Five minutes: the OCD commuter

8.40am 

The stench of Ariel hovers around me like a suffocating mist. My soggy skin begins to shrink away from the freezing temperatures of February. Short sharp shocks of cold sting my spine as icy droplets of white water slide from the ends of my sopping hair, crawling beneath my collar, down my back. Soon, my skin will be so numb from cold that I won’t notice it. The benefits of a thick woolly coat can only really be understood when standing on a platform in mid February, dressed head to tow in recently washed clothes.

Clothes straight from the washing machine, onto my own skin. Sliding my feet into saturated tights was not easy to do: there was the pain of the cold – it hurt, to put cold onto my body, a body still hazed from deep sleep. Sleep reached after hours of scrubbing skin. There was the pain of the act itself, knowing that every time I did this, I was effectively breaking my own legs. Worst of all, the pain of the helplessness. Helplessness that can only be understood by someone standing alone in a train station, mid winter, soaking wet through. Literally dripping. Wet to touch, wet to smell. I am fucking drenched. I hope that no one will notice the droplets that are gathering at the hem of my pencil skirt. They cling to the cotton for as long as possible before diving dramatically, complete with sound affirming glug, onto the grey platform surface. I hope no one will notice the disgusting odour of chemical ridden detergent, disguised as springtime flowers.

I would give anything for a warm drink to hold, but I have only cash on me and I can’t face the ritual of cash. Sweaty fivers stained with who knows what. Grubby coins that may as well have been dipped in blood, shit and semen. No, fuck the tea, I am too exhausted for that shit, I’ll just stay cold. As the speaker overhead announces the impending arrival of my train, I start to plan. The Tory reading his paper, cut on his hand, fresh scab, a day or two old, stay away from him. The small octogenarian by the platform, keep back from her. She just dropped her ticket on the floor and there’s an old beige plaster twenty feet from where she is standing.

As the train comes sauntering around the far bend, chugging along like it’s hungover, I wonder what I will do if I cannot get two seats to myself. Stand. All the way to London? That’s two hours. Fuck it. Rather that than sit down and run the risk of brushing the arms of a stranger with my sodden jacket. Lots of things can be explained away with fairly minimal effort – staring at the floor for signs (“I’ve lost an earring”), retracing steps (“I thought I saw a fiver on the floor!”), but there is no excuse in the world that I could fabricate, no lie I could tell in the heat of spontaneity, that could account for my wearing soaking wet clothes in February, the coldest month of the year. I would be less cold if I were wearing shorts and flip flops, but of course then I really would stand out. I am shivering so much I begin to wonder if I will ever reclaim control of my own body.

I am so jealous of their warmth, their dryness, their fluffy, bouncy, bone dry hair. They probably blow-dried it this morning, scalps tingling with the waves of delicious hot air. I would do anything for a hairdryer, if just to warm up my legs, and I can’t feel my feet at all. My hair is wet, broken and falling out, another piece of collateral damage, done to myself by myself. My once unruly mane is now a thin wisp of brittle and frayed skipping rope. At least once a week I’m tempted to cut it all off, if just so I don’t have to wash it so much (long hair gets contaminated easily). I catch a glimpse of myself in the reflection of the window: my skin is grey. I am grey.

Two free seats, thank god.

I carefully inspect the seat in front to be sure it is safe, before hanging my saturated jacket (faded from so many visits to the washing machine) up, in a vain attempt to help it dry. Perhaps the sun will aid the drying process? Perhaps it will warm my skin. Nothing to do now but wait. By the time I get to London my clothes will have started to dry, surely. I’ll be a little warmed. My hair won’t look so utterly ridiculous. In the meantime, I must wait and be cold. So very – and completely – cold. Cold that hurts. I close my eyes and go into a space of imagine. What would it be like to be so warm right now?

My mother used to tell me that I should never go outside with wet hair, that I’d catch my death.

Eyes open, head snaps upright, an iron ball appears at the base of my throat that I can’t seem to swallow away. The Aga fires up anew in my ribcage. The lower half of my abdomen shifts ever so slightly, as though my intestines are moving into position, ready for the attack. I embrace the thought, hold it a while, it starts to blend with the contents of my stomach. Food processor. Spicy piping hot soup, gurgling at the base of my oesophagus. I can feel my eyelids widening and contracting with every surge of thought, my pupils must look like saucers. What have I done?

There is a small, sadistic part of me that has itself a good little chuckle. Oh, the irony. In trying so desperately to avoid catching AIDS, I’ve gone and given myself fucking pneumonia.

8. 45am.

 One hour and fifty five minutes to go.

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I have OCD, this is my blog.

Four and a half years ago, I was diagnosed with Obsessive Compulsive Disorder. It came as no surprise, I had been living with it since the age of nine. Sitting with a group of friends at a sleepover, my life changed forever. One of the girls noticed that she had cut her arm and it was bleeding. I went to help her clean it, before another one of the girls said, “no, don’t do that, that’s how you catch AIDS!”

AIDS?

I didn’t know much about AIDS but I knew it was a terrible disease and it would kill me if I caught it.

When my parents came to pick me up from my friend’s party, I sat in the back of the car silent, wondering how I was going to tell my parents that there was a chance I had caught AIDS. Guilt like I have never ever known, before or since. How could I tell them? What if they caught it too? I would be responsible for killing my own parents. I sat at the sink that weekend and scrubbed my hands, over and over. But no matter how hard I scrubbed them, they would not get clean, they just never felt clean. AIDS was now a part of my life, not in a real way, but in a way that was entirely in my own mind – I was terrified for my life, for my family’s life. I could not let this terrible disease get my family too. So I kept on scrubbing. In the coming months I would scrub my hands so much that it would hurt to hold a pencil at school, as the skin on my knuckles would crack and bleed. I had the hands of an old lady with a skin condition – at the age of nine. My childhood was gone.

That was twenty one years ago. I am no longer in contact with any of the children at that party, we drifted apart, as most children do. I wonder if the girl who made the comment can even remember that I exist. She probably doesn’t. But the innocently inaccurate and innocuous comment of a child was the trigger to the biggest fight of my life: OCD. Do I blame her? Of course not, she was a child, and she said something that she did not understand. But I cannot help but wonder how different my life would have been if I had not attended that sleepover. Perhaps I would have ended up with OCD anyway, perhaps I would have been an obsessive checker instead of an obsessive cleaner, obsessively checking instead of obsessively scrubbing myself. Really, what’s the difference? It’s no one’s fault.

So, after 17 years I found myself in a doctor’s surgery with my father’s partner. I listened, exhausted, as she explained what I had become: a shadow of myself who spent hours at a time in the bathroom, endless showering, endless hand scrubbing, endless runs of the washing machine, endless washing of clothes, endless list of strange behaviours that only the OCD-er or the people who know them, can recognise or understand. And that was the stuff she knew about. But with OCD, you are an iceberg – only ten per cent is above the surface, the remaining 90% is the terror beneath, the torture chamber of your own mind.

That was four years ago. In those four years I have been on continuous medication for OCD, and for the first three years I was on the maximum dose for the condition. I had twelve sessions of Cognitive Behavioural Therapy (CBT), which helped enormously (when I finally met a therapist who actually knew her stuff about OCD). I was gutted when the sessions came to an end, I was scared about what could happen and if I would go back to that person who thought that putting Dettol on her own skin was a perfectly reasonable thing to do (unsurprisingly, my skin burned as a result). But the therapist’s confidence in my progress meant that I could start to feel some kind of confidence about moving on alone. A year ago I asked my doctor if I could start to reduce the dosage of my OCD meds, which she agreed to do, providing that we would closely monitor my progress. A year later I found myself in the doctor’s surgery again; exhausted, hopeless and utterly depressed. I was permanently on the verge of tears and, once again, I felt like I was trapped in this endless and horrendous cycle of OCD.

I was signed off work and have been off work ever since. Being off work has helped enormously, if just because it has given me a chance to get used to being back on the maximum dose again. It’s given me a chance to sleep. It’s given me a chance to focus on myself and stop lying to myself that everything is ok, when it’s not. It’s given me the opportunity to start putting myself back together. It’s given me time to try and go back to the CBT steps that I learned two years ago and see if I can work out where I am going wrong, what I can do differently. It’s given me time to go back to the book that I believe really saved my life four years ago, Jeffrey Schwartz’s Brain Lock (I would encourage anyone with OCD to read this book). It has given me time. I have felt broken for so long, and it is giving me time to try and fix myself, one tiny step at a time. I am so grateful for this time.

I have a long way to go and I am nowhere near where I would like to be. A friend of mine suggested that I use this time to write. And that’s where this blog comes in. I hope it can shed some light on what it’s like to live with OCD, for myself and for anyone else who happens to read it. If it can help someone who lives with OCD feel a little less alone, then all the better. I have decided to just write, without re-reading and re-writing. So forgive me if the posts read as something disorganised and haphazard, but that’s my brain and that’s OCD. I am just going to write.