Interview on Newstalk ZB Christchurch, 19 Oct 2017

Listen in on demand as Kenny speaks with Canterbury Mornings Host Chris Lynch on Newstalk ZB about growing up with Cleft Lip and Palate, and the upcoming film night for Wonder.

More information on Wonder and ticket bookings available here.

Source: http://www.newstalkzb.co.nz/on-air/christchurch/canterbury-mornings/audio/kenny-ardouin-was-told-he-would-never-make-a-career-of-public-speaking/

Invitation to an evening of Wonder

Wonder Trailer
Essential Details

When: Sunday 03 December 2017 – 5.30pm-8.00pm
Where: Reading Cinemas, The Palms, Christchurch
What: Screening of the film Wonder preceded by Kenny Ardouin’s personal journey.
Who: You, your friends and family – places are limited, so be in quick though and book your tickets to avoid missing out!
Ticket price: $11 (+ eventbrite booking fee) – this is cost price.
Book tickets now: https://www.eventbrite.co.nz/e/an-evening-of-wonder-tickets-38675340986

Questions/queries: Email hello@kennyardouin.com

Listen to the interview about this event on Newstalk ZB – 19 Oct 2017.


As those of you who know me will know, over the past 26 years, like everyone else on the planet, I have faced some challenges. There is no doubt that having been born with cleft lip and palate has played a substantial part in defining who I am today.

Many of you reading this will have stood alongside me as I’ve navigated this journey at its various stages – at times where I was adjusting to the medical realities of the condition, at times where I was facing the challenge of trying to fit in when I was born to stand out, and at times where I was coming to terms with the emotional challenges that this journey has presented.

In 2012, a great book called “Wonder” by R. J. Palacio came out, and follows the story of Auggie Pullman, a 10 year old boy living with Treacher Collins syndrome and a cleft palate. The story follows him as he starts a new school where he faces bullying and betrayal in his quest to fit in and make friends – a story that anyone who has a facial difference will be able to attest to. The story provides hope and encouragement, and resonated well with me – in fact, since the book came out in 2012 I’ve ended all my public engagements and presentations with a direct quote from the book.

Later this year, Wonder is being released as a film, and I have organised a special screening at Reading Cinemas The Palms to share this moment with you.

Earlier in the year, I had one of the privileges of my life to deliver the keynote speech at the UK Cleft Lip and Palate Association conference, where I shared aspects of my journey that I have since realised, I have not shared with those closest to me – partly because it’s difficult to articulate, and partly because I’ve felt that perhaps people wouldn’t understand. On this night, prior to the start of the screening of Wonder, I am going to take a few minutes to share some of my thoughts from my own journey with you.

 

CLAPA Conference – 8 July 2017

Thank you very much to all those who came along to the CLAPA conference in London on Saturday – it was fantastic to meet you all, share my story with you, share stories together and to hear all of the other amazing speakers too!

Below are the PowerPoint slides from the day available for download for future reference. I have also included some transcripted portions of the speech which have been requested.

Photos credit: Ryan Trower Photography

Downloads:
PowerPoint Slides Handout

Transcripted Portions of Speech

On Parents

I have a great deal of respect and gratitude for my parents who put so much into providing the best for me. I was their first child, they had no idea that I was going to be born with a cleft, yet managed to quickly put aside their own shock and grief that they weren’t getting the perfect baby that they had imagined, and focussed on my welfare and loved me just as much.

They were on a steep learning curve, where information in 1991 was much more limited than it is now in the modern age of 3D scans and genetic testing etc. Not only did they have to very quickly skill themselves up on cleft lip and palate, they had to inform others too, who were not necessarily the most supportive.

We’ve never really discussed it, but I feel that my parents harbour some guilt, somehow feeling that they may be partially responsible for my being born with a cleft. I wish they wouldn’t feel guilt – I certainly do not blame them for anything, all that I ever knew as a child growing up was an environment of love and support.

 

On Becoming Responsible for My Own Treatment

In NZ, like here as far as I’m aware, once you turn 16, the ownership of healthcare changes from parents to patients. When I turned 16, it was no longer up to my parents as to whether I was going to receive further medical treatment, now it became my decision.

By the time I was 16, I just wanted everything to stop. And I think I somewhat naively thought that if I just ignore it, it will all go away.

So when I turned 16 and they asked me if I wanted orthognathic surgery in a couple of years time – what do you think I said? I said “no way”. 16 year olds have a lot on their minds at the best of times, and looking back on it, I just didn’t have the skills to make that decision – no one had counselled me and help me think through that decision – I didn’t really want to think beyond about next week at that point in my life.

Looking back on it now, that must have been so frustrating for my parents – they had done everything that they could for me over the years, fought my corner and now I was throwing it back in their face without realising what I was doing. I think in hindsight this is where having had some psychology input would have been so helpful as they could’ve spoken to me and realised that I had a lot of anxiety about further surgeries, as well as not really understanding what it was all about. So in 2007, I said no, and I held that stance for three years.

 

On the Emotional Journey

It’s funny, it’s only now as I’m this much older, that I’m finally able to look back and realise what an emotional journey as well as physical one it has been. Going back to the medical slide for a moment – this is the first presentation I’ve given that doesn’t have a “still to go” slide following this slide, and I’m wholeheartedly hoping I don’t ever have reason to put one back in! I am hoping to soon be finally discharged from the cleft clinic and free to get on with the rest of my life – a life I hope doesn’t require regular medical intervention!

And I want to talk about that concept for a minute, of being discharged and getting on with the rest of your life, because it’s a strange one. I was asked a couple of years ago whether I think people with incurable conditions are happier than those with a condition such as cleft which is treatable and who will one day be discharged and free. I’ve pondered this question for a long time and I don’t really know the answer, but what I will say is this.
If you know that one day the remedy is coming, you perhaps don’t always live in the present and I know this is true of me. Instead you look to this arbitrary time in the future instead and naively assume that everything will just fall into place for you. The health system reinforces this to you too and my message to any health professionals or aspiring health professionals would be to really focus not only on the future and the end result, but also on right now.

I’ve lost track of the number of times I’ve heard well intentioned phrases such as ‘after the surgery, you will look amazing’, ‘after the braces come off, your teeth will look normal’ etc. as they too were working to create Kenny 2.0 – the Kenny of the future, not Kenny as he was back then. Looking back, I am 26 now and in some respects I have achieved a lot for my age, and having a cleft has been a fundamental part of that, and I am proud of what I have achieved – I’ve been New Zealand’s youngest charity CEO, I have a speech therapy job that motivates me to get up in the morning, I have my own radio programme, I have educated many people on cleft. But, when I look back on my own time, there is also a lot that I haven’t achieved because I wasn’t living in the moment, a lot of what I did, I did in part because it gave me purpose when I couldn’t find purpose in the more age typical ways.

That list I just read out has one very obvious thing missing from it. Talking to girls/young women is terrifying – 6 or 7 years ago, there is no way I would’ve been able to stand up in front of a group of young women and speak – now I do it every year as I take the cleft portion of the speech therapy course in New Zealand and that just seems to be a very female dominated audience! I used to think “Why would anyone be interested in me?” – that is an unhelpful belief of inadequacy that stayed with me for years, and a belief that I am still dealing with the consequences of today as I slowly now realise that was a silly belief to hold and am now having to work much harder to build my confidence up and fix the situation that I created for myself. I’m frustrated with myself for believing that, because over the years, in different settings, I have met many incredible young women, who very quickly saw through the exterior and saw me for who I really am. How ignorant was I to think that it’s all about looks, it really isn’t. So, foolishly, my own self doubt caused me to miss the boat with dating. Robbed me of the confidence to ask the girl I liked in high school to the school ball, even though she would have said yes.

I’ve missed a few opportunities with incredible people with whom I share a lot of hopes, dreams and ambitions simply because I never asked the question, or asked when it was much too late. So, why didn’t I ask? That was because I would reason with myself, that there will be plenty of time once I am “cured” to go and meet people and that it will be easier as I will have that symmetrical balanced look that society tells us is a complete aphrodisiac. I know now that this was an incredibly unhelpful self belief and if I could turn back the clock I’d definitely do things differently, such as going and getting help for what I now know was so obviously a pretty significant anxiety disorder.

I’ve learnt that it’s far better to regret something that you have done than something that you didn’t do. Well, with there being a few exceptions to that rule of course.

I tell you all of this to stress the point that if you yourself or if you meet someone who seems happy to delay doing things that would lead to a higher quality of life if they did them right now until some indeterminate time in the future, then that is a real problem because that person has let the condition define them, at least at this moment of time. Life will pass you by if you don’t do things at the right time – let people know how you really feel about them, you only get so many trips around the sun, and you only live once.

It’s interesting, because the emotional journey is the journey that in New Zealand anyway, no-one supported me through in any official capacity. Through my role at Cleft NZ, I have supported many people through it, but I realised recently, no-one has ever really supported me through it. I always felt that I had to do something more than equal to be treated as an equal – it’s the same for any minority.

I have spoken to literally hundreds of people over the years at various stages of the journey. I have always endeavoured to provide people with reassurance but never bend the truth or make any promises. I was surprised in 2015 when a new parent to our organisation in New Zealand had watched a couple of my talks online and said to me “but you’re not like most people. You’re a strong, confident young man. My son might not find it as easy as you.”

It was at this moment, that I realised that I clearly had not shared enough of myself up until that point. We are all shaped by our experiences, and I am certainly no exception to that. This has not been at all easy, and talking about this and writing about this isn’t all that easy either. Feelings are a topic that are bandied around a lot nowadays, and people get very scared when people start talking about feelings. Well, like all of you, I am human and I experience the same range of emotions that you all go through. Yes, I have got up year after year and provided words of encouragement to people who are on this journey, words which I continue to stand by, but I am not going to stand up here and pretend that it’s all rosy. In fact, the last year of my journey with rhinoplasty and the recovery has brought the fact that I was born with a cleft to the forefront of my consciousness everyday with no way that I can ignore it if I tried.

I am not going to pretend that I
would not have preferred to not have to go through this experience and I am not going to pretend that from time to time I don’t grieve for the other life that I would have lived if things had been different. These feelings are not unusual, are not to be ashamed of, we all have had them – just as everyone who is human has.
Yet we don’t talk about this as it is seen as a sign of weakness. Yet to me, expressing feeling and emotion is a sign of strength.

Sure, if I had my time over again and was at the point in foetal development and I had a choice to make as to whether to develop a cleft or develop ‘normally’ – whatever ‘normal’ is besides a setting on a washing machine – I would pick the latter, as I’m sure most if not all of you would. However, I don’t get that choice, and I accept that. I never will have that other life that I grieve for from time to time. So I look at the life that I’ve got, and how to make the most of this one as it is the only one I’ve got, and there is a lot that is good about it. Had I not developed a cleft in utero, I most certainly wouldn’t be standing here proudly in front of you today as a result of the skills that I have developed along the way, I wouldn’t be a speech language therapist, or a radio presenter either – if I’d been that normal setting on the washing machine I doubt this would’ve happened for me. And it really does go to show that there is little you can’t do if you put your mind to it.

Smile, demonstrate love, compassion and be kind, for everyone you meet is fighting a great battle and remember that we are all far more similar than we ever will be different.

 

What others are saying about this

Face Equality Day – Disfigurement in the UK Report & a New Zealand Perspective

Friday 26 May 2017 saw the United Kingdom launch it’s first ever Face Equality Day, the result of lots of very hard work and campaigning by UK organisation Changing Faces which coincided with the 25 year anniversary of their launch.

As someone who has grown up with cleft lip and palate and faced the sometimes harsh realities of wearing my condition on my face, I am so pleased to see such widespread, and mainstream support for Face Equality Day. After having had years of feeling like the general public often just don’t understand, it is heartwarming to see that our story is finally being told to, comprehended and understood by the general public. Like Changing Faces, here in New Zealand, I, and the teams before me and since at Cleft New Zealand, have worked very passionately to challenge the perception of people with facial differences. #FaceEquality trended on Twitter in the UK – to the best of my knowledge, that is the first time in history that our cause has ever gained such widespread momentum and support on social media.

The day also saw Changing Faces release a research publication titled “Disfigurement in the UK” – available for download freely and in its entirety here: https://www.changingfaces.org.uk/wp-content/uploads/2017/05/DITUK.pdf – it is well worth reading. People affected by a facial condition will find themselves nodding along in agreement with so many of the findings, while for people who have not experienced life with a facial difference, you are likely to be surprised by some of the findings.

I wanted to highlight a few points from the report, and provide my own commentary.

Disfigurement in the UK tells a depressing story but one that must be told. It highlights the way in which British society – which many would argue is more equal and more fair than ever before – needs to urgently address the way in which it treats people who look different, for whom there is extreme inequality and unfairness. It shows that disfigurement has been left behind in the equality stakes; disfigurement prejudice is still far higher than prejudice based on ethnicity or gender.

I am so pleased to see research evidence (further detailed in the report) to finally support this. This is something that I have felt to be true for years. Whilst I definitely agree that our societies both in NZ and the UK are more equal than ever before, disfigurement and disability is falling way behind in the equality movement. I have often said “people with differences and disabilities are the largest and most under-represented minority”. There is a lot of excellent, very important work going into reducing prejudice based on ethnicity and gender (work which I have vocally and wholeheartedly supported over the years – reading this post might help you to understand why), and awareness of gender inequality and racial inequality as well as a movement to change this has been steadily growing for years. We haven’t seen the same support for people who are discriminated against, often just as harshly, if not more so, for looking different. Of course, like with gender inequality, many people are not knowingly discriminating, but I would love to see more research into unconscious bias as my gut instinct is that this is as prevalent for people with facial differences as it is for women – a group who we know are significantly disadvantaged by factors of unconscious bias.

Disfigurement in the UK speaks to a nation that needs to change. Not to any particular sector or agency or company, but to the wider society where it remains at best tolerated and at worst accepted that people who look different should be treated unfairly or unequally. To correct these injustices will take commitment and action at the highest level of government, but also requires action from every one of us in British society to recognise how we are all bystanders to this inequality, and to commit to ending it.

This comment speaks to New Zealand too. We need your (the general public’s) support on this one – standing up to oppression is incredibly tiresome. We are great advocates for ourselves, but we cannot change everyone’s attitudes by ourselves. The sooner that the public stands loudly and proudly with us and demands an end to this form of discrimination and inequality, the better off our entire society will be.

School is a hard time for all children. This chart highlights the inaction of schools with regard to dealing with bullying, and I think is a sad indictment, and I fear that New Zealand’s chart would look even worse, given that our bullying statistics are markedly worse than that of the UK. There are two alarming issues here – firstly that people are not feeling empowered to report instances of bullying, and secondly that when bullying is reported, it is largely going unresolved. Sadly, we tell our young people with facial differences to anticipate that bullying may well occur, and although we do our utmost to empower them with the tools to deal with it, we need to make a more concerted effort as a nation to stop it from happening in the first place.

Beyond the stage of the job interview, and once into a new role, things don’t appear to get much better. 62.9% said that their appearance had been mentioned by work colleagues, and 26.2% – more than a quarter – have experienced discrimination from colleagues at the same rank or level of employment. Almost a fifth (17.8%) report experiencing discrimination or unfairness from their manager.

Workplace bullying is rife in New Zealand – in fact, it is identified as the largest occupational hazard in our workplaces, and studies have found that we consistently perform worse than both the UK and Australia. I consider myself very fortunate that to date in my career, I do not feel that I have experienced discrimination from my colleagues or managers as a result of looking different – in fact, I feel that I work with people who just see me for who I am. That being said, my condition has definitely influenced where I have chosen to work – I have picked a career where I feel I will face less discrimination, and even within that setting, I feel that I have to work much harder to make a positive first impression in new situations, anyone who finds themselves in a minority situation will know that you have to do something more than equal before you perceive that you will be treated as equal.

More than four-fifths (81.3%) of respondents have experienced staring, comments or unpleasantness from a stranger. Experiencing such unpleasantness which counts as harassment in law, can have a serious impact on someone’s confidence in social situations. We asked respondents if they had ever decided not to visit a specific venue because of how people might react to their appearance. More than half (53.9%) had avoided a nightclub visit, 46.5% a pub, 41.3% a gym, 30.6% a café or restaurant, 28.1% a shop, and 20.7% had avoided a theatre trip. More than a third (36.1%) have experienced unpleasant comments from people in parks and open spaces.

I am pleased to say this has decreased for me in recent years, but I put that down to the fact that my appearance has changed significantly with surgery and orthodontic work, as well as the people with whom I choose to spend my time (if I choose to spend my time with you, I hope you smile as you read this – I think you’re a good person), rather than a marked change in societal attitudes. Looking back now, I know that I had a lot of anxiety about going to clubs and pubs and so I didn’t do this when I should have. I worried I might experience an upsetting verbal or physical altercation, so I avoided the situation entirely. I feel that I missed out by doing that. The introduction of self service checkouts in my late teens were a godsend where I could go to a machine without fearing that glance from a checkout operator that lasted a little bit too long, or going red from embarrassment thinking that I did not deserve to be in the presence of people who I felt were better-looking than me (I’m pleased to say now that I will happily walk up to the checkout operator, and even chat with them if I’m feeling in the mood)! One Saturday in my teens I was walking to work when a glass bottle was thrown at me, shattering at my feet from a passing car as the occupant (unknown to me) was shouting “what the f**k happened to your face?”

“I have been threatened with a knife because of ‘my face’.”

This is not my quote. But it definitely could be. When I was in my late teens, me and my family stopped for lunch in the town of Waimate, New Zealand on a holiday. Before getting back in the car, I wandered away from my family to use the public toilet down the street. As I came out of the toilet, I was accosted by two teenage women and a teenage boy. One of the women had a knife and “offered” to cut off my nose. Fortunately my father (unaware of what was ensuing at the time) called me over at that point from the car, and the teenagers wandered away.

The psychological impact of living with a disfigurement cannot be overestimated. As every section of this report shows, it can have a devastating impact on almost all aspects of a person’s life. We asked respondents on a scale of 1 to 10 how much impact they felt their condition had on their life, and whilst the average was 5.5 – in the middle of the range – 42% of respondents said it had a severe or very severe impact.

Psychological implications of being born with cleft lip and palate I feel are largely overlooked in New Zealand. With the exception of Auckland, a psychologist does not even form part of the cleft lip and palate team – something which I feel is a significant oversight. International best practice outlines the importance of having psychology input on a team and something that I have lobbied for since I started in the General Manager position at Cleft NZ in 2012. We need to continue lobbying Ministry of Health for increased psychological support across many areas of healthcare.

The Good News

Raising these issues with quantifiable evidence is a huge step forward, and although the report may be a sobering read, it is a platform for discussion that will lead to change. For the vast majority of the general public, discrimination based on appearance is something that they don’t have to think about. It does not mean that they do not care about it though, and I believe that this publication and its recommendations by Changing Faces (along with lots of fantastic other research going on at the moment such as that done the Cleft Collective, Centre for Appearance Research and the University of Auckland here in New Zealand) will improve quality of life for people affected by a facial difference both now and into the future.

For years, I have passionately encouraged members of the cleft lip and palate community in New Zealand, and around the world “Don’t let the world change your smile, let your smile change the world“, and I believe that is something that with strength can be and always has been very achievable by each and every one of us. Today, thanks to the hard work of Changing Faces and all of its many supporters and supporting organisations, we have made that reality so much easier for so many more people.

2017 CLAPA Adults Conference

This week is UK Cleft Lip & Palate Awareness Week. Twenty-something years ago on this awareness week, I was one of the 1200 babies born annually in the UK with a cleft – my parents didn’t find out until the moment I was born.

When I was 12 years old, my surgeon told me “You’ll be able to speak, but you won’t be able to make a career out of public speaking.”

In July this year, it will be a great honour and privilege to present at the 2017 CLAPA Adults Conference in London – what will be a very honest and personal insight into my life growing up in the UK & NZ with cleft.

All those years ago, my parents had the same question every new parent of a child with a disability has – “Will my child live a happy and fulfilled life?” I hope I have proven to my parents, and that I can prove to any parents, professionals and young people growing up in the audience, that although there are significant challenges, hard decisions, and tears along the way, with love, support and sheer determination, the answer can be a resounding yes.

Don’t let the world change your smile, let your smile change the world.

Conference info and tickets: https://www.eventbrite.co.uk/e/clapa-adults-conference-tickets-34064110672

“Not every day is good, but there is some good in every day.” 2016: A Year in Review

2016. It’s been an extraordinary year. It’s a year that historians will talk about for decades to come, for better or for worse. Here we are, at the end of this fascinating year, which means it is time for yet another year in review open letter to you all. Life is unpredictable, we like to plan, and love to think that we have a huge degree of certainty and control over what happens to us, but the reality is that sometimes this is out of our hands, and the thing that we have control over is how we deal with what we are faced with, rather than getting to choose what we face. 2016 has not been uneventful – a number of big life events find themselves etched into the 2016 calendar – some of them being very exciting, incredible experiences, others required some very important decision making, whilst others gave rise to some of the most challenging days I have faced in my 25 and a half years.

Usually, I start my year in review with a reflection on various goals that I had set myself at the beginning of the year, but the reality is that the year moved so fast, that the goals I set myself at the start of the year soon became eclipsed by other things and the goal posts were changed, so instead let’s break it down into a few categories.

Work & Radio Life
2016 started with a pretty big development – the start of full time employment. I have been no stranger to working, but settling down to one main role was going to be rather strange after being used to having 2-3 things on the go at any one time. I absolutely enjoy what I do, and the opportunity to work full time for TalkLink after having spent 3 years there part-time was amazing, and one which I am grateful for every week. Like everyone, I enjoy my weekends and holidays, but at the same time, getting up on Mondays has never been easier. I enjoy what I do, feel valued for what I do, and get to work with people who have vision, passion and can get the job done with a light-heart.

Of course, I was naive to think I would settle down into just one thing though – my radio work on the side is busier now than it’s ever been before, and I’m being invited to present speeches on a wider variety of topics than in previous years, but I think I’ve found a balance that works well for me, and feel grateful that the various organisations that I am involved with all support the work I do with the other ones and give me the flexibility to keep my fingers in a few pies.

I’ve also really enjoyed working on radio this year, and having had a platform to openly discuss topics that get very little airtime, and having the opportunity to interview some very interesting people on all sorts of topics. In fact, looking back on the year of programmes, I am proud to have been able to provoke conversations on these hard topics. Radio is always an interesting medium as you don’t know at the time whether you’re speaking to one person or 10,000 people, and whether what you’re doing is resonating with others. It turned out it was, and in a big way. First of all was the shift from the tiring 9pm shift to the lively 8am breakfast programme in September. Then, one of the hardest decisions I faced this year, was in November when completely out of the blue, I was contacted and offered a full time position with Radio New Zealand in Wellington as a Political Broadcaster reporting from the Beehive. Tempting as it was, it would be a complete change of career – the conversion of a hobby into a career, and I am already on the career path in healthcare that I want to be on at this stage of my life, and my life is in Christchurch. Reporting on politics everyday would likely frustrate me and make me quite cynical – perhaps one day, I will enter politics, but I have nothing to announce there for the foreseeable future. Nevertheless I am honoured to have been presented with the opportunity.

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Home Life
As well as the excitement of starting my career this year, came the task of finding my more permanent living situation. I had had a couple of flatting experiences – one which was brilliant (2014), and one (2011) which, like U2, I found myself stuck in a moment you can’t get out of with an abusive flat mate which still sends shivers down my spine when I think about her all these years later. Therefore, after experiencing both ends of the spectrum, I was becoming really particular in what my living situation would look like. I began looking at places to rent and people to live with, but was never particularly impressed with anything that I would find – places that were nice were unaffordable, whilst places that were affordable were pretty miserable or looked nice in the daytime but took on a different character when I’d drive past at night. Feeling a bit despondent, I thought I’d just have a quick look at TradeMe and see what’s available under the “For Sale” category. The first one that I added to the watchlist is the one I’m living in now. I had a look at the place, fell in love with it, but couldn’t possibly afford the mortgage on what they were asking for it. I bided my time, looked at a couple of other places for comparison, and eventually managed to negotiate a price with the vendor that would see me take the scary leap into home ownership in late June. Having been here for six months now, I know that I am home.

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Twelfth Month, Twelfth Op – Continuing the Cleft Journey
In the back of my mind for the last two years, I’ve known that a day would eventually come where once again, I’d have to stop my act of being a normal citizen doing normal everyday things and return to the hospital for what would hopefully be the final time for the twelfth cleft related surgery. Thursday 1 December 2016 was to be that day. It’s a hard experience to relay to most people, as most people don’t embark on this journey, and despite their best intentions, often don’t understand. People will ask you questions that you don’t know the answers to and will use phrases such as “it’s amazing what they can do” which always strikes me as a weird thing to say. If I had any doubt that they knew what to do, I wouldn’t be letting them near me. There’s a whole lot more that is going on in my head – it’s a lot to process. What is it going to involve? What are the risks? What will I look like? What will my longer term eating, breathing and speech be like? What complications could there be? It’s not a routine procedure, and not reversible, so to some extent it is a gamble. I don’t gamble with my money, so doing a risk-benefit analysis on something as important as my health is huge. People will often tell you there’s nothing you can do about it, so there’s no point in worrying, and to an extent this is true. But until such time as I have been given all the information I can be given, then I don’t feel I can make a fully informed decision, and owe it to myself to ask those questions until they can be answered. As it turned out, many of those questions, couldn’t be answered until after the operation was done as no-one quite anticipated what they’d be dealing with in what would turn out to be the lengthiest of the twelve surgeries.

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Since then, slowly things have started to improve in the three and a half weeks that have followed, although it certainly can be two steps forward, one step back.

Sunday 4th of December was a particularly difficult day with my own mortality making itself known, when my stomach began haemorrhaging blood for about 48 hours before it eventually began responding to treatment. In all my surgeries, this was the first time that I’d experienced such a reaction and wound up in the Emergency Department scared about what was happening. I said to a nurse in E.D. “Is it serious? I’m feeling scared.” and rather than re-assuring me, she gave her honest response, “Yes, I can see why [you’d be scared], I would be too.” When I asked her, “Am I going to be okay?”, she paused and said “We will do all that we can.” Thankfully, they were able to diagnose the source of the problem quickly and begin treatment that slowed and eventually stopped the bleeding. Never again will I take being well for granted.

The biggest thing that people can do for me at the moment, is to be patient. Realise that just because I start doing some things again, it doesn’t mean I’m back to normal – I’m not, and won’t be for a while longer yet, but with rest, support and understanding, we can keep things moving in the right direction. Sure, it’s been frustrating having a Christmas season without the normal Christmas food and drink fare, but that is part of a short term sacrifice for a longer term gain, and it’s amazing what you can get on with and make work when you have no other choice! I’m looking forward to a few months from now when things will hopefully have settled right down and I can look back on these times and appreciate them for the character-building challenge that they are. In the meantime until I’m back doing all the things that I usually do, just follow my lead and share in the small victories! Thanks to all those who have shown their support during this difficult time – we’ve been here a couple of times in recent years, I really hope this is the last, and that in 2017 I can begin living the first days of the rest of my life with my own cleft journey being part of my past rather than present.

 

Looking ahead to 2017? 2017 is going to be a fascinating year internationally, as we see a Donald Trump presidency, a divided United Kingdom initiate a painful divorce from the European Union and a general election here in New Zealand. It’s too early to know the impacts that these will have on us yet, but hopefully the world will continue to work towards better co-operation and the realisation that humans are all more similar than we will be different.

As for me, I look to 2017 with enthusiasm. I look forward to continuing to recover and finally unveil the new me, with the corrections having been made from a seemingly tiny blip in development in utero 26 years ago that has had quite the snowball effect. I also am very excited to see more of the world in 2017, exploring Europe and Canada, and 2017 has got to be the year where I’ll finally meet that woman who will make me struggle to imagine life without her.

As the sun sets on 2016, I’d like to say thank you for being a part of it. We only get so many trips around the sun, so let’s make the most of every one.

Happy New Year.

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The sun sets at Punakaiki, West Coast, New Zealand, 4 January 2016.

It Gets Better: Dealing with Discrimination, Bullying & Depression

Last year, as a result of my experiences working with Cleft New Zealand, as well as my own experiences growing up with cleft lip and palate, it became clear that my original seminar that I’ve been delivering for years “It Gets Better: Dealing with Bullying” was in need of an update to reflect the reality that bullying is not the only thing that people need strategies to deal with. Rather, people can be discriminated against without being bullied per say, and so I have added content about some of the more subtle forms of discrimination.

Fortunately in the world we live in today, we are starting to talk about mental health in a much more productive way. When I first started, mentioning the “d” word carried a very heavy stigma – people battling with depression were wrongly seen as weak, rather than seeing depression as a sign of having remained strong for longer than one realistically should be expected to. Despite these changes in attitude though, we still have a very long way to go when it comes to how we view mental health. Through my role at Cleft NZ, I have met many young people battling in silence with depression and anxiety, therefore, I have added some information on depression and strategies for dealing with it into the new and updated version of the “It Gets Better” seminar. Watch online now.