Shining a Light



In almost 1400 posts over the last 9 years, I have shared my life here on The Seated View. Many of those posts were about RA, fibromyalgia, chronic pain and disability and my thoughts and feelings about living within a reality that is sometimes difficult, sometimes funny and sometimes just… life. Some posts were explorations of social phenomena, others reviews, photos and yet others brought the intensely private into public view. Why did I decide to share this part of my life on the Internet? Why do I continue? This is my entry in the Partnership for Palliative Care blog carnival exploring why we blog or share in social media about our illnesses.

This blog carnival was prompted by the story of Lisa Boncheck Adams. More specifically, Bill and Emma Keller using Adams to make a point about terminal illness and those who choose to share the reality of what it’s like to live with an illness, in this case metastatic breast cancer. Much has been written about this story (here and here, for starters) and much as I’d love to jump on that particular bandwagon with a good rant, I won’t.

Well, not exactly.

For most of my life with RA and disability, I pretended to feel better than I actually did. I tried really hard to be normal — whatever “normal” is — and very few of my friends knew about the intimate details of RA and disability. I would rather not go somewhere then admit I needed help using the bathroom. I went to school full-time, when my illness would probably have done better if I’d done it part-time. I looked at myself and didn’t like what I saw. I was silent about this very important part of my life.

After my big flare nine years ago and finally finding a medication that worked, I decided to honour the miracle by changing myself. I set out to become the person I’d always wanted to be and to live with emotional honesty. Blogging was a tool for that, became the place where I wrote about illness, pain and disability, where I explored living in a way that told my story honestly, to others and myself. Here, I challenged myself to live thoughtfully, explore new horizons and to always tell my truth.

The truth, it turns out, wasn’t always pretty. Because life with a chronic illness and disability isn’t all heroism, soft hues and stirring soundtracks, as in the movies. Our lives have aspects which are challenging, raw and painful. Icky, one might say. There are days when you curl up in the sobbing heap, days of anger, profound sadness and learning the lesson for the 47th time that month. There are also moments of great joy, moments of such transcendent purity and beauty that you wonder how you got so lucky to have this life you do. And I have decided to share not just the latter, but the hard parts, too and what started out being an exercise for me, grew into something completely different.

In telling the story of my life, I began to deliberately shine a light on all of these things that are normally hidden behind the stereotype, the things we so often live through in isolation. There is a subtle — and sometimes not-so-subtle, thank you Mr. and Ms. Keller — pressure for us to be bravely stoic, to suffer in silence, to shut up about the icky things. And there is a power in finally no longer being silent. No longer hiding, pretending that your life is different than it really is. Telling it like it is gradually brings acceptance, makes you okay with who you are and from there, it’s not so very a long journey to actually liking who and what you are.

And it turns out that what I wrote was actually helpful for others in the same situation. When I wrote about what pain felt like, others sent the link to their friends and family to help them understand. When I wrote about those things that “should” be left unspoken — sex, suicide — I received comments and emails from people telling me it was powerful, it was their story and thanking me for bringing it out in the open. And I heard from others who don’t have chronic illness, pain or disability who told me that my honesty meant they understood better than before and that often, they share the feelings I wrote about, but from a different experience. And I am grateful to everyone who are part of this conversation.

Writing about your experience, whether it be chronic illness, parenting or your love of animals, builds bridges. Bridges to others who share your experience and in sharing, you build a community. Bridges to those who do not know what it’s like to live with the challenge you do and in sharing, you build awareness and connections to a wider community. Writing about your experience erases taboos, deflates stereotypes and breaks down barriers.

And that’s why I write about my RA, Fibro, chronic pain and disability.
   

Comments

Vickie said…
Thank you, Lene. This is one I am going to share. It means so much to me, not-so-stoicly going through chronic oain and illness, and I think it is something the temporarily-able-bodied would like to read, too.
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