Dissociative Disorder

To discover the name of an affliction is to be slightly reassured. If a problem can be bound and encased in words, it is not bigger than words. If it can be described, it is, by extension, not beyond our understanding, and can in theory be managed.

In 2000, I typed my new and unnerving symptoms into the new and unnerving internet. ‘Sense of distance’, I wrote. ‘Things aren’t real’. ‘Senses dulled’. The web, which, from its early days, excelled in diagnosis, gave me the title I was looking for: Dissociative Disorder.

If discovering the name of a problem can be comforting, capturing the essence of it in a decent metaphor can bring further solace, a further sense of mastery. For this reason, I’ve tried, over the years, to capture the essence of the disorder in less clinical language.

I have thought of it as a mist, a burqa worn on the inside, a veil covering all the senses. It is doubt made palpable. When I explain the disorder to a non-sufferer using one of these descriptions, they seem to garner a loose impression of what I mean. They hold a fragile, vague, incomplete understanding, patched up with guess work.  This description can also be used to explain how the sufferer experiences the entire world.

One morning, I woke up, and my surroundings had taken two steps back. I had had dreams more vivid and convincing than this. I got dressed and went into the living room. Intellectually, I knew that my sister was in the arm chair, nibbling a piece of toast with jam and watching The New Adventures of Superman, but I felt as if she was galaxies away. I knew I was as ‘present’ as I had ever been, but it was as if my skin and eyes and taste buds were no longer tools for experiencing the world but thick, downy duvets that I had retreated behind.

I must just be tired, I thought. I drank Red Bull on my way into school the next day, and got an early night. The following morning, I felt the same. In school, I stared at the graffiti on my desk. I tensed every muscle in my skull and tried to shatter the screen with force. It bent but did not break. I felt frightened, but at the same time, anesthetised. The emotions that were so intense a few weeks ago were now blunted.

This anesthetised feeling is the entire raison d’etre of the disorder. It does not begin life as a problem, but as a solution to the problem of overwhelming emotion. Faced with the tidal wave of unpleasant feelings that were part and parcel of adolescence, my mind built a sea wall. It rejected the sources of these emotions, but it lacked the precision to single them out, and so issued a blanket ban on everything.

Vladimir Nabokov wrote: ‘Unless a film of flesh envelopes us, we die. Man exists only in so far as he is separated from his surroundings… Stay inside or you perish. Death is divestment. Death is communion.’ Dissociative disorder is a mind’s an admission that the film of flesh is insufficient. It is another layer of separation to prevent the peril of communion.

The significance of the change hit me one weekend. My family and I went on an outing to Rivington Pike. This is a Lancashire landmark, and we loved to fill empty Sundays by climbing it. Hundreds of other local people did the same. As a kid, I decided that it was distinctly less boring than most other hills. Half way up, there was a hidden Japanese-style garden with fountains and a pond. The garden and the rugged woodland which surrounded it created a pleasing contrast between wildness and gentility. At the hill’s base, motorcycle gangs in leather sipped Earl Grey inside a tea shop, echoing this contrast.

My family and I would reach the top and sit on the side of the hill just below the summit to dodge the wind, which was usually strong enough to lift a greyhound off its paws.  We would eat our sandwiches stoically, silently, in formation, pointing out landmarks across the county: The Reebok stadium, Blackpool tower, the sprawling, curling housing estates of Bolton. That particular Sunday, I came to a disturbing realisation: my mind hadn’t just shrunk away from the boring bits, but the beautiful bits, the awe-inspiring bits: the height, depth and breadth of the entire world. This familiar, beloved view was now as moving and engaging as a sound stage.

When the panic receded, I realised it wasn’t quite as bad as all that. It was not the disorder itself that caused the most distress, but my belief in is power. That day on Rivington Pike I believed I had lost my chance to experience any of life’s riches. I had not. I have had the disorder for half my lifetime, and it has not prevented me from making lifelong friends, from falling in love, from learning or growing. It is not bullet proof glass, as I first feared, but a ‘semi permeable membrane’. Love can get through. Joy can get through.

A few months ago, my friend Laura called me from London. After swapping news, she sheepishly asked me, ‘Do you ever feel like the world is a million miles away? Like… you’re not really here?’

She was expecting blank incomprehension followed by a weak attempt to empathise. What she got was an abridged version of this post.

That day on Rivington Pike, I would never have believed the disorder could bring me closer to anyone or anything. But fifteen years later, a friend had found herself lost within the mist and I was able to reassure her that there was nothing, really, to fear. It was a peculiar paradox: we were three hundred miles from one another, and had been brought closer by our shared sense of isolation. It was comforting to learn that friendship, and the desire to connect, can outsmart anything the mind can produce to prevent connection.

The fog of Dissociative Disorder may disappear one day, it may not. Even if it never shifts, it will not have had the final word. The mist can be isolating. It can be terrifying. But I merely had to look around to see that I wasn’t alone within it.

The Cellar

As a child, I imagined that my moods were the storeys of a house.  When I was ecstatic, I pictured myself dancing on the roof tiles like a chimney sweep in Mary Poppins. When life was generally fine, I dwelled on the first floor. When I was sad, but not irredeemably so, I pottered about on ground level. It was a melancholy and boring place, but there were other people milling around, windows letting light in and stairs that I could ascend.

But this house had a cellar. It was a dark, dank hollow. There were no bottles of wine or tumble dryers or rusty bikes or other distracting remnants of the adult world within it. Inside it, a person’s senses were consumed with the basement alone: the darkness of it, the smell of it, the threatening sound of everyone else’s footsteps overhead. It was a place that took me out of contact with any comforting person or thing. The basement had a staircase, but, as in a dream, something unspoken rendered an occupier incapable of using it. My childish conception of this hidden, frightening, neglected place was my first encounter with depression.  I hadn’t yet entered the basement, but knew I had the capacity to do so.

I have told this story many times to different doctors in response to the question, “What do you think has caused your depression?”  I have concluded by saying that the basement is not a place that has magically appeared after a traumatic event – a job loss, a death of a loved one, or a relationship failure. Depression is an in-built dimension of my mind, a part of my personality. On the whole, they have found my  response unsatisfactory – the kind of throwaway, resigned-to-misery comment that is often made by the clinically depressed. If pushed, I’ll sometimes give in and recite neat little half-remembered trigger points.  Bullying. Appearance. Shyness. These things have all affected me deeply at different times, but I am not plagued by these things now. They dissolved into long-term memories many years ago. The only honest answer to that question is, “This is how I am built. For me, depression is a steady state, not a big bang”. This is not a statement of dull resignation. It is a statement of insight. As accepting the nature of my own mind – light and dark – was the first step towards minimising the power of its shadowy parts.

Right now I’m dwelling on the ground floor. I can appreciate the cooling cup of coffee on my desk, the way my fancy new wall clock worked right out of the box, and look forward to my boyfriend coming home for lunch. I can dwell in the present moment with the little, friendly, modest things for company.

I like it on the ground floor. But getting here was not easy. This blog is about how I found my way out of the cellar, and how I avoid the pull of the hollowness beneath me. I hope some of what I write will be helpful for you.