On lies of omission

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.



  1. This is so raw, I have no words. There is no fairness or justification for this suffering. We put God's name to explain all this as we dont know how else to explain it. Why would a just & fair God do this? There is no answer.
    I dont know what it is to feel like this everyday.
    Somehow, somewhere I hope u find your moments of solace. To help you go on with life you have been given, not the life you wished for.

    If you are interested, this is a book by a journalist father in a similar position – http://www.harpercollins.co.in/BookDetail.asp?Boo

  2. Last week I was one of those who posted that you are so blessed. And you are. As am I. My life is not so different from yours. I have children with incredibly serious, life-threatening health issues. Most people are unaware of this. It is not obvious to the outside world. It presents as something else. I spent the worst days of my life last winter when one of my children was hospitalized for only a fraction of the time you have endured. Our bank accounts have been drained. The ongoing situations prevent me from holding down a job. We do more with one income than most people can even imagine. Although we are now in debt – yet again.
    I am disgusted by a local family who has health issues not so far from our own and yet the parents do the bare minimum, spending most of their time staring at their own and each other's navels. It continues to disturb me.
    I used to work out regularly with two girlfriends and then just one and now its just me. They blathered on and on and on about the most insignificant horseshit in their lives. I couldn't take it anymore.
    My daughter and I spent the Saturday before Halloween chasing from store to store, doing regular errands and finding just the items for her Halloween costume. At one point she started pushing the steering wheel saying, "Hey, isn't Dairy Queen down there?" I wouldn't have missed the day or the moment or the covert ice cream stop with her for anything. It was such a blessing. A few days later my world came crashing down again reminding me how fleeting those moments are.
    In the last year you posted a comment about being a writer:
    "Being a writer is a hard, confusing, thankless kind of life, except for the times when it isn’t. It’s just that those times are never when you expect they’re going to be."
    Last mother's day I posted it as my facebook status (with credit to you) but I changed "writer" to "mother."
    You said it yourself: Its hard and thankless and it makes us into who we are – for better and for worse. Except, that is, for those times when you can see through all the pain and find those moments. Its those moments that sustain me, that pull me through when it all comes crashing down again.
    I see it not as a lie of omission, but as the inclusion of the good among all the bad.

  3. I wish I didn't but I understand. All of it. Every. Last. Shred. I am, however, far more bitter than you and angry and so very sad and depressed.

  4. Few people are comfortable with the level of raw pain that you live with. They need happy endings, they need reasons, they need to try and make it better because they can't simply just be wtih the pain in you.

    I hate that Jessica has to live this; that you have to live this.

    I know there aren't any happy endings here. But I will still wish for them anyway.

    Nobody ever really gets what they deserve, do they.

  5. Some of us come here because in compairson our lives are perfect and we need to be reminded that life is a gift and that while everyone has crap in their lives, my 2 lbs of shit may actually fit into a 2 lb bag and perhaps I should take my head out of my ass and drink a large cup of shut the fuck up. What I do know is that after reading much of what you write it makes me try a little harder to be a better mom and while I can't make anything better for you I can thank you.

  6. Wow. Incredibly powerful writing, Jennifer. Reading it, I get the sense that nothing I've gone through in life can come close to the pain you've felt, the challenges you've faced and overcome. I'm so glad I know you.

  7. I have spent the last two days reading every post on this blog and your words have reached out through the screen and are like fingers around my throat. Clearly I don't know you or your daughter. But your stories have shaken me and inspired me and they haunt me.

    I want to say to you, well done. Everything.

    And about this, "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…" – you have succeeded. In the very, very slight way I am able to know her through your voice, I cannot see Jessica as anything OTHER than her own person. So unique and extraordinary in her way…big, strong, beautiful, and wise.

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