How did I find Ruby Siketa? Pretty simple. A fan of Harry Potter and more specifically the character Neville Longbottom, Ruby connected with actor Matthew Lewis and his mate Chris “Cuzzy” Cousins (who face off on the blog Lewis vs Cuzzy) who spent 7 days in Sydney in June/July. Cuzzy had tweeted a link to Ruby’s blog and over the next two months I’ve silently followed her posts and watched fellow Harry Potter and Cuzzy fans (there are t-shirts…) rally around someone they’d never met as she continued her battle with leukemia.
A talented writer, the 16 year old was able to express herself through her blog with a maturity sadly afforded to those who lose the opportunity to mature. When she was unable to write – either because she was unwell or in isolation – her friends would post thoughts dictated by Ruby or update followers with her progress. Ruby tweeted, twitpic’d, YouTubed and blogged her way through some of the most intimate moments one could ever experience with a varying degree of aplomb. Her public struggle left her open to as much crap as there was compassion. Her reaction to the crap continues to amaze me: I’m trying to keep up to her standards!
While Ruby started to slip away physically, digitally her presence became overwhelming. Those who had traded daily tweets, comments, IMs and link love responded in the way they connected.
The warcry EAT SH*T LEUKEMIA spurned t-shirt, hoodies and wristband designs. They rallied with bad jokes, Ruby’s specialty, and as the tests came back with less and less hope they sent Christmas cards so Ruby could celebrate one last festive season, albeit in the second week of October. Neville Longbottom himself was even scheduled to make an appearance around the tree.
I’m sorry if you ever thought this was going to end well. Last Friday, Ruby contracted an infection and passed away late in the afternoon. Blogging, tweeting and twitpicing merely days prior, Ruby left behind Christmas, merchandise and a digital footprint that packs a bigger punch then most brands I’ve engaged with, or probably ever will. And there’s more to come …
Am I scared of dying?When my therapist asks this right, she looks me full on in the eyes, puts down her pen and chews her tongue. EVERY TIME.
To begin with I’m kinda a failing agnostic. Ah you know what, I’m not gonna detail this, so moving on…..
it seems so hard to die and so easy to live. Breathing is easy. I sometimes sit there and think it’s just ‘in and out, in and out’ – how could I actually ever not be able to do this? When I was younger I’d hold my breath untill I nearly passed out to see if I could see a ‘light’ or anything!
I think I am scared of dying. Whenever I’m doing nothing for too long and I start to think about dying I get this weird butterfly like feeling in my stomach that sometimes at it’s worse makes me vomit!
We all die – I’m just more talented at it. Anyway my therapist asks the question; what worries you most? I guess the answer would be ‘will it hurt?’ ‘will I know?’ and ‘is there a hell?’
I get emails from chruches and religious people all the time. But if the bible is right – I’m going to Hell. There’s no point in faking that I believe the bible because I’m sure if God exists he will know!!
Once I saw a dead bird on the ground when walking my dog. But then I realised it was moving so I gently nudged it and a load of maggots errupted. I have seen many people die. I have seen my assured death masquaraded as medical notes and yet I still think it’s impossible. To sit with my friends and watch Family Guy or something I just cannot see how things could change. When I agreed to have the last chemotherapy to extend my life line I remember sitting in a room by myself (and my portable chemo!) and closing my eyes and here the blood rush around my body, my heart beating and the chemo disturbing it all.
I’m also sad. Not because I have to die – but the consequencies of it! My twin for example, we’ve always been the same age (the general rule with twins you know) but I’m always going to seem like his younger sister. All my friends will grow up but I never will.
I think that’s most of my general thoughts all out.
As Peter Pan said – ‘to die would be an awfully big adventure’.
excerpt taken from Ruby’s blog: Life Endings
Give blood: Australian Red Cross Blood Service
UPDATE 04/09/11: Unfortunately this has been uncovered as an elaborate 3 year scam. It’s sad to think that some genuine, kind people have had their best intentions poured into something empty and cruel. It’s even worse to think that a real victim will suffer from the loss of trust as these kinds of scams become more and more common. Maybe you can work a random act of kindness into your day to send a message to these idiots that they haven’t won.
~ by mandi bateson on October 13, 2009.
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