Speech in Barcelona 14 December 2010

speech in front of university students Universitat Autonoma Barcelona
Location: Casa de Convalescència de l’Hospital de la Santa Creu i Sant Pau, Barcelona
Date: 14/12/2010

HOW DOES A NORMAL DAY LOOK LIKE FOR YOU?

In times when I am working, I wake up between 6:30 and 7:00 AM to have a shower and prepare for work. After a metro ride, I start work at 9:00 AM and work ends at 18:00 PM. Then in the evening there is time for recreation, usually either internet, watching football in the pub, or listening to music.

Sometimes however rituals such as controlling if the lights are out, water is no longer running, and door is locked, … take much more time than usual. This can take up to half an hour of re-controlling, while normally it takes less than 5 minutes. In such days, I sometimes need to take a taxi to work in order to still arrive in time. I rarely oversleep, but have often lost time with rituals.

At work I sometimes lose a lot of time with handwashing and other rituals, or with visiting private sites when needing distraction from depressive thoughts. In such cases I often voluntarely work overtime to compensate the lost time. When this occurs I usually have insufficient time left for recreation at night, and those days are completely about my job.

Right now I am on sick leave as the rituals increased and the depression also became harder to control. During the sick leave my “job” is confrontation with my fears, this often means using my own computer or other emotionally valuable objects even when feeling claustrophobic at home. It works with ups and downs. Some days it all works out very well, some days it doesn’t work at all and I really need to leave the house, and some days I do work at home but with serious troubles.

WHAT EXACTLY IS YOUR PROBLEM ABOUT?

The problem can roughly be split in two: general anxieties, and specific contamination fears. It started when I was 16 years old. Prior to that I already had a lot of small rituals comparable to a sportsman who steps on the pitch with the right foot first because he believes it will bring him luck. I had many such rituals, but they were not controlling my life. After turning 16 the contamination OCD came in, and I took showers up to 5x a day, sometimes half an hour per shower. I touched every emotionally valuable object with gloves. It from that point on really controlled my day to day life.

The general fears usually are about losing emotionally valuable objects in other ways than contamination, or about trauma’s from the past that I did not process successfully yet. The emotionally valuable objects I try to shield from other people in order to protect them.
Social problems are frequent. I  can enjoy friendship and social contact when the context is very clear. For example if I go to a political debate, I know everyone is there for the reason of debating. When joining someone to the football stadium, the objective is just to see the game. That’s it. I can enjoy some social company when those boundaries are clear. However, when someone tries to see me frequently and I cannot understand their intentions, fears take over. I try to ignore those fears, but when this fails I have to seek isolation as solution. Social contacts are enjoyable when the context is very clear and when one respects my wishes, such as not meeting in my own house.

An example was in Ireland. A person who acted as if he wanted to be just friends joined me to football frequently. He often asked me to pay the entrance or the drink because he “forgot his money”. After a while he also forgot his money when meeting for dinner, or even needed money for a hotel because he didn’t want to sleep at home. It ended up with serious stalking and police got involved, and at the point he understood he would no longer receive a single euro from me, we never heard of this person again.

Such experiences stick in the mind, especially for an autistic person who has difficulties interpretating social situations. If a friend now would ask only occasionally to borrow even just 5 euro, I would get suspicious because I would start to doubt about the true intentions.

This causes problems to meet new people. I would still like to have a girlfriend, to meet people to work with artistically. However, I have to pull up barriers around myself to avoid new problematic situations. These barriers have a good and bad side. They protect but they also sometimes make meeting new people problematic.

I however do not isolate myself. I join a political movement, I have some good friends, I go out to poetry nights, … It is always a matter of finding the right balance. A certain barrier has to exist to give a safe feeling.

I usually am very open about my problems, both to colleagues and friends. People will notice you are different and react different to certain situations anyway, but they will not know what exactly is going on. Being open about both the Asperger Syndrome and the OCD makes it easier for both myself and the other persons involved, as it avoids misunderstandings. There is also no reason to lie about it. It’s a disorder nobody asks for, so why be ashamed?

YOU HAVE AN ARTISTIC PROJECT. WHAT IS ITS GOAL?

There are a lot of wrong stereotypes and taboos about psychological problems. With my poetry I try to replace some of those stereotypes by more realistic images of how it feels to live with a psychological problem. The arts project in other words is created with the target to be educative and taboo-breaking, using poetry as a weapon against the taboo and stereotypes.

My dream would be to see the next generation of sufferers live in a society that is understanding. To understand, one first needs to be educated about psychological problems. This is what the project is mainly about. Once people understand, the facilities for those in need can improve. For example: we (the autistics) are one of the only minorities without meeting places that are open daily. We would need something comparable to a gay bar. One autistic night a month is insufficient, our minority too (like other minorities) needs a place where we can walk in whenever we need to talk to someone who is understanding, a place that is open daily and not just opens doors on monthly basis.

SPEECH IS CONCLUDED WITH READING OF TWO POEMS:
– “SEI STOLZ” (a poem about being proud of who you are, no matter what situation)
– “CAMBRILS” (a more sombre poem about how social or romantic encounters always get distorted by the OCD, with “Beauty was never meant to stay” as most important phrase).

I deliberately chose one optimistic hope-giving poem and one more sombre poem, as this reflects the constant clash between hope and despair that people with mental problems experience. Cambrils, a coastal town in Spain, is a metaphor for loss of innocence: it was in Cambrils I spent my last holiday as a relatively worryless person before OCD took control of my life, hence the town has become a metaphor for that loss of innocence.

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