One of the worst things about any kind of mental illness is that it doesn’t just bring you down, it can also bring down the people that you love. Every behaviour, every ritual, every oddity hovers suspended in mid-air; a musty, misty, rusty smell. Like a diseased rising damp, it creeps into the cracks, saturates the walls, leaving its grim and grey shadow everywhere. You don’t have to acknowledge it to know that it’s there. It’s in the air. With contamination OCD your home can become your own little playground of terror, your personal private hub of crazy. Zones are designated as ‘clean’ and ‘contaminated’; safe spaces gradually become smaller until, if you are lucky, you have just one small patch of ‘clean’ space within which you can live. Mine was my bed. But even that had areas of contamination on it, so that I would have to sleep in a certain position to avoid catching AIDS. That’s right. AIDS.
For years, I had convinced myself that I was doing all of this beneath some kind of cloak of invisibility, where my parents couldn’t see. I was embarrassed and I was ashamed. I was not stupid, but I felt like a fool who had been tricked, and the last thing I wanted was for my parents to realise that I had been duped in this way. Looking back, I know they must have noticed a lot more than I realised. I cannot begin to imagine how hard it was for them, especially for my Dad who, by the time I was diagnosed four and half years ago, was effectively my father and my mother in one. As the OCD worsened during my mid-twenties, I devised increasingly elaborate ways to disguise my rituals and compulsions. It’s fair to say that, as much as the compulsions are exhausting, trying to hide them can be just as tiring. But, for however much it was destroying me, I think it is safe to say that it was doing the same thing to my Dad, albeit beneath the surface.
When I was growing up in the late 80s/90s, OCD was not an illness that was understood by many beyond the elite circles of psychiatry. I’d wager that for most people, OCD was an incredibly rare and disturbing condition, known for driving people to madness (cue extreme examples involving social pariahs and romantic notions of genius recluses – anyone for Howard Hughes?). So, as much as I was in the dark, so was everyone else, including my parents, and because I was too ashamed to talk to them, they could never know why I felt the need to obsessively wash my hands. I often wonder what would have happened if I had just said to them, “well, I am washing my hands because I think I have AIDS on them.” Of course, my parents would have said that I did not have AIDS on my hands – or anywhere else on my body – and that there was no risk whatsoever of my catching AIDS. But I was unable to tell them what I did not understand; my own thought process was so locked and automatic that I did not now how to even begin to explain. I did it because I just did. So much of what happens is happening inside your own skull, it just can’t be seen by anyone else; the embarrassing ritual (whatever that may be – hand washing, turning the light switch on and off a set number of times, the re-tracing of your own steps) is just the final scene of the final act of this sick play.
I remember very vividly when my Dad came into my bedroom to talk to me. I was 26 years old. My room, to someone who was not me, was an absolute tip. There were piles of clothes everywhere, clothes in plastic bags, clothes drying on the clothes horse in the centre of my room; there was just stuff piled up everywhere. My bed had no sheet (because there was not one clean enough) and my makeshift quilt was a limp damp blanket. I was dressed in nothing but a t shirt even though it was the middle of winter; it was the only clothing I had that was contamination free. Walking into this room you would be forgiven for thinking that you were entering the space of someone who was lazy and careless – the chaos, the holy clothes horse perched like a sacred sun in the middle of the room lovingly decorated with sopping wet clothes, the bags of shit just piled up all over the place. For me, this was all exactly as I needed it. The piles of clothes were, in fact, in very specific categories depending on pre-determined levels of contamination. The piles of stuff everywhere were carefully arranged so that I would not risk brushing past them as I tread the careful ‘clean path’ between my bed, the clothes horse and my door. It was a very specific path that I knew to be contamination free. Anything beyond it was death.
I had spent the evening doing numerous loads of washing and my Dad had come into my room to tell me that I could not use the washing machine any more that day. I told him that I did not have any clean clothes and, if I could not use the washing machine, I would not be able to go to work tomorrow – the clothes that I had left in my wardrobe were contaminated, I could not wear them. I could see in his face that his mind was made up and I was not going to be washing any more clothes that night. He asked me about the piles of clothes all over my room, I explained that they were all in specific piles and could not be washed together. He asked me why. I was too embarrassed and too ashamed to explain the categorisation system.
I started crying. I told him that I was sorry, that couldn’t help it, that I wasn’t doing it on purpose. I told him that I wanted to die, and that I was sorry for thinking like that, but that it was true, because I couldn’t stand it anymore. He looked at me and said that he knew I couldn’t help it, that he knew that I wasn’t doing it on purpose, but if I was not able to stop what I was doing I would have to go to hospital because he did not know what to do. It was in that moment I realised that, however scared I was, my Dad was just as scared, if not more so. I could see in his face that, however hard it was for me to sit there, feeling like the most worthless and pathetic little animal, it was just as hard for my Dad to see his child like this. And that’s the cruelty of mental illness, it doesn’t just get you, it gets the people you love most. And it got my Dad. And that made me feel so ashamed, so guilty, so sad, to know that there were two of us that were being eaten by this.
If I live to see one hundred, I will never forget that conversation with my Dad because I think it saved my life. He was the one person I had wanted to tell, but the one person I wanted to hide it from because I didn’t want him to think any less of me. Most of all, I didn’t want him to worry and I didn’t want him to blame himself, to think that he or my mother had done something wrong. My parents had done absolutely nothing wrong and no one was to blame, we were all in the dark – myself included. Now, after years of not saying anything, of trying to hide so much of myself, finally I was outed – my OCD had well and truly peaked, and I was scared out of my fucking mind. There I was, 26 years old and unable to get dressed.
I am grateful for everything that my Dad has done for me in my life, for everything he has done for my sisters, for everything he did for my mother, but I wonder if I will ever be as grateful to him as I was in that moment, when he said he knew I wasn’t doing it on purpose. I had convinced myself that no one would understand, and that everyone would think I was doing it deliberately, that it was an act, some sick warped bid for attention. Nothing could have been further from the truth – the energy you spend, the efforts you go to in an attempt to hide this shit is unreal. So, to know that my Dad understood that this was something I couldn’t help was everything. In that moment I felt less ashamed, less afraid and less alone, and I am so grateful to him for that.
I begged my Dad to let me have one more shower that night. He said I could, but that I was to be in there for no longer than 20 minutes. Usually, when I had a shower, I would be in there for so long that I would genuinely lose track of time. I would sit in the bath with the shower head running for hours. I would sit daydreaming about how life would be one day when I wouldn’t have this, one day when I would be normal. All the while I would be willing time to just slow down, so that I would not have to get out of the shower and face the hell of getting dressed, of getting on with every day life. Getting out of the shower in itself was a ridiculously convoluted spectacle – I would have to step out of the bath without a single drop of water dripping from one part of my body to another. For example, if I stood up too quickly and the water dripped from my one of my arms to my legs, I would have to re-shower. You see, water that has just washed me is contaminated, which means that, should a single droplet of that contaminated water touch another part of my body, that part of me is now also contaminated and unclean (still with me…?). Often I would just stand in the bath and wait for all of the water to drop off me and/or evaporate, so that I could just step out of the bath completely dry, thus avoiding the circus. This time, instead of sitting in the bath for hours, my Dad called me after twenty minutes and said it was time to get out. As hard as it was to get out, it was a relief to know that, for once, the decision was out of my hands. I would not be in the shower for hours that night.
The next day, having no clothes to wear to work, I lay in bed all day and listened to the radio. I didn’t dare eat anything because I was scared that I would contaminate the food in some way. So I lay in bed, listening to the chitter-chatter of talk radio, welcoming the distraction of their thought processes, for it muted my own for a while. I spent much of the day crying. I was cold, still having only the aforementioned limp blanket to cover myself, but at least I was dry; I didn’t want to leave my bed for fear of somehow contaminating myself, which would mean yet another shower. I just wanted one day without a fucking shower. In the evening, my Dad’s wife peered around my door and said she had heard what I had said to my Dad the night before. She said she would help me. She asked me if I wanted a hot chocolate, I said no. She made me one anyway. I talked to her that evening and she told me that she had suspected OCD for some time and that she had been doing some research online – she had even printed out some information sheets. She encouraged me to come down and eat dinner with her and my Dad.
That evening, as I headed to the front door to make my almost-daily trip to Asda to buy underwear and socks (most days I would throw away the underwear I had worn, I had convinced myself that it would never be clean enough), she stopped me. She asked me where I was going. I said I was going to Asda ‘for some bits’ and she said that I was not to go if I was just going to buy underwear and socks (apparently, months of disposing underwear and socks in a bin leads to suspicion, who knew?). It’s funny, you think all of your weird behaviours and rituals go by unnoticed. They don’t. I didn’t go to Asda. That night, she brought me some sheets and a quilt and helped me make my bed. I went to sleep that night warm for the first time in weeks. It was like heaven to be that warm. Later that week, she and I would go to the doctor, who would diagnose me with OCD. She spoke for me – I was too tired – and she fought for me in a way that I could not have at that time. I will never be able to thank her enough for what she did for me.
A few days later, my sister came round to visit me with her husband and children. I was still in bed but she came up to sit with me and talk with me. Growing up, I had shared a room with my sister and, as such, she was privy to all of my weird and whacky behaviours and habits. I was surprised to learn that she still remembered my habit of switching the light switch on and off a certain number of times, for fear that, if I didn’t, my parents would die (I had, in fact, completely forgotten about that period myself). At the time, she had accepted it all in the way that children do – as just something I did. This meant that now, some 17 years later, she could accept what was happening to me but without being afraid of it, which somehow made me feel less afraid too. Her matter-of-fact-ness was comforting. She has the blunt no nonsense streak of my mother, which means she can get away with the straight talking that I sometimes need to hear, she panders to no one and no mental illness. Make no mistake she will tell it to fuck off as quickly as she’ll tell the next poor bastard who’s pissed her off that day. I admire her so much for that. It helps to know that, if my sister has that streak, somewhere I must have it too, and perhaps every now and again I can tell OCD to go and fuck itself.