despair.  This is the crux of why I am struggling to process the effect of this knowledge - my despair is missing.

Just knowing, really knowing, with utter surety that someone absolutely 'get's it' has been enough to make that despair evaporate.  All the incidents that usually highlight my vulnerability and failures are passing without their usual effect.  The crushing aftermath of misunderstandings has neglected to materialise.  The validation I am used to clawing from all the wrong places is no longer important.  I now have validation from the one place that matters.  It is enough.

Anything is beautiful if you look at it right... (Left behind - Kyle Wilson photograph)

The feeling is Mutual

I have lived for many years with the unshakable and certain knowledge that I was alone.  That no-one would ever truly understand my world, my experience, my truth.  For two weeks now, I have been rather off balance - my certainty has disappeared and normality has yet to return, because return it must:  If it doesn't, I will have to think of something to replace it with, and this is new territory.

I have grown closer to people in the last year or so, special friends who share my experience, whose insights I value, whose company I genuinely enjoy, but the loneliness persisted.  Something fundamental has changed since the TA/Aspie workshop that we attended a fortnight ago, when, shockingly, my NT husband went from borderline cynicism to  wholehearted devotee of TA. He acquired an almost miraculous appreciation, not only of the difficulties I face as an Aspie, but also the breadth of the empath/systemiser spectrum and his place in it, and the power of TA to bridge the enormous chasms that litter our attempts to connect with people.  It was somewhat unexpected, and I wanted to give things time to return to normal, for his enthusiasm to wane, for the bubble to burst. The odd thing is that none of these things has happened.  And, even more unexpectedly, I find I'm OK with that.

I have come to the conclusion that this is due to suddenly having a key person in my life who genuinely understands, wholly, why my life is the way it is. He 'gets it.'

This is The Most Important Person In My Life, and until now, I was certain he only excused my mistakes, tolerated my idiosyncrasies, weathered my anxieties. I have played my part without the innocent wisdom of genuine sincerity. I merely support, agree and frown my concerns with no real expectation of understanding. This is no longer the case. He 'get's it.'

We have talked and talked and talked.  We have sat in silence, grinning at each other between intervals of hand-holding. He tells me he's less stressed now, and that he no longer feels the need to start conversations with 'don't take this the wrong way' or to answer 'it's nothing' when I ask why he's upset:  He gets it.  I go to work and experience the same old problems, the same lack of understanding, the same pressures and anxieties but somehow, they no longer seem to accumulate into the overwhelming assault that left me exhausted at the end of every day.  I brush them off:  The Most Important Person in my life 'gets it'.

My friend, Peter assures me that this is, in fact, the experience of Mutuality.  This is unconditional; a place where communication is effortless, where I am accepting and accepted, where I am welcomed. It is a gift: A sublime edition to our hard won and solid foundation, 25 years in the making.

(I suppose I should wish my husband a Happy Silver Wedding Anniversary while I'm thinking about it... chances are I'll probably forget by next August!)

Binary system - stars in mutual orbit