“How are you?”
As someone who lives with about a million words buzzing through my brain at any one moment, finding myself without words is an unusual and disconcerting phenomenon. Yet here I am, unable to answer that deceptively simple question. Even though social convention defines the answer for me (I’m supposed to say something benign like, “okay”), the words avoid me. The best I can do is offer a pre-emptive, “do you really want to know?” meant to inform the casual passer-by that this is no time for me to endure idle pleasantries.
I’m living with bad news, a life-challenging diagnosis that smacks me into reworking everything I thought I knew about myself and the world I inhabit. People ask me if the news is private; it is and it isn’t. It is a fact, a fact as basic as stating my name, and it is inescapable. The question is a curious one, as it begs the response of “why would it need to be private?” What about the circumstance requires it to be hidden, who is being protected by its silence, why would I need to become the guardian of this information? These questions make sense if we’re talking about a situation that was foisted on me, robbing me of voice or volition. True, I had no choice. But neither would anyone else (in spite of our society’s false belief that we can stave off such situations – we can’t. It is a roll of the dice, like so much else in life, and it says nothing about my worthiness or status as a human being. No – actually it says everything about my status as a human being, because it is an expression of our simple, frail, unknowing human nature that such things happen to us, seemingly at random). I do have a voice, as much now as before I had this news. I have a right to talk about the effect it has on me, in the ways I want to and with whom, but to state the fact of it – no one really owns that story, presuming it merits being called a story in the first place.
The privacy surrounding the news is more about whether or not I have the energy and resources at any given moment to share my condition with anyone else. I do not need to be private, but our talking about this necessitates an evaluation of our relationship. To speak honestly about me, I will need to let loose the unpredictable, scary looking, irrational intermingling thoughts and feelings because the condition takes away the energy required to filter, to present oneself in socially acceptable ways. Take that phrase, “socially acceptable” – is it really more a comment on the basic expectations in place that allow two people to interact? Break that social contract and you don’t know what you’re left with, other than knowing you have lost precious energy that you will not be able to get back.
The social mores connected to giving and receiving bad news seem to suggest the speaker needs to be calm, collected, full of answers, and positive. In other words, be fake, put on a brave face and smile, largely because the others in this arrangement can’t handle the possible alternatives. Given those requirements, I do stay private sometimes because I am not able or interested in making my news comfortable for someone else. Sounds harsh, but if I’m on fire, I don’t need to quietly and easily articulate, “excuse me, but I happen to be on fire, could you be so good as to perhaps, locate an extinguisher?” No, instead I’m going to yell,
“JEEZUZ I’m on FIRE! Isn’t it fucking obvious that I’m on FIRE?? Help me!”
And I’m not going to get into a pleasant conversation about all the good things that can come from me being on fire, or identify all the chemical processes associated with making and extinguishing fire, or philosophically explain what fire is and why fire happens. When you’re on fire, you’re concerned about not being on fire. My ability to provide answers and be assertive disappears because I might be dropping and rolling to no effect. What I do need is for someone else to step in, recognize that the fire is there and that fire is not my normal state, and my survival depends on them to move towards the fire, not away.
So, being private is expressive of a decision point, my assessment of whether or not I can drum up the energy to find the words, knowing that I will learn in less than 5 seconds wether not this relationship can accept me being on fire. I’ve already learned that a lot of people really don’t like fire and have no idea how to respond to it. Someday I’ll develop a more compassionate view towards those who can’t handle the heat. Right now, I’m still on fire so I need to find others who will at least try before I’m turned into a charred husk.
I am asked, “what is it like?” and the answer is, “awful.” Beyond that response, I struggle to find words. I can’t make sense of it, I just live with it. It is like being in a glass box, where I am asked to describe living in the box but I can’t see it from the outsider’s point of view, because I’m in the box. I only know it from the inside, and I would need to be outside the box to think about it. Fire steals my language, and when I am able to talk, usually it’s gibberish. The way I knew myself is no longer visible, and I have no construct to replace it with. Eventually it will be revealed, but not on my time scale or terms. That is life inside the box. A well-intentioned outsider asks questions about the box, but it is the one thing I can’t speak to, which reinforces that this box exists, making an invisible wall between us.
This leaves two choices for the other, to be in the box or to stay outside. Others who know life in such a box don’t ask questions about the box. They just ask questions about me. The box is taken as a fact, one that isn’t worth us spending time on. We might have a common, temporary curiosity of, “is yours a cube or a dome” but we already know the box to be as present as the air we breathe. These boxes are not common, thus more people will be outside the box – but that means the other has to recognize that they are outside, and this is not a personal deficit. This is again an acceptance of fact, of condition. You can’t be inside it, and you wouldn’t want to be. No one should be. Don’t try to smash it, cover it, put a pretty picture on it, or think you can free me from it. All that is a waste of time and energy. I am learning to live in it. Odd as it may seem, I don’t have a need to fight being in there. It is making me into someone else, in ways that I will and won’t like, but I don’t know who that is yet. Don’t try to step inside, or run away. You might be afraid that being outside this box changes us, and it probably will. But I’m inside, and I can see you; I just need you to stop long enough to see me.