Cleft Lip and Palate News

“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.

image

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.

image

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.

image

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.

image

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

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.