On the trouble with the truth

I am looking at the neurosurgeon’s business card. I’m supposed to call the number this morning to schedule Jessica’s surgery. I will talk to June, whom I have talked to before, and she will be very kind, and it will be very easy, in the sense that she will not be a pain in the ass and put me on hold fifteen times.

I know what the call will set in motion, and I am just fresh out of any capacity to deal with it. I have been looking for my anger and my bitterness, my rage at the injustice of what the universe has done to my daughter, and I can’t find it. The rage usually carries me through. But it has disappeared, and there is just a hard ache where it was, and I don’t quite know what to do next. I think maybe it means this time I am broken, and the universe has won, and yet I can’t even seem to get worked up over that. I am not even incensed over the dumbass things people have been saying to me. “They’re trying to find the right thing to say,” I think, and you know that’s just wrong. When have I ever cared what people meant instead of what they said?

Here is a thing I will never forget. Jessica, in the plastic chair next to me, listening to the neurosurgeon speak, the paleness of her face when he says what the studies have shown.

“I thought we already did surgery to make me better,” she says.

Yes, the neurosurgeon tells her. Yes, but it didn’t work, and your condition has worsened.  He takes her face in his hands. “I am so sorry, Jessie,” he says. “I am so so sorry.”

That is when the tears start. They’re not the huge wracking sobs like I will have later on, alone. Her tears are quiet. She is devastated. Worse than that.

Jessica is afraid.

She is afraid because I have always told her the truth, as if I couldn’t have just lied to her and saved us all a lot of trouble. What would have been wrong with lying? I could have started when she was young, and wanted to know about the scar on her skull, and I could have told her anything. I did not have to tell her about the disease she was born with, or the way the doctors took out half her brain and threw it away. And when she was older, diagnosed with another even scarier disease, I could have lied about that. “No worries,” is what I could have said.  “It’s not a big deal.”

It’s not like I don’t lie all the time to other people for the sake of expediency. “I do love that new haircut and no you don’t look like you’ve gained fifteen pounds.” You’d think I could lie just as well to my own daughter.

The problem is that a long time ago, I enumerated the rules that Jessica and I live our relationship by, and one of those rules is, “We will never lie to each other.” Which, now that I consider it, is a stupid rule. We have other rules, like, “We love each other no matter what,” and I don’t know why I couldn’t have just left it at that. But no, in a stroke of idiocy, which at the time I mistook for wisdom, I came up with “We will never lie to each other,” and so we never have. A long time later I realized this is because Jessica does not know how, so we didn’t really need the rule in the first place. But it was too late by then.

“Tell me what we are going to do,” she demands, grabbing my wrist as we sit at a table in the small snack shop on the second floor of the hospital. Her father is buying her a Diet Coke. She is clutching a pink stuffed dog in her other hand. “What did the doctor mean by loss of function?”

And so I tell her the truth because I always do. It is only later, too late, that I think, “What the hell would have been wrong with a lie?”

But I tell her what loss of function means, and why a skin graft is needed for this surgery and not for the last one, and where the skin will be taken from, and I even tell her what the risks of the surgery are because it is her life and her body, and she ought to know. That’s what I say to myself, what I have always said to myself: the world will try to disempower my daughter but I never will. And for some dumbass reason, I think this means I can never lie to her.

I answer every question I can. She cries a little more, but everything about her is dignified. And sometimes when it hurts too much for me to speak, her father steps in, gently explaining. He’s always been the world’s worst liar and so he doesn’t even try.

“I do not want to be in a wheelchair,” she says.

“I know, honey,” I say. “And that is why the doctor says you need this surgery.”

“The bandage will hurt coming off.”

“Probably ,” I say.

“They always do.” She looks at the pink stuffed dog. She takes a sip of Diet Coke. I hate the fucking universe.

“Should we get some lunch?” her father says.

“Lunch would be good.”

I have no appetite. I’m a stress eater, and this is the first time in my life when I can’t eat anything. There is something wrong with me, and I don’t know what.

“Will you tell Lisa tonight?” Jessica asks her father. Lisa is his partner, or at least that’s the name I give her on my blog.

“Probably.”

I am glad he has someone to talk to. We have always been able to make decisions about Jessica together, but we have never been able to help each other through.

“Ready to go?” He has Jessica today, and I won’t see her again until tomorrow. We take the elevator to the parking garage and they get off on their floor and I go down one more, alone in the elevator, thinking how many times I have been here before. You would think it would get easier, or that I would learn to expect the damned disasters, but it doesn’t and I don’t.  I am just as stunned this time as every single time before.

I should have lied to her, I think, but it’s too late now.  Or maybe someone should have lied to me. I think I would have liked that a lot.

But no one ever thinks of lying to me. I don’t know why. I’m a fairly gullible person, and I’d be happy to believe in unicorns if someone would just lie to me in a convincing way.

My footsteps echo in the parking garage. I get in the car. I will have to call the neurosurgery office in the morning but right now I just have to go home and do some work. I do, and I pride myself on the fact that no one would ever guess about the wrenching pain. The work has always saved me, it has always been my solace. Jessica’s father has his partner, and I have my books.

I don’t know what Jessica has. This is the first time I believe that we are not enough, her father and I, that we cannot keep the fear at bay for her any longer, that she will have to find a way to do that herself. It’s part of growing up, I suppose, though most people are never tested this way. Maybe that’s why I have always told her the truth, so that she will learn to be strong enough to face it.

I wish she didn’t have to be. I wish she had been given a life like other children have. I wish I could give her mine. I have made those wishes for nearly fifteen years, and today I have one more. Oh my beautiful girl, I think. Please make it through one more time.