How many of us can say we truly have had a near-death experience? How many can say we’ve had more than one? Two? Three? Four? Personally, I have lost count. It’s become my new normal.
How many of us can say we truly have had a near-death experience? How many can say we’ve had more than one? Two? Three? Four? Personally, I have lost count. Yes, I know it’s not the bingo! I should probably cut down on the numbers collected, if it were at all possible, because unlike the bingo and renouncing with joy when the final number is called and you win, my final number will be anything but lucky. That will be when I fall into an eternal sleep. Yet, this is my new normal.
New normal. We’ve heard that a lot with the Covid-19 Pandemic I know, but my new normal is not in reference to that. My normal is being sat in the back of an ambulance once a month waving my parents goodbye, not knowing when I’ll return. Listening to doctors saying x, y and z is abnormal on your tests, if we don’t fix it now, it could kill you.
It’s not the best kind of normal I’ll admit. Not something to brag about for sure! What I am proud of however, is the power of the zebra that drives a burning force of power, courage, and survival inside of me, I always seem to avoid the inevitable. Often, just like the zebra avoids the lion in the wild.
I haven’t just picked out the Zebra because it’s my favourite animal or anything. It is because I am a Zebra, in medical terminology anyway. I have a complex medical condition called Ehlers Danlos Syndrome. A genetic disorder which well, affects everything, head to toe. The terminology stems back to medical school when doctors are taught; ‘when you hear the sound of hooves, think horses, not zebras.’ I’ll tell you something, it’s a dangerous and out-dated saying. Essentially it means look for the normal and forget the obscurity, even when you see that obscurity lying on a hospital bed right in front of you. It means people like me, wait twenty to thirty years before diagnosis. It means people like me become seriously unwell when it could be prevented, their quality of life is affected, their life is cut short, but also, their mental health deteriorates.
Many assume having such disability which affects everything from my brain, my heart, my joints, my teeth, digestive system, joints, and so much more, would control every aspect of my life. That as a twenty-six-year-old, I’ve lost friendships and relationships over the burden of disability, that family relationships are strained because they don’t understand, as I look ‘normal’. In which I’ve become a walking pharmacy with the scores of medications I must take to function, That I’m sat in a hospital ward for what feels like the hundredth time in a year eating yet another jacket potato and beans. None of this breaks me. My disability is my driving force. My anxiety, however, is another story entirely. One of which for the first time, I’m about to speak openly about.
The anxiety. The fear. The nightmares. The voices. This is what cripples me.
I have what is known as complex post-traumatic stress disorder. C-PTSD is very similar to PTSD, other than instead of one major trauma, it is exposure to trauma over a long period of time. My C-PTSD is relatively controlled, yet its friend, which never seems to go away, is not. So let me introduce you to Death Anxiety.
Death Anxiety is what is says on the tin. To be scared or anxious of dying, or of loved ones dying. It is debilitating. I’m not sure when it started for me, but I’ve come to the realisation that it was a combination of things, my cousin being taken far too soon in a car accident, losing many friends far before their time, and the first time I had to fight for my own life.
The first time is a bit of a blur. I remember getting up in the morning, going to the top of the stairs, and waking up at the bottom. I’d passed out and fallen 12-feet. I don’t remember much, but mentally, I’ve never been the same since. I am terrified of dying, which makes depressive episodes and suicidal tendencies a little more complex when they come to say hello.
My mind is a war zone, every day is a constant fight, every night is a bloody battle. My mind is constantly on the edge, loud, with a persistent argument between two voices, the rational, and the irrational. The latter we all have, we are built to have a conversation between what is right and wrong, rational, and irrational, in our minds eye, for me, unfortunately the irrational takes control more often than not.
So let me introduce you to my irrational voice, and for the sake of this piece of writing, let’s refer to this voice as the darkness, and the rational, can be the light.
The darkness is always there, and within darkness is always the turbulence of the storm. Wherever I go, darkness follows. It engulfs my mind until rationality becomes blind, with no light to see. It sounds a bit dramatic I know, but in truth, the darkness lives in the little things, and all these little things build up and up and up until I explode.
It blinds me of the light when I am waiting to cross the road, waiting for a train, when at height, when about to fall asleep, when in the car, in the city, the list goes on. In all these little moments of life, the darkness tells me how I am going to die. A car will hit me, I’ll fall on the tracks, I won’t wake up in the morning, I will fall, the car will crash, a major incident will happen. You get the gist. It is not just a voice. The voice terrorises me, but visually within my mind’s eye, darkness also shows me there, dying.
Wherever there is danger, my body is entrapped in fight or flight mode. My body freezes, and every time, darkness doesn’t let me choose to fight or flight, instead, I become a stone-cold statue, surrounded by the chaos, trapped, frozen in adrenaline until rationality can find just a tiny speck of light to fight its way through and bring the calm. It is soul destroying, yet I never speak of it.
At night, darkness has even more control. With no light, no moon, no starts that shine. No north star to find my way home. Night-time is my living hell. Before falling asleep I must try and occupy my thoughts with a book, or something to watch, to try and prevent the waves of terror flooding in. I never fall asleep naturally, and instead, rely on medication to help me fall asleep. This is known as insomnia. I can never occupy my mind for long before darkness comes out to play. When I try to fall asleep without medication I end up in a state of anxiety as my mind replays every bad experience, big and small, that has. Ever happened. That is not something I wish to go through.
My sleep medication is supposed to help me fall asleep and prevent the nightmares. It does, thankfully help me to sleep, and maybe it makes the nightmares slightly less present, they are always there.
How I wish to dream, even if it were to dream of sheep. There are no dreams, just hell Usually these are my memories, shown in a way I do not wish to remember them. I’m asleep. I’m tied to a chair. Straps cutting into my wrists and ankles, unable to escape. My eyes taped wide open. There’s always a TV, and old films chucked all over the floor. One by one, these tapes are played. Films, the stories of your life, everything that has ever happened. The tapes that are of the good times are broken, it’s always the things you wish not to remember. The sound is at full volume, but its faulty, instead of one voice, there are hundreds, as the video plays all around you. I am trapped, until I can finally break free and wake up.
Other times, these nightmares play out with me watching myself die every single time. Always in awful ways, always horrific.
Sleep paralysis is a friend of darkness which visits most nights. Even here, paralysis shows. its face as death. I’ve never woken up feeling refreshed. I wake up feeling more tired than the night before.
This all sounds so morbid I know. It has begun to become more under control than it may seem, because the light is always here to guide me through. Some days the light beams with strength, and other times the light is just a candle. Over the years I’ve realised if I do nothing, the dark is more present. The light is a little like wind power I guess the busier I am, the brighter the light gets. My energy powers the light.
I’ve never been that good at counselling. The ‘how does it make you feel’ question always makes me implode on the inside. Instead, I found my own way, my own therapy, I found creativity. I am a designer, an innovator, an activist, and all my work are based off personal experience. My work in the past has covered a variety of themes, mental health, grief, sexuality, domestic abuse, addiction, and disability. All parts of my life. I tell my story through my work, and I process it at the same time.
Essentially, my creativity is taking everything I have ever been through, and carefully unpacking it all, before packing it all up again to be moved out of my mind. PTSD unpacks these boxes by chucking random aspects of the contents all over the place, and death anxiety likes to shake the boxes at any given time until the contents break. So, you could say. Packing up and organising my life’s memories is taking more time than it should. I am slowly getting there. I continue to pursue peace.
Admittedly, I’m not sure my mind will ever completely be at peace, but it is not as loud as it once was. I look forward to the day when the light shines as bright as the sun, and the darkness is just a soft breeze in the air, one day, I’m sure it will be.
As I finish this piece of writing, I come back to the start, life expectancy is a funny thing. Life starts and ends every second of the day. Sometimes life ends before its natural time. I’m starting to learn that as much as that is painful, it. Is okay. People who know me always laugh when I say the words ‘it’ll be fine’ or ‘I’m alive’ as I say them so often, but they are two simple sentiments that I live by.
I am alive, it all will be fine, and I am sure I will be writing another one of these when I am a hundred and three!
"Abi Chapman is a queer disabled multi-disciplinary designer, innovator and researcher currently taking on the fight against accessibility barriers in our world to create a more inclusive world for us all.
Running a social enterprise known as the accessibility project, Chapman strives for a world where disabled are known as able and our vulnerable do not have to live within the disaffordances of society, but we can all have equitable opportunities to strive for success and happiness, whatever our background, and whoever we may be."
See more of Abi's work on instagram.
Find out more about The Accessibility Project on their website.