Reflections of an unfamiliar face - guest post by Elle

Last year I shared Elle's beautiful words with you. She wrote about not being able to blend into a crowd. I identified with so many of her experiences - the stares, looks of pity, fearing drunk peoples' reactions. Elle was born with severe facial deformities which impacted so much more than her physical appearance. 


Elle and I have become friends through blogging. She identified with my stories and told me hers. We've never met but I've never even considered her appearance as being anything different to her beautiful and courageous words. 

She let me share this piece of writing from her blog.

[reflections of an unfamiliar face]

"Eleven years ago today, I had a six and a half hour operation and woke up with a different face. Well, I woke up with an incredibly swollen blackandblue face that I came to know for a few weeks and never saw again, really. I always say that operation made me want to die, but saved my life.

I recently finally got around to watching Beauty & the Beast: The Ugly Face of Prejudice, Episode 3 which has a 32-year old man with Treacher Collins in it. I literally grew up around people that had facial deformities. Not in terms of my family or friends; none of them even had medical problems other than one friend with asthma and her brother with kidney problems. But in terms of where I spent a lot of my time, the Cleft Lip & Palate/Cranio-Maxillo-Facial unit of the only children's hospital here. The kind of faces people stare at in the street was always normal to me, long before I even realised I had one myself. That's why listening to the "beauty" in this episode talk about her first meeting with the guy with TCS freaked me out. I don't know what life is like without thinking faces like that are normal, instead of scary and confusing like it obviously was for her.

The kids that I saw, older and younger than me, better and worse deformities than me, made me feel less alone. I never really talked to them, I was far too shy for that. But I felt like we were all in this together. It didn't matter what our diagnosis or severity was. Treacher Collins, Pierre Robin, hemifacial microsomia, Goldenhar, Apert. None of those names mattered to me. I doubt they mattered to any of us. What difference did it make? When I was born, it was Pierre Robin. When I moved to the United States, they said Goldenhar. I moved back here and it became and stayed at hemifacial microsomia. This is a term I still maintain is just something they call people that don't quite fit so perfectly into the other craniofacial syndromes. I had more shit wrong with me than Pierre Robin kids; I didn't have the eye diseases that Goldenhar had. And for some reason they never seemed to think I had Treacher Collins. One side is slightly worse than the other, so hemifacial microsomia will do. Only as I got older and understood the very big genetic difference between HFM and TCS did I care.

I felt lucky a lot as a kid. I had bones missing from my face, my lower jaw set back from my upper jaw, a cleft palate and major speech problems, non-existent ear canals and a hearing loss, a thumb that doesn’t bend, hips that were dislocated at birth, and strabismus that turned into amblyopia (so my brain only registers signals sent from my left eye, not my right). But some of those kids were so much worse than me. So I felt lucky. When I was doing my undergraduate degree a few years ago, my best friend from uni and I did an internship at that hospital unit. We spoke to the kids and wanted to find out what they like and what they would change about the CLP/CMF clinic. It was a big survey and report we did, thanks to my ex-doctor allowing us to be there and helping us out. My friend was and is one of the kindest, loveliest people I have ever known and I could see even she was taken aback by some of the kids there. Some of the faces. She cried in the car in front of me after the first day, about them and about me, about what they would go through and what I went through. I think because of that experience of spending a few weeks there, despite the fact that she never knew me growing up, she understands that aspect of my life better than most.

I was very lucky in primary school; I grew up around the kids I went to school with from the age of six so they never saw anything wrong with my face. It was just me and the fact that I was always absent from school for doctor's appointments and hospital stays was just me, too. I got a little teased when I got hearing aids, but mostly it was okay. I met my (main) craniofacial/plastic surgeon when I was seven. He was technically my third plastic surgeon; one repaired my cleft palate when I was a  baby and another did further palate surgery in Denver. He always asked me about school and the kids and the way people treated me. (In a very vague, roundabout child-like way that I didn't understand what he was getting at until I was older. I recall telling him about my best friend and I playing our Sweet Valley acting game.) Surgery on my face was just an option for the future when I was in primary school. (The three cleft palate repairs, trying to correct the strabismus in my eyes, the eight sets of grommets and numerous eardrum repairs were not so much an option.) My choice in primary school was always: no surgery. It was something all the doctors got together and talked about, talked with me, talked with my parents, but in my head - it was not going to happen. They were not going to cut around my skull and take my face off, so they could move my cheekbones and jaw forward. No way. Why on earth would I have that done?

Then it began to change. I realised, fully, when I was in my last year or two of primary school that my face looked different. I realised my mum had these huge cheekbones that just never grew for me and how weird my jaw looked when I looked at myself in the mirror side-on. But still, it didn't feel like the end of the world. It could be worse, right? No one else seemed to care. But then I entered high school and the, “Hey freak, what happened to your face?” happened on the first day and that being-hit-in-the-stomach-going-to-throw-up feeling when I realised he was talking to me, and things went rapidly downhill. My doctor continued to ask about the kids at school, the people in the street. I told my surgeon about the teasing to a degree. I told him what they said to me every day. It got a lot worse. The kids in my year. The ones in the year above. The guys in Year 12 in my tutor group. He asked and he asked. I wanted to die. I hated my face. I was terrified of my life being like this. I was growing, but my jaw wasn’t and my cheekbones definitely weren’t. My jaw was aching when I talked for too long and I took forever to eat. Two years of this, I made the decision, myself, to have surgery. My doctor wanted me to wait. He tried to convince me to at least wait another year, so I was closer to being fully grown. I couldn’t do it. I was constantly crying in appointments with him, with my ENT, with my mum. Even though I still didn’t tell them or anyone the full extent of what was happening at school because I didn’t want to upset them. I think he knew I couldn’t have dealt with the operation they always talked about, so he made a smaller one. And I did it, a few weeks after I turned 15. They were the most horrific weeks of my life (although my first ear canal reconstruction was almost on par and took longer to recover from), but I don’t regret it. I still get stared at and I still get comments and my doctor told me this would happen and prepared me for it. But I don’t hate my face and I don’t want to die, so how could it be anything but completely worth it? And people that judge me, or anyone, for opting to have surgery make me want to scream. You’re as bad as the people that judge me for my face. People that say crap about plastic surgeons should meet the ones that help these kids. Should meet the ones that go to the third world countries and repair cleft lips and palates.

I would like to be one of those people that seem to just be able to move past it. The stares and comments barely cause me to blink 90% of the time these days. But I don’t think I will move past it. It was my life. Even though I only see my ENT these days, I still think of it as being a big part of my life. I do, honestly, just wish I could sit at that hospital in that clinic and meet every one of the kids that go through there. I want to be able to help them, be someone to talk to that actually understands what it’s like, to tell them they will make it through this pain and recovery and teasing and survive. That’s all I ever wanted when I was going through it. Someone that had my face and knew what it was like and would tell me how they survived. Tell me that I would survive."

♥

Words from another blogger - not being able to blend into a crowd

This isn't a guest post, rather a reproduction of a blog entry that I sought permission to use. Elle over at maybe in another life wrote something so profound in relation to an article she read that I had to share it with you all.

I could truly relate to her blog entry - the idea that when you have a physical difference/deformity/disability, your privacy is lost and people feel they have the right to intrude - stare, ask questions and comment at their own liberty.

Every single word of Elle's blog entry has resonated with me - what is it like not to be stared at?

I want to write a follow up piece to Elle's blog entry, but I need some thinking time. I want to explore MacGregor's research more, too.

I hope you get as much out of Elle's words as I did. Thank you Elle.

[it wasn't her words that shook me]

Especially important is the lack of privacy that exists for individuals with facial deformity. Most of us can enter social situations and “blend into the crowd”. However, this is not the case for a person with a facial deformity. Facially disfigured individuals often have their privacy violated. Frances MacGregor states, “...in their efforts to go about their daily affairs, they are subject to visual and verbal assaults and a level of familiarity from strangers, including naked stares, startle reactions, ‘double takes’, whispering, remarks, furtive looks, curiosity, personal questions, advice, manifestations of pity or aversion, laughter, ridicule, or outright avoidance. Whatever form the behaviours may take, they generate feelings of shame, impotence, anger and humiliation in their victims.” (MacGregor, 1990.)

I have read maybe 50 journal articles about this stuff in the past three days for my research project and this is the only one that blew me away. I swear MacGregor has a facial deformity or is very close to someone that does. Only my mum, my brother and maybe my best friend would know even half know that stuff. I constantly say to my mum things about when someone does a double take and or if someone serves me at a shop and I can tell, if we were elsewhere and they didn't have to be polite to me, they would be a starer or sometimes a laugher. The pity smiles, children's curiosity, the whispering and the nudging, the laughing and the pointing. The blatant starers that don't care if I clearly notice, the trying-to-not-look-like-I'm-staring starers, the obvious double takers, the second glancers that try to keep walking and look back at me perhaps hoping I won't notice, the starers that when I look at them they give me a pity smile like, "Oh I feel so sorry for you, but thank god it's not me", the curious ones that at least smile normally like I'm actually a person but are trying to work out what's wrong with my face, the starers that nudge their friend and try to subtley point me out, the men that I can tell are surgeons looking at me medically (one even said to me once, "I'm not being rude, I'm just a plastic surgeon trying to work out what you've had done"), the ones that I think have a family member or a friend with a deformity... Who knew they'd be so many different ways to look at someone? 99% of the time, that stuff barely makes me blink anymore.

I've had conversations with very few people about the details of this stuff, but I just can't believe that article. I've never seen something hit the nail on the head so perfectly. I have said to my mum, I just wonder what it's like to blend in. To get on a train and just be another person, to sit down without a thought rather than stand up because sitting down means more staring. To walk past someone on the footpath and not get looked at a little longer than you should be (if not blatant staring, let's be honest). Then walk further past them and not feel the ones that turned and continued looking even at your back. To walk into a pub or a venue and not be nervous of the drunks because being drunk means losing social inhibition - and courtesy; they are the ones that make just staring look like child's play. I just don't know that kind of a life. Being alone and walking into a train full of people and not one person staring or second glancing at you? What is that like?

This is not a depressing entry. I'm not sad or upset in the slightest. This article just amazed me. I thought it was awesome.

(Originally posted at maybe in another life.)