31/08/2020
Dissociating on a sunny day
31/08/2020
It is the fourth option we do not hear about: fight, flight, freeze… or detach. When the panic sets in or my brain’s smoke detector goes off, instead of running or putting my fists up my mind shuts down, and separates from my bodily reality, leaving me blind and helpless.
I have started research on dissociation. I read a book recommended to me called ‘The Body Keeps the Score – mind, brain and body in the transformation of trauma’ by Bessel Van Der Kolk. It is a detailed exploration of how the brain works in relation to trauma. It is extremely dense and I cannot remember much of what I have read once I have stopped reading but it is fascinating and I am learning so much. Being involved in this research allows me a degree of agency in my treatment, instead of merely being an Object in a chair. Event processing will come later; in the present we are working to understand my predominant symptom of Complex PTSD (cPTSD): dissociation. Ten months ago I wrote a post about my experience of it up until that point, but never posted it as, ironically, my dissociation became so prevalent I lost my ability to write.
This post was written during a time when dissociation was something I experienced at random during every day activities. I learnt to navigate the world while my head swam, and this was the nature of the beast before 2020 hit and they took a different form, one of complete incapacitation every day and every night. That is for a different post. This piece was written before my diagnosis, before we knew why they were happening, and my body remained a mystery.
My diagnosis of cPTSD in May changed it all and I have now commenced treatment. This short series on what has been a defining factor of my mental health issues for twelve years will follow that treatment and what I am learning, pursuing the goal of defeating the dissociation and living a present not dominated by the past.
Here is my head before then.
18/11/2019
Is She Drunk or Dissociating?
I was crossing London from east to west on two trains and a bus. I was wracked with emotion on a gross scale, a confused amalgamation of positive and negative feelings that were manifesting in physiological sensations, including the warning calls for the most extreme of these: dissociation. This included a headache that spanned the entire circumference of my skull, a tightness in my chest that felt like my heart and lungs were being scrounged by merciless hands, my face burning, stomach churning, Just. Keep. Walking. I might come out of this yet.
My vision blurred. I have detached. I was nearly twenty kilometres from my house as the crow flies. When I dissociate I talk to myself; I become my own voice of guidance. This was no exception; my mind is talking to my body in these moments and attempting to tell it what to do. If I have to walk somewhere it helps to step in rhythm so my body will move automatically and I can use my concentration to direct it correctly. Left, right, stay on time, one, two, one, two. I make sure to keep my head straight and only turn my body, because moving my head causes blinding pain, and all that is blurry turns white, and I am then much more likely to stagger or fall.
Mind the gap between the train and the platform.
I managed to board the train and even find a seat; I did what my old neuropsychologist told me to do and stared at one spot on the wall, praying I would eventually come back to myself, and in the meantime have the strength to make it through the episode. A few minutes later my mouth started to fill with saliva, another warning call. I knew I had about twenty seconds left before explosion; the train shot into the next station, Bank, and as the doors opened I lurched on to the platform and promptly vomited at my feet. People stared but kept their distance. They probably think I am drunk. I could see disgust on their faces but was too engulfed to feel humiliated. I have wondered, who or what determines if a person is humiliated? Is a situation objectively humiliating? Or does it depend on how the person feels? Who decides? I have had far too many public seizures to feel bothered by the scrutiny of a crowd now.
I sat down on a far seat on the platform while my stomach settled, and stared at an advertisement for an app that lets you book beauty appointments on the go. ‘You can get a manicure during your lunch hour!’ I saw a blurry human hand which moved around my field of vision. Five red nails twinkled through the haze. I wonder how much that hand model got paid.
Please stand behind the yellow line.
But which one is it?
I eventually boarded another train and sat with my eyes closed. I successfully changed trains at Notting Hill Gate – one, two, one, two, stand on the left, hold on tight, you-have-got-this – and was on the home stretch. Stairs and escalators are complicated when dissociating because they blur together and I cannot really tell where one ends and another begins. Descending is slightly easier; I just stay in rhythm and let gravity decide. That sounds dangerous but in the moment I am so consumed by counting one-two I cannot dwell on it. Ascending stairs is harder and navigating an upwards escalator even more so, as I cannot tell where the flat part is going to divide itself and turn into a step. Once I am on a step it is fine, it is just knowing where the step will be that proves difficult. However, I made it on to the next train. At High St Kensington I fell off the train and threw up on the platform for the second time, and for the second time the surrounding people simply stared, as I ruefully wished one person would ask if I was okay. I sat down and the man next to me looked at me with undisguised revulsion, stood up and walked to the other end of the platform.
Normal vision
Dissociating
I have spent time while writing this attempting to remember how I felt at that moment. Did I think, well he has no idea what I’m going through, or did I feel hurt, or misunderstood, or jilted by the world at large? Upon reflection none of those things are true. The truth is that I felt nothing. He wrinkled his nose at me and I just saw folds of skin. By then I was completely hollow, like I had left a part of my self on the platform along with the bile. My mind had truly detached from my body and left it an empty shell. I simply focused on the task: getting the shell home. Objectively speaking, I am left in an extremely vulnerable position, but when I am swathed in the haze so deeply I cannot think, that fact is similarly buried for a focus on where I am going, rather than where I am.
I did make it home. It is a simple exercise after that, I peeled off my clothes and put on pyjamas, took some Xanax and crawled into bed. I lay face-down for four hours, drifting in and out of consciousness. When I finally surfaced the sun was setting and I watched the shadows with weary but clear eyes. It is over. I felt the exhaustion down to my bones and in the next few hours before my actual bed time I moved gingerly. Dissociation has a huge physiological impact; my body hardly moves throughout – just walking and sitting – but the mental process drains it more than any physical activity I have ever done.
Isabel, why do you keep writing about dissociation? Surely once or twice is enough?
I need to fill in the gaps. I do not understand it. This is not simply some kind of anthropological project of mine; I am not reviewing a singular spectacle that plays across a theatre stage; there is no objective dissection when it is one’s own body under the microscope. I must write my own literature on the matter in the effort to understand the body I live in and that effort is a deeply personal one. When that cloud envelops me no other world exists, and that painful haze is often only a moment away; how can I not scrutinise this second nature, this well-trodden place? Perhaps this will further explain to you where I go when I am in this state.
This post has taken a long time to create because writing about dissociation has made me dissociate. A few weeks ago I was at my local coffee shop, drinking some filter coffee and thinking about some events of the last couple of months, attempting to write, when my vision suddenly blurred, my head started pounding and my chest tightened as if my heart and lungs had been stuffed into a very tight box, straining to be released. I stood up, shaking, and tapped my phone to a card machine - unable to read any of the numbers – and stumbled home. This had happened every day that week. However, this one turned into a nightmarish marathon where I was in the thick of the seizure for over five hours. I was lying on my back yet unable to rest, in tears from the blinding pain that came with every slight movement of my head while my stomach burned and my heart-and-lungs-in-a-box made my breathing shallow and laboured.
To this day I do not truly understand the science behind dissociation. I know the theory; in most cases a person is traumatised and begins disconnecting from reality because that reality is more than the body can handle. I have been traumatised over the last few years on more than one occasion, reduced to a piece of dirt, my humanity dissolved. How the detachment from this feeling actually happens remains a mystery. It can be a knee-jerk reaction to overwhelming feelings of anxiety, distress and memories such as these.
Any mental serenity I have enjoyed is fragile and one trigger can dissipate every feeling of safety and certainty; the ground crumbles and no matter how desperately I cling to the earth, that peace disintegrates, my mind vacates… I am not a person anymore. I am a puppet, free from all consciousness, a doll my mind views from the outside and must steer through the world, defunct and helpless. It is a very literal reminder that just because something only happens in my mind that does not make it harmless. My thoughts have consequences. They spread throughout my entire being.
Unfortunately I have had several episodes recently. I have experienced flashbacks and the memory of certain events - even as they only exist now as flickering images across my mind’s eye - can still cause a defensive detaching from the world in which they occurred and where I envisioned them once more.
Sometimes one has these delayed reactions because there is simply no space to process it at the time. After a traumatic event time does not stand still. The next day comes and you have to get out of bed and keep trudging; you cannot halt life to recover; the insane happens and then the days keep moving on. There is no quiet dwelling place, there is only the noise of an indifferent world progressing, so even if you are reeling, there are still things to be done and places to be. It is in times like these that the phrase, “I’m fine,” is born. You have to be fine, even if the very words are a fallacy, even if the air you breathe is thick with the lie. Maybe you are so convincing that you convince yourself. I am functioning so I must be okay. I want to set fire to my own mind, but I also alphabetised about six hundred books - I actually did this - so I’m fine. I don’t need help. It actually didn’t affect me at all.
In short, I am deceived by my own survival instinct. I cannot immediately see the appalling wound that has been inflicted mentally and emotionally, even if I feel it acutely, even when I lie in bed at night sensing actual punctures in my chest, humanity diminished, ragged to the touch. I am particularly remembering myself at the age of twenty-two and feeling this way for a long time.
I have recently been told that these seizures are most likely not purely psychological but tied up with my epilepsy. This complicates the enigma even further, because the signs of my neurological illness are so deep in my brain even a PET scan could only provide clues and no certainty. I have no idea of the boundaries of the seizures or the formula of psychological and neurological issues that cause them. Nobody does; I saw a neuropsychiatrist once and he wrote a report that was essentially a nonchalant shrug in verbal form, wrapped up in medi-speak. He sent me back to my regular psychiatrist and two years later we are almost no closer to understanding it. When it comes to a diagnosis it is now classified as a symptom of my schizoaffective disorder rather than an independent dissociative disorder. It is seemingly a response to anxiety. We hope that one day I will ‘grow out of it’. My first psychiatrist said that too. She told me that I would get past it in a few months. That was twelve years ago. I am not annoyed at her; I do not think anybody could have predicted the last few years.
Out in the world
I have a whole catalogue of locations where these have happened and many stories to tell. I had a seizure in the foyer of the main Arts building at university. I threw up on the carpet which was eventually replaced. One time I went to an office hour appointment with one of my teachers, had a productive discussion, and then dissociated all the way home, pausing every few minutes to throw up on Mile End Rd. Two passing women appeared by my side, concerned, and walked me all the way to my front door. While many people avoid me while I look like a drugged pariah, there are occasionally these moments of providence where people, particularly women, surprise me, cutting through the judgment and offering a hand out of the cyclone into a place of safety.
I have written this in fragments. It feels strangely appropriate; dissociation is a kind of breaking away, detaching from one kind of pain only to find another in the process. My existence is compartmentalised and every faction is bruised, textured and ragged along the edges where the tears occurred. It is a complete loss of control. My body acts of its own accord independent of my conscious thoughts. My mind glimpses a distant land while my cheek scrapes the pavement. I am alone in the view of the crowd.
My mental illness is not obvious until it is really, really obvious. I am ‘high functioning’ until I cease functioning altogether. I look ‘normal’ until I lose my ability to use the stairs. Stability is fickle. Life is still worth living though, because eventually these things end, and I can pick myself up again. I am still standing today and that is a gift I embrace.
Attempting to walk up a staircase
31/08/2020
This was life once and yet I live in the hope that it never will be again now treatment has started. As you can see, less than a year ago I was flying blind, not only literally as I stumbled around, but in the lack of medical understanding as to what my body was experiencing. My referral to the new neuropsychiatrist who made the diagnosis of cPTSD was the missing link we had been seeking for many years. As I continue treatment and my own research, more of the enigmas are explained; as I read ‘The Body Keeps the Score’ I saw my mind, my past, my heart, on those pages. I was confronted but comforted, and the frustration of the writer in November 2019 is no longer mirrored in September 2020. My dissociation is still here but my fear is not. I cast my mind forward to September 2021, and I see freedom.