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Not Knowing the Worst Part

Personal Stories
 
 
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Not Knowing the Worst Part

I was brain injured in a traffic accident at age three. He was driving a 3 litre saloon and I drove a small tricyle, so I came off worst.

 

His bumper bar sent me flying into a lamppost, I was concussed, and my brain bounced a bit. The ambulance took me to casualty, where they decided I didn't have any skull fractures; but they did, according to a later hearsay witness, warn my dad that I might have brain damage.


Straight away, relatives noticed a distinct personality change. From being a "happy-go-lucky" child, I became withdrawn, fearful, anxious, perplexed and socially isolated. The trauma was compounded three years later by a savage beating in a schoolyard in which I was again knocked out (largely because of "difficult" behaviours which seem to have provoked the other kids), and after that the behavioural symptoms worsened. I started acting out in various delinquent ways, including throwing stones at cars on the way home from school. The first target was the Queen's car when she visited Newcastle-on-Tyne in 1954. That caused a mighty stir of tut-tutting in the head teacher's office the next day.


There followed a childhood and adolescence of increasing unhappiness and perplexity for me as I slowly became aware that there was something wrong with me - but I didn't have a clue what it was. When I first left home at 15, I still didn't know, and the perplexity was turning to depression and despair.

A FRACTURED PERSONALITY
While I still had some personality and could thus participate in a limited way in the process of meeting new people and making friends, I kept pissing people off by various clumsy acts of rudeness, outspokenness and other ill-timed and ill-measured actions. Life turned into a serial narrative of upsets, failures and catastrophes. I was not without external charms, but in hindsight I can see that my personality was fractured, and somewhat perverted into subversiveness by suspicion segueing into paranoia, much promoted by a long-held suspicion that my close relatives were keeping some major secret from me, as well as by treatment from them that amounted to serious emotional, psychological and spiritual abuse.


Well, they were indeed keeping a secret from me - the fact that I was brain-damaged. I didn't find out until 2002, when I was 54 years old. In that time, I spent a huge amount of effort (plus time and money) in various explorations of psychotherapy, on the assumption that I was suffering from a complex of emotionally based neuroses arising from ten years of abuse by a seriously dysfunctional family.


That work was not wasted: I managed to make serious inroads into my fearfulness, and identified the two early traumas as sources of post-traumatic stress disorder of type IIB(nR), the most complex and intractable type - early childhood onset (nR means no resources, II means more than one originating trauma, B means causes and effects inextricably conflated). However there were some aspects in which I couldn't make much progress. In

NOT KNOWING WAS THE WORST PART
In the mid 1990s, my psychologist and I agreed that as well as PTSD I also had dysthymia (erratic and inadequately governed mood disorder, in effect), social phobia, panic attacks and depressive episodes. But still the picture was not complete.

THE PROCESS OF SELF RECOGNITION
The final revelation came after my partner discussed with me some aspects of behaviour that I had not yet tackled. In line with her reading at the time, she speculated that I might have a mildish disorder along the Aspergers-autism spectrum. I consulted a neuropsychologist, and after going through the entire battery of tests and assessments, she concluded that I fit the pattern for "mild" brain injury, probably in the right frontal-orbital region.


That came as a gobsmacking shock. Eighteen months later, I hit phase two of post-diagnostic stunned mullet disorder when I discovered the information resources of BIAQ, and went through a gut-wrenching process of self-recognition, matching untackled aspects of my external personality, inner confusions and difficult behaviours with the details I read about the consequences of mildish brain injury.


The most immediately obvious comment is that the perplexity should not have gone on so long. My parents evidently knew that brain damage was at least likely, but at no point did they tell me - so I was, from age three, essentially alone and without any support in trying to face the world through a fog of cognitive, emotional and behavioural malfunctions, and the enormous perplexity of knowing, intuitively and from the growing amount of what didn't go right in my interactions with other humans, that something serious was wrong, but I couldn't handle it because I didn't know what it was.


That is my first complaint. They should have told me. By the age of seven, I was already consciously asking "What's wrong with me?" and getting no answers. It would not have been too hard for them to say gently at some point, when I was upset about some misfired encounter, "These things will happen, dear, it's because your brain doesn't work quite as it should" or something like that. They could have started preparing me early. There would have been hundreds of opportunities for them to say something of the sort before I left home, so I needn't have been quite so hopelessly ill-equipped when I ventured out on my own.

PARENTS SHOULD KEEP THEIR CHILD INFORMED
In the 1950s and early 1960s, even medical specialists knew far less than they do now about brain injuries, and the ethos of the age enormously stigmatised all things mental. My family obviously did not understand that erratic emotions and challenging behaviours are common effects of ABI; instead, they just labelled me as a wilful child and responded with vehement condemnations and mindless punishments - which only made me more subversive.


Here, then, is my first plea: parents, if your child acquires a brain injury, do not leave him (or her) in the dark! Find ways of gently telling him, help him fit his expectations to the rough misfirings that life will deliver him, and help him cope with the secondary wounding experiences we all go through. Do not assume, as my parents seem to have, that because he's brain damaged he won't understand. It cannot be repeated often enough that mild brain damage often leaves most of the intellect intact, so a dinted child will often understand far more than you might think.

NEED FOR AWARENESS AMONG PROFESSIONALS
And my second plea is to medical and psychological professionals. I must have seen a couple of hundred doctors, shrinks and psychologists in the 51 years it took to get my diagnosis, and only the neuropsychologist told me, at the end of that long search. Many of them were faced with odd behaviour and/or my complaints of life not going right in various ways.

 

Some diagnosed depression, some "psycho-neurosis"; some came up with spurious diagnoses of personality disorders that the literature on PTSD warns against. Many were snooty and judgmental. Not one got it right, not one managed to help me with my core perplexity. That represents a monumental failure on the part of the profession, and bespeaks the need for much more of the noble work of BIAQ and its sister organisations in raising awareness in the professions and in the community, as well as for GPs and others to learn to recognise the signs of ABI.


Having an injured brain is bad enough. Not knowing it, being assailed by judgment about "behaviours" from all sides, and coping not very well with a long string of employment and relationship failures, is a lot worse. If I'd known a lot sooner, I could have compensated better, made allowances, and been a lot less hurt by the uncomprehending reactions of others. If you suspect the possibility of brain damage in someone you know, raise the subject, and point him to a neuropsychologist if appropriate. Maybe the person is like me, and just doesn't know. If you're right, he might well be gutted - but he'll thank you for saying it if it is true, and you manage to start him on the path to coping at last. I wonder, how many more of me are there out there?

 

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