My name is Paul Wilden, and I am a 54-year-old English man living in London. This article tells my own story of microtia and its impact; both negative and more importantly positive on me.
I was born on 21 March 1968 to Valerie and David Wilden in the town of Bexley, in the county of Kent in England. I was their first-born child and the oldest grandchild on my father’s side. Prior to my birth and during her pregnancy my Mum had some minor problems which resulted in the Doctor instructing her to take to her bed and rest – something which was deemed to be the best solution in the late 60’s (there has always been a question mark as to whether these “minor problems” had any bearing on, or connection with my microtia – I guess we will never know!).
As you may have noticed from the picture(s) published on this page I have stage 3 microtia – i.e. I was born with what can be best described as a single flap of skin on my right side where the bottom of my ear lobe should have been, but other than this no exterior ear to talk of. My parents (and I guess me too!) were fortunate, in that in the 1970’s and a significant part of the 1980’s, it was fashionable for adults and children to have ‘fairly’ long hair and for a large part of my childhood, teenage years and early adulthood I wore my hair “long” and over my ear to hide it and ensure I lived normally.
I have had numerous operations on my ear, including the opening of my chest, the removal of cartilage and the “construction of an ear” on my right side and more recently surgery to reshape the ear, drill through my skull, create an ear canal and give me partial hearing.
This story tracks my experiences and memories (and to some extent those of my parents and sister) and is published on this website to hopefully help other children with microtia and their families get a better sense of who they are, how lucky they are and how normal they can be. I sincerely believe I was “privileged” to be born the way I was born, primarily due to the many great experiences I have had to deal with and would have “missed out” on, if I had been born with two functioning ears. For this, I owe a massive debt of gratitude to my Mum & Dad for just treating me as Paul…….
My birth in 1968, was at least two years after the thalidomide scandal and whilst initially there were concerns (and as a consequence checks made), the conclusion was rapidly drawn that my Mum had not been prescribed any of the phalidomide drugs and my ‘condition’ was not connected to phalidomide, it was just an “accident of nature”.
My memories of early life are clearly limited, but I do know from my Mum that shortly after my birth my parents had to agree to a procedure which saw an injection being administered in the top of my head, drawing off fluid with the sole purpose of checking for other abnormalities/ problems. This procedure was one my Mum could not bring herself to watch, and my grandma took over from my Mum and held me whilst the Doctors and Nurses did what they had to do.
The results of this procedure were as good as they could have been, with confirmation all of my other organs had developed normally and aside from the physical abnormality with my ear and the lack of hearing on my right side, everything was OK, and I could be expected to enjoy a normal childhood and life.
I was also incredibly blessed and lucky to have the most amazing Grandfather; amazing because after my birth, he offered to give up his own ear, so I could be “normal”. Clearly this didn’t happen, but my knowledge of this offer from a young age has meant I have always held my grandfather in the highest regard. Such an amazing act of courage.
Surgery was clearly on the cards, but this was something which didn’t need to happen immediately, and I could be ‘left alone’ to enjoy being a little boy; playing with my toy cars, my Lego and my sister.
The early years...
Normal, normal, normal – I was oblivious and none the wiser to my condition. My parents, rightly so, had decided to just treat me as a normal little boy and to my sister Louise (born 2 1/2 years later) I was “just Paul”. The same applied to my cousins and to all members of my family.
Ignorance was bliss for me, and I was just a little boy, being a little boy.
Due to the impending surgeries and to try and give me some confidence and independence my parents made the decision, in consultation with the family doctor, to send me to kindergarten/ play group early (at the age of 2 1/2). The purpose of this was to get me used to the idea of being away from Mum, ahead of the many visits I would be making to the hospital. A sensible approach, but one I believe continues to impact me today, both in terms of my confidence and my willingness/ ability to ‘go it alone’ and operate as a ‘self-starter’.
One of the key events and milestones for my parents was just before the “major surgery” commenced with my Mum & Dad having to sit me down and explain to me I had an ‘unusual’ ear, and the Doctors and Nurses were going to try and fix it and make it better. This conversation is not one I can remember, but one which clearly would have had a profound impact on my parents. I imagine the conversation had no real impact on me at the time and instead I went straight back to playing with my toy cars and Lego. No doubt my Mum needed a large Brandy afterwards and probably before too!
I think it’s fair to say, surgery included, my childhood was full of love and “normalcy”. I would be lying if I said the surgery and hospital stays didn’t traumatise me at some level, but this was primarily driven by my not understanding what was happening, why my Mum & Dad were leaving me alone in the ‘scary hospital” (something which wouldn’t happen today as parents are encouraged to stay with their children whilst they are in hospital) and why the “nice” nurses would turn nasty and keep sticking needles in me (to this day I am scared of needles). This is something that troubles me, at some level, even today.
Some of my ‘good’ hospital memories include the luxury of having my own teapot, being allowed to pour my own cup of tea and literally scooping many, many large spoonful’s of sugar into the cup (something Louise, my sister was very jealous of and I took great delight in doing in front of her), making paper aeroplanes and throwing them out of the hospital windows in summer (aeroplanes which my sister then found in the street) and taking syringes from the medical store room, filling them with water and spraying water out of the window at passers-by. I also remember my dad bringing up the train set and setting it up in an anteroom to the ward, my grandfather visiting and the presents!
I got very good at “demanding” presents. I hated injections, was petrified of them and would do anything I possibly could to avoid the needle, but……… if my Mum was to offer me a gift in exchange for an injection, I would weigh it up and generally concede to the injection, as the present was, in my mind, worth more than the pain from the injection. To be fair I wasn’t a spoilt brat and to put this in context the gift would probably be something like a pencil.
Some of my worst memories relate to needles and injections, particularly when my Mum wasn’t around. I can remember trying to fight off the nurses, which ultimately lead to me being held down by one or two nurses whilst another injected me. Not a pleasant memory, particularly as I would have been tensed up from resisting, which of course, with hindsight meant the injection would hurt even more!
Another bad memory relates to being told I could go home and the nurses coming to my bed to remove my stitches, only for me to be told the stitches were too deeply embedded and I would have to go back into the operating theatre to have them removed. This meant another injection! I was very upset, upset I couldn’t go home and scared as I knew another injection was coming. I was clearly very upset as my Mum was allowed to take me out of the hospital for the day. We had a great day and I remember only thinking about the injection when I got back to the hospital.
To be fair, a lot of memories of hospital have merged both mine and those of my Mum & Dad. It was a long time ago, I always went to the same hospital (University College Hospital, London), was under the care of the same Doctor/ Surgeon, always stayed in the same small ward and always had the same visitors. Therefore, difficult to distinguish between visits.
As I said at the beginning of this section, my childhood felt normal to me, I was loved, had fun and was part of a close-knit family…….
I went to school (my parents were told I would never be academically successful as I would miss too much in the classroom), did my homework, rode my bike, played with my Lego, built camps, fought with my sister, argued with my parents, passed and failed exams, got into music, fashion, hung out with my friends, went on school trips, smoked at the back of the school coach, ran away from home (and came back within hours) and pretty much didn’t think about my ear…….
Becoming an adult...
I have deliberately used the term ‘becoming an adult’, as for most teenagers, we think we are adults long before we officially become adults.
I think, in all honesty, I found becoming an adult harder than being a child from the perspective of dealing with my ear. There was an element of being picked on because of my ear. Some of the kids in my year at school would deliberately get me into a neck lock to then uncover my ear and show it to people. Very humiliating and something which left me hurt and feeling alone. There was the juxtapose of wanting to be protected by Mum & Dad versus the need and desire to be strong and independent. Something which I found hard to navigate. My way of dealing with my ear was basically to ignore it, which with the benefit of hindsight was probably not the best thing to do, as it continued to impact my true self confidence for a very long time.
I guess I had no frame of reference, no support mechanism, other than my parents (who at this point in my life were super uncool and an embarrassment to me – typical teenager!).
This really is one of the main reasons I have written about my experiences. Hopefully other microtia sufferers will be able to relate in some way to my story and be able to take away ideas for how they can improve their lives and take ownership of who they are ! i.e. in some small way this story becomes a support mechanism for them.
Being a teenager and young adult is all about trying out our newfound independence (perceived and/ or real), finding confidence and rebelling. The majority of teenagers take an interest in fashion, music, going on dates, learning to drive, drinking alcohol, going to disco’s/ nightclubs and generally trying to forge their way. I was no different, in the most part…
My confidence was not complete. I still wore my hair below my ear, although I got braver, wearing my hair slightly higher up my ear. I would also, consciously “position” myself in bars and restaurants or at people’s homes so that a) my ear wasn’t on show (even partially), and b) I maximised my potential to hear. I did all of this, but wasn’t really comfortable as this was making me standout.
In 1991, a significant event in my life occurred. I left the UK on August 31 on a one-way ticket to travel the world. I wanted to spread my wings, take flight and really find myself. One of the biggest issues for me to deal with was my ear and cutting my hair short above my ear, plus I felt there had to be more to life than school, studies and work. I was right! 🙂
My world travels were definitely a ‘rite of passage’ for me. I learned how to stand on my own two feet and for a very long time after I would refer to my 16 months of travel as “the best time of my life”. I think this is because I started to become my own person. I was lucky enough to visit Thailand, Singapore, Australia (where I lived for just over a year), New Zealand (where I lived for three months), Fiji and the USA.
I worked as a cocktail waiter in Perth, Western Australia, I worked in a Disney themed store in Sydney, and I worked on a dairy farm in Hamilton, New Zealand (getting up early every morning to get the herd into the shed for milking). I also completed a dive course on the Great Barrier Reef, went sailing, blackwater rafting, white water rafting, jet boating, heli-hiked the Franz Josef Glacier and did a bungy jump in New Zealand. Being a complete backpacker, I also learned how to party hard and well and truly found my drinking legs!
One of the most meaningful moments for me was in Sydney in April 1992. I forget what the catalyst was, but I decided it was time for me to have my hair cut above my ear. This was a courageous act for me and I vividly remember the journey from my house to the hairdressers in North Sydney and the discussion I had with myself in my head; “you can do it, why do it? it’s not a big deal! Why put yourself through this ? You can just have a trim. Don’t be a coward do it”.
I did go through with it, my memories are more of surprise; pleasant surprise at the reactions and for the most part, the reactions I didn’t get. The hairdresser was non-plussed, she chatted about the usual things hairdressers chat about; nightclubs, men, holidays, plans for the weekend. I remember listening to her, but thinking at the same time; “why isn’t she reacting, or encouraging, or supporting me? What is this nonsense she keeps babbling on about!?!?”
I left the hairdressers and remember standing at the traffic lights at a major junction in North Sydney and checking out everyone else to see if anyone was looking, or staring at me. Nobody was and I remember being surprised. At this point I was feeling a mix of elation, panic, release and strength.
Arriving home, my flat mates were supportive, saying they were proud of me for finding the courage. This encouragement meant a lot.
Friends then started to ask what had happened to my ear, what was the condition called, could I hear and could it be cured?
I didn’t know the answers to any of these questions. My friends were surprised, and I was disappointed for not knowing anything about what was clearly something so fundamental about me. I decided to find out more…
I then completely forgot about my ear! I forgot to tell my Mum & Dad about cutting my hair, I forgot to tell anyone back in the UK. How odd. I’m still not sure, how or why I forgot to tell them…
My return to the UK - the next stage of my life begins...
December 18, 1992, I arrived back in the UK.
Sixteen months after my departure I am back. I feel different, I feel energised, I feel more confident. I feel ready to move forward with the next stage of my life.
After a family Christmas I travel to Paris to spend time with Louise who has been living here for a year and then back to England and to focus on finding work. I temp for a while at McKinsey & Co and finally start work at Citigroup in March 1993.
I also visit my family Doctor to ask questions about my ear. I am referred to a leading ENT specialist in London. Our meeting is informative; he tells me my Mum probably had a disturbed pregnancy (i.e., a threatened miscarriage) and this could have caused the abnormality. He also suggests I go for a CT scan to check the status of the middle and inner ear. I agree…
I return for the scan and then the results.
I was definitely shocked by what he told me; ” the inner and middle ear is fully formed and it is worthwhile considering surgery to drill through your skull and give you hearing”. Give me hearing? Did I hear the Doctor correctly (no pun intended!) ? I might be able to hear on my right side? I remember trying to digest what he was saying and also agreeing to the surgery. Wow!!!!!
April 21, 1994, the day of my surgery…
My friend and flatmate Helen comes with me to the Princess Grace Hospital in Marylebone.
I go through the process of admission and by the time Louise arrives to see me I have already had my pre-med and I am spaced out and talking nonsense!
My surgery took 2 1/2 hours and to put this in perspective; open heart surgery is apparently as long and an appendectomy takes 20 minutes! In summary the Surgeon drilled through my skull to make me an ear canal.
Post-surgery I recovered quickly. I was on my feet and out of the hospital relatively quickly and spent time recovering at my parents’ house. I was soon ready to return to London and was to be seen ‘around town’ sporting a bandage, or as some of my friends called it; a pillow on the side of my head.
One of the most emotional events for me in relation to this surgery was the final hearing test. All the bandages had been removed; the hearing test had been completed. My doctor said three very important words to me “you can hear”. These words were so, so incredibly important for me and as I type this and think about his words and the emotion of then calling my Mum & Dad as I left the clinic to tell them “I can hear”, the same emotions start to return…
Life returned to normal, and my financial services career continued to develop and progress, with a change in role, increased responsibility and promotion.
I found myself being sent to New York on business and making other trips outside of the UK to meet clients. My first business trip to New York was especially meaningful for me, as I met a chap with microtia in the hotel gym…
It was such a weird moment, sat on one of the machines in the gym, observing the gym trainer (probably staring at the poor guy!!) and his ear and thinking to myself “how do I approach him? what do I say to him? should I approach him?” In the end I found a way to start a conversation and it was great to talk to someone about the operations, ask him what he had had done, recount stories from childhood and basically “just relate”.
In summary, it was good to meet someone with microtia and to realise that I wasn’t unique physically, or emotionally due to the experiences I had had and the journey I had taken.
“Normal, Normal, Normal” – AKA: Successes and Failures, High’s and Low’s, Laughter and Tears....And what comes next....
Unfortunately / fortunately, my life has continued to be normal. I have seen successes with my career; promotion through the ranks to Managing Director of a Global Bank by the age of 38, expat relocation to Asia in 2005 where the opportunities for both professional and personal development are plentiful. Personal challenges have continued to abound due to being so far away from my family and long-standing friends, as have opportunities to develop as an individual and to ‘give back’.
I enjoyed living in Asia for 14 years and travelling both extensively in region and around the world including to South America. I returned to the UK in early 2019 as a married man, with both a successful career in Financial Services, a founding member of the Singapore Business Network on DisAbility (the A is deliberately capitalised) and as a Board Member of Smile Asia.
Which brings me to the conclusion (for now) to my story and this journey.
The next step/ chapter for me is about giving back and it is this desire and intent that has propelled me to join the board of Face Equality International and to continue to take every opportunity I am given to add value through contributing ideas and sharing experiences.
My journey so far has been a good one, I have had a lot of great experiences, which have helped to make me into the person I am today. I am conscious that as a child and young adult I had no means, or medium outside of the family unit to talk about my ear, read about my ear, or to hear about how others have dealt with the same condition. I sincerely believe I would have benefitted from having access to websites like this and from reading stories such as my own, or some of the others you share.
I hope people who read this story and navigate their way around this website can, in some small way, gain benefits from merely giving up their time to read “my story” ….
July 2010, refreshed and updated in March 2022
And here is the core message for other people with microtia (incidentally, it is only after seventeen years’ friendship that I learnt the name for the condition!) and family and friends of people with this or analogous disabilities. If you have the condition, don’t worry that somehow people won’t want to be your friend because of the disability: you are you – like Paul is Paul – and people like people for who they are. I have had the privilege of reading several, earlier drafts as Paul’s story has been written. Even though we have been close friends for many years, I have learnt more about him and what makes him tick. I hope his story will inspire others to make the most of life and to put any disability they might have been born with / acquired, into perspective.