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.

Losing my Sparkle

I listened recently to an abridged reading of Chris Packham's 'Fingers in the Sparkle Jar' (I will read the full text soon) and was mesmerised and deeply affected  to hear another voice that has experienced life in a similar way to me... One that has responded with similar vigor and been hurt in similar fashion. To hear the question: "Were you a happy child?" answered with such passion and certainty: "O course not! How can any child be happy?" struck such a chord, as did his descriptions of the intensity, detail and clarity with which he sees and experiences things.

We Aspies can live isolated lives, so I sometimes forget that there are others like me out there.  It makes me swell with pride when I witness an individual surprising everyone and holding misconceptions up to the light...  Showing  people that they don't quite fit in that snug pigeonhole to which they were consigned....  Turning out to be more complex than just that familiar face.

It soon became apparent that there was much here with which I identified.  As I listened, Chris began to explain his motivation - his constant drive to be better, learn more... to 'win' as he calls it.  I am very aware that, in lieu of the companionship, support and kindness that comes with friendship, I tend to try to impress people with my hard work, commitment, knowledge - anything that I can achieve with purely intellectual or physical effort.  I never try to 'wrong-foot' people, but it's easy to do just that, simply by being enthusiastic, eloquent and capable: How can somebody with all 'this' be this sad, this isolated, this exhausted?  It doesn't make sense to most NTs, but it couldn't be more familiar to me.

Chris also talks about his decision not to take his life, at a time when this seemed the only option.  I was reminded that I have considered ways to "take a permanent rest from it" on several occasions through my life, and to hear another voice acknowledging the lure of just not trying any more... to give up... to lose... well.  On the occasions when I slipped into those really deep depressions, I would write lists of pros and cons for this decision as I did for any important decisions; looking at the available data, weighing the consequences.  I could never isolate the exact scenario, so the outcome was never certain... I could never be quite confident that everyone I knew would be better off without me.  I have come to believe that I have some worth over the years, mainly because I can't deny the continued presence of my incredibly patient and understanding husband, and my amazing little boy... I must be doing something right, as they say.

I am looking forward to reading the book in it's entirety, despite its uncomfortable content...

The natural world has always been a balm for me in difficult times, and I have an enduring love of birds, insects, marine life, dinosaurs, reptiles and much more.  I spend as much time as possible near the sea, its rocky, semi-deserted shores and the vast cloudy panoramas it offers.  I feel truly relaxed when staring at the life in a drop of pond water under a microscope or at the night sky through a telescope.  I marvel at the colours of a Rose Cockchafer's wing covers, sit, fascinated, by the actions of a wolf spider who has lost her egg-case...  This is the 'Sparkle Jar': These are the things that bring me joy, convince me to stay, these, and the opportunity to impart their beauty and importance to others, if I can.