Monday, 28 July 2014

Why Blog? That is the Question

I was reading Carly Findlay's blog when something flashed upon my mind. That girl likes to blog. And she covers so many topics. She knows no limits and it's clear that if blogging paid well enough, she'd probably be one to give up the day job to focus solely on that. And what a journey that would be!

But then looking at myself, I found myself thinking to myself as I gulp a bottle of water and eat instant noodles for lunch, I end up thinking, well, why DO I blog?! Well here's why. 

I find that my ideas come alive on paper. Sometimes I struggle to verbalise my thoughts. It's as if I've suddenly become mute and only say things which would please others. I find that putting my thoughts down in writing helps me verbalise what's going on in my crazy mind and writing it down makes everything make sense. Do you understand? 

How does my writing differ from others in it’s genre?

My kind of writing differs from other in that what I write is very very personal to me and it's a bit like a journal to me. I have the ability to write what I want, more of less without boundaries. And that reflects me in a way, I like to try and live on my terms. I like to be able to write witty remarks and poke fun at things, examine my life and see the beauty of seeing my own writing being seen by others. 

What can I bring through blogging?:

The fact of the matter is, apart from having the odd appearance of a sunburnt strawberry, I'd like to think I bring humour and good vibes to people. But all things serious, I am one of few in the world with Harlequin Ichthyosis and indeed Ichthyosis and in the top generation of sufferers with Harlequin. I'd like to think I bring an optimism to others. To bring hope to those struggling with the what ifs, I hope that through my blogging, I can bring comfort to others that while having a skin disorder, life doesn't have to stop there. I want to show that you can reach for the stars and the sky is the limit. I hope to inject humour into something that let's be honest, isn't really humorous to begin with. 

My ideal readers are:

People affected by Ichthyosis, sufferers and carers,

People who are bored and fancy reading something interesting,

People who want to take life lessons from a somewhat naive 21 year old,

People who are in search of new blogs to read and follow

Blogging will make me feel:

Blogging makes me feel at ease, there's something about blogging that's strangely comforting to me. The idea that I can reach out to people and hopefully pass on a little of what my parents have been teaching me. Blogging makes me feel like I can be me, I no longer have to hide behind a facade anymore. To make me feel more at ease about having a skin disorder which will stay with me for keeps.

What am I working on?

I'm working on fresh material all the time. Whether it's about life, Hong Kong, Ichthyosis or my rugby refereeing. I constantly have ideas on the go. One day i'd like to be paid for my thoughts!!

Why do I write what I do?

Why indeed.  I feel inclined to write about myself because that's the best way to write. I couldn't possibly write about anyone else because I don't know them. I don't know how their mind works. And vice versa.  I hope that with my writing, I don't offend people with my blunt attitude towards things. I write about life in a way that I hope others will benefit in some shape or form. I write about things that others may not be comfortable writing or talking about. I understand that sometimes I write things and I come accross as a cruel and uncaring person who basically tells people to shut up and deal with the cards they've been dealt with. I don't ever mean to come across as that way. I was raised to be a caring individual by MamaRef and PapaRef and I know sometimes that doesn't shine through. But I hope in time, that obnoxious curse will be broken and things will bubble along nicely. 

I write about my life because I want to break the stigma of those who have disability and feel that society is against them. And for someone who was born in somewhat harsh and difficult circumstances, and then was picked up by Mama and PapaRef who have always egged me one and told me to persevere and give things a go, I feel like I'm in a position to say that I'm living proof that you can push through barriers and live a somewhat happy if not chaotic and fulfilling life. I mean I have to thank my parents for helping me get to where I am today. I certainly didn't do this all on my own, I mean my views may be my own, but my gung-Ho attitude and willingness to give life a go, all comes from MamaRef and PapaRef. To this I am so grateful. 

How does my writing process work?

My writing process is somewhat flimsy in that I do not have a specific writing schedule. I write when I feel like it and more often than not, most of my work is done on my commutes to work. I use my iPhone to type out my posts and sometimes I use the iPad to continue things if I get fed up of squinting at the ridiculously small keyboard being trampled over by my fat muscular fingers. I also write late at night if I can't sleep. The thing I love about blogging is that I can choose when I write and there are no deadlines. There are times when I have terrible bloggers block and won't write for a few days, but there are also times when I'm on a roll and can write a whole post in an hour. If i am able to summon up the courage, I look to people to help me do a Q&A session and I hope I can do more of those. 

I don't tend to write during work hours just because I don't have the time nor energy capacity to even spill out a sentence. That being said, my blogging is something that's a past time and something to be done in my own time. But anecdotes about work and rugby always pop up! 

I tend to draw material from my life on Facebook and Instagram. I may not always mange to churn out a long blog, but I love keeping people in the loop through my twitter, Instagram and Facebook. I depict my adventures in photos, blogs, memes and more. This being said, I have always kept those mediums relatively seperate, so that friends and followers get something's new and unique wherever they look. But this IchthyRef blog is wired through Facebook, Google and Twitter so people are always able to find their way here. 

I wrote this after reading Carly's post  and decided to take part in this little blogging exercise. I hope this has worked well! 

The IchthyRef xxx

Sunday, 27 July 2014

Am I Scared?! No Duh!!!

Many people see me, they see a woman (nearly wrote girl there...!) who stands out from the crowd. And by stands out, I do not mean the likes of Cara Delevigne or Robbie Williams (though both are wicked human beings, let's be fair!) I stand out because I have a skin disorder. And believe me I wish and pray to god I didn't have it sometimes. It's scary sometimes, leaving the comforts of the family home in the mornings to make the long trip to work. I open myself up to stares, taunts and it scares me, knowing that today could be the day some unwitting person sends me on a further downward spiral, alienating myself from such an unforgiving environment that is The World, it's not only Hong Kong or Mainland China, I'm talking the World. I don't know how some days I manage to block the shit out, but some days, I'm filled with such anger and sadness that it builds up and escalates into something more. 

Like many people with Ichthyosis, our lives consist of struggling to get society to accept us, to understand that beauty is skin deep but there is so much more to our lives than just an appearance in which skin sheds, we look permanently sun burnt and as a result, we have to work extra hard to get people OUTSIDE our close circle to understand that we have dreams and aspirations too. We are not thick people just because we look different. I know this well because aside from Ichthyosis, I have a few friends in Hong Kong who face the wrath of society, just trying to get by on life while dealing with physical disabilities. If anything, society, especially where I live, society could learn a thing or two from the people they so happily shun     away since they are probably the nicest people on the planet who are just screaming for people to take them in their arms and work on that little thing called Inclusion. 

Am I scared of what the future holds for me? Both in society and in life? Yes, I'm terrified and sometimes I turn to Facebook which isn't the wisest idea at times, but it helps me try to decipher what I have or I could have. 

Occasionally I write on Facebook about people who have hurt me that day and I receive a ribbon of support from people telling me to keep me chin up and to keep fighting through because they know I am capable of doing so. I have a lovely friend who has unfortunately left for Down Under...(I like kangaroos and koalas!). But she reads my posts a few times and offers sage advice but something she pointed out made me think she truly understood. When people post negative comments, it's customary to get a barrage of support. But in essence, she said this, I hope you don't mind Kaye!

"Easy to make supportive comments, but basically it sucks and you are one of the most amazing people I know ... Don't know if I could do what you do. Lots of love & hugs ... And a few tears. Ga yauh!!! " 

It's easy for people to say things like "chin up" and "don't let people get to you" but the fact of the matter is, that it does and people often don't realise, and I am equally guilty as sin. But what people who offend don't realise, they make their comments without realising that the other person is already scarily fragile and that comment, may sometimes be the final straw and the other person just crumbles. And unfortunately, people who give love and support can't really offer anything but words because especially in my case, chances are, my lot would go up to the offending person and basically scare them shitless. Let me give you a little anecdote from a night down at the pub a while back. 

I have known people in Sai Kung, where I live since the day my parents brought me home to Sai Kung, so basically I have a massive extended family whom I love very much. But I was sitting outside with a family friend called Peter King who has known me since I was 3 and having a lively chat about work and how it's hard for expats and those who don't speak Chinese to get good solid work if you're not with the 'banker wanker' lot. But there was another bloke sitting there as well listening to the conversation. But as we were talking, he seemed to be a nice person but as soon as Peter got up to do something, he turned around to me and said, 'please don't take this the wrong way but you look really burnt and not very pretty'. His words stubbed me to the core and the anger building up inside of me was horrible, like a bubbling cauldron and I knew I had to leave before I did something I regretted. I quickly found Pete and made my excuses and explained what they guy said before leaving for home which is about a 10 minute walk away in the first village leaving the town. I texted another friend for Pete's digits as I wanted to make sure all was okay and that he didn't beat the guy up though by the look on his face when I left I couldn't be sure. When I explained why I needed his number, it all came spilling out and effectively I was so sure I'd have to deal with the ignorant soul myself, it never occurred to me to ask for help around me, as someone else quoted later, "Mui wanted to solve her own battles". It didn't occur to me that I didn't have to leave as abruptly as I did because I had an army of Liverpudlians and friends to rally around me and that's what's so good about Sai kung. Whether you have been here for a day, a month or a lifetime, we look after each other and no one, thick or clever has to fight battles on their own. 

I challenge you and every person who makes snarky remarks and damages the confidence of the people around them to take a very good look at themselves and to think , "what if I was in their shoes, how would I feel?!" Go on.

Wednesday, 16 July 2014

The IchthyRef Tackles Social Media

I have many praises for social media, I do.  But we all know that's a cut throat past-time where whatever you post online is for all to see. People all over the world are able to see the good, the bad and the ugly. That's just the way the internet is and unfortunately in some ways, social media makes or breaks you. The IchthyRef has tackled her fair share of social media issues and figured that maybe, sharing some tips and scenarios could help educate others. 

Instagram is something we all love, right? I mean posting photos of sexy sandy beaches and one's food is always somehow entertaining for random followers. I've been on it for about 9 months now, well since I got me a new iPhone which was about 9 months ago! I love posting pictures depicting things I do every day or things I find amusing. But with all things on social media, I've had to excercise caution just because there is always some chick who has never seen someone with Ichthyosis before and will make unkind remarks. But with so many things, you make the decision to post your life online, you deal with the outcome, you clap like a maniac when you get a like for your bowl of noodles and you wail like an idiot if someone comments about your thunder thighs being too chunky!

Do you remember those days back when one lived on MSN messenger? You'd race home, turn on the computer and start conversations? Maybe turn the USB webcam on too? Well I was no different and I loved using it. I recognised most if not all of my contacts so I knew who I was talking to. It was an unfortunate incident that I clicked 'accept' to an unknown person and in my naivety, thought I could trust everyone I chatted with. 

That incident led to effectively hate mail and believe me, sh!t truly hit the fan and it made me determined to cross check unknown contacts in the future. 

Sometimes if a person I don't know adds me on Facebook, despite the fact we may share mutual friends, I send them a quick message to double check if I really do know that person. Sometimes it just needs a little recap since I meet so many people wherever I am, it ain't easy recognising names! 

But sometimes. Even if you don't accept a request, people can still contact you and even if it isn't malicious, but it's suggestive and makes you feel like a lump of poop, don't do what I did and run to Facebook asking for help. Yes I could have done that and after all I am an adult of 21 and a half, but would that really have helped anyone? If people were sending you threats to kill yourself and commit hari kiri, then sure, the police is the way to go. But if you are being sent messages asking if you love the sender and want to be his girlfriend, either, ignore the twit, block him if needed and keep an eye on it. And if things escalate, one needs to carefully take further action. But otherwise, what good will it do?

I've just come out of teenage years and while some might speculate whether I'll ever truly grow up into an adult (I'd love to remain young, life is so carefree!) I have posted negative and bitchy comments on Facebook and Twitter. In some ways, it's a way of life, but especially for someone like the IchthyRef, when one already stands out, your comments are taken into account and your persona is built from how you act on social media. It can actually make or break job applications, university acceptances, or in general, it can make it break YOU. It doesn't matter whether you're a lovely fluffy human being in person, it's your online life that's affected as well. 

I've made lots of social media rookie mistakes and I'm not truly thrilled about my past behaviours online. Of course I've recommitted cardinal sins. But ultimately. You need to to responsible about using it. Because funnily enough, some people actually want to know good things in life. 

What's that people say?

The good things should always override the negatives?

Something along those lines...