On Distancing and Danger

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.

19 responses to “On Distancing and Danger

  1. Marilyn Michelson

    From one who has looked in many a window, thinking that the light thrown forth is brighter and somehow more important than the light from my window, I deeply appreciate your ability, Emily, to so eloquently and sincerely express “coming to grips” with the universality of our desires, our needs, and our notion of personal shortcomings. It is surely times like the one you’re facing that bring us to our knees and yet somehow give us the opportunity to rise up and continue on. Bless your supporters, bless you, and bless your beautiful baby boy. I am grateful for your tenacity to so skillfully touch the hearts and minds of all who read your blog.

    I read your memoir, Poster Child, as my daughter, Brittany, who just graduated from the Antioch program, recommended it. It is, like this blog, a testimony to your courage and determination to live life honestly and fully, not as a victim. You are a remarkable young woman, for whom I have the greatest respect and admiration.

  2. I’m not for passivity, but there are many occasions in life when we are called to bear witness because there is nothing more we can do. This post, Emily, speaks to me. And now I’ll just shut up.

  3. Alma Luz Villanueva

    Chogyam Trungpa, the Tibetan teacher, in SHAMBHALA, The Sacred Path of The Warrior, wrote…not a direct quote…(my traveling bible), That the greatest courage is to be sitting on your windhorse vibrating with fear, but to hold your posture, that’s true fearlessness…and then to ride. xoxo

  4. Arianna Jimenez

    I’m here, one of the many in your group of listeners, witness to your story. As always, incredibly moving.

  5. “Be kind,
    For everyone you meet
    Is fighting a great battle.”

    a quote a friend sent me –it’s from Philo of Alexandria, quoted in David Treadway’s memoir about his family’s experience with his cancer (Home Before Dark):

  6. Hey Emily Emily – Keep thinking of a great quote that I have always found helpful: “Traveler, there is no road. You make the road by walking.”

    Thank you for letting us walk this road next to you. Even if we cannot fully appreciate what you and Rick are feeling, I hope that it is helpful to know that so many are bearing witness.

    love you. xoxo Weber

  7. As always, your words are beautifully chosen.

  8. I’m stubbornly heartbroken for the raw deal you’ve been handed – completely unfair. I’m thinking about you all.

  9. Thanks for putting this in words…

  10. I am so honored to be your witness. I am in awe of you! Your grace and intelligence will guide your road. Much love.

  11. Thank you, Em. x I see you. xxx o-E

  12. Emily, Sharing your painful journey into the unknown wilds is a gift to all those who know and love you–it leads me to mindfulness of every day to reach for remembering, treasuring, and meaning.

  13. Im always heartbroken to hear of another tay-sachs diagnosis. I relive the pain over and over again when I read parents struggles with the new diagnosis. Diagnosis day was the worst day of my life and I spent the next 5 years loving and caring for my tay-sachs child. Molly Grace was a beautiful soul who knew nothing but love and kindness, she was my hero and the strongest person I have ever met. It took awhile, but I soon learned to stop grieving while she was alive and focus on everything beautiful about my angel. I saw a glimpse of Heaven every time I looked into her beautiful innocent eyes. This past Spring I had to give her back to her wonderful creator. I was blessed with well over 6 years of having her in my life. She gave our life meaning and taught us more than anyone else ever will in a lifetime. My husband and I live in a small town where there were no programs to provide terminal children with in home nursing care, so we cared for her working different shifts so one of us could be with her at all times. Everyone who met her realized the value of life and all the things they took for granted. Her older sisters are more compassionate wonderful people because they had Molly in their lives. I miss her terribly and even though she is no longer physically here with me I fall deeper in love with her every day, just like she never left.

    As you have already realized, you will never be alone in your journey. I would not have made it without the knowledge and support of those tay-sachs moms.

  14. I thought you might like this – the bit she says at the end about the difference in the songs – the staying and going- made me think of your post and your family, your lovely boy-o.


  15. XOXOXO

  16. Youre so cool! I dont suppose Ive read anything like this before. So good to find someone with some unique thoughts on this subject. realy thank you for beginning this up. this web site is something that is wanted on the net, somebody with just a little originality. helpful job for bringing something new to the web!

  17. Sometime you might find Pema Chodron’s book, When Things Fall Apart, useful. Her words narrated the biggest grief of my life which, thankfully, was not the loss of a child, but like all huge griefs WAS the shattering of the vessel of meaning that each person constructs of their life. A much loved passage:
    “No one ever tells us to stop running away from fear. We are very rarely told to move closer, to just be there, to become familiar with fear. I once asked Zen master Kobun Chino Roshi how he related to fear, and he said, “I agree. I agree.” But the advice we usually get is to sweeten it up, smooth it over, take a pill, or distract ourselves, but my all means make it go away. We don’t need that kind of encouragement, because dissociating from fear is what we do naturally… We feel it coming and we check out. It’s good to know we do that– not as a way to beat ourselves up, but as a way to develop unconditional compassion. The most heartbreaking thing of all is how we cheat ourselves of the present moment… Sometimes, however, we are cornered; everything falls apart and we run out of options for escape. At times like that, the most profound spiritual truths seem pretty straightforward and ordinary. There’s nowhere to hide.”

    May you have many moments in your son’s life when you cannot hide and are “nailed to the present moment” (Pema’s phrase), where you are courageous by staying intimate with fear, with his mortality and with your own, and not running away from the time you have with him. But it’s okay if you do run. You’ll come back.

  18. “And they sat with him on the ground for seven days and seven nights, and no one spoke a word to him, for they saw that his suffering was very great.” Job 2:13

  19. I would like to tell you about a game I used to play as my husband tried to (and eventually did) die. I had a big commute to the hospital and as I passed cars I would attach each a story. Some good, some bad, some dramatic, some as beige as my office wall. It helped to remind me of the humanity that I seemed so far away from at 27 years old.

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