One person's story
In gratitude, this is my attempt to put the past six years of supurb care by you and your team into the broader life context of my experience with UCLP. This is my story. I trust that this letter is more considered and eloquent than I could ever be face to face.
Some forty-seven years on, I finally feel as though I no longer have to constantly wonder when, in my eyes, the deformity will be gone.
For as long as I can remember, I have hated the cleft abnormality. Up until the end of primary school I don’t remember too much specific teasing, but I knew that I was different than most other kids around me. As a young boy, the frequent visits to Darryl Bowden usually filled me with fear as I wondered what might happen. The specialists themselves were also comforting, but I felt as though the adults were not always telling me exactly what they were going to do to me. I wanted to know the intricate details. For me, the fear of the unknown was always greater than fear of the known. It’s difficult for a kid to find the words to express this sentiment. Moreover, it’s probably a no-win situation for the adults involved in deciding how much information to tell a child – everyone’s different. As an adult, I can appreciate that it must have been a difficult judgement for my parents.
Dissatisfaction with my appearance deepened throughout high school. In addition to the awkwardness of adolescence, at times I felt as though I was the ‘freak’ of the village. I know this is a terrible word, but it was how I felt. At the other high school in town there was another kid who had a cleft, and kids used to say awful things about him. I imagined that people were saying the same things about me. One such cutting experience occurred when I was sixteen. I was enjoying a Saturday evening with friends at the roller-disco (Saturday Night Fever on skates – we were so cool in 1980!) For me, the problem was that the movie ‘The Elephant Man’ had just hit the cinemas and that particular evening a group of kids decided to let me, and anyone else within earshot, know that I was the local Elephant Man. I pretended to ignore the comments, as I usually did, as the quips were cruelly delivered each time I circled the rink. I don’t think the comments would have cut so deeply had I not partly thought them to be true. To me, my anatomy just looked and felt ‘wrong’; I struggled to bite cleanly, speaking clearly required conscious effort with laboured results, my vocal resonance was hardly mellifluous, and smiling… well let’s say it was unlikely that I would have been the ‘face of Colgate’. Meanwhile, my brother and sister did photographic modelling.
In February 1982, during Year 12, I underwent alveolar bone graft and mandibular osteotomy surgery. My jaws were wired shut for several weeks. This morning of the surgery, I happily agreed to allow a group of medical students follow my progress whilst in hospital. Resplendent in a white gown, I was pushed in a wheelchair from the Royal Melbourne Hospital across Royal Parade, to a lecture theatre at Melbourne University where I waited ‘backstage’ to be presented to the group. I could hear them talking about me. Finally introduced, I was asked to count to twenty five and say a few other phrases. I can remember them saying that I had relatively clear speech considering my development; that I compensated well. Immediately following the ‘show’ I felt acutely embarrassed and wished I hadn’t agreed to the spectacle. The surgery made a significant improvement.
One month later, I attended a reunion of friends with whom I attended the 1981 Canadian Scout Jamboree in the Rocky Mountains. I was not keen on going as my jaws were still wired, but with parental persuasion, I went. There we were – nine kids lined up with camouflage daypacks and Swiss army pocketknives, and me with a lacquered wicker basket and a blender! Needless to say it didn’t do much for my mojo. Anyway, hi-ho, hi-ho, off we go.
Again, on a lighter note, there have been times when people have not understood me articulating my name. I can think of several instances when I’ve resigned attempts to correct people and spent the occasion being known as ‘Frank’. I guess that if you say ‘Craig’ with a soft ‘c’ and a highly nasal ‘raig’ it possibly sounds like ‘Frank’ to someone who’s had a few pints? And once you change your name, you’ve licence to embellish your back-story. One such event occurred during a cocktail party on board a yacht sailing in the harbour of Noumea; never mind how I got there – that’s another story. That night I acquiesced and became Frank, the strudel-make from Austria.
Following seventeen years of appointments and surgeries, I wanted a break. I had had enough. Having discussed it with my parents, we decided that I could resume treatment when I was ready.
For the next few years, mum occasionally asked me when I was going to resume the surgery. At this time, I felt that any attempt to ask me about surgery was another declaration of what was wrong with me.
The desire to resume treatment took hold some time around the late 1980s. I would walk past Dr Cook’s and Dr Hueston’s practices at 87 and 89 Royal Parade and consider taking action. I discovered that Dr Hueston had retired to Provence. He died in 1993. If memory serves (and it has been a while!), Dr Cook’s nameplate disappeared from number 87 sometime in the early 1990s. I think I had seen your nameplate outside a Royal Parade terrace. Unsure as where to go next, I began investigating. To cut a long story short, some years later I discovered you at the Elizabeth Street practice – the same building in which Dr Cook had also consulted. Our serendipitous connection through my work strengthened my resolve to make contact. It was amazing to later learn that Dr Hueston was one of your mentors.
For more than ten years I tortuously set myself countdowns to make the phone call. I would mark my diary and count down from ten days to one and then with the receiver in hand and several digits dialled, ‘chicken out’. I’d then reset the countdown to one-hundred days and repeat the experience. In retrospect, I don’t think I was quite ready to engage in the process.
I had always been embarrassed by my dental disfigurement. I hated looking at the inside of my mouth; the grotesque terrain of my palate and remnant cleft; the missing, misshapen and amalgam-marred teeth. I hated having to show them to anyone, including myself. As a result, I often found myself in a vicious circle of wanton neglect and further dental humiliation. For much of my life I also wore a series of chunky dental plates. I often changed dentist following each period of abandon as I couldn’t face the shame of returning to the same dentist. In July 2004, after another long period of neglect, I commenced treatment with Dr Milecki, requiring the extraction of two teeth, a number of fillings and the barnacles scraped off. I’m proud to say that I haven’t had a filling since and I’m now happily proactive in my dental care – a huge change of which I’m quite proud.
I was growing yet more dissatisfied with my appearance. I don’t think my family or work colleagues had any idea of how I was really feeling as I frequently and cheerfully performed in public. I certainly wasn’t going to tell them. I was also embarrassed that I could allow myself to get privately upset at my condition when, in the scheme of things, there were many people who had far worse conditions than me. Depending on my self-esteem at the time, I would sometimes sit at the back of cafes as I genuinely thought that my appearance up front would be bad for business. I would also cross the street to avoid crowded footpaths as I felt people were staring at me. I could usually tell when someone was looking at me or ‘at’ me. I’ve found it difficult to sustain eye contact with people for most of my life. This has mostly changed now, although I sometimes still have to remind myself not to look down. It’s a work in progress.
The events that led me to finally making ‘the call’ involved the viewing of three television programs and an embarrassing parent-teacher interview. The three programs were a 2004 documentary about a cleft repair team visiting a third-world village somewhere in the world, the February 2005 Australian Story episode featuring Wendy Harmer’s journey with Interplast to Fiji, and a couple of weeks later, Andrew Denton’s interview with Wendy. Following each program I would seriously contemplate not going into work the next day as I believed that many staff and students would have seen the program and would stare at me or ask me about it. I never knew what to say. However, I always went to work, but was highly self-conscious and wary.
Then the last straw occurred in April when, during a parent-teacher interview, my worst nightmare came true. A mother (with her daughter beside her) commented that she had seen the Denton interview and thought I was “doing a pretty good job considering [I was] deformed”. With the student sitting there, it took all my professional powers to politely wind up the interview. I was so embarrassed. From that day every time I saw that student I was angrily reminder of the interview. After nearly twenty years’ service, and for a distraction, I took three months long-service leave from July to September that year to travel the world. The day following my return from a January trip to Mount Buller for hiking, I finally had the resolve to make ‘the call’. I did, and the relief was incredible. At 1.53pm on Tuesday 17 January 2006 (from personal diary) I dialled that last digit. Raelene was my first point of contact. She made the experience welcoming and easy – I’ll be forever grateful.
Three weeks later, sitting in mum’s car across the road from my apartment, having confided hours earlier that I was resuming surgery, she tentatively asked me how I felt about it. I think she, in particular, has suffered quite a bit. As a young twenty-two year old mother having her first child, the sight of my defect must have been frightening. She told me that she remembers the shame of being separated from the other mothers at the hospital with their perfect offspring.
As our candid conversation unfolded, it became clear that she was trying to say ‘sorry’. She told me that she hoped I hadn’t suffered too much. I can remember thinking that the situation seems so surreal. To be trying to reassure your own mother that you’re thankful for being brought into the world; that she made the right decision. I told her that I have never considered it her fault. I’ve always accepted it as something that just happened. She wished there had have been a support group back then; had someone else to talk to. She once told me that her mother in-law asked her why she kept me. And on one occasion whilst visiting her, she asked mum to take me back to the kitchen to get me out of sight when another visitor called.
Today, six years on, everything finally feels ‘right’. The outcome of every aspect of the treatment has been wonderful. The ‘nose job’ that kick-started this final sequence gave me encouragement to pursue the rest. My nose was, in particular, the ‘thing’ I hated the most and had to look at every day. The maxillofacial surgery and dental implants have totally transformed my profile and eating experience. And the pharyngoplasty result is phenomenal – I’ve said this before, but I never knew speaking could be effortless. Dr Andrew Heggie, Dr Anthony Dickinson, Dr Julie Reid and the many other specialists and nursing staff who have helped me, including Dr Andrew Greensmith who I recall assisted you with the rhinoseptoplasty, have made this journey relatively painless and wholly worthwhile. I can certainly appreciate the significant medical advances made since my journey began. It has been empowering to be in control of the process this time round.
For me, the hardest part of the transformation has not been the physical changes, but the changing of my mental image of myself. The image I have held in my head for the past thirty years is of a passport photo taken in 1981; I hated it. I’ve carried that photo in my wallet every day. This year I removed that photo from my wallet. I have a new image and it feels good. I find that I now get a more positive response from people that I meet for the first time. I put it down to a combination of people not being distracted by my sound and appearance, a higher self-esteem generating a more positive vibe, and a few more years of maturity. Many years ago I have up the dating scene following several disastrous blind dates set up by a couple of well-meaning friends. It’s difficult when society puts so much importance on first appearances – even though we know that is shouldn’t really matter. Recently, things have been looking up with a bit more interest coming my way.
Interestingly, I find it incongruous that I have pursued a career as a ‘performer’; musician (restaurant pianist, jazz and rock bands), teacher, and occasional MC. Maybe there’s a safe distance in performing to a group? Perhaps my parents have instilled some sense of resilience?
I’ve always had this background anxiety that this surgical journey would never be over and I’ve felt as though I could never really relax until it is concluded. I don’t want to have any regrets that I didn’t see it through to the end. With the final appointment approaching sometime soon, I feel as though I will be finally able to put it behind me, let it go and move on. It will be a massive relief.
It is fitting that both Dr Hueston and yourself were invited to deliver the McIndoe Lecture at the Royal College of Surgeons of London in 1985 and 2010 respectively. I feel privileged to have been cared for by such world leaders in plastic and reconstructive surgery.
All I can think to say now, although it hardly seems adequate, is thank you.