The Marfling herself

I thought it was fitting to make my first post about me in case you are reading this and don’t know me. I also think there is more to me than many people know…

My name is Keira, and I am 22 years old. I was born and bred in the UK, and moved to the beautiful country of New Zealand in 2005, at the awkward age of 13. I am passionate, love people, and try to see the good in all things.

I decided to start this blog as many significant life events have occurred recently, and I love writing. Please bear with me though, I have never blogged before, I completely suck at proof reading, I can’t spell, and I really don’t know what I am doing! This post may be a little long, so grab a coffee if you haven’t got one already!

My life is currently in a massive period of change. As corny as it may sound, I believe that life is an adventure, and my adventure is just about to take an entirely new path!

I have just graduated from the University of Auckland after four years of studying a Bachelor of Health Sciences. I have recently got engaged to my wonderful fiancé, Elliot, and couldn’t be happier. I have also just come out of a large surgical part of my life, where I have spent near on 12 months as a hospital inpatient, and many more as an outpatient since 2011. This is because I am a Marfling, meaning I have a condition called Marfan Syndrome. And, for the icing on the cake, I am about to pack up my life into one suitcase and move back to the other side of the world.

So there you have it. The Moving Marfling.

Also in this period of life change, I am taking a step back and trying to re-evaluate myself. I have learnt over the years that my medical condition does not define me, yet I have learnt to accept that having Marfan Syndrome is very much a part of me.

I decided to share my story a while back, in order to try and inspire other people living with chronic conditions that life is worth living. If you haven’t already seen it, my amazingly talented friend Rachel Walker, made this clip for her final project at university. It is quite a good summary of my journey of the last few years, and since then I have had 2 more surgeries.

So sharing my story took a lot of courage. Up until needing emergency open-heart surgery, many of my closest friends had no idea that I was sick. Many knew I could break bones easily, and some knew that I was a Marfling, but had no idea what this meant. I mean the surgery was a surprise for me, let alone any one else. In sharing my story, I have been able to help people, and this has been a life-changing experience for me.

On the other hand, I have found that now my story is public, and I’ve had so many months spent as an inpatient I have become the “sick friend.” When I’m introduced to new people I often am greeted with “Oh, you’re the girl who has been in hospital” or “You’re the girl who was in the magazine.”

I spent many hours thinking how I could change this, and how I could make the world forget that I had Marfan. I wanted to be known for being me, and not for being sick. This was until I realised that I was passionate about helping other people, and that having Marfan gave me the experience, and empathy to do this.

I then realised I actually want to study and research Marfan to benefit the rest of the growing Marfan community. I think that was when I recognised that being a Marfling is going to always be a part of me, and it is my responsibility to live my life outside of that. I think eventually this will come with time, and not being a frequent patient like recent years.

By sharing my story, I also felt that I had to fulfill this happy positive image that I portrayed, especially on social media. And don’t get me wrong, many awesome things have happened during the past few years, and I am extremely blessed to have the best support crew. Unfortunately though, always being known as happy led to a downward spiral of mental health issues that I kept to myself for many years. I felt as if I could not keep up with this image that I had accidentally created. The external me was a person who I felt I needed to be as I wanted to protect people from seeing how I really felt. I have very recently learnt the fact that sometimes it is ok to not be ok. I know that sounds cheesy, but it is one of the most important things I have learnt in life. From here, I am learning to accept how I am feeling in order to be able to deal with it and move on.

Another important lesson I have recently come across which is shaping my personality, is learning not to take on other people’s opinions. In order to live my life to the full, I need to be me without the worry of what other people think.

I am a Christian, and by that I mean I am a follower of Christ. I don’t always associate with being a “Christian”, and that is not because I am ashamed, but because it comes with prejudice; people assume that I am judgemental and assume that I think that I am right. This is the very reason that I keep this to myself.

In the past few months I have really struggled with going to church, mainly because of the judgement from other people. I have recently moved in with my fiancé to save money for our next chapter of our lives, and suddenly been overwhelmed with the judgemental comments from people within church circles for being a “bad person” and “pulling my fiancé away from God.” I have had all sorts of comments, and the best one was that we are “not fulfilling the image of being a Christian.” This comment sums up exactly how I feel- I am not fulfilling an image for a reason… I think that this “image” that society has created should not matter. After all, it is my life, and my relationship with both Elliot and God, and not for anyone else to make judgement about.

And the judgement doesn’t stop with my relationship; having a chronic illness is another ball game completely. Some people tell me if I had more faith I would have been healed by now… and there are a tonne of other apathetic examples I could give you.

I think that half of the judgement is actually done not consciously, and that people get so wrapped up in positions within a church that they suddenly feel the power to make a call. Saying this, we have had some very supportive friends too. My personal aim in life is to love like Jesus did, and to love EVERYONE in a non-judgemental way no matter what. Yes this is hard, and yes I make mistakes, and stuff up, but I am only human, and saved by grace. I don’t believe any person has the right to judge another, and I am LEARNING (and this is an ongoing process) to try and ignore the comments and continue living my life out of love. And while I do not always have answers, I can firmly say without my faith I would not be here today. Throughout my bumpy ride, I have been blessed with the support, and everything that I need to have made it to the other side, and my hope will continue to sustain me through life.

So there you have it. The first set of musings about my life from the many thoughts that swamp my brain every day. As my life journey continues there will inevitably be more bumps and mountains to climb along the way. I am in this period of change, but it is a good period and I am excited to see what the next chapter brings for me.

Until next time…

Keira xo