Cleft Lip and Palate News

“It was the best of times, it was the worst of times” 2014: A Year in Review

Well here we are at the end of another year. Ordinarily, this is the time for reflection and my annual ‘year in review’ open letter. Although, it is fair to say that 2014 has been a year that has already seen much reflection throughout the year.

No two years are ever the same, but 2014 was in many ways one that was significantly different. Dickens, in his novel A Tale of Two Cities famously coined the phrase It was the best of times, it was the worst of times. This is the sentiment I feel towards 2014. Undoubtedly 2014 has been my toughest year, making it the worst of times, but from the worst of times, there are displays of humanity and lifelong learnings in there which demonstrate some of the best of times.


Where we’ve come from in a year. 31 December 2013, Surfer’s Paradise, Australia.

There were three main goals for 2014 (well four, if you also include making it through year three of my degree, which I am pleased to have achieved) and these three goals were:

1) Begin to take my message to the global community. 2013 as my first full year as CEO of Cleft New Zealand was very successful; having an opportunity to be heavily involved in the introduction of many new services to New Zealand, and that is one of the many great things about New Zealand – one can be the country’s youngest charity CEO yet still be taken seriously and people out there will happily foster and supplement your enthusiasm. But alas, to make a real difference in the world, my work cannot stop at the New Zealand border. 2014 was the year to cross that border. I am very humbled that thousands of people so willingly streamed and beamed me into their homes, workplaces and laps (via a laptop that is) around the world to watch my Rabbits, Forklifts & Geodes, It Gets Better: Dealing with Bullying and Fente Palatine Labiale et Moi presentations. It was a truly fantastic experience to overcome geographical boundaries to enable access to information and across language barriers. Although I delivered presentations in English and French, I was honoured to be approached to give my permission for my work to be translated into Indonesian. In addition, the Bottles for Indonesia programme took a leap forward in late 2014 with the first shipment of bottles supplied with love from people all over the developed world arriving in Indonesia and being distributed to families in need in time for Christmas. I have been very humbled with how quickly and willingly people from all around the world have jumped behind this programme to donate whatever they can to help. Of course though, with every year that I continue to do this job, I realise how much more remains to be done before we achieve global co-operation and understanding. Despite being a mere spec of dust in the universe, Earth continues to harbour a lot of fear and hatred towards others who reside on this spec of dust, often without a great deal of empathy. In countries less developed than our own where resources are more scarce, fear often prevails with regard to disability, leading to abandonment or infanticide of children with disability or difference. Whilst it saddens me that I will never be able to provide the education needed to absolutely everyone who would benefit from it, I have vowed to make a start. Producing our bilingual video Dear Future Parents / Cher Les Futurs Parents and releasing it in November 2014 was a great step forward to show the local and international community that people born into situations of adversity can still go on to live very full and fulfilled lives. I am indebted to the people who worked on this project with me to make it happen. Of course, in among all these international projects, my main focus has continued to be to serve the people of New Zealand, and it has been a true privilege to continue to do so this year and to have the opportunity to have met many new faces and to have been invited to many fabulous venues with wonderful people around the country over the year to give presentations – to everyone who made this happen, thank you.

My second and third goals were ones that were not such public knowledge as they were much more personal goals than career goals, and whilst there is plenty of information available on my professional life (Google and Wikipedia seem to be able to even tell me stuff about my own career these days), and although some harsher radio hosts may even describe me on their programme as a ‘left-wing antagonising activist’ because of the ideals I work towards in my professional life and my preparedness to challenge anyone who seeks to benefit from the exploitation of others, my personal goals would probably not be seen to be particularly controversial by anyone.

2) To get through my biggest surgery of my life and begin to return to good health. August 11 2014 was “the day you [I] have been leading up to since before you were [I was] even born”. Here is what that day was all about. In many ways, I am not the one who is really responsible for the attainment of this goal. In fact, I began to realise that early in the year, that this portion of my life, this very significant life event with implications that were bigger for me than for anyone else on the planet, was one that I would have very little power over. I believe in an internal locus of control – I do believe that people can exercise a good degree of power over their own life within the resources and constraints that circumstances permit. This however was one such event that had an external locus of control – that being the NZ state health system. My ability to influence this was completely limited by external factors and I felt incredibly disempowered at times. One would be given dates, you would attempt to regain some control by organising your life around this and then circumstances would change and the date would change yet again. That being said, I owe a heck of a lot to my medical and health team at Christchurch Hospital who I hope are proud of what they have achieved with me this year, because I am proud of what they have managed to do for me; thank you.

The administration aside, after a lot of frustration and heartache, August 11 happened, and the burden of the unknown of waiting for it all to happen so I could get on with life changed to one of the unknown of when things will be nearing normality again. I have not had a burger in almost five months nor a subway sandwich, and a steak is still a good 12 months away. I lost 8kg at a time when many would argue that I didn’t have 8 kilos to lose and in the four and a half months that have followed have managed to put 3kg back on (although with the festive season upon us, who knows how quickly that weight could shoot back up!) Furthermore, nobody really understood. People made many empathetic utterances and gestures which showed an attempt at understanding, but often embedded within the utterances and gestures was the clear fact that they had not really understood at all. And one cannot expect them to, for they have not been through it themselves, in the same way that I cannot truly understand how someone going through something which I have not experienced for myself is feeling. I struggled to understand for myself – it was the first time in my life where I really had to acknowledge that there can be a significant disparity between physical and emotional well-being. I appreciated the effort though, as although it was (and continues to be) a time of feeling desperately isolated and alone, there was one thing that many people knew how to be without fail – a friend, and they know who they are. Sadly, there were also others who did not, and I think they probably know who they are too, and all that I ask of them now is for them to think what I would have done had it been them in my shoes. And if they really want to put it right, a great place to start is to lose the excuses. We all stuff up from time to time. The first step though is to unreservedly acknowledge that one has stuffed up. So although goal two is far more multi-faceted than I had predicted it would be, when we look at the objective goal that I set, I think we can tick it off the list.


Christchurch Hospital, 11 August 2014

3) Find that special lady. 2014 started out full of promise to achieving this goal. In fact, within the first 10 minutes of 2014, under moonlight and fireworks on Surfers Paradise beach in Australia, I was having my first kiss of 2014 with a lovely Australian lass. Setting out as I meant to continue presumably. What I didn’t bank on was the fact that this kiss which I had whilst the majority of the world was still in 2013 would also turn out to be the last kiss of 2014. Some people have lost money on this goal sadly. People were quite literally putting money on 2014 being the year that Kenny Ardouin brings a +1 to dinner and is required to buy a double bed. Alas it has not happened yet. But as Meat Loaf famously said 2 out of 3 ain’t bad. Good things take time (such as finding out what ‘that’ is when Meat Loaf says I will do anything for love but I won’t do that).


Surfers Paradise, January 2014

Although not technically a goal of 2014, one thing that I must acknowledge is the amazing flatting experience that I was fortunate enough to have in 2014. I have had the privilege of living with some of the most amazing people on the planet, and am sad that due to external circumstance, we will not be continuing our tenancy together in 2015. That being said, I am confident that living together will not be necessary to maintain the friendship formed this year.

So, what about 2015? 2015 is looking bright. I see it as the year to complete a number of key life ambitions. Firstly, here’s hoping my next operation in 2015 will be my last and that I finally receive that pink discharge paperwork from the Cleft Clinic after what will have been more than 24 years by that point. My second goal involves pink too – the colour of my degree which I hope to complete in 2015. My third goal is to continue to improve educative support to developing nations, ensuring that geography, poverty and politics pose no barrier to access to medical support, information and expertise. As for my future girlfriend – I sincerely hope that 2015 is the year that I find out your name and get to wrap my arms around you.


2015 – Time to soar.

As for you? As you slide down the banister of life in 2015 and beyond, may all the splinters be facing in the right direction. Happy New Year.

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