70 Stories

#24 Reality Check

‘I remember when sometimes I lived; when I inhabited life.’

Was it really thirty years ago that we made our own ‘Glad to be Mad’ T shirts? And did I really wear one? Self conscious and yet outrageously pleased with myself!

Was it twenty years ago that I was talking joyfully about ‘Mad Pride’ to a friend who said;

“Why would you be proud of madness? I am proud of friends with a mental illness, but proud of illness?”

I paused; because sometimes I do listen! I remembered those times of absolute agony; a hell of feeling and not feeling I had never felt before; wondered if she was right.

I remember; how long ago? Maybe fifteen years? Another friend described how she saw her experience of psychosis as a spiritual awakening; a blossoming into a new state of awareness. Those wonderful insights into her life; how she looked forward to the morning when she drew the curtains so that she could have that half hour conversation with her voices before going into work.

I thrilled at that but in the back of my mind I remembered; those weeks of unutterable struggle and paranoia that have besieged her for years. I still think of her warmth and her belief in something grander than the mundanity of illness with pleasure, but would I want a spiritual awakening like hers?

I don’t know. I spend most of my time trying not to believe those thoughts that besiege me; my certainty that I am a devil; that I am, moment by moment, sucking joy and energy from the lives of those I love. That I am part of the wild extremism of our world: the floods, the raging fires scorching our very earth; filling the sky with ash and the smell of dead animals. I am the evil that means we now have leaders who make up their unique version of the world and the law. Who assume that they can do whatever they want. Who dismantle the hard won connections we make between different communities. I am the force destroying the last tiny joys in the last days we may still live with pleasure in our hearts.

I don’t want to face that. I want at least some doubt; some hope that this is schizophrenia rather than the bitter reality that means I pray, one day, to have the courage to leave this; to sign off from this living stuff; to leave the horror and responsibility behind.

Look at our, almost triumphant, appropriation, of the Autistic Community’s statements that they are neuro atypical; just different and that society needs to adapt to that. I thrill to this and then clamp down when I hear my colleagues and friends saying those of us with psychosis or whatever it is, could learn a thing or two here. That this is just our difference, that the attempts to change us from who we are, are just plain old offensive. Why force our difference into some uncomfortable fit that means we might have to meet impossible standards and scrutiny from the rest of society?

I clamp down, just as I clamp down when I see adverts with smiley people being loving to each other, breathing the message that smiling and talking are all we need to do. Just as I do when I see my friends, with whom I have shared memories of what it was like in the old asylums, being squeezed into short programs after which they will be pronounced fit to use their new found skills for living in this bright, bright, world. Where, of course, it is possible to take responsibility; to break away from your pale dependence on your friends and workers and leave those decades of sadness by the side of the road. Knowing that next time you want to die, when the night is dark and your stomach filled with terrible, lonely, white anxiety, you now have the ability to overcome this by yourself. And if not, at least access to the advice that a nice warm bath or a brisk walk will break you out of the despair that consumes you.

As you can guess by now; I am also angry at the delight we feel when we say there are a multitudes of different realities and ways of seeing the world and just who is the person who can have the arrogance to say that their reality is superior and more real than ours?

I get it! Just as my drunken student friends from nearly four decades ago would try to get their head round the idea that just because you can see the three legs of a dining room table, that doesn’t mean it has a fourth leg or even that it is a dining room table.

It is amusing in a way but I am pretty certain that my dining room table is a dining room table.

And I am pretty certain that however much we try to bend it to something more positive; to see it in different ways. Approach it in different ways; that mental illness is something dark and dangerous and most definitely not something to be celebrated.

I can no longer count the number of people I have known who have killed themselves, and I certainly cannot count the number of people I know who want to die.

We say it glibly; ‘Want to die.’ It is almost commonplace. 

They might have been doing what I am doing right now; which is looking out at the most beautiful wash of orange across a blue, black morning, outlining the mountains I am passing on the train. Knowing that this evening I will be with a loving group of different families bound together by love; where the children will be running wild or snuggling in to their Mummies; upset by some chance remark. Where we will be drinking prosecco and contemplating the hot tub despite the storm that is forecast.

Who, like me, may be looking forward to walking Dash the dog, by the Clyde among the seaweed, the sea smell, the rich mud smell, the sound of the birds and the whistle of the Helensburgh train.

To leave this? This ordinary but wonderful life? I would, I think. I think one day I will and I so don’t want to. This is so lovely.

The people we love, the things we do, the sights we see, the food we taste, the stories we create are something we would leave because our distress and our illness can be so awful that we see no light, no sunrise, no snuggled children, or dogs to stroke; just the prospect of oblivion and freedom from memory and thought and pain and somehow we celebrate this?

Somehow this is just what we are and this should be respected?

I think back to my memories of my brother; shouting down the phone at me when I was looking forward to coming off my medication;

“Do you not know that, when you are in hospital, the whole family is waiting for that phone call that says, finally, you have died?”

And although this was the first time I had heard him shouting it was also the first time I had heard his voice cracking with the pain of it all; that pain they too have suffered over these years.

There is something brutal about illness or whatever this experience is. I go for my tribunal soon in which they will decide whether to continue treating me. It might be a life or death decision and I still have no idea what I want that decision to be.

The worst part of my life; which I cannot explain to the professionals around me because they say I am usually animated and articulate and engaged is that I am dead, or maybe not that. I am not here.

I remember times in my life when I was truly vibrant and how ideas and conversation were always bubbling to the surface. I remember times when everything was so present; you could almost touch the colours of the sunrise, you could feel the wide, energy filled, connection from your heart to people and the world.

I remember when sometimes I lived; when I inhabited life.

Now I don’t and it has been so many years; so many years. I am so weary of it. I still sit on a rock at Ardmore with Dash the dog at my feet and watch the oyster catchers fly low above the water. Or the heron, still by the shore or the curlews flying away calling their lonely call, or the crows hopping sideways on the seaweed and I am delighted but I am delighted as though I am hidden behind a screen. Everything is at one remove. I am half asleep; lost in a pale dream.

Wendy, my partner, still sometimes begs me to speak; says I am in my ultra-quiet zone again and I do try. I look for words but nothing is there; nothing at all. This not being, the not being alive thing; it makes me despair sometimes.

I think of all those journeys when I am convinced people are moving seat because they know what I am, or those social gatherings where, though I am enjoying myself, I mutter insults at myself because I know these friends and family members secretly despise me.

I remember the sizzle of cigarettes on my skin, my flesh made tough by repeated dousing in boiling water, I remember the slick pain after razor blades have passed across my wrist and wee Charlotte’s queries about how I got the scars and her Mum’s fear at how devasted she would be if she knew that, even now, I still consider my death would be a boon to the world.

Or those nights; the times with the red raw eyes because, night after night, you are up in the early hours and even the World Service won’t drown out your battering thoughts.

And we would paint this differently? Repurpose it? Remodel it? Say to each other;

“Stop making out this is some tragedy! Why not look at all the undoubted talents we have as a community, the joy we can bring to each other, the power of our hope and our desire to make the world a better place?”

We say;

“Stop looking at what is wrong, stop concentrating on our deficits, on our terrible, terrible despair. Remind people that we can work, we can laugh and contribute and be of value, not only be of value, we are of value.”

Yes true of course! But me? I am also going to remember that although that ‘Glad to be Mad’ T shirt was a wonderfully defiant act from when I was young and naïve and , in some ways, innocent; that many of the people I knew in those days are no longer alive. Living became too difficult for them.

I want to remember them, not as atypical somethings, nor as oppressed people or any of that but as people I cared for and who experienced illnesses the like you would never ever wish on anyone and who did indeed smile and find different meanings to what they went through but who suffered terribly, just as so many people I meet every day of my life continue to do so.

Naively I want that to stop. I want to sit on that rock by the Clyde with Wendy and Dash the dog and really hear the seabirds, feel the wind, smell the salt air. Just once I want to turn to Wendy and say;

“Do you really hear them? Do you feel this? I do!”

I want everyone I know to understand that void and absence and the joy connection would bring again. I want all these parcels of horror I have experienced and witnessed to be remembered and never glossed over with that ‘Glad to be Mad’ T shirt I was once so proud of.     

70 Stories is an online project curated by the Scottish Mental Health Arts Festival to mark the 70th anniversary of the Mental Health Foundation. The project connects stories from our Writing Competition, stories from SMHAF participants, and more in a compelling portrait of mental health in 2019.

Keep an eye on mhfestival.com/70stories for new entries in the series. If you are connected in some way to SMHAF or the Mental Health Foundation and would like to contribute a piece of writing to this project, please contact aeaton-lewis@mentalhealth.org.uk.