Yesterday The Nelson Mail ran an article about my illness and the blog, written by my good friend Adam Roberts.
Those of you who know me personally might remember I have the word “Courage” tattooed on my ankle. A lot of people have said to me that they think I’m brave – presumably both for sharing my experiences online, and for continuing to live with my condition.
It makes me feel a bit wide-eyed, because, honestly, I don’t feel brave at all. Letting Adam write about me in the paper, in particular, was terrifying. I’m scared about how people will respond to what I’m sharing. I’m scared because I’m giving perfect strangers an insight into my private life, which takes a lot of faith in humanity. I agreed with someone the other day that it’s something like “Being an hour into your birthday and no one’s shown up. Also, you’re naked and everyone has a copy of your teenage diary.”
The thing I’m most scared of though, is never getting better. I’m so afraid that this is what my life will be now. Stuck at home, not being part of anything meaningful, not doing the job I love. Constantly fighting pain just to be able to do the littlest things, like cook a meal or go to the library or visit with a friend.
And so, really what this blog is – is my war cry. This is me saying, I might be stuck on the couch, but fuck you, I can still be a part of society. I can still shout my opinions to anyone who cares to listen. I can still make a difference.
That last bit is what has been so gratifying about writing. People have come to me to thank me for sharing, because they’ve had the same experience, whether it be with illness or WINZ or any sort of vulnerability, and now they know they’re not alone. That’s been the most satisfying thing for me. And having others say I’ve opened their eyes to a different reality. That they didn’t know what it was like for people living on a low income with chronic illness, and now they do. I’m a big believer in compassion. If I can help foster that in our community, then that alone is a reason to keep writing.
Finally, I want to say I have been utterly overwhelmed by the response of people offering support. It’s been incredibly difficult for me, as a sick person, to accept help. I’ve fought for every scrap of my independence, and I don’t want to give an inch. The last thing I want is for anyone to see me as a charity case. I fucking hate having to take the hand that is offered. But when I do – wow. I’ve talked about connection before, and that’s what this is. I’ve had to learn that people like to help, it gives them a kick. And I’m really hoping that once I am well, I will pay all of you back, forward, and sideways.
Special mention to those on Twitter who message me every day, who have provided items I couldn’t get for myself, and who continue to keep me connected to the world even when I can’t be out in it. You guys remind me why I’m fighting.