Monthly Archives: February 2014

Bit of a blow

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Changing Faces have been in touch with Penelope my DBT therapist. They are withdrawing the offer of sessions for me. They think I was too distressed on Monday. They asked Penelope to tell me that was the end.

I am devastated.

Currently, I’m in emotion mind and I hope with time this will soften. But today I can’t stop the tears flowing as I feel:

Once again I have been rejected because of my face

I told Maria things on Monday that I have never told anyone- and to have been so vulnerable to someone who I believed was qualified to work with me, is excruciating. I am so ashamed at myself that I allowed myself to be so naive and vulnerable.

I am mortified that the practitioner spoke to her manager about it and the manager has decided to withdraw the service

I am inconsolable that someone couldn’t manage my distress and that once again I was rejected for being ‘too difficult’

I took 20 years to have the courage to make contact with the organisation- and if their service wasn’t able to ‘cope’ with me, they should have said so at Assessment not after i had started a therapeutic process.

It makes me feel hopeless that the country’s specialist’s in facial disfigurement feel they cannot ‘manage’ me.

I feel in pieces. I just hope more good than harm can come out of this event as it doesn’t feel like it now.

Maybe tomorrow I will be more in wise mind about it all. Maybe tomorrow it won’t hurt as much. Maybe tomorrow I will be able to see it is more about them and the limitations of their service than me. Maybe tomorrow I will be able to pick myself up off the floor again and keep going. Maybe tomorrow it won’t be so raw. I hope so.

Thanks for listening.

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When the random happens

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I have been a teacher for 22 years. In that time I have possibly interacted with hundreds, if not thousands of families. In all these years I have NEVER had a child ask me about my face… Until this morning!

How random is that!!!!

I’ve worked nearly all of my career in inner London. I’ve always credited this for being the reason for why the children have never taken a huge amount of notice about what I look like. The schools where I’ve worked are full of every size, shape, colour, culture and disability under the sun- so I’ve never really stood out.

I can only remember two occasions where I think children have been whispering about my face. But I’ve never heard any names or anything like that. Until this morning!!!

My primary school is in East London, so my theory about the accepting diverse culture of inner cities was just blown out of the window!

A new child (aged 5 ish) saw me in the corridor, asked me my name, I asked her hers. She then asked why I looked like I did… I asked what she meant… She said my face looked funny. I didn’t feel it was appropriate to talk about feelings etc… And to be honest it was no big deal. I wasn’t upset . I wasn’t even hurt- she was a young girl exploring her new environment.

However, the timing and irony of the situation was not lost on me. My first comment in 22 years the same time I start at Changing Faces… Random! I have to admit I hope I don’t have too many more randoms!

Thanks for listening.

And so it starts…

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Today was my first session with the facial equality charity, Changing Faces. I had my assessment in December and such a lot has happened to me since that time. In some ways as I travelled into London I was trying to remind myself why this seemed like a good idea! I’m always amazed at how easy it is to bury pain at times… I can switch my emotions off quite quickly when necessary and as I journeyed there, I knew I was very detached from myself.

I got the tube and for the first time I didn’t really think about it as such a big deal. I’ve only been on the tube 6 times, so for me to take it more within my stride, is really encouraging. Every time I do it, I feel slightly more empowered.

It was my first time of meeting my practitioner. For the purposes of this blog, her name is Maria. She is a counselling psychologist just finishing her PhD. She looked younger than me. She has a facial difference herself.

This is my third time in the head office and I could tolerate looking at all the pictures a bit easier. The reception area is full of these advertising campaigns. Normally I just look away and feel slightly queasy- today I could hold it together a bit more.

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Fortuitously, I did not find Maria’s facial difference difficult to look at. So that was good. I felt she got the gist of me very quickly and she released me from all pressure to make improvements or get better. She kept encouraging me to take this process very slowly. I am grateful for that freedom.

The greatest gift Maria gave me today was to just ‘let me be’. I weeped, I was silent, I was wracked with shame… And she just let me be. She didn’t try and make it better, she didn’t pretend it wasn’t as awful as it is, she didn’t offer platitudes… She let me be.

I have blogged before about the pain of emptiness and loneliness I constantly battle with. Nothing to do with the number of people I know, but that awful isolation that comes from feeling misunderstood. That terror that comes upon you when you feel like no-one in the universe can understand just how awful this moment is. I know many of us feel this about other things in life we have experienced. Today I was able to get a momentary glimpse into this consequence of having facial difference.

Two things were significant for me. Firstly I have very clear memories of trauma related to my face. I can picture and articulate exact conversations, incidents and time lines. For other area of my life which have been equally tricky I can be very fuzzy about chronology and accuracy of events. Today I re- lived experiences with the clarity of a first hand account.

Secondly, I responded differently to myself. It doesn’t happen very often, but sometimes if I am very distressed I start pinching and scratching my face. Sometimes it is because I am so repulsed by my face, I want to scratch the skin off, sometimes it is because I want to bleed and let some of the pain out. I HATE my cheeks. They are fat and round (mainly induced by years of taking steroids- I can’t bear the mole like features… So sometimes I try and literally squeeze all the fat out. In the session I began attacking my face. I had to get it off me.

Maria led me in a safe space visualisation. I find visualisations very difficult as I can’t picture myself… But I went with it. As she led me through my safe space I realised I had begun to stroke my cheeks gently. They were very sore from where I had been hacking at them… But I began to caress and stroke them. I have never done that to myself ever. I stayed with it and tried to soothe my raw skin. It was a moment for me that I was able to let be.

I don’t know where these sessions will take me. I can’t imagine feeling different about my face. But 2 years ago I couldn’t imagine all the things I have been able to do since starting DBT. My goals are deceptively simple. I would love to not feel physically sick whenever I catch a glimpse of myself in the mirror or in a photo. I would like to be able to hold eye contact with new people- especially men, without looking away. I would like to feel different about the way I look. I can’t be more specific than that at this point, as I’m still at the stage of, is this as good as it gets? I hope not.

Who knows, maybe I might cope with my face on a poster at some point?

Thanks for listening.

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That time of year again…

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It’s been a busy few weeks. With good things. But busy nevertheless. But I have been gifted the chance to breathe, take stock and refresh. Last new year I went skiing with friends- I do not ski, but I do enjoy apr├Ęs ski all day! I joined them on Sunday. Yesterday I slept pretty much most of the day… Wonderful.

I decided before I came out to France that I would release myself from all expectations this holidaySometimes I try so hard to rest that I never manage it! Sometimes I come on holiday thinking I will ad this book… Make that garment… Do this amount of exercise… I put so much pressure on myself to relax that I can exhaust myself. This holiday I decided that my priority was sleep. My sleep pattern was really disturbed over the christmas holidays with needing eye drops through the night, and I know I need to sleep. My next priority was to try and go with the flow. If I blogged great, if I didn’t, great. If I did any work, fab- if I didn’t do any work- fab. I don’t find this easy. I felt the pang of guilt yesterday when I only woke up at lunch time… But I am going to consciously choose to do what I need- not what I think I should do.

So I write this blog because I want to. Lemon drizzle is in the oven because I wanted to make it for my friends. I’ve listened to barchester towers on the radio because I have the time to stop and listen. I’ve mentioned many times that resting and relaxing are a huge challenge for me… I really hope that this week is a step in the right direction.

I leave with my view from the balcony… What a gift.

Thanks for listening.

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