Category Archives: facial disfigurement

clicks of clarity

Standard

About 2 weeks ago, while on holiday, I had what I call, a click of clarity, I love them… those moments, when you can just see things clearly for what they really are. Sometimes they are totally unexpected and not even related to the current activity, but they just appear and you’d be stupid to ignore. This one was regarding my face, which as some of you will know has been a long term, ongoing struggle for me.

I was lying down on the sofa, and I just thought… my face is never going to change the way it looks- I have no intention of having more plastic surgery or cosmetic enhancers… my face will always look like this whether I like it or not- so actually, if the face isn’t going to change, your attitude better. CLICK. Just like that. After decades of therapy, I had that one thought and its changed me.

My face ain’t changing. So I have to. And I will.

When I don’t blog, I use a private journal. The journal is for all the stuff that is definitely not suitable for public consumption. But today, I will type out a letter I wrote to  my face on 1st August. This is uncomfortable for me, but I know I have to state the intention publicly- and for me blogging is an easier way than telling people (not sure I could do that yet). So here it is… unedited… just as it is, just as I am…

1st August 2017.

Dear Face,

I am sorry. So terribly sorry. For all I’ve put you through. Others have hurt you too, ut I know what I’ve done has been so much more damaging and deep. I have been cruel, neglectful, invalidating and abusive. So awful. Thank you for not giving up on me. Thank you for functioning despite everything you have gone through. Thank you for being so patient with me. I place a marker in the sand- from this moment on my relationship with you changes. I give you my word and my intention. I can’t promise I won’t ever fall or slip in to old patterns, but I can promise as soon as I notice I wills stop I will not indulge the abuse. I will acknowledge it and let it pass- but I will also treat myself with compassion in these failings.

Face, I will need to develop my ability to listen to you and you will need to develop your voice. I know all the abuse has silenced you and you will need to grow in trust of me again. Again, I can’t promise I will never get it wrong but I can promise my desire and intention is to validate you and yours experiences. Keep talking and I will keep listening.

I accept you totally as you are. Your eyes and nose aren’t going to change – I’m not putting you or me through surgery so this is the way it is. I can’t change the way I look and I’m sorry that I’ve been so resistant to you. I’m sorry for the years I have been desperate to look different. I’m sorry for the way I’ve blamed you for everything. I’ve laid it all at your door. The whole lot:

  • rejection by mum
  • being single
  • the reason for my vulnerability to predators

There may be a grain of truth in all of these- but the truth is also that IT IS NOT YOUR FAULT. Face, you are the way you are. You didn’t ask for it- and you are not responsible for other people’s reactions to it… mum, dad, club, peers strangers and most importantly myself. I have made the choices I have- not your fault. I’m not judging myself for those responses- I have done what I’ve done usually because I’ve tried to survive. I have survived. Nut now to live. Cant change what I’ve done but I can change what I do. Wow,such an important moment. I relish this moment: my face isn’t changing so I have to- actually ‘have to’ isn’t the full picture, I choose to… I want to… I really want to…

Facce- you are amazing. You see, smell, speak, breathe, communicate- wow, you are incredible, just incredible.

I don’t want tot insult you by not being authentic, so I’m not yet able to say you are beautiful etc, but with integrity I can say, I accept you the way you are. And I really hope to grow in my love and appreciation of you. Not sure what that really looks like but its got to be better/ different to how things have been until now. I want to look at you with:

  • delight not repulsion
  • compassion not criticism
  • kindness not cruelty
  • to cherish you not to abuse you

Face- may you be safe: safe from the judgement of others and safe from the judgement of myself

may you be happy: delight in your uniqueness, celebrate your quirkiness and glory in your radiance

may you be healthy- may your eyes continue to see, your ears continue to hear, your nose continue to breathe and your out and teeth be healthy and whole.

Your face is welcoming- your smile is radiant and your laugh is infectious. Your lips are beautiful.

“People will stare. Make it worth their while.”    Harry Winston.

may your face be at peace: with itself, with me and the rest of the world.

A new adventure together- not sure where its going and what it looks  like- but things will never be the same- they can’t, because my heart has changed.

“I love you just the way you are”

Love Hepzibah.

Thanks for listening.

 

Advertisements

Going naked

Standard

I have blogged about the facial disfigurement I was born with (sorry, sometimes I know I bang on about it). Of all the issues I have been looking at over the years- the one where I feel I have made least progress is in the way I look.

Until now.

Unknown.jpegSometimes change is so slow it is negligible. I would much prefer the wake up one morning and everything is different- but sadly, that doesn’t really happen that often. But every now and again I find myself doing or saying something that I’m not sure I would have done previously. This is one of the reasons I love blogging- it helps me see the successes and process the challenges.

In the summer I decided to go naked.

I have always HATED the fact that because of my skull not fusing properly I have this thick clump of hair that no matter what I do with it always congregates in the middle of my forehead. I really find it repulsive. (Sorry, wish I could say that was hyperbole but actually I really find it stomach turning).

In the Summer while in Bulgaria, I decided to cut my fringe off. Instead of trying to hide my forehead and it looking worse in the process, with my sisters encouragement, I decided to embrace it and go naked. And do you know what… only ONE PERSON has noticed and I love it!

Daniel, has spoken to me about it. He noticed something different and was very encouraging about it. But no one else has said anything and that is really positive for me. Because that includes the public. It hasn’t made it worse and to be honest, I found the clump of hair so much more upsetting then the scars so its win win, I don’t have the clump and no one mentions the dent!

I AM LOVING THE NAKED LOOK. 

But it doesn’t stop there…  I have suffered with an eye condition for 24 years now and as a consequence the iris in my eye is now permanently damaged and it means that my eye lets in more light than usual. This is really painful and its not just sun that hurts its general day light. Reactor-light lenses do not go dark enough for me so I have been wearing prescription sunglasses virtually non-stop until 2 weeks ago- when I lost them 😦 It is a faff having to swap continually between glasses and sunglasses but its the only way I have been able to manage the pain in my eyes.

But now for the first time ever, I am considering contact lenses. Instead of trying to hide my wide-set eyes with thick and sometimes outrageous glasses- can I go naked? No mask. Just my face. I don’t know. I’m not sure if I would be able to go outside without my glasses. But the situation needs looking at as I need new prescription glasses- so is now the time?

On Friday evening, I spent some time looking in the mirror. (Penelope has been trying to  get me to do this for the last 4 years but I’ve never been able to manage it. (I can actually get ready without looking in a mirror at all.) But on Friday, I sat and looked. Without glasses (obviously everything looks blurred without my glasses) but I could see my face and I just wondered without the glasses whether I might be better doing the fringe attitude. Fronting it out. Doing the opposite to what I want to do- instead of hiding- embracing. Its something I am going to explore.

In reality I am not sure whether I can wear contacts etc… but I’m definitely going to explore. I may just find it totally liberating – like my lack of fringe!!!!

Thanks for listening.

synchronicity part 1

Standard

Penelope (DBT therapist) specifically asked me to blog this week as part of my homework. I’m not sure she has ever done this before, but our session on Friday was so significant that she wanted me to continue processing it and writing blog posts is one of the ways I can do this.

My previous post left you with my homework of 2 weeks ago. To recap

1) research hair styles

2) research make up options and

3) be open to being feminine (sorry, I’m still shaking at this)

My progress thus far…

1) I have made an appointment at the Vidal Sassoon hair academy for half term. I thought that going to a training institution would be a good idea. The students are supervised, they will take the time over my cut and I’m quite up for thinking outside of the box. (However, with my length of hair, I can’t quite believe i will come out looking any different than to how I go in, but I will suspend all cynicism as of now.) Thankfully another friend texted about meeting up over half term and I thought quickly enough and now she is coming with me 🙂

2) I have an appointment with a cosmetic therapist, she does lots of NHS work with re-construction cosmetics … she does a free consultation, so half term I have an appointment.

3) I have consciously tried to think about taking care and trying to create in my routine time and effort in how I present myself.

the most bizarre things have started to happen….!!!!

I went to Westfield shopping centre on Monday. Normally, I NEVER get approached by the make up sales people… again I think it is because I give off the vibe, come near me and I will rip you into shreds…. well on Monday I was approached! I have NEVER been approached before. My heart sunk a little and that awful shrivelling up feeling I feel started to rear it’s head, but I was able to consciously soothe myself and say Hepzibah, stay with this….

A lovely Romanian girl was obviously trying her best to sell me stuff, I wasn’t going to be bamboozled by sales techniques however, I let this girl give me a mini manicure! I let her touch me, look at me, and I was also on show to other people. All the time I was thinking she must be revolted by looking at me, but I could argue the truth, that just wasn’t true- she didn’t need to do this, if she was so repulsed she could have finished quickly or not even started. She then also did a facial. I LET HER… how cool is that!!!!!

Synchronicity…. it does show me, that what I feel about myself both positive and negative does seem to come out unconsciously in a way that others can pick it up… interesting isn’t it! I’ve had people saying I look nice, the kind of people that never normally say that… I am encouraged that just maybe being open, can open up some nicer experiences for me… exciting!!!

Thanks for listening

 

DBT homework

Standard

Over Bank Holiday weekend I went to Amsterdam with a lovely friend, Debbie. I will talk about my lovely trip on another blog at some point, for this post Debbie is the pertinent topic. Debbie is lovely. She is kind, good fun, generous with her time, has a can-do attitude and is also a man-magnet! I’m informed by some of the male species that Debbie is very attractive to men. I don’t fully get it to be honest, but a common feature of my trip was men showing lots attention to Debbie and me just sitting there. (It wasn’t actually quite as bad as it sounds, I kept fairly solid but the difference in attention was very obvious.)

In my next session with Penelope (my DBT therapist) we discussed this phenomena. What was Debbie doing/ saint/ acting/ believing etc that was different to me? If I run with the premise that my issue is not my face then what is it? We came to two conclusions:

1) I am fully aware that I definitely give off a vibe of ‘come near me and I will stab you’ type of thing and

2) Debbie took/ takes a lot of care of how she looks and presents herself.

Debbie took about 40 mins to get ready (I find it ridiculous myself, I would prefer the extra time in bed, however, here Penelope suggests, possibly lies some of the problem!!!) Debbie cares about herself, this happens to come out in her appearance, but she cares, takes time and values her femininity. I on the other hand, do not!

I have made great strides, I always brush my hair (!) (my hair is very short and I’m never entirely sure brushing it actually makes any difference).

I was discussing with a dear friend in the week about the relationship with taking care of our appearance in relation to our internal feelings of self-worth. We didn’t really come to many conclusions, but I can see the logic in Penelope’s argument that people who care about themselves attract other people who care… (would love to discuss this further with my friends).

So, Penelope has set me some pretty heavy duty homework. I have many weaknesses, but I always do my homework, no matter how painful. I am so grateful to have someone guiding me through this pain, so I trust her enough to know she wants me to be better, so I’m going with this even though I find it very challenging at times.

My homework

1) research other hairstyles to match my type of hair (thin, fine, as straight as a poker type of hair)

2) research make up techniques that might enhance my features and minimise my facial anomalies! (I am almost shaking even writing this!!!)

3) be open to considering myself as a feminine being (I think I’m going to be sick)

I can think of every argument in the book as to why I shouldn’t even bother to do any of the above, but I wouldn’t have thought starting to bake cakes would have been any use but now my diet/ cooking is beyond recognition, so it’s not my bag to disagree. (Also Penelope is quite scary at times!)

More to follow… thanks for listening.

Thank you

Standard

Thank you to everyone who has text, commented and hugged me over the past few days.

I am ok.

I have chosen to sit with raw-ness not pretend it doesn’t exist. Friday and Saturday were tricky but I am ok.

I am sorry that I shared the name of the charity- of course I did that in a positive way. I would like to say I really think they do an amazing work and if anyone was thinking of supporting/ contacting them I do encourage to find out for yourself if they can help in your particular circumstances. Unfortunately it hasn’t worked out for me.

My BPD diagnosis is being cited as the reasons for removal of services. I didn’t disclose this at the assessment A) because I wasn’t asked b) I told them about DBT which I felt gave an indication of my issues and C) my psychiatrist does not think I have BPD.

They found this out when they spoke to Penelope my DBT therapist. Ironically, this is the reason for removal but they rung her to tell her that I wasn’t suitable before they even knew this information. Bit of a blow.

I now need to go about the palava of getting that diagnosis officially changed- which involves potentially a lot more angst. However, having my first incident due to this diagnosis if it is not accurate I don’t want it- especially if it is going to cause me hassle!

It’s funny, as I write this lots of pain surfaces about it all. Time for a brisk walk me thinks.

Thanks for listening.

Bit of a blow

Standard

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.

And so it starts…

Standard

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.

20140224-220139.jpg

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.

20140224-222550.jpg

20140224-222603.jpg