Mourning the loss of "Why"

First, I must make my apology for being silent for an extended period.  Suffice it to say, it was unavoidable and I will do not wish to bore you with the details.  I will say that recent events have left me in reflective mood; hence the subject matter today....

I have been tasked to support literacy in a class where many of the students speak English as a second language.  After the first lesson, I realised that grammar and spelling were not the issue.  The difficulty arose on interpreting the wording of the essay questions.  Students would wax lyrical about a subject without getting to the real meaning of the task.  It struck me that this is a difficulty I, and many autistic people share.

I spoke at length with their teacher about strategies for helping them with the questions which involved stating their understanding of psychologically-influenced decisions, and the discussion inevitably led to talk of our experiences of perspectives and misunderstandings.  My colleague mentioned a funeral he had attended many years before;  that of a male colleague who had died in an accident.  He mentioned the reaction of the man's autistic teenage son who, mid-ceremony, had turned to his grieving mother and asked if they could 'get a dog now'.

Now, I have a particular difficulty with emotionally charged situations, especially those as heavily shrouded in social rules and ritual as funerals...  I remember the funeral of my own father, when I was 17, and the huge anxiety I felt.  Interestingly, the anxiety was caused not by 'grief', but by the fear of not knowing how to 'act' at such an occasion.  The vignettes of outpourings of grief exhibited by the the other people at the funeral were at once fascinating and bewildering to me.  I did not cry, and although I was sad about the loss of my parent, I don't remember 'feeling' any different than usual. (I have strong emotions, but most of the time I struggle to connect them to particular experiences.) It did not affect me acutely, in the way it clearly affected others in my family. But I certainly felt shame. I could not conceive of trying to 'act' a certain way for fear of being 'found out'. I even spoke with friends at college and asked about grief, what it felt like, how it should be shown and how long it should last etc.  I waited for the feelings of grief (as described by my fellow students) to begin.  They never did.  What did affect me, was the clear concern and judgement on the faces of those who realised I was not reacting in the usual way.  I don't doubt the boy my colleague spoke of noticed peoples' shock and even disgust at his words.  I cannot bring myself to attend family funerals, to this day, for this very reason.

I thought about the boy my colleague mentioned and, after many years of avoiding the subject, I realised a sad truth.  It is not that I did not experience grief - it is just that grief is a constant. In one of our many TA workshops, Peter Flowerdew talks about 'the loss of "Why"  I must confess, the significance of this eluded me for some time, but I think I understand it now, and it is dangerous territory.

So, the "Why" refers to the process of making sense of the world around us.  It is about the journey we take through our experiences and the lessons we learn from them.  It is how we acquire the answers that allow us to grow in confidence and navigate the chaos that is life, and in the answers, we take comfort.

I crave answers.  Like many people with Asperger's, I am fanatical about researching, learning and sharing information, but there are vast tracts of my world that will always be closed to me:

I grieve for the things I have lost and the things I will never have.  Every day.  I grieve for the unspoken moments I have missed, the expectations I have not lived up to, the experiences I couldn't share, the joys that didn't register, the opportunities I never saw, the disappointments I have proved.  I grieve for the friends I will never make, the belonging I will never experience, the camaraderie that cushions, the intimacy that soothes, the feelings and perspectives I will never understand.  (Regardless of new skills and perspectives... the volume is too great.)

Do not confuse this with regret.  Regret infers that there might have been another outcome had different choices been made. Grief is the response to the tragic, unrecoverable events that may happen without warning and despite our every effort.  Grief is my background.  My baseline.  It is the expectation of loss that insulates me from it.  My emotions are nerves stripped bare, the comfort of 'why' is absent, and I dare not dwell on it.

It is this fear that has me looking to the repercussions of actions, instead of indulging my emotions. (I do not have the experience or skills to indulge anyone else's.)  It is this that has me looking to the future to find new problems that I can fix, and this, I suspect, that led that boy to be thinking about a dog, when 'he should have been' mourning his loss to the world.

I don't mean this to garner pity.  Just perhaps to shed a little light on what might appear to be heartless, emotionless behaviour at a time when everyone is vulnerable.  Consider those who are so vulnerable, they cannot afford to show it.

The Trust Relationship Between this Workstation and the Primary Domain has failed...

I can only apologise for the delay in posting my blog…  I wrote one for February and also for March.  I will post neither as, looking back, they were not my thoughts.  Suffice it to say that, (due to my condition (chronic migraine and allodyna) and the medication I have to take in order to function) my personality, and consequently, my outlook were altered both pharmacologically and by sleep deprivation.  I have no wish to share these experiences, and I don’t think hearing my woeful rants written during that time will be of any benefit to anyone, least of all, me. 

Despite the weather and disruption of March, things have recently become much more settled for me.  The situation at work (which was responsible for many of the difficulties of previous months) has been satisfactorily resolved.  When things looked bad, I applied for another job and was invited for interview, which I attended.  Before they finished their deliberations, the problems at work had evaporated, and I withdrew my application - this time for the right reasons. (The hours didn’t suit; the commute was a problem…  It simply wasn’t worth the move, despite my delight at the possibility of working in graphics once more.)  There were emergent opportunities in my job for including some graphics and marketing work… things were looking up.

It got me thinking about ageing.  I will be 50 later this year, and I think I am finally starting to feel comfortable in my own skin.  I still have no well-formed sense of self, but I am much more likely to consider my own needs when making decisions.  I am happy with my current work situation.  So, is this really just a plateau in the profile of peaks and troughs?  I think not. 

A little while ago, I was introduced to Erikson's theory of the Psychosocial Stages of Development.  I suppose I approached in much the same way as someone would an astrological forecast – fitting my experience to the categories and feelings, but I was quite sure, that I had not come out of this process unscathed…

There is nothing like the first flickering shadow of one’s own mortality to make you reassess your priorities.  Life, it seems, is too short.  I have had an interesting and varied work life.  I don’t need a highly paid, high pressure job.  I don’t want a long working day and short holidays so I hardly see my son.  I have other things queuing up to fill my time:  I have a book to finish with my son;  I am a director of The Different Engine; I have historical events to attend; I have paintings to paint, music to listen to, et cetera and so on…

Perhaps it is this age-earned ‘wisdom’ that was responsible for my decision not to post my previous two blog entries… The confidence to wait is something I have always felt I lacked in the past – my need for additional time to process probably played into my anxiety for not responding quickly enough, and fear; my tendency to make panicked decisions.  With hindsight, the waters were always calmer than they seemed at the time; the tempest exaggerated or wholly imagined.  

Perhaps this is the wisdom of age, or maybe a by-product of deepening trust. Trust is a fragile thing, but I have followed some excellent advice a friend gave to me several years ago: Surround yourself with kind people.   Trust is fragile, but I now realise that it gets stronger when maintained.  I have acquired a very select but extremely high quality group of friends over the last few years, and I trust them as much and more, than I have trusted anyone.  But I nearly walked away from my job when I perceived that my trust had been betrayed...  But trust must be maintained in the face of apparent betrayal, to be sure there is no solution to be achieved, no corner to be turned... Because I waited, a solution was found, an apology and a commitment made and trust was renewed.  It made me realise  just how many times I may have turned away too soon....

There is a central principle in TA. Eric Berne initiated the principle within Transactional Analysis that we are all born 'OK' — in other words, good and worthy. Frank Ernst developed these into the OK matrix, (also known as the 'OK Corral' after the famous 1881 Tombstone shootout between the Earps and the Clantons).

I realised some time ago that, for the most part, I have spent my life in the two left hand boxes, and this position is indicative of a complete lack of trust (in myself and others).  The title of my blog is "The trust relationship between this workstation and the primary domain has failed" and is the only surviving element of my discarded rants of last month.  You can imagine my metaphorical interpretation of this innocent computer error message - it was very much in line with the bottom left hand square of the matrix:  “Everything is broken and it won’t get better.”

Now that things have settled somewhat and my trust is restored, I can put my title where it belongs which is in the top right hand square of the matrix:  “Ha! That error message is a T-shirt, right there!  I’ll call IT and they’ll come and fix it”. 

The best of times...

It's that time of year again, and I had hoped to have something heartwarming, insightful and completely out of character for a logic loving, systematic, no-nonsense Aspie, to share with you all.  My Christmas tree is still up, so I've thrown in some Dickens, and have sprinkled it with a comforting amount of efficiency in the form of a 'round-up of the last year' so I haven't completely thrown caution to the wind...

I have never read much Dickens, or Austen, Tolstoy or any of the other great writers who's chief delight was in spinning tales of the human condition and the intricacies of complex family or romantic relationships.  I've tried a few times, but I get lost quickly - there is little common experience here to keep my attention.  That doesn't mean I cannot appreciate the masterful and inspiring skill demonstrated by these giants of literature in smaller doses - they are, after all, eminently quotable.

"It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair…" 

When I turned my mind to writing my personal round-up of 2017, it was this quote from Dicken's 'A Tale of Two Cities' that my mental Rolodex fell open on.  2017 has been a year of contrasts...

The year began with struggle.  I was desperately trying to manage an increasingly stressful job, (not, difficult, highly responsible, very important or suchlike... just really, unnecessarily stressful).  This was being made more difficult because I was trying to cope with debilitating migraines and equally debilitating side effects from unhelpful drug treatments.  There was, I noticed, an uncomfortable familiarity about the way I was treated as a migraine sufferer...  The lack of understanding about the condition, the isolating effect, the ineffectual and sometimes harmful treatments, the lack of available help:  I'd been down this path before...

But, (I said, boldly starting a paragraph with a conjunction, and including a split infinitive in the explanation) another path was being forged at the same time. This was taking place thanks to the tireless enthusiasm of a small group of people I have come to think of as Friends.  (I feel the need to pause and explain at this point, for those of you who might skip over the significance of this statement.  Naming someone as a Friend, for an Aspie, is akin to bestowing the Nobel Prize.  Make no mistake - great things will be expected. (I write this with the confidence of someone who knows their Friends will see the humour here - which is the most delightful part!))

The formation of our fledgling Charity "The Different Engine" has been a difficult, time consuming, fiddly, awkward, tough task.  And it has been an absolute pleasure to be a part of it.  At the start, thanks to the migraines, I could barely look at a computer screen, but now I have nearly finished our new website: TheDifferentEngine.net.  We have our workshops for next year set up, and interest in what we are doing is growing fast.  Leaflets, articles, books and conference appearances are in all the pipeline. I am learning more about myself and how Asperger's effects the way I experience the world around me, every day, and thanks to Peter Fowerdew's Aspie TA, I can share this learning with my husband, son, students and anyone else who wants to know about it.

Without it, I would not have had the confidence to leave the harmful environment of my last job (because I wouldn't have recognised what was doing the harm).  I would not have had the courage to talk to prospective employers about my Asperger's, (for fear they would not understand) and they would not have realised the breadth of what I could bring to the role (I would not have had the language to explain).  The essential support and understanding of friends and family that I have relied upon through this difficult year would have been drastically reduced, were it not for the the fact that they have joined me on this journey, and we all now have access to this common language.  After 3 years of investigating this tool and its applications, it still amazes me that writing about it can still raise a tingle of excitement and a hitch of breath.

A last minute meeting, recently, proved to the icing on the cake for me...  I had agreed to come along to a meeting arranged by my friend Rich Hall, with a representative from an Autistic support organisation from which we had we both received support over the years.  I wasn't sure if there was an agenda, or if we were just testing the waters, but I listened as Rich spelled out the key stages of our work over the past few years.  Before long, my enthusiasm got the better of me and I there I was:  Waxing lyrical about my experiences and the way my cynical viewpoint had been changed irrevocably by the efficacy of these techniques and methods...  Our audience was somewhat taken aback by what we had achieved in the time since our previous acquaintance, and he spoke at length about his concerns about the direction of Autism research in the international arena.  It was heartening then, to say the least, to hear his positive response to our work - developed by NTs and Asipes together.  This is the most important type of endorsement in my mind - that of people who have lost faith in the systems that are designed to help people like us (most of them researched and designed by NTs in isolation, or using NT designed and interpreted research from autistic contributors)...  If they can see the benefit and scope of what we are doing, then even my appalling self-doubt cannot put up a sufficient argument.  'Nothing about Us, without Us' is one approach, but we chose to look beyond 'Them and Us' to the potential that comes from truly understanding the strengths of diversity  from both perspectives.  What we have achieved could not have been done by NTs or Aspies working in isolation.  We have tackled the barrier itself, and it has toppled.

2017 has indeed been a year of contrasts - illness and healing, leaving a job and gaining new employment, giving in and taking the plunge, despair and hopefulness, self-doubt and self-belief, trying to help and allowing myself to be helped.  Not as eloquent as Dickens, nor as dramatic, but I feel this year marks an important landmark.  "The Different Engine" is about to make a world of difference to a world of people, hopefully, two worlds.  I am very proud to be a part of it.