byebyedollface asked: I just discovered your blog today, and I love it. I see a lot of myself in you. I, too, had open heart surgery and it sucked. I re blogged a photoset of you with those sticky things on/around your chest. It brought back memories of trying to get that adhesive off my skin. It was annoying as fuck (excuse my language). How has your experience with this shaped who you are? It did a lot for me, and it's nice to know someone who is going through a similar enough situation to where I can discuss it.
Thanks! I’m glad you like the blog and that my pictures resonated with you! I’m sorry to hear about your surgery—OHS is pretty rough going, psychologically speaking. Protip on the adhesive though: baby oil and a washcloth will take the residue right off. Should you ever be faced with stubborn electrodes again.
As for how it’s shaped who I am—that’s a difficult question, since my illness is embedded so deeply in my life. I’ve had it since birth, so even identifying that my experience is different from most people’s was a huge step. So there’s a sense in which doing a cause and effect thing is facetious; and equally facetious is an attempt to isolate areas of my life and say that my illness hasn’t influenced them.
That said, I can speak easily about what it means to me and the relationship I have with my illness and my illness experiences. I am deeply aware of my own mortality and my limitations, as well as my own capacities. I know my own strength. I understand intimately the tension between necessity and desire—that sometimes you don’t get to chose things, that your will is smaller than the world, and that maintaining identity in those situations is a matter of attitude and perspective rather than action.
I’ve never been able to chose the medical things that have been done to my body; though I consented, in technical terms, to my most recent surgery, it was a “surgery or death” situation. Hardly a meaningful choice. I submitted to it because I wanted to stay alive. And much of my surgery experience was just about staying alive, about making it through by whatever means necessary. But six months later when the dust settled and I felt safe again, I got a tattoo to commemorate the experience. That choice became a proxy for the earlier choice I was unable to make; I chose to integrate my experience into my sense of self and into my body and how to do it.
It really fucks up your sense of bodily safety and autonomy. In many ways that safety is an illusion (you could be hit by a bus tomorrow) but it’s also one of those psychological tricks we humans need to keep going, I think. For me, some of the biggest coping skills I needed to learn were the ability to identify the things that make me feel unsafe or violated, and to consciously enact my bodily autonomy. So, for example: I learned that strangers touching me makes me feel really anxious and dissociated; that exercise, which normally makes me really anxious, feels okay and even good if I do it in an environment over which I have a lot of control; that having the scar on my side touched feels really icky, no matter how light the contact. So I am now really good about setting and paying attention to these kinds of boundaries, and I am awesome at saying no. I enact my bodily autonomy in big visible ways by getting tattooed and by being very particular about how I present in the world. This is why femme is so important to me: it’s about enacting and owning vulnerability. I also do it in more internal ways, by making an effort to pay attention to my body’s cues and cravings. I needed to learn how to build a sense of physical security for myself and set strong boundaries around my body.
To circle back around to your original question: I think the way it’s shaped me, more than anything else, is that it has formed my ability to reach into my own seething mass of anxiety, vulnerability, and fear and let it talk to me.