The Ecphorizer

Living with Crouzon's Syndrome
Arne Gustafsson

Issue 07 (July 2006)

relates his personal experiences of misunderstanding and the agony of living with a facial deformity

I am ”endowed” by nature with a special feature. I have a craniofacial deformity called Crouzon's syndrome. I could have had the plague instead, which you die from. Much more humane. My life is a vast ”social desert.” In Sweden where I live, if you stick out too much — regardless

But all of a sudden, the ?enchantment? is gone, she screams at me...

how intelligent you are — you may be regarded as stupid, locked up someplace. People treat you as if they wished that was possible for them to do. I am constantly derived of good (intellectual) properties and given bad ones instead, something that does influence my intellect!

Ordinary life with a ”strange face” is sometimes very hazardous. If I so much as step into a shop or restaurant, unpleasant things do happen just too often. In lunch rush hour at a restaurant in Stockholm, I study the menu, trying to decide what dish to order. All of a sudden, very near my table, I hear a young person clear his voice. When I look up I see the face of a young server, with an irritated angry look on his face. He asks me, "And what do you think you are doing here!?"

I lost all my appetite, went to a nearby McDonald's instead. Wept a little. Again.

@ the phone-shop
The staff looks like they are being ”hit” with a serious disease when I step over their doorstep. They simultaneously lose the ability to speak, they look very troubled, disturbed in my presence. They swallow hard, collect themselves before they answer my questions. Late one day, late afternoon, I passed by the shop. It was lit up; it was like seeing a move on the silver screen. In the ”movie” staffers were very friendly to the customers. Everyone had a good time. I saw into another world, to which I did not belong.

The keyboard I did not buy
Early one morning I biked from Ryd, a distant suburb, to a big close-out sale in a music store in the city. There was a guard at the entrance who told every customer to let him take care of their rucksacks, bags. He had a soft tone in his voice and nice smile. When I came in he screams at me. Everyone freezes, the customers are looking at each other, what happened? They look at me; ”what did he do?” Without paying any attention to the customers, he points with a thick ”bodybuilder arm” to a spot near the wall where I can put my bag. But I was in a state of shock and I was just wandering around in the shop, not knowing what to do.

Buying a DSLR, the expensive camera
When all the papers were cleared and signed and I was ready to leave, one of the employees steps in, completely unnecessarily, and asks, "Well, are you sure that you can master this camera? Do you really know how it works!?"

My joy over the camera was gone even before I had come home. I returned the camera a few days later.

In the convenient store
After a ”shopping spree” in the city I walk home with some bags in my hands one late afternoon. I needed to buy some food. The manager of the store sees me and screams to me in front of all the other customers (all of whom had bags in their hands). "You just have to understand that you cannot carry all these [three!] bags in here. You have to put them at the gate!

He screams at me from the top of his lungs in front of all the other customers, none of whom had to do this. Humiliated and sad I put down my three bags on the spot he had directed.

At the adventurous McDonald's
After a trip to Stockholm for my therapy, I was very hungry but my credit card did not function at the money machine. Forty SEK and some coins was the only money I had. It would be sufficient for a hamburger though. I hurried away for a long walk to McDonald's. A long line was winding in the restaurant. I approached one of the staffers, asking, "Can't you please open another register, there are so many customers here?"

"Well, you know, it's my bosses who want it this way."

She speaks with a wonderful soft voice, almost as we had been friends for a long time. But all of a sudden, the ”enchantment” is gone, she screams at me, "If it does not suit you, why don´t you f*** to the nearest hot dog stand!

Nobody utters a word. The other customers, who had been discussing what burger to eat, went dead quiet; nobody says a word.

Like the guilty one I was not, I strolled away to a nearby pizzeria, I ordered a pizza. I paid with my coins and the two small bills I had, but accidentally I dropped one big coin on the counter, which I did not need in order to pay for the pizza. The pizza-baker grabbed it and put in his own pocket. Maybe I gave him the impression, that after the therapy session, after the ordeal at McDonald's that I was mentally retarded

What was all of this good for anyway...?

Me, the innovator
Sometimes I get ”my spells” — I think of myself as the great ”innovator” of sorts! Coming up with ideas for innovations. But during talks with some patent advisors I have had, they have a look on their faces as if they wanted to say: ”hey look, I really do not have any time for you..., I´ve got more important things to do...” During a talk they are supposed to have with an innovator like me...
I have had many a good conversation with a friend of mine (we have known each other for the past 40 years) and he is a member of the Swedish Parliament. Once, I shed some light about one of my innovations to him. He said, "Arne, you belong to the intellectual elite in this country, but you do not appear as an intelligent person due to your anomalies...”.

My situation can hardly be expressed any better.

Four decades — Let bygones be bygones!
I have also spent four decades as a patient within the plastic surgery comunity here. Today, doctors can do wonderful operations for people like with congenial malformations of the skull. Surgery that turns peoples' lives around. In my case, doctors are reluctant to do their best to allow treatment to take place.  As of now, I am preparing — If I have to — for a fight to get a distraction treatment of my jaws. A treatment that is even more than possible in every other case, except for me. And all this because one doctor made a terrible mistake 20 years ago... (for which I have forgiven him. Let bygones be bygones!).

Having been a sudent at the university, and having learned how to play the guitar and train at a gym, Arne Gustafsson loves to be an ”expert amateur” cook and receive the praise from his friends who happen to ”survive” his cuisine...

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