Two decades is a long time in anyone’s books; two decades is even longer, when you’re desperately searching for help and being convinced that maybe you should just be stronger.
Two decades – that’s how long I asked for help, but I really needed the help two decades before that.
Four decades. Forty years. A lifetime.
Once, a colleague told me that I was lucky. Someone like me has had such an easy life and would never understand how hard it was to have to struggle with things. Someone like me would never understand how hard it was for people who’ve had traumatic lives. That’s how well I covered up my life. He had made the assumption that successful people can’t have experienced trauma. That trauma renders you a blubbering mess, rocking back and forth in the wing of a psychiatric ward screaming obscenities. However, I was a blubbering mess. I had just mastered the art of creating a facade, of pretending that I was okay.
The reality is, that if I stop long enough, I can no longer ignore what haunts me; so I just don’t stop.
Life screams at me from all channels. I see everything through a filter that distorts my experiences and tells me that I am in constant danger. I live in a heightened state of awareness and the life I live is exhausting.
I can be thrown back through time by a meme, a joke, a smell, a touch, a word, a colour; I can be thrown back through time by the very life I live. I can dissociate to protect myself – or fight to the death. I am ready at all times, because my life taught me that life itself is the most dangerous place for me. What didn’t kill me didn’t make me stronger; it damaged me irreparably, and I am struggling to heal.
Post-Traumatic Stress Disorder (PTSD) is an oft-time bandied about term, used so flippantly, that so many people see it as a joke. The trouble with this is that it makes it harder for people to get help. Mental illness itself is a taboo subject, and once people find out that you have a mental illness it becomes the lens through which they view you – the lens through which they view your actions.
Suddenly, any emotion is attributed to this mental illness.
The truth is that, yes, quite a lot of how I feel is clouded by my mental illness. Yes, many of my reactions are designed by my brain to protect me; but my emotions aren’t caused by the PTSD – I just need to do a lot of work to make sure the PTSD isn’t in control of my life.
My PTSD is caused by childhood trauma. In my case, a series of traumatic events that happened so constantly that the level of despair I felt was overwhelming. My life was a relentless tsunami of pain, and it battered my brain with such force that I was left feeling helpless and without a voice.
Born in 1975 to an Australian father and a Dutch-born mother, I should have been the apple of their eyes. Instead, their first born had a debilitating series of congenital deformities. Imperforate Anus- with a recto-vaginal fistula, Sacral Agenesis and a Tracheal – oesophageal Fistula. I needed surgery urgently, and survived to have a life where my childhood was spent in hospital. That in itself is enough to cause PTSD, and many of my peers who also have VACTERL Association also suffer from the medical trauma that plagues my life. There are memories from my hospital stays that can, quite simply, suck the breath from my lungs and cause my heart to beat so swiftly that I almost faint. But I don’t. Instead, a wave of fear melts over me and I have to remind myself that I am grown, that I am no longer in danger, that I am alive.
Safe, strong, resilient.
Those are my words. Those are the words I use to ground myself when my brain is screaming at me and telling me that it cannot cope with my surroundings, my memories, my life.
And yet, that experience, the one that is often the most overwhelming for others with VACTERL Association, is but a drop in the ocean for me.
I have other experiences that have left their mark, and they have so become tangled in my brain that once the trigger is pulled, the seismic waves pulse through my brain and set off a series of reactions that are hard to maintain.
Despite having quite serious medical needs, I was not given the medical treatment I needed. This left me incontinent and the level of shame I felt for not being able to control my cleanliness left me hating who I was. My father especially, believed that I chose not to be healed, and so beat me whenever I had faecal incontinence. This was often. I began to hide the evidence of my accidents, and saw myself as the abomination that he called me.
I was dragged up to the front of the evangelical church we frequented. Jesus was asked to heal me over and over and over again. I was ‘healed’ in the name of Jesus our Lord and Saviour. I have had the Devil cast out of me, cast out of my bowels, cast out of my life – but still, I soiled myself. This abhorrent rejection of Jesus’ healing (on my part) resulted in my beating. It was clear that I had chosen to continue to be incontinent, as Jesus would never have chosen to leave me unhealed.
This utmost faith in the healing power of prayer led to our whole church’s belief that no medical intervention was needed – for anything. Everyone was prayed on or over. Children with diabetes were not given insulin, children who wet the bed were beaten, and household items were purged from the homes of the believers in the hope that the Devil would stop walking among us.
Even as my mother lay dying in our home from ovarian cancer, the believers prayed that the Devil would be cast out from her body.
All this permeates my memory. Each experience becomes a layer, a new foundation from which my life was built, from which I learnt to survive.
When I was eleven she died. My siblings and I were told, in no uncertain terms, that her death was our fault, as we did not possess the strength of faith required to allow her to live. Three weeks after her death, I was told that I now needed to look after my younger siblings, that I was now their mother.
There was no choice.
Every day I rose. Every day I convinced myself that I could survive the day. I learned to read the signs of danger in my home, to see the tension in the air, to avoid making mistakes that could set off the wrath of my father. There were things I could not control – my medical needs were still there, and the consistent manner with which I failed in looking after my own hygiene was a cause for distress.
Other signs could not be read. The grief and mental anguish my father felt manifested in abhorrent ways. He could, on a whim, pull me out of my bed and demand that I clean the house. I learned again, as I had in hospital, certain times of night were not safe – as these were the times when people would come. As a child, there were many times that I was removed from my hospital bed in the middle of the night – the treatment traumatising and fearsome. So too, at night as a teen, I learned to interpret the sounds of anger, of aggressive movement through the house, of frustration that would lead to me being pulled from the safety of my bed, to shiver in the night while being screamed at and beaten – made to fix, to clean, to whimper.
My siblings and I knew where to hide, how to walk, what to say – yet we still suffered at his hands.
My head was split open, my sister suffered a black eye, and my brother was thrown from the balcony.
It was in these years that I, that we, first asked for help. We were deemed liars, and had a level of fear instilled in us that cannot be described. We were told that if we told too much we would be separated. We were silenced.
The second time I sought help, I was in my early twenties. I was at University and had failed most subjects in the semester. I didn’t know what was wrong with me, I just knew that I couldn’t get up, couldn’t do my work, couldn’t do anything, the thought itself was too much for me to overcome. The shame I felt trying to explain what had happened to me made it too difficult to continue to see the psychologist.
The third time I sought help was after the birth of my daughter. I recognised the now familiar urge to die, and asked for help. The GP was helpful, the psychologist relatively so, yet when it came time to ask for additional time, the GP had left the practice, and her replacement looked at me and told me I looked fine; I didn’t argue.
The fourth time, the final time I asked for help, I once again felt the world would be better off without me. The plethora of experiences had finally caught up with me, but this time I received the help I needed.
I can now recognise the mounting fear that often overwhelms me as a part of the PTSD. I use a series of grounding techniques to bring me to the present – to stop my brain from taking me back in time. I know how to drown out the sounds of the past with white noise, but sometimes struggle to stop the memories from replaying in my brain and becoming the predominant thing I see.
I understand the way I react to things can be caused by the PTSD, and have to talk myself through stressful situations at work, in life and in my home. Sometimes I do this well, sometimes I don’t. It is an evolving thing.
Mostly, it is hard work. It is exhausting to live my life birth in the past and in the present. It is exhausting talking myself through each experience in life, and it is difficult to listen to people mock the types of experiences I’ve had.
But I am alive, and for that I am grateful.
Words by Christi Bezemer