S asks if secrecy is a normotic phantasy too. Yes, I think so. Tied up as it is, in the technologies of denial, subterfuge, dominant governmentalities. But is privacy too. And self sovereignty. M raised this with me when we were writing the introduction to the special issue. The fallacies of individuation, sovereign selfhood apart from others, a denial of the interdependencies of bodies and lives that are in fact the human condition. Who is an island really? And yet. I think of the ways in which secrecy — call it discretion, call it hiding, call it dim lighting my own lights — has dominated much of my own life. The sense of obligation that has driven it. The embarrassments in its wake. S is right that shame and guilt are cruddy, cruel oppressors. But so they are embedded in the fabric of so much.
I’m not sure where it comes from. The need to be fastidious, the disgust and despair at the sullying of this in my own house, in and of my own body. Not the hospital or the doctors. I think it is something in me and not something I expect of others.
When I first got sick, at the end of the treatment cycle of 2008, I was assailed with feelings I can only describe as venom. They were deep and they were directed at me. Ive struggled with feelings like that before and after, but nothing like what happened then. Where did it come from? I don’t feel it now. Just the embarrassment of not being able to talk, or wash without assistance, of having to give up the quietude and cleanliness of body that I had before. There is no capacity to hide, dependent as I now am. It breaks boundaries I wanted to keep intact. It is not something I want witnessed. And it can’t go unremarked, because it has marked everything I do now. Hard won, I manage sometimes to reflect on things here or in letters. But my hands are beyond repair and who suffers this? My cough is a dreadful hacking raking sound that scares Lola and disgusts me as I choke on nearly everything, including the normal effluences of my own body. I am forced to spit it out, uncouth and crude, into tissues I go through in bucketloads. My legs look like twigs. My left arm too. My hair is a rats nest I can’t do anything about. I hesitate to ask for help. Most people don’t know how to do my hair. It is hard to brush out the knots, hard to pull it away into a plait. People who have tried are tentative and overwhelmed by it.
Maybe its good that i am starting not to care. Though G says not. And I spent the morning crying as I read the letters from S and L. So I guess I do care and just wish I didn’t.
[letter from S]
Maybe dignity is one of those things that appears only when it disappears. That would make it a negative experience. But there can be dignity, I think, in the negative. A cheap deconstructive turn might suggest that the negative is dignity’s condition, if not its limit concept. But theory feels like a betrayal in these moments, abstract to the point of being callous.
One word you use is privacy, and I think this is rather profound. Privacy is not secrecy. We all know there is no secret to leaky bodies, to what is considered dirty, or spattered, or broken, and so forth. These things are not secret, but we might wish them to be private. Even symbolically private, respected, a small gesture, a touch.
Withdrawal I understand, but this feels like secreting oneself too. I’m not sure if it’s privacy. Maybe it is. Care of the self or self-sovereignty? The open secret that sometimes we cannot care for ourselves, that this is the human condition, that self-sovereignty has limits, that our sovereignty relies on others but that this does not necessarily make us any less dignified or sovereign? Secrecy is a veil of ignorance that says that we know but pretend not to know because we would rather it not be so. Is secrecy a normotic phantasy? And would privacy be something else? And dignity too?
G is right: you have nothing to be embarrassed about. I hate this word, embarrassed. It is shame, maybe even guilt, and secretes you away as untouchable and alone in your responsibility. This feeling is a true indignity, and those who make you feel this way, doctors or NHS staff, they are cruel and cursed.
Sending love xox
I took the liberty of trying to think through your points on my blog. They are good questions. What is privacy vis secrecy. What are their normotic dimensions. What is embarrassment and where does it come from.
I can’t say I’ve come to any better understanding. It may be wrong to feel undignified or embarrassed, but these I do feel. it may be self defeating to try to hide away, but that is what I’m doing. I feel the crudity of my condition keenly. I feel disgust at it. I feel angry. And I just want it to be done. I am afraid of suffering more or I’d figure out how to take this into my own control. But there is no easy way to die. I hear of people who just fade away, or or gone quickly. That is not in the cards for me. Some people are tortured to death, at the agency of other human beings. I guess that is worse. But not much comfort in thinking so. It would be better if I was a dog or a horse. Someone would stop this.
I am sorry for saying such things. I know it is not nice to say and where does it leave the hearer? I do appreciate your letters. They engage me in the best of ways. They make me think. I’ve been missing thinking.
Sending love and hugs,