Hello Caroline - I found this site a few months ago and
keep returning to read the experiences of many people I have empathy for. We are a pretty unique group here.
Let me introduce myself:
My name is Simon and I am from Yorkshire in the UK. I suffered from extreme facial blushing during my teens which gave me considerable anxiety. It caused me to
drop out of university (this sounds crazy) and to look for a job where there was less interaction with people.
When I was 27 I found out about the ETS operation and saved up for a year to go to Gothenburg. The surgeon's name was Dr Drott and the operation was
performed in 2000 at the Carlanderska Medical Centre. I remember two other
patients having the operation done at the same time, a guy from South Africa (for FB) and a nice old guy from Norway (for HH).
After the operation I still blushed - but things defiantly felt different. I gradually developed a general feeling of apathy; some people have described me as
being very cool or laid back. One person I know who I feel is very intuitive said she finds me very hard to read. This is frustrating as I have always been
very honest and open. From some of the descriptions on the site I have recognised this common feeling of being very
spaced out, with short attention spans.
I thought this feeling was just me, so when I read that other people had the same side effects it was affirming. I just don't respond to anything with fear
or excitement like I used to.
Before the operation I was very fit, I worked for a builder which was physically very demanding. I also used to run 4 miles twice a week, which now I find hard
to believe.
I never really questioned why given any chance, I would jump into bed and sleep for as long as possible. I can go to work and after about 4 hours the sand man
comes knocking. I have taken snoozes at work in the office during lunch time, and at the end of the day going home on the train I can doze off.
The first thing I do when I get home is eat, then I go to
bed for an hour. This isn't good for a 30 year old.
Before the operation I can't say I ever suffered from
depression, even though the blushing caused me to drop out of university.
After the operation it is a different story. I think after
about six months post op I was starting to feel emotionally different.
The cs is enough to keep me away from physical
relationships, a huge amount of confidence lost. I really don't like shaking hands with people, with these freakish dry hands. Hair loss and dandruff is
annoying. I have noticed a premature aging of hands and face, I can compare myself to my brother who is the same age as me.
I feel like I have gradually moved out of the fast lane (physically and emotionally) and moved onto the country road.
My sister constantly shouts at me for yawning on the phone during conversation and has often commented on my loss of vigour. My response is usually apathetic.
One strange thing that has also changed is my taste in music. I can't tolerate fast loud stuff anymore. I just listen to very quite ambient music now. In
fact any loud noises really affect me.
I have always drawn and painted. I started to draw what I call 'Free association sketches' in 2006. These are very quick sketches where I just draw,
respond to my emotions. I noticed that they felt like a variation on one theme and grouped them together under the title 'Trap and Support'.
Initially I didn't connect these emotive drawings to the ETS. But now feel that they are a visual
reflection of my state of mind. Even the title I subconsciously gave these images 'Trap and
Support' now sets alarm bells ringing.
I know from the comments on the site people have been affected in different extremes. Personally the ETS has developed into a trap for me. I'm not sure
what significance of 'Support' is, perhaps a form of suspension.
I think one of the reasons people feel so bitter is because this affliction has been 'self prescribed', and could have been avoided. It is very painful
to look back at your former self and remember a person you can't be anymore.
Reading about the Stem Cell development really excited me, thinking about the possibility of being given your former life back.
It is the first time in years that I actually responded to something with a high level of emotion.
At the same time I am sceptical.
Thanks for creating the forum. It's importance
can't be overstated, especially if stops one more person falling into this unimaginable trap.
Simon Francis
