On Memory

On Memory

Today T took photos of us as a family – me, Ronan, Rick, Mom and Dad. Rick and I have decided that we don’t want any video of Ronan because we’d torture ourselves later, watching the clips over and over again. I have a tendency to get obsessed with things (books, projects, people, Law and Order re-runs), so I certainly don’t need one more thing to add to the list. As usual, Ronan smiled only after T left! I have never gotten a good “portrait” from Rones; he’s only ever smiled on his own terms, and there’s at least a partial physical explanation for this. Last Monday we learned that he has a “cherry red spot” (unbelievably, that is the technical term) on the back of each retina. (When the eye doctor said, “Oh boy,” I knew from his tone that what he’d discovered was serious.) Basically, when Ronan looks straight ahead he sees a big black dot in front of his face. (I thought to myself later, in a surreal moment of levity, “It’s like looking at bad modern art ALL THE TIME!”)  I used to get frustrated that Ronan wouldn’t look directly at me but instead looked to the side to smile at me. All along he was just doing what he could, in his own way, functioning within his limitations – something I understand well. Even though I was absolutely hysterical at the doctor’s office in a way I have never been in a public place, when the doctor said, “That’s how he sees you, he works around the spot,” I understood that Ronan and I share this ability to work with what we’re given.

My friend M, who lost a child at birth, has been telling me about how she gave herself permission to grieve in just the way she needed and wanted to, regardless of people’s opinions. She just did it. The first time I met her (she was my husband’s friend before she was mine) she cried when she talked about her son, whom she’d lost many years earlier. I loved her for that; for sharing that kind of raw feeling with someone she’d known for less than an hour; for letting that emotion happen without apology. She didn’t care what I thought (and of course I immediately loved her.) All my life I have been so concerned with what people thought of me, how they viewed me; I was so keen to be sure that nobody would pity me because of my leg so I threw myself into physical challenges and just figured it out. Now, frankly, I couldn’t care less. Public pools? No problem. Short skirts? Bring it. At this moment in my life I have never felt more exposed. I thought workshopping part of my memoir was difficult the first time I did it. I thought getting a divorce at a young age was a challenge. I see that person from a distance and understand that she is ridiculous.

I dressed Ronan in a pair of my old overalls for the photos after my mom told me a story this morning (and because I wanted a picture of him wearing something that was once mine). When we lived in Nebraska, Mom was out on the porch with me when a woman walking by on the street approached her and started asking questions: “What’s wrong with your baby? How come she looks that way?” I had just been fitted with my first wooden leg – a scary-looking contraption made of cloth, metal and wood, a leg right out of the Iron Age (circa the late 1970s, in this case). My mom told her about my disability and the woman replied, “Well, I guess you can love her anyway, even if she only has one leg.” My mom was angry (obviously), but she didn’t say anything because she believed the woman to be deranged somehow, or “not quite all there.” I imagine I sat there drooling and banging a big spoon or a little shovel against the concrete (no fancy toys for us back in the day!), oblivious. Of course I have no memory of that event, but I kind of dig that lady’s honesty. Say what you think. Ask the impossible questions.

Yesterday Rick and I went to the saddest yoga class in the world. We thought it would make us feel a bit more human. I felt weak but heavy, and like I was dragging myself through molasses to do the poses, which are hard enough anyway. The room was warm and quiet, even with the back door open. The prayer flags strung from wall to wall fluttered slightly. I wondered (I understand that your mind is supposed to be empty during yoga, but that has never worked for me), if the air felt so close and charged because of what we’d just witnessed moments before. A woman was leaving the class with her mat under her arm, her face sweating, and as she said goodbye to the instructor she suddenly gripped her and began to sob. The studio carries sound wonderfully (which is why the gong baths are so terrifying) and the whole space was full of this woman’s grief or sadness or anger or relief or whatever was bubbling up out of her. I felt so much compassion for her, and whatever the problem was (however great or trivial) I wished her peace, and I vowed to remember her honesty, and to remember that image of two people holding one another as the rest of the class quietly filed out into the hallway.

When I was going through my divorce I cried in public all the time. I was living in Austin, finishing my MFA, and I just let it rip at plays and poetry readings, at traffic lights and parties, and (for some reason) in front of the wide selection of juices available in the cold case at the HEB, and sometimes in the cereal and cracker aisle. (“Why are there so many choices?” I would shriek into my cell phone at L or M.) Some people reacted cruelly, but most people did not. I got a lot of hugs from strangers at that Austin HEB, and I kept getting them that summer on the subway when I was living in New York City where I had a temp job opening mail for a stressed-out hedge fund manager at Citibank. (The job was enough to make you cry; I prayed that a letter from a jilted lover would be slipped into the pile, something juicy, but no. Just bank statements. Just numbers, numbers, numbers. A few potentially threatening letters from legal offices, but I couldn’t fully translate the legalese.) Once, while I sobbed into my latte on the Path back to Jersey City, a book in my hand, a woman put her perfumed hand on the back of my neck and said, “I heard it was super scary but is it SUCH a sad book?” I was reading Fast Food Nation.

In some way, these fleeting connections are as deep and meaningful as reunions, even though they happen between strangers. I never officially “met” those who extended their kindness to me in Austin or NYC; I didn’t meet the woman at the yoga studio. I don’t remember their faces and I never learned their names, but I remember so clearly being inside a moment with them before we both moved on.

Years ago I was walking down a sun-washed side street in Antigua, Guatemala. Kids rocketed by on little pipe-cleaner bikes. Nobody drinking coffee at the outdoor cafes reacted when the active volcano in the distance let out a soft puff at irregular intervals. Passing an open doorway I saw a man giving a woman a private salsa lesson in a small room; the man watched the woman’s face as she counted softly to herself in English and dust spun in the sunlight on the floor around their moving feet. As I approached the end of the street I watched a woman wearing a ragged backpack and long braids cross the cobblestones and knock on a door. She looked weary but eager. She waited for a moment and then knocked again. I stopped and waited too. Suddenly the door opened and a woman with long dark hair flung herself into the backpacker’s arms. They pulled apart and looked at each other, hugged again. The two friends or lovers or sisters rocked from side to side, the woman’s arms barely able to reach around the other’s huge pack, reunited.

T has promised Ronan a visit with his chickens, and he will come back to take more pictures as Ronan grows and, I guess, as this disease inevitably progresses. People might think it’s freaky or weird, but I want pictures of him at every age, in every stage. I hope the photos will help me re-experience the moments with Ronan, or help me recall little details about his face. I hope each time I see those captured images I will experience a reunion. I hope I feel the way you do in that moment when you hold in your arms the person who has traveled a long way, for hours and hours, maybe all night, maybe all their lives, to reach you.


8 responses to “On Memory

  1. I lived in Antigua, Guatemala years ago; I suddenly remember that volcano and the pipe-cleaner bikes too. You’ve got this way of making me remember things I had forgotten — even things I never knew. Though this Ronan business seems like such an anomaly in certain ways, the way you’re handling it seems so right it almost looks familiar — faithful to nature, motherhood, good sense and a good heart. I can’t help but think in a whisper, “that is exactly how I would want to do it.” Ronan, in one tremendously important way, is a very lucky boy. Never forget that. We are lucky too. Thanks for sharing your mazy mind with us; I have a feeling we are bigger people for it. We’re here when you need us, Em. Don’t forget that either. xo

  2. Alma Luz Villanueva

    Tan hermosa, so beautiful, Emily, you’ve filled my eyes, my heart with the spectrum of what it is to be a human being, and a mother…I would also take those photos, every one, for the reasons you describe. In fact, that’s why I do take the photos, to re-member and re-member. In your last wonderful post (how are you doing this…), you mentioned a kind of search for books…you might want to read now or eventually, Isabel Allende’s ‘PAULA,’ the story of her life/memoir she told/wrote to her daughter Paula as she lay in a coma until her death (transformation). And Allende also doesn’t ‘sugar coat’ it yet the journey becomes a transformation through the sheer, raw grief/rage to something I can’t even describe…you’ll have to read it. Plus, you get to know about her life from the beginning, the story she was telling to her daughter, Paula. Take the photos, enjoy every moment even when you’re crying…
    Almaluz xoxo

  3. So beautiful, Emily, how you’ve expressed those brief encounters with love and beauty out there in the world, moments of connection and compassion, seeing with your heart.


  4. Alison & Mark Lang

    Dear Emily and Rick,
    The beauty and anguish of your words reflects Ronan’s little life so exquisitely, we are bereft of words to comfort you. We are holding you, all three of you, gently in our prayers; and rocking you back and forth, as the big breakers crash over your spirits, saturated with chaos and grief. Anything we can do to walk through this valley with you, we will. If you want to talk or Skype… or scream in unison, we are here.
    Sending much LOVE from NYC to you three bravehearts….
    love, Alison and Mark.

  5. Dear Emily,

    I have wanted to comment sooner but I just can’t find words. For my sadness, shock, anger or for the awe and affection I feel when reading YOUR words. So I just have to tell you that this blog is such a gift, both to the many who know you and your family and are holding you in our collective hearts, but also to many more who are reading and will read this for years to come. It will inform, inspire and support all of us. But best of all, I think and hope it is bringing you comfort, and I am deeply grateful for that!
    With love,

  6. Dear Emily, Rick and Ronan
    we grieve for you all – knowing that the future is pretty bleak though i am sure there will be some bright rays some days. I am so glad you are taking photos – I am sure these will be as important as other memories you will hold of him in your mind. When I was working in a hospital for people with learning disabilities in the 70s and 80s very few parents had photos of their children in the home, except for one that I clearly remember. Their only daughter was by then in her 30s, had severe learning disabilities and autism. They had gone to a professional photogragher and he managed to capture a really beautiful pose of her, which had pride of place on their sideboard. She did not always look like that but on that day she did. Love and thoughts. M

  7. I wish I could give you and Rick a hug RIGHT NOW. A permanent one. Mum was telling me that a friend of hers took a picture of every day for a year, after she had heard her husband had cancer. Not always of him, but something that evoked a memory, often mundane, from each day. She didn’t want that year they had together, to slip by. For me, there’s something about voices. I would hate it if I didn’t have recordings of my loved ones voices, especially at different ages. lots of love. Other Em

  8. Dear Emily and Rick and Ronan, I found your blog through my friend Lana, whose beautiful daughter, Carmen, passed away last year. She had Tay-Sachs. I don’t know you but I am holding your family in my thoughts. Sweet Ronan is such a beautiful baby boy. I cannot imagine the pain, grief, confusion that you must be going through. I wish I knew the right words to say. I don’t but I am sending you many virtual hugs from far away. xoxo, Rashmi

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