On Distancing and Danger
Today Ronan is laughing. He ate his avocado; he read his books. He’s happy.
This morning I talked for two hours with a mom who lost her child to Tay-Sachs over ten years ago. We are a small, elite group, we Tay-Sachs moms; this past week these women have rallied mightily around me: calling, writing, and seeking me out. It’s strange to share such a life-altering experience – the very worst experience – with people you hardly know. As such, all formalities (thankfully) disappear. Instead it’s what do you want to know and you are not alone and yes there’s hope for future children and it is the worst thing you will ever experience and you will survive if not ever fully recover and you call me any time and ask me any question and I will tell you the truth. Straight talk. Just facts without sugarcoating and support without judgment. I try not to think of Sarah Palin at all, ever, but when I hung up the phone I thought of her annoying term “Mama Grizzlies.” (According to Newsweek, a mama grizzly is a conservative woman with “common sense,” who “rises up” to protect her children when she sees them endangered by bad policies in Washington.) Right. I’ve seen bumper stickers here in Santa Fe, land of bumper sticker politics, that proudly proclaim, “I am a real Mama Grizzly,” usually flanked by an Obama-Biden sticker and another that reads “Wolves Against Palin.” The women I’ve talked with would make grizzlies flee into the woods. Two words: Don’t mess. (Maybe a bumper sticker that says “Don’t Mess with a Mama of a Baby with Tay-Sachs?” in the tradition of the well-known state motto, “Don’t Mess with Texas?” Probably not.) I also get the impression that many of these tough women, like me, cannot sit through a National Geographic special without crying, and probably didn’t make it through an entire viewing of March of the Penguins either.
I watched part of The Lord of the Rings: The Two Towers at the gym (I nearly Stairmastered my way into the ceiling) because Rick insisted that I leave the house and get some exercise. Tolkien just won’t let me go this week. I watched the scene when Rohan is under siege and Eowyn tells Aragorn that all she wants is the chance to fight for who and what she loves. She does not want to be locked in a cage, helpless. She doesn’t want to huddle up with the other women and children in Helm’s Deep; she wants to put on armor and go into battle (and indeed she does, in possibly one of my favorite cinematic moments ever). She claims that she fears neither pain nor death, and the way she yields her sword (once rather dangerously near Aragorn’s private parts) makes you believe her. Aragorn tries to reassure her that as a shieldmaiden of Rohan and a daughter of kings, such an existence will surely not be her fate (and indeed it is not). Later, in a pre-battle dream, Aragorn whispers to Arwen, his luminous elfin lover, “The path is hidden from me.” She insists, in her dreamy, airbrushed way, that in fact the path is right before him; he’s already on it. In other words, he has no choice, but in that single line of dialogue he expresses his deep fear of the future (which is why he’s so irresistible – hunky and strong and vulnerable.)
So, these moms. We don’t want to deal with Tay-Sachs; we don’t want to lose our children. But here we are anyway, with swords we’re not quite sure how to yield, shields in hand, trembling at the threshold of this experience we unfortunately share. No platitudes (“What doesn’t kill you will make you stronger!”) no annoying schmaltzy, pseudo-Christian phrases like “When God closes a door, he opens a window.” (Someone made my mother a framed cross-stitch featuring this phrase, and it hung in our bathroom for years. As a child I found it bewildering. There was a little yellow cross-stitched bird sitting on the sill of his little cross-stitched window, tweating into the sunlight. I understood the phrase literally, and wondered why God, Creator of the Universe, would waste his time opening windows and doors. Really?) And yet adults with good intentions often offer up these false comforts to one another in times when no comfort is possible.
The loss of Ronan to this disease is against nature. Parents are not supposed to bury their children; an army with the sole function of defeating human kind should not be possible. And yet Tay-Sachs exists, and there are parents who must endure it. In Tolkien’s Middle Earth, thousands of horrible hulking monsters are on their way to Helm’s Deep, and the people of Rohan must be ready to give their lives in order to preserve hope for (and here’s a tall order, Tolkien didn’t mess around thematically) all of human kind. I have help from these Tay-Sachs moms, a group who cannot absorb my loss but understand it, and will not judge my choices along the way. Rohan is assisted by elves, dwarves, the long-suffering Hobbits, and the Ents, a mobile forest of ancient pissed-off trees. The world feels dangerous to me today, the forests literally shifting, the shadows achingly real, but in reality it has always been so; I have just been shielded from much of it. I love my husband. My parents and my friends love me, and tell me so. Every day I turn on the faucet and expect that water will come out.
But in this world, all over the world, every day, every minute, children and men and women are raped and beaten and abused and neglected and murdered. Some may be “innocent” in the overly simplistic way we understand it, and others may not be, but all of them suffer. I once spent an afternoon in Bangkok with a group of girls who had been stolen from their families as children and forced into prostitution. In Namibia I listened to a mother tell me that her daughter died of an illness that could have been cured with a simple antibiotic. A Liberian man I worked with had a brother who was forced to be a child soldier. There is so much of that world that Ronan will never know. He will never understand the hell that we are going through; he will never read about another person’s hell and try to imagine it. He will only understand our love for him.
Today I took Ronan for a walk along the arroyo path near our house. The air was cool, the sun was out, the sky was that ridiculous shade of blue that makes you understand why Georgia O’Keefe (supposedly) took one look at it, gasped to her friend, “You never told me it was like this,” and rapidly installed herself at Ghost Ranch. Yesterday when Rick and I walked on the path, farther than we ever have, it was a relief – this new thing, this different view. I’ve hard a hard time revisiting the places we went before we knew that Ronan was sick (the farmer’s market, certain coffee shops, the Antlers Hilton in Colorado Springs). Returning to those familiar places makes me feel distanced from myself and from my family; I see us in danger and want to shield us from what’s coming. As we walked Rick and I talked about how nice it is to live in a peaceful place right now. We both loved Los Angeles, but it was busy and loud, and our apartments were always cramped. Here we have skylights and two fireplaces and a backyard.
Along this part of the path the snow-touched mountains are visible in the near distance, flanked by the purplish hills. Today the sound of the dry, aching leaves scratching together was slightly autumnal. The sun was strong but not warm. Ronan quickly feel asleep, as he did in his first three months of life, when he would only sleep when I walked with him, and walk I did, for four hours a day, up and down the streets of Santa Monica and Brentwood, dripping with sweat while he snoozed in the front pack. He was smaller then, and when I saw my walking shadow I looked pregnant; as if I’d swallowed a basketball. Now he’s bigger; his legs and feet cast shadows.
So many times since Ronan’s diagnosis, when the term “losing one’s mind” begins to make perfect sense, I have wished that I could get into his crib with him, press him to me and return him to the womb where I would untangle his DNA, restitch it, rebraid it, fix it. Something. I stopped for a moment and took off his hood. I let the wind ruffle his hair and I looked at his sleeping face and I rocked him for a bit in the sun. We kept walking, into a tunnel strewn with dry leaves where both our shadows disappeared and we were alone. I stood still and listened to his breath and mine.
Our neighbor in Brentwood was an expert rose gardener, and I would often see him watering his roses in the morning and hear him speaking on the phone in Farsi to a relative or friend in Iran, where he was born and raised. One of the gentlest men I’ve ever met. He often cut roses for me and each one smelled differently; each one had some magical name. He recently wrote to Rick that he hoped we could find some peace in the middle of all this. Today I felt a momentary flash of peace, a great, still pause, and of course this fiercely tender love, and I thought this is all I have to give and I tried with all of my strength to let that feeling pass into Ronan, swallow him and I thought remember remember this.
My parents returned to Wyoming today and left behind a copy of When Bad Things Happen to Good People. I decided to flip it open, and I fell upon this quote. (During my Christian fundamentalist phase, which lasted about two weeks when I was thirteen, I was told that if I opened the Bible to a random page when I was struggling with a situation, I’d find the answer. I always flipped to verses that involved smiting or battles, which never answered my urgent questions about whether or not this or that boy liked me). I had better luck with Kushner, because here’s what he said:
I don’t think we should confront one another with our troubles. (“You think you’ve got problems? Let me tell you my problems, and you’ll realize how well off you are.”) That sort of competitiveness accomplishes nothing. It is as bad as the competitiveness that spawns sibling rivalry and jealousy in the first place…it would help if we remembered this: Anguish and heartbreak are not evenly distributed throughout the world, but they are distributed very widely. Everyone gets his share. If we knew the facts, we would very rarely find someone whose life was to be envied.
It’s easy to look through the windows of the houses along the arroyo path and imagine that inside someone is living a happier life than yours. I have done it many times. There is also a human desire to create distance between yourself and another person who is dealing with – or facing – great loss. People do this by saying, “I don’t know how you get out of bed,” or “I don’t know how you live.” It’s the reverse of looking into other people’s houses and coveting their expensive furniture, their funky lamp, their lives that – from where you stand – are more lively more interesting and just plain better than your own; instead it’s like looking at the one house along an interstate that just happened to be the only one flattened by a tornado, as if a fist had come down from the sky and delivered that single, deadly punch. But I am not the definition of heartbreak, nor am I particularly brave. As the mom I spoke with his morning said, “Life does – and should – go on.” Your world collapses; you pick it up. You keen and wail and then you run a comb through your hair and pick up the dry cleaning. Some nasty wolves from Isengard and an army specially trained to destroy your world and all its goodness start marching toward your safe spot and you prepare yourself. It’s not an issue of being courageous or fearful. It’s not about valor or vanity. You are already on the path and there is no good choice. Unlike Eowyn, I am terrified; I’m vibrating with fear, but I also know that I’ve spent a good deal of my life being dissatisfied; feeling that I wasn’t good enough or that I didn’t have enough of this or that or the other. I’ve been wasting time staring through other people’s windows, wishing. The time for that foolishness is over.
Today I received an amazing letter (a written letter!) from a friend; she reminded me of Job, and the way his friends rallied to support him during the shit storm period of his life. They were most helpful, of course, when they observed and witnessed and listened without offering rationalizations and false hope. It reminded me that our fear and sadness is shared, known and observed because we — Ronan, Rick and I – are part of a fierce and tender pack. Grizzlies? No. Claws and teeth will only get you so far; but silent witnesses rising up, just a group of listeners settling in to hear your story, could possibly save your life.