I posted about last week’s essay on Facebook, and a friend who is dealing with her own such situation wrote, “I don’t know how you keep doing it, keep feeling lucky and keep going. Some days, Jennifer, every step is such agony, and the lack of balance and fairness stuns me into stillness.”
I spend much of my life there, in that place where every step is agony and the unfairness stuns me into stillness. I don’t know how I am expected to go on, most of the time. And so my friend’s words made me reflect, not for the first time, that perhaps I am giving the wrong impression of what life is like with a child so desperately hurt as Jessica when I talk about the parts of my life with her that give me joy and when I conveniently overlook all of the ugliness and the drudgery and the pain, all of the pain, every day, unrelenting. I think I may be unfair to other mothers going through this, wondering why they can’t see all the goddamned sunshine when it seems to be just radiating out of my ass. Or, worse, I worry my work is held up as some sort of bludgeon: Why can’t you see it this way?
When I started writing about Jessica, I wanted to talk about what it was like to be her mother, the mother of a child who is nothing like most children because for me writing works better than drugs and also no one would prescribe me enough drugs. What I hoped readers—if I had any—would get from it all was this: to come to know Jessica as a person, her own person, and not some sort of faceless non-being, a retarded lump on the sofa and a serious drain on my bank account. I didn’t want to be the writer who every time a drama happens she sees who she can sell the story to. I didn’t want to be the person posting on Facebook every five minutes about how brave she is being in face of the odds so everyone can politely applaud. And I didn’t want to be that person you want to choke, who turns her child into a cause, simpering: if we can save just one little Jimmy down the well, it will all have been worth it.
Because all of that is just an enormous bucket of horseshit. It’s about ego, about flattering yourself that somehow your problems place you above the crowd, all-knowing, all-wise.
In fairness, I have to say that I have done all of these things, because it is hard not to, but I like to believe I eventually recognize it and stop it, and I certainly hope that if you see me smearing such horseshit around at some future date, you will send me a gentle reminder to stop. We’ll call it the Horseshit Alert.
Here is the thing. Adversity does not somehow make people heroic and amazing and worthy of emulation. It can make you crabbed and small and irritable and very very interested in your own navel and the reason you don’t know this is that no one will say it to your face: “Yes, I recognize you’ve been in the hospital for the last sixteen days, but you are not the only person in the freaking world. And also? You are not the only sick person in the freaking world. And one more thing? You are not even the sickest sick person in the freaking world.”
But nobody says that to you. They say that about you.
I felt, and still feel, that too much focus on the hard parts would turn my work into some variety of that kind of horseshit, and really there is no point in adding more horseshit to the world, which is plentifully supplied with horseshit as it is.
On the other hand, I’m not doing anyone any favors pretending this is not the hardest work most of us will ever be asked to do. It is all-consuming in a way that is hard for an outsider to understand and those brief glorious moments when the horror is held at bay never last long enough.
The people not going through it don’t get it, and they expect you to feel bad about their worries and all you can think is if I had your worries I would be so fucking grateful but they don’t get it, and why should they? They tell you that you are so blessed and God wouldn’t give you more than you can bear and also, everything will work out in the end, and one more thing? It’s a wonderful life lesson for you! And—if you don’t mind their saying?—maybe you should get some sleep. You’re looking a little crispy around the edges. You can’t take care of your child if you don’t take care of yourself!
You grit your teeth and you don’t commit violent bodily assault on these people, no matter how much you want to, because you will go to jail, not them; there is no mandated jail time for being a dumbass. When they babble the universe doesn’t close a door without opening a window! after you tell them about your daughter’s most recent setback, you do not throw them out said window because that would be wrong. Although you have a hard time seeing how it would be wrong and part of you thinks the world would be a better place, or at least a quieter one, if you just did it. But you don’t. Then they whine about how you don’t seem to have as much time for them as you used to. You’re lucky I didn’t throw you out the fucking window the universe opened for me, you don’t say. I’ve been very busy is what you do say.
They have milestones for which they send out invitations, graduations and weddings and ordinary things, and you have doctor’s appointments and hospital stays and IEP meetings and terse e-mail conversations with your ex, whom you once adored, when you were still capable of adoring other people.
You have my daughter has lived to be fourteen. And for other people that is ordinary. They have cake and go back to watching television.
It is a deep betrayal by the universe to hurt our children so badly before they are born. It is so unfair, so breathtakingly unfair, that I cannot spend more than a moment contemplating it before I start to cry. I can’t pretend to understand it and I certainly don’t believe it has some deep and profound meaning; that is just more horseshit, designed to make the people who don’t have to go through it feel better about watching us who do.
I am not, in this regard, a person to emulate or look up to. I am angry a lot; people accuse me of being bitter, like that is some personal failing that negates everything; I should somehow have managed to maintain a sweeter outlook on life after all of this, as if it’s not enough to have to watch my daughter suffer the torments of hell but I should also be nice about it, about the blood and the pain and the fear and the dread, the deep, dark dread, while also working a job and paying the rent and doing the dishes and trying to get laid at least once this decade and watching every dream I ever had die in the wake of the damage. Well, fuck them.
If I sometimes seem at peace, it is a fraught peace, one that has come at too high a price: a magnificent and terrible peace. It has cost me family and friends and every last ounce of my youth. And I mean that literally: I can no longer stand having people in my life who don’t get it. And most people, no matter how well meaning, don’t get it. The ones who do get it aren’t necessarily the ones who have also been through it, but they are the ones capable of lifting their eyes from their own navels for a few moments at a time. They are people who recognize when they are shoveling the horseshit, and then they stop.
They are people who do not expect me to be other than I am, broken in all kinds of awkward places, and trying to find a fragile tremor of light in all of this. And it is those glimmers of light that I write about most of the time, for they seem like small victories, hard-won after a long battle in the night, worthy of appreciation; I write about them so I can remember them when I am down in the darkness again, alone.
I would never have chosen this life. Never. I would have picked Malibu, and blonde, and blithe.
And, Lisa, if you are reading this, I am sorry if it sounded any other way. And thank you for helping me remember that not talking about the hard parts is just another kind of betrayal.