Life in the Wilderness

You feel your obligation to a child when you have seen it and held it. Any human face is a claim on you, because you can’t help but understand the singularity of it, the courage and loneliness of it. But this is truest of the face of an infant. I consider that to be one kind of vision, as mystical as any.

from Gilead by Marilynne Robinson

Today I woke up and held my son for a long, long time. I’d been gone for three days and missed him terribly. Driving through Boston on the way to the airport I told Kate that it was so difficult, so impossible even, so disastrous to imagine feeling that way forever. The missing, the ache. We agreed that say what you will about heaven or where we go or visions of the afterlife, the truth about someone being dead is that they’re gone from this life, right now, here on earth, with you. That particular person has been removed from your particular life. That’s the gut punch and there is no balm for that, no platitude, no prayer, and I would argue no belief even, that will fix it.

After a brief scare with the lack of a ticket at Logan, and a very nice woman who ended up fixing the problem for exactly $967.00 less than she was supposed to, I was waiting at the gate when a woman began crying hysterically, screaming, saying you can’t do this to me again. You’re ruining my life. Oh my God I can’t believe this. I literally thought somebody had died. As it turned out, the woman had been told she needed to check her luggage because the overhead bins were full, but the last time she flew the airline had ruined her laptop. I had zero sympathy for her and boarded the plane in a teary huff. When I saw her sit in the row in front of me, still squawling, still hysterical, I thought about offering her a Xanax or perhaps handing her the weekend program schedule from the Tay-Sachs Family Conference I had just attended: symptom management, secrection control, choosing an end of life plan, memorials, support group for grieving parents. The man sitting next to me pointed at the back of her seat and mouthed, “FREAK.” I nodded.  The man sitting next to her asked if she was okay, handed her a tissue, and then the real story came out; for years this woman had been homeless, jobless, and her computer, her laptop, the one thing that had allowed her some freedom, some ability to look for jobs, had been ruined when she flew home for a family funeral with money a friend had given her as a gift. The man next to me kept laughing but I did not. I was no longer in the mood for his jeers or my complicity in them moments before. I thought about what people will say about Ronan at the later stages, some of the names they might call him, they way I myself have used “retarded” in the past; the way people regard difference. And I thought, no, she’s not a freak, she’s someone’s child, and beyond that she’s a person.

Four hours later and the air on the jetway was like heavy cake. Texas. The Dallas airport, a place that I think is trying to be like Heathrow, same font used for the signs, same glossy stores lining the terminals, arrows directing you to the “toilets” instead of the restrooms. Through the windows of the above ground skylink train whisking between terminals, the lights of the city dripped in the thick sky. I sat near the front of the train as if it were a carnival ride, and I thought about all the sick kids I met this weekend in Boston. I held a lot of tiny hands.

This morning I was getting irritated with the loud group of retirees sitting next to me at the coffee shop when one of the men stood up and said, “Okay, well it’s chemo day for me, so I’ll see you later!” and strolled away. We know so little about people’s lives, about what they go through. At least at the family conference where we huddle together and try to figure out how to manage and eventually eliminate all these terrible, insane diseases, everything is out in the open — all the misery, gallows humor, joy, fear, dread. As one mother said, “people talk about living each day as if it were your last, but that’s a completely exhausting way to live.” Indeed it is. Sometimes I sit with Ronan and think, “how can I make this moment more precious?” and then I remember another mom telling me that her best memories are about just sitting on the couch with her son – no additional meaning needed to be sought or found.

Taking a break from the conference to have a drink with Weber at the swanky Blu bar at the over-priced, complete-with-soothing-waterfall Sports Club L.A., I kept thinking about the daughter of my mentor at the conference. Two and a half and gorgeous. I thought about her when I was not at the conference, at night before falling asleep, and I had dreams about her that I can’t remember. Probably because she is the closest to Ronan in age, and because her mother and I share a similar philosophy of care approach, but it wasn’t just that. It was some quality in her face, in her person, that indicated how totally and completely and unabashedly and proudly she was loved. I told Weber I needed to go to Claire’s, where I bought glittery bows and bracelets and necklaces. In the T, walking to the conference, having dinner, I kept having visions of her face and Ronan’s, these two particular faces. And then I kept thinking that this particular group pf parents might be the best in the world. No, nobody is going to say wow, you did a great job with her; you must be so proud after she graduates Harvard and becomes the leading radiologist in the world. Nobody is going to say you raised him right or you raised him wrong because there will be no “raising.” There will be no “proof” of what was done for these children, no pats on the back from society or community or friends. These parents will never make the mistake of living through their children, but listening to them discuss the minutae of their children’s care and you can’t help thinking that each one should write a book about how to be a parent, truly, in the ways that matter most.

There are many horrible things about living with a terminally ill child, but the hardest is the way in which our parenting approach approximates an old archetypal story but without the redemptive ending: when you child is dying and there is no treatment or cure, it feels as though you are sending them out in the wilderness, only there is no returning from the exile. Nobody is passed over. Nobody is freed. The faces of those children and their parents are brave and beautiful because they are singular faces. The parents know their children’s bodies and needs on every level; they learn to read the subtlest cues and find moments, even in the later stages of the disease, when elements of the child’s personality shine through. And I  know their stories now, their desperately human stories, that are the worst kind of sad, but, in some moments, absolutely laugh out loud funny. What they do is as sacred as it is misunderstood.

There is something profound and liberating about naming the unspeakable, giving it voice, letting it live in a room, stretch its legs, burp, be obnoxious. I can sit in a group discussion and talk about “growing into a diagnosis” and about pulmonary care and how studies have shown that when people can no longer eat, when their bodies shut down, there occurs an incredible physical euphoria that is the opposite of pain or discomfort. And then someone might tell a joke. And then someone will tell their story about the final days with their child, and the importance of hospice care and night nursing. Sitting in circles, loving their kids, suctioning lungs or feeding or rocking or comforting, all of those people were children once, and now they’re the fierciest of parents. They were or are somebody’s child. Their children have the most powerful claim on them. And all of them have a claim on me.

This is it: although having a terminally ill child has, in many ways, ruined my life because Ronan will die, and talking with these parents helps me strategize about how I will possibly manage his death, which will be forever for Rick and for me, and these parents are teaching me about practical considerations (doctors, care options, alternative treatments) as well as all the impractical considerations (how to be strong and hopeful in the face of hopelessness) but more than anything else, each face in that circle, infant or adult or otherwise, is teaching me that learning how to live with death – that final wilderness from which none of us returns — is also about learning how to live. A vision, then, absolutely, and as mystical as any.

10 responses to “Life in the Wilderness

  1. This is poignant and well-said, as always. Welcome home…

  2. That you for your beautifully honest post. All the platitudes in the world won’t help anyone’s suffering. Sometimes It Just Sucks and we are better off admitting and accepting that.

  3. Alma Luz Villanueva

    Well, I cried here and there at the truth of all that you say…that when someone dies, leaves their body, they are no longer with us physically, that’s the one we have to accept, then it seems their spirit nudges into your own spirit and you carry them for as long as you live…and since we’re writers, they live a long time after we’re even gone. I’ve had people at readings (also in letters, emails) thank me for my Yaqui Indian (from Sonora, Mexico) grandmother, Jesus Villanueva, who left her body when I was twelve, so 54 years ago she’s alive in them, and always in me.
    When my five year old step-son was still mourning his mother who died at 27 from cancer, also my best amiga, and we’d had many talks about her leaving, bringing out photos of her to remember (she was so beautiful)…one night he woke me up, found him sitting in the dark, he said, “I just want to see her one more time.” And so did I, we both just cried, the truth of it, how we truly heal, to admit the staggering loss…but he had to re-mind me. This is longer than I meant it to be, Emily…I feel every word you write…xoxo

  4. I read your posts daily with great love for Ronan, as you’ve offered him to all of us, and for you and Rick. Thank you for the aching sad, and the staggering grace, the love. Somehow I don’t feel comfortable posting comments, so this is my first. I wish, though, I could somehow post tears. Or any kind of wan echo of the different ways, each day, your words make me feel.

  5. dear E,,,, you always remind me of what is real. And yes everybody has a story. I always remember when I “label” someone, that maybe they are in pain or have sorrow, or just a a bad day, always good to remember they as us try to make it through the day the best they can and have good intentions like we do. Thank you for bringing me back to the roots of reality. You are such an inspiration and my hero. I hope you will never forget to ask for anything anytime anywhere. And…. how much courage you and Rick have. I hold you, Rick, Ronan and your amazing family close to my heart.

  6. I used to be afraid for my dying child, channeling every element of my own angst and insecurities through the crucible of the Tay Sachs experience. At some not terribly significant moment along this journey, however, I realized that the suffering was only my own. As the vehicle that is my daughter’s physicality grew weaker, her essence, I realized, was no less diminished. If anything, the beauty of what some call “soul” seemed to be far more powerfully reflected through a simpler prism. Still later I later came to understand that the intensity of that light was not truly any greater now than it was when my daughter retained her physical faculties. Rather, I was simply too distracted by those meaningless measures of refraction to fully appreciate the magnificence of the source.
    It has been a wonderful, miserable journey that has challenged me to revisit every previous notion of how I define progress. My daughter does not need to “progress.” I do. I am.
    This month, Rachaeli will be 8 1/2 years old. I feel fortunate to be such a slow learner.

  7. Thanks for reminding me that there are deep oceans underneath the surface of what we see in others. And for naming and holding the mystery of death-in-life. x

  8. this is beautiful

  9. Nancy Conyers

    I don’t know how you are writing these blogs, Emily. With each one, i’m stunned and speechless and awed by your ability to say what you are saying. If there is any beauty in any of this, it’s that you can put words to something that makes no fucking sense at all. You are forever my inspiration, and my Zumba teacher. Love love love, Nancy

  10. Thank you for putting “everything out in the open — all the misery, gallows humor, joy, fear, dread”. This moves me: “It was some quality in her face, in her person, that indicated how totally and completely and unabashedly and proudly she was loved.” I wake up at night thinking of Ronan, and from far away I can see how fully he is loved and how he soaks that love and comfort in. I can feel his richness. And I think to myself that this is everything: life, purpose, god, meaning, it.
    I agree so strongly with you that “learning how to live with death – that final wilderness from which none of us returns – is also about learning how to live”. My parents years ago lost their child to a terminal illness: brought him home for his final days to die in peace. They loved him to his death and managed his care. It is years later, but they are at peace. The sadness is still there, but overshadowing the sadness is the grace, the time he we here and the imprint he made on our hearts. They speak of him not as a loss or tragedy, but as a gift and blessing. As if his life was as it should be. Maybe this is coming “home”? I believe one day the pain will lift for you and Rick, and alongside the ache will be awe and gratitude. Sending love to you guys.

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