Facial disfigurement: A voyage around my face

Relaxing in Vienna's Rathauspark
Relaxing in Vienna’s Rathauspark

That face above is mine. So what do you see when you look at it, especially if you have never met me before? Go on, be honest. The truth won’t hurt me. At least not now.

I’m facially disfigured. In truth I’d like to look like someone else – Brad Pitt and George Clooney ideally, but I’d have settled for something more normal and less noticeable than my own. I’m 60 now so I know that’s never going to happen. This is who I am now, scars and all. Physical scars are one thing, psychological ones something else. More about that in another blog, but for the moment here’s a little biographical detail.

Fifty-eight years ago this month I was with my sister alone in our home. Lorraine is just one year and four days older than me. Mum was across in the shop buying groceries, about 20 yards away. It seems Lorraine was holding pieces of paper close to the fire then tossing them in once they lit up. I was obviously watching my big sister, so when she left the room for a moment I reached for the paper and held it close to the fire too. Once I saw the flame I must have panicked, dropped the paper on my plastic bib  and set the plastic alight. Lorraine remembers flames shooting up from my chest and neck as I screamed in agony trying to run out the front door. But there was no escape. We were both too small to open it, but our screams reached my mum’s ears and within minutes the fire brigade arrived.

I spent two and a half years in hospital following the accident and I don’t have one single memory. My left hand was badly burned and the fingers twisted and web-like in appearance. I had special cutlery that looked more akin to surgical instruments than a knife and fork. I was 12 when those fingers were finally separated and I could hold my hands together so that the fingers touched properly.

Unfortunately, my facial injuries were a lot worse than you see above. For example, my chin had fused into my chest to give me a quite horrendous appearance. As the years passed and there was no sign of major reconstructive surgery, dad decided the best option was to take me home before I became too institutionalised. Eventually he donated a skin graft to provide me with a chin. The operation was a failure. There was no option but to take the graft from my stomach and attach it to my chin, so I’m the only man with three chins.

It may not be so obvious from the picture but my ears were also burned: the right one has lost most of its fleshy flap, the left a bit. I grew my hair long to hide them initially, but then realised people rarely noticed the ears anyway.

The throat area is a patchwork quilt of skin grafts. Some areas there are soft, others hard, and the pigmentation varies. The sides of my face are a host of brown shades, but are basically scorch and burn marks. They give my face a somewhat tanned look.

And then there’s the chin. Because it’s a skin graft the skin tone doesn’t sit well with the rest of my face. It’s the most obvious feature people notice because it has been stitched on and has a bulky appearance.  My bottom lip is also stitched to the chin and looks swollen as the lip itself looks very large. I always have the sensation that my lower lip is inflamed, and keeping my mouth closed for more than a minute causes aching pains and discomfort to this day. I also tend to drool because I have little muscle control. Loss of muscles and nerve tissue led to an attempt at one stage to transplant some from my left hand onto my face and chin. I still drooled.

So now you know. So far I have had more than 40 operations associated with the accident, mostly skin grafts. The last one was a real horror experience that finally ended whatever slight hope I had that I might look more normal.

Welcome to my face.

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57 thoughts on “Facial disfigurement: A voyage around my face

    1. Not so easy to write about yourself, to be so personal and invasive of your own self, especially as I have a wife and two children who weren’t part of my early life’s journey. They are all older and wise, so a blog will help me reveal my real thoughts and experience to them, myself and others.

      1. Hi Tom – I’m in awe of your battle from infanthood to this day – I could describe it as brave, but unfortunately u had no choice but to fight on! When I look at u, of course I notice your disfigurement, but I can honestly say that that what shines from the eyes is far stronger then any scar so I can only imagine that those who have the pleasure of meeting and talking to you don’t notice it any more – It has probably helped to shape the strong man that u are today! I wish u nothing but luck with the rest of your life..

      2. Thank you Brenda. I can only agree with your assessment. The road to where I am now was arduous, lonely and very painful for many years, but I like to think I’m a fighter and have for the most part overcome many obstacles.

      3. that you have managed to write about your incident, even now, is a testament to your bravery and the coming to terms with an incident that I, and most of us, can not even begin to concieve let alone empathise with. I will certainly bookmark this page – because followers provide support and encouragement in your ongoing process…

      1. Procrastination is an enemy of many things.Tom, I admire your candor and realistic attitude toward your circumstance. Things you say here helps us all, with situations similar to your own, to “man up” and face a cruel world.

  1. Never knew the full story before, Tom. Thank you. Wasn’t it a good plan that we look out from our face & not at it! Otherwise I’d be reminded more often I’m not the beauty I know I am!

    1. It’s a good point you make about looking outwards not inwards. It’s how we deal with life’s setbacks that define us. I have told little about myself in the past when people asked what happened my face. Most never asked, even people I have known for over 20 years.

  2. Brave piece Tom. I am probably one of the people who knew you who never asked. It’s not the kind of thing people feel comfortable bringing up. But it is good to know what happened, even it is a very sad story and terrible to know how much pain and discomfort you must have suffered. Well done on the blog. Grainne

    1. Hi Grainne. Thanks for your response. That piece is just an introduction to me, just an explanation. I can understand why you didn’t ask, and I respect that. There has been a lot of sadness, pain and regret in my life, but there have many, many fantastic moments to and I’ll write about all those so keep reading!

  3. Tom, so well written as you so can:) i met you first when i was 11 yrs old and still remember it so clearly. You were my aunts new boyfriend and we were told that you were burnt as a child. When I met you I must have asked, cause I know this story. What I want to say thou his that from the moment I met you, you were amazing in my eyes. And down through the years you have been an incredible influence and support. It’s a little sad for me to think about how you once felt. But you are right people look at faces, we stare at them (be they beautiful or not) and we judge. But I know that when we love someone and when we find true friends that we can look beyond the face and see so much more. We don’t see the face anymore….love you tom and am loving the blogs 🙂

    1. I remember that first time too Andrea, and your acceptance of me. It was a little milestone on my road to healing inside. Thanks a million Andrea for each day I have known you. The light you shone on my life and your have helped enormously.

  4. My son has a cleft lip and palate, thank you Tom for sharing you’re story. Quite brave and an inspiration to young men like my son Dylan

    1. Shane, firstly thanks for reading the blog. I am writing to help others as well as myself. I will be adding to my story in upcoming blogs so hopefully they will help Dylan realise he is not alone. Not today and not tomorrow.

    2. The eyes have it! Don’t want to hog Tom’s site bit I too have a hare lip and cleft palate. Now in my 60’s (how did that happen?) I didn’t suffer like Tom as the three or so operations I had that I remember were more of an adventure without the kind of physical pain that is Tom’s experience. So much depends on your personality especially for what is in reality a minor thing like hare lip. But not when your life seems to depend on making a good impression. Most difficult thing is the assumption by some that you must be stupid as well. So you need a well thought out strategy to deal with that one. Staring – even now I occasionally think its because they notice my new hair style or glittery earrings – hence so nice that we look out from our faces so we are not continuously in the grip of our little peculiarities. Depending on mood I stare back, wink, smile or ignore. You would be amazed at how quickly people become aware of themselves and look away. That always amuses me even when I’m not feeling very optimistic. And it’s so nice when people smile back – a fellow-feeling connection that gives a feel-good glow. Apart from the apparent fact that a smile relaxes the muscles in your face normally, I think when you wander around with a smile on your face, it deflects people from looking at you negatively and they respond to the smiling eyes. One other observation – the more minor the defect I think the more closely people scrutinise you. They know something’s amiss but can’t figure it out – I notice this especially if I’m wearing makeup that conceals to an extent my scar. And back to Tom. Yes, the smiling eyes but also the firm handshake and the immediate engagement with you so instantly you are aware of this decent person and what you see is just an essential part of that. It’s the good bit about being human. Some people are lucky and realise this when they are young and before they put themselves through too much trauma. Thanks Tom. And Shane. And Dylan.

      1. That response is a blog in itself Ann. I knew you had a hair lip but you have such a positive attitude to life I never thought to bring it up in conversation. I also held back because I knew a young boy with a really bad hair lip. He too went through a series of operations and is now a hospital consultant. A woman might find it easier to ask a man/boy about a physical defect, but rarer still for the roles to be reversed. And your poins about staring and how you react are superb. It’s on my to do list for a future blog because I have definitely been there. Feel free to comment any time Ann. Always enjoy your feedback.

  5. I too am 60. I’ve seen you around most of my life without actually knowing you. I guess I remember you because you were different but different in the same way as if you had long hair or drove a flash car or something. I realised that you must have had a major accident when you were young but to be honest it never occured to me that you would be affected by how you looked as to me you were normal, scarred yes, but normal.
    I hope that by writing this blog you can come to terms with your past and enjoy the rest of your life in the knowledge that it’s not what you look like but what you see that matters. Good luck.

    1. I have, largely, come to terms with how I look and deal with whatever life has to throw at me as well as most. I have a lot to be grateful for – my wife, two fabulous kids. You would be surprised at how many people who perceive themselves to be different are affected just like I was.

  6. I have to say, I too was drawn by your eyes first, Tom. They are kindness and delight personified (and nice eyebrows, too!) Didn’t even notice the lower half of your face. But it’s good to share your story and be willing to answer the questions that people naturally have. I especially adore children and their candid way of asking questions about people’s differences…no malice about it, just natural curiosity. And yet they are often chided for it, sadly. I also have a slight disfigurement on my lower right jaw — the remnants of a bullet wound suffered at the hands of my late husband. Years have faded the scar but not the memory, and to be honest, although corrective surgery was offered and would have been an easy thing for me, I never opted for it because that scar is part of my life story, so why hide it? Thank you so much for sharing…I hope your blog goes a long way to help others accept themselves as they are and not worry what others think about appearances.

    1. You’re as candid as myself. The point about children is important. I have always believed an honest question deserves a straight response, more especially if the child asking the question is your own. Thanks for your kind comments and the way you have written honestly about your own experience.

  7. I made comment, earlier, on your Facebook. But, having just read the above, I am totally moved, inspired, free of my own bi polar related problems and, just relaxing, having found an inspiration for what time, I have left. I know, there will not be a day, I won ‘t recall what you said, a day, should my illness ignite, your story will be the best medicine. I honestly believe, as we all share it, this will help so many people worldwide. It took great courage to be, even, able to sit down and, write it. But, as I have found out in recent months, to share my, currently, past mental problems, is great for so many out there, thinking, probably, even know of ending their lives. I now help people, one, a non swimmer who jumped into the harbour but, saved by friends. There are so many out there that people do not understand, as was probably, your case, the constant mental pressure you go through from illness. I am delighted to have worked with you in journalism, somebody, I think, I know. Is a good friend. You do not realise the good you have done today, probably, the lives you saved and, you are now a hallmark figure to me in coping with serious illness.
    Regards, Dixie

    1. That’s a hell of a compliment Dixie. My goal in the blog was put my story out there – and I have a lot more to say – and hopefully encourage others who may be in a similar situation. I hadn’t realised, until I read comments on this blog on social media, that what I wrote would resonate with so many people and that is very encouraging. Finding the light in the darkness that descends on all of us at times isn’t easy and I hope you continue on your road with greater peace. Glad anything I wrote helped.

  8. Tom, I am so glad you have written this. I have always wondered how you came to have your disfigurement – but I never had the gumption to ask. Well done

    1. Amazing the number of media people who know me never asked! It must be a disease. Grateful for your comments. A tough life, but so much to be thankful for. I’m in a good place thankfully. Delighted for your comments and support.

  9. I know you from ” around Cork ” all my life but do not know you personally. That is a fantastic piece of writing. I would have heard versions of how you were injured but it is so much better to be able to read your own story. Well done.

  10. Hi Tom,

    My name is Clare, I loved reading your blog.

    Thank you for your insight into your life.

    Your words are incredibly honest and inspirational.

    It is very generous of you to share your story and feelings with the world.

    One the most noticeable scars I have, following a bad car accident when I was 18, is one on my forehead.

    I notice it every day looking in the mirror and hate it, always wondering if I could ever do something about it.

    Most of my friends say they never noticed until the moment I told them, however I have been upset by strangers at parties in the past, commenting on my scar, making ‘scar face’ jokes and had to leave crying once or twice.

    I realise mine is a very minor scarring experience compared to your lifelong battle, but I just want you to know I can relate to your feelings.

    I have learned to accept my face and forget about the scar as much as possible and realised that the less you see it, the less others will too!

    Radiating the beauty of your soul through a smile is always a winner 🙂

    Thanks again,
    Clare

    1. Hi Clare, thanks for your kind words. A scar is a scar, whether it’s big or small. You know it’s there and you imagine everyone else sees it when they look at. Most, if they are honest, probably do, and then that’s replaced by either acceptance or curiosity. I have learned this from long experience. People say what you are like inside more important than your appearance. It’s so true, but you and I only think of the reality of our own face. I understand completely how you feel about stepping outside at parties and the like. That was a huge issue for me, and as the blog develops I’ll outline my own experiences. You are unique and and amazing person. Don’t ever forget that. Feel free to contact me at tomhickey.tom@gmail.com if you want’ to chat more.

  11. Came across the link to your blog on twitter this afternoon. As someone else said, your eyes drew me first to your face. It was only after I read your piece that I went back to look at your photograph again. Thank you for sharing your story. Once again, through social media, I’ve read about another courageous inspirational person whose story touched me. I’ll be back for more.
    Marie @MaudMonaghan

  12. I don’t know what to write, I am in awe of you and can’t begin to think what it is like to walk in your shoes. Stay strong, stay inspirational.

  13. Hello Tom, A well written piece and deserved praise.. In the East Kent Branch of the Lets Face It group, several years ago, Christine invited members of the Laryngectomee Club of Ashford, to join the Lets Face It Group. A laryngectomee is a person who through throat cancer had their vocal cords removed, including the Epiglottis, thyroid, amongst other things, making that person silent initially, and for- ever breathing through a hole in the neck,
    Most of us now talk artificially, with a robotic voice. .through a silicone valve in the throat, controlled by our thumb. This is a poem I wrote when we first joined.

    THE PHOENIX
    By Len A.Hynds

    The Kent Group of ‘Lets Face It ‘,
    invited us ” Larry’s ” to join,
    but surely they would not permit,
    that we, their good name purloin.

    We felt that we were not good enough,
    our conversions were all inside,
    covering all, however tough,
    made us expert at what to hide.

    But Christine said, ” You’ve been there too,
    the same problems you’ve had to face.
    With courage you all, just saw it through,
    and with such exceptional grace”

    And so my friends, we are glad to be
    joining this group with panache.
    You are all like some Phoenix rising,
    ,from the fiery cancerous ash..

    THIS LIFE
    By Len A.Hynds

    This life is a journey, as time goes by,
    scurrying like clouds across the sky,
    In minutes and hours, in days, in years,
    often so happy, in others in tears.

    So try to be smiling, just every day,
    at everyone who will come your way
    Try to find time for one another,
    treat them as a sister or brother.

    Each day is a bonus as your life hurries on,
    even those days when something goes wrong.

    Best wishes Tom,………
    Len of Ashford, Kent, England.

    1. Hi Len. Fine inspiring poems there and Christine is right about Lets Face It having a warm welcome for you. Thanks for reading the blog and for sharing your poems. Best wishes to you.

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