My Love/Hate Relationship with Attention
I’ve gotten some really big love from these blog entries over the last couple of weeks and it’s been amazing. I’m trying to receive it as care in a deep way, but it also makes me SUPER uncomfortable for a couple of reasons:
- Basically, I’m fine. In fact, I feel physically stronger and healthier than I have in years. Four years ago, I found a movement therapist who understands hypermobility and she has helped me build my endurance and strength, and I can sit and stand longer than I’ve been able to since 2013. I happily go on miles-long hikes (remember, walking is easier for me than sitting and standing — counterintuitive, but true), so it’s odd to be getting all this love and empathy when I am feeling so much better than I have in such a long time. I feel like I’m tricking you all into giving it to me.
2. It makes me realize how different the image I project is from my experience of myself. I perceive myself to be thinking, talking, and complaining about my pain all the time, but your outpouring of support and love makes me realize I’m not *actually* doing that. My husband says denial is my superpower, and maybe that’s true. When I write about, talk about, and really share about my pain it gets 1,000 times worse. I feel bad as I’m writing this. And when I pretend for myself and the world my pain doesn’t exist, I really do feel better, at least in that moment. We’re all encouraged to do this, mind over matter and all that, packaging and posing and lighting our curated selves into pretty pictures for the world. My challenge has actually been un-learning that mindset, since overtaxing my body and joints is easy for me to do (thank you, gymnastics training) but dangerous for me — when I get tired it’s harder to hold my body upright, and it makes injury and dislocations more likely. So, yeah, I guess I spend more time than I realized faking it. I can’t decide if that’s good for my mental health or not. I want to look great and make people feel good and project that I’m doing well, and that’s all true at the same time as having this underlying condition, which persists and will certainly get worse again. Hmmmm.
3. I don’t like the attention. I want to share my experience because I know so many other people who are in pain and trying to cope and who have a hard time explaining it to the world and I hope my words are of use and make them feel less alone. I am writing a memoir because my experience has been traumatic and it’s therapeutic and cathartic to get it out. Experiencing the profound inaccessibility of the world and blissful ignorance about disability that is so common makes me want to talk about it constantly to make everyone more aware. I also just love to write. I didn’t really think through what it would be like to have all these people in my life really know me in this way. It’s weird. It’s like the naked-on-a-stage dream. Again, this is not to be ungrateful for the love and support, it’s just taking some getting used to.
So, what do you think? Am I airing dirty laundry, or navel gazing, or truth-telling, or what? Let me know if you know.
