I tell her the Buddhist parable of the mustard seed – the one that my dear friend Judith shared with me so long ago now. The story of the woman who has lost her son – who believes that she is completely alone in her grief. The story in which the Buddha commands her to collect a bowl of mustard seeds – each seed, he tells her, must come from a house that does not know loss. And so she goes from house to house in her village, asking for seeds. And the villagers feel for her and offer them readily. But when she asks if perhaps a son or a daughter, a father or a mother had died in their family, each and every one answers, Yes, we have lost a beloved.
And she discovers that there is no house – not a single one – that does not know loss.
Katie is rapt.
~ from my perfect date – Feb, 2012
No matter my good intentions to sleep each night, at sometime during the wee hours, I find myself keeping a vigil at my daughter’s side. Until two weeks ago, I let her sleep alone without a second thought. But I can’t unknow what I know now. And what I know now is that while my daughter sleeps, an electrical storm rages inside of her precious head. What I don’t know yet, and may never completely know, is what that storm looks like, and what kind of damage it leaves in its wake. Scarier still is that I also don’t know yet (and may never completely know) what form that storm may take when the winds pick up without warning – when stressors weigh on her defenses, when hormones lay siege on her already overloaded system.
For me, not knowing means being afraid. It means sleepless vigil after sleepless vigil that bring with them fruitless exercises of Please God, make it stop and Why My Girl? And further down the road, deeper into the valleys of the night, the thoughts swirl about in the dark – about the relativity of pain – and fear. About how we treat one another – about how we construct and fortify a dangerous competition of who hurts the most and whose burden is the heaviest. How we don’t see just how much energy it takes to play a game that no one can ever win, and in which everyone loses.
The other day, Katie and I talked about forgiveness. We talked about how people who have harmed us — really, truly harmed us — don’t deserve a place in our hearts. And how, until we forgive them, until we let go of our anger, we’ve allowed them to dwell within us. It isn’t until we forgive *them* that we unburden *ourselves* of their presence within us. Forgiveness, I explained, is not a gift to the one being forgiven nearly as much as it’s a gift to the one forgiving.
And so it is with the weight of insistence that our pain is greater than anyone else’s, that the world’s travails pale in comparison to our own, that no one else could be as worthy of help – or pity – as we are, comes our own destruction, and the destruction of community. Comparison takes energy. Insistence is exhausting. Judgement is toxic.
And internalizing all of that, even when — or perhaps especially when — it’s inverted back on oneself, is disastrous.
I wrote earlier about feeling a searing sense of survivor’s guilt. About how it appears that once again, in the middle of a potential nightmare, we’re dealing with one of the least awful versions of something that might have been really, really awful.
That should have been an absurd thing to write – to feel. It should have at least sounded like a completely inane reaction to the situation. But no one batted an eyelash. Because feeling guilty when we dodge a bullet is the byproduct of this crazy paradigm that we’ve all tacitly agreed to uphold. Guilt is the successful internalization of the competition of suffering.
We live in a place where we can access some of the most highly trained, specialized doctors in the world. We have insurance that allows us to see them. Cars to drive to their hospitals. Sufficient money to pay their bills.
I know what all of that means.
And I am far more grateful for it than I am able to adequately express to you. God knows though. I tell Him every day.
In the meantime, it’s why I write and why I sit down with politicians and why I jump on flights that I can ill-afford to Washington. Because I get it. And I appreciate it. And I believe, more than I believe anything else, that every child — every human being — deserves access to all of those resources, to all of that care, to all of the HELP that we have when the shit hits the fan.
But no matter what I say or where I say it, and no matter HOW I say it, someone is bound to point out that they have it worse. And undoubtedly, they do. By a lot. I don’t know how to tell you that I understand, but I really, really do. I live and breathe and dream the stories of those in and around my world. Children and adults struggling to communicate their most basic needs, engaging in disastrous self-injury, smearing and eating their own excrement. Fighting and dying of diseases that make no damned sense. I take it all in. Every morsel of it. I swim in it. Sometimes I drown in it.
And I try, my God, I try, to make it better where I can.
But so too, it has to be okay for me to say that I’m hurting. That I’m scared. That the word epilepsy is terrifying. That I feel like I’m living through the entire process of diagnosing autism again – of digesting what may have always been but that now we know. Of figuring out what it means, and how to help our girl. That this time, it’s different. That this time, there’s no moment when we’ll find out that it’s not really all bad. That, like autism, its challenges come with gifts. This is epilepsy. The only gift I can find at the end of this tunnel was the sheep that the tech gave Brooke after her EEG.
But to the point, it doesn’t matter what it is – it has to be okay for me to say that I’m scared. Not for me, but for everyone whose pain and fear and uncertainty are just as real as anyone else’s. Because IT’S NOT A COMPETITION. Because every one of us lives here at some time in our lives. And until it’s okay to say, “I’m scared,” or, “I’m hurting,” without the certainty of someone somewhere shouting (or quietly, snarkily implying), “You don’t know the first thing about fear!” the people who need help won’t ask for it. The people who are desperate for support will be afraid to tell anyone that they feel like they’re drowning. because somebody else’s water will always be higher.
But we all know that we can drown in mere inches of water when we can’t find the surface.
So it has to stop. The idea that a parent of typical kids ‘has no idea’ how hard it is to parent a kid on the spectrum. That a parent of one kid on the spectrum ‘has no idea’ how hard it is to have TWO kids on the spectrum. That a person with Asperger’s can’t possibly fathom the experience of a person severely disabled by the challenges of classic autism. That someone without children could never have pain and heartache of their own every bit as real and deep and life-changing as a parent’s.
IT’S NOT A COMPETITION. There’s no prize for being the worst off.
But there ARE prizes for the realization that we’re in this together — support, love and a fighting chance.
Ed note, I’d been rolling this around in my head for a week or so before stumbling upon Landon’s post referring to Michael John Carley’s thoughts on what appears to be essentially the same topic. I purposefully did not read Mr. Carley’s words yet as I wanted to formulate my own ideas first, so any similarities are coincidental. I am, however, going to read it now. Or soon, because now I’ve got to get in the shower and get ready for work.
Ed other note: I made the picture above before seeing that post as well. Great minds, I guess. 🙂