I first 'met' Hayley Cafarella from Rellacafa on Twitter in 2009. I was tweeting about how much I love Sgt Brendan Joshua on Rush. I searched for the #rush feed, and found a few other girls also tweeting over their love for Josh, or Lawson Blake. Soon it became a regular Thursday night event - watch Rush, and me, Hayley and a few other (excited) women tweeted our commentary about the episode of Rush, particularly what we might like to do should Brendan Joshua arrest or save us. Like this: 'Josh on Rush. Reliably keeping me satisfied.' and 'I am loving the BROmance between Josh and the Sunnyboys in this season of Rush.' and 'Wow! Next week Josh has his shirt off!'. Fun times.
There was more to Hayley than her Rush tweets alone. I discovered she had a blog before I started mine. I came to know Hayley through her blog. She blogs a lot about her journey with her disability - chronic regional pain syndrome (CRPS). And she inspired me to write about my own illness.
Hayley is so articulate and creative in her writing. She explains her disability so clearly - including all of the emotions associated with it. Sometimes it is difficult to read or watch (she does videos too) - the reality of disability - the pain, the loneliness, the financial stress - is confronting. But it's so important that people like Hayley tell their story to raise awareness about the situations, and also form communities with others online. Hayley uses her blog as a form of therapy, and in each entry, no matter how bleak she feels, she always finds some positivity. I am always moved when I read her blog.
We finally met in person at the Melbourne International Comedy Festival earlier this year, and then again at the Rush premiere in July. She came to my birthday party last week (and blogged about it).
Hayley and I have become great friends through blogging. We email, tweet and chat on the phone frequently. We understand what it's like to be physically limited by a chronic illness or disability. We are both creative. And still both love Josh. I also recommended her to the ABC Ramp Up editor, and she was also asked to contribute her brilliant writing to the website. Here is her first brilliant article!
Thank you for writing this guest blog, Hayley! You're a really special friend.
Guest blog by Hayley Cafarella:
The internet is a pretty wonderful place, once you get past the psychos and porn. A couple of years ago, I was completely unaware of the amazing world of blogging. Thanks to being struck by Complex Regional Pain Syndrome in 2006, I ended up surfing waves all over the web in order to distract and entertain myself. I was amazed to discover the calibre of writing that appeared on blogs and found myself fascinated by writers adding a personal touch to many different topics.That’s when I decided to get in on the action and start writing for myself.
My disability is a pretty hard thing to understand, even for the doctors who specialise in it, especially for the patients who experience it and perhaps even more so for the families and friends who support them. My blog began as a way to try and communicate what I was going through; to spread awareness about CRPS and hope that some day my condition would be understood and accepted. Something that I never expected when I started writing was the way in which I started connecting with other people suffering from the same condition and the comfort and support their existence would provide me. When there are no cures, comfort sits atop slippery anxiety and simply sharing stories and rants with people who understand has meant that, often, I am able to get a better foothold in my mind and stay sane.
As I became more confident about interacting online, I began to meet more and more people through Twitter and Facebook who were dealing with disabilities different from mine. Quite often, I found that I have a lot in common with anyone suffering from a condition that limits their activity or causes pain, as my condition does both. Chronic pain or illness brings about a lot of psychological changes that one must deal with and I think the support that patients can offer one another in this area isn’t limited by the specifics of their condition. Sometimes, we just need to reach out and feel another hand take ours; a cyber hand can feel just as reassuring as a fleshy one.
Carly is one of the few online friends that I have made and had the pleasure of meeting in person. At first, I was incredibly hesitant about meeting up with people from the internet - they could be anybody, right? Well, yeah, but the times are changing and the separation between online and real life identities is getting smaller. I have found that most people whom I reach out to and form relationships with through social media turn out to be who I expect them to in the real world. Usually, what I have learnt about them online is just a small taste of their awesome and it’s nice to go out and basque in the whole deal. Meeting up with Carly has been great, I think almost every occasion she has introduced me to other new and fascinating people that are now a part of my world. That’s the run on effect of making new friends, you see, they often come with a whole bunch of other potential new friends to get to know! Some friendships might begin in the online realm, but the real world effects of taking time to meet up and broaden these relationships brings even more rewards.
The most wonderful thing about meeting up with people who have gotten to know me through my blog is that they are already aware of my CRPS and, to an extent, how it effects every aspect of my life. When I meet people randomly, this can be kind of hard to explain and also hard to avoid. “What do you do?” is right up there at the top of most small talk conversations! My answer usually leads to a little disbelief and then pity. When I meet people who already have a little background info on me, that dark shadow is lifted from our interaction and I am not left feeling misunderstood or disconnected. Once upon a time, not very long ago, I approached an internet social meeting with a bit of trepidation. Nowadays, I look forward to these outings and often find them less stressful than a social setting that will have me small talking with people that I don’t know at all.
As a species, we tend to focus on the negative aspects of things. This has great ramifications for surviving in the wild; remembering a plant that made us sick or a place where we tripped over and hurt ourselves is important in a biological sense. How many times have you asked someone about a holiday or an event and had them reply “It was a pretty good day, but, my food was cold/the bridesmaids looked awful/the bed was lumpy...”. When it comes to the internet, people often focus on the negatives and find themselves hurt by comments from strangers. Exposing parts of yourself in order to connect with other people can make you feel vulnerable and cause anxiety about how your words or actions will be perceived. I have had unpleasant experiences myself, however I choose to let those go and keep focusing on the positive interactions that I have and the supportive relationships that I have built with others. The warm fuzzies that they bring into my life far outweigh any small minded comments from people that I don’t know.
Having a disability can lead to a very lonely lifestyle. I could not be more grateful that the internet is here to allow me to share my journey and learn from the experiences of others. Blogging allows me to stay connected with old friends as well as connecting with new ones. To an outsider, bloggers might appear to be self indulgent, narcissistic or frustrated writers who are unable to get published. Those bloggers do exist, but they aren’t the whole community and it is worth going to the trouble of weeding through them to find the talented gems. I am so glad that I share parts of my life in this way. Blogging has already allowed me to find great new friends, like Carly, and I am looking forward to connecting with more amazing people over the years to come.