As part of my PhD research, I’m reading through this blog. It is an interesting experience. I wrote the blog, but I haven’t really read it. And I certainly haven’t read through multiple months at a time, from the beginning tracing through my journey – reflecting on what I wrote versus what I now remember of that time – thinking about the things that I didn’t write about.
Today, I read a couple of blog posts from a pretty transitional time. It was my first academic conference that I travelled to after cancer – Emerging Technologies for Online Learning or #et4online. The previous years conference also happened to be the last conference I went to before my diagnosis. I wrote about my first day and how tiring it was and how I found myself negotiating my new identity, but also the second day where I laughed so hard at karaoke that my abs hurt, then went back to my room and cried.
The #et4online conference turned out to be a rather transitional conference – in that it was the conference were #et4buddy began – which has since been renamed and thrived as Virtually Connecting.
One of the things I didn’t write about was how I was really self-conscious about my hair before the conference and on the first day of the conference. In posts from earlier that month, I had written about how my grey post-chemo hair was driving me crazy to the point where I dyed it. It was thin. The first session that we did I was wearing a headscarf to cover it – but the next day I decided I didn’t care. I let go of my self-consciousness. I styled my hair into spikes because that is all I could do with it. It was thin. My scalp showed through – or at least that was my impression – and yet I decided I didn’t care. One of the reasons #et4buddy worked was because I let go of all my self-consciousness and worry, and just went for it.
Upon reflection, that was really a transformation in my self-confidence. Once I stopped worrying about what I thought other people might think about me, I was able to just be myself. I was able to let go and enjoy myself, but also to be myself with a level of self-confidence that I have never had before. I stopped caring about how other people might superficially judge me. It was like letting go of a weight that had been holding me down.
Within that same timeframe I became more aware of who my blog audience was. When I started the blog, I saw my audience as my family and friends, but also as healthcare providers. I even wrote posts specifically to healthcare providers (I still do from time to time). But, at some point, I realized that my primary audience was actually other breast cancer patients. I was sharing the details of my journey in order to help others understand their journey. I shared my coping strategies but also my decision making processes. Sure, sometimes articulating my decision making processes was so that my family better understood my decisions, but mostly it was to help other breast cancer patients make their own personal decisions.
Another area that I am noticing is my changing view of what it means to be an engaged patient and what it means to be a patient advocate. I struggled with what my advocacy was. I still struggle with what my advocacy is, and what that will mean in the future.
And yet, as I read through all this I’m also overwhelmed with a huge sense of denial. I feel like I am not living in this body. I am looking on the past three years of my life as if it didn’t all happen, as if I am not in the position that I am in today. I feel like I want to just stick my head in the sand and pretend it all way. I want to wake up and have it all be a bad dream. No, I’m not a breast cancer survivor. That didn’t really happen to me. But I don’t need to pinch myself to know that it did happen. I just need to look down at my hacked up body. I see the scar that runs from one hip bone to the other, and the numb appendages on my chest that look like breasts but don’t feel like anything. And I know that I am not having a dream. I find it funny that I write this and yet in the same breath I talk about my improved body image! But I also look at my accomplishments. I look at how I have a much healthier sense of body image. Shedding my fears of what other people think of me has made me a much more confident teacher. Pushing through recovery and regular exercise means I am hiking and swimming further than I though I ever would. I am getting stronger every day, and that is something that I cannot deny.
Feature image from #et4buddy Hangout on Air.
