Dear Dr. Frankenstein

Dear Dr. Frankenstein

Today, after his bottle, I sat Ronan on my stomach while he laughed and lunged at my face. Noses are a particular favorite, although the holes in ears are also appreciated, and lips are an endless source of amusement. Fingers? Amazing. For one long moment he soberly studied me (he has always been a philosophical dude), before breaking into a wide, wet smile that is more like a silent laugh. (He would have been a great silent film star.) Over this past week since we received the diagnosis (“Babies with Tay-Sachs can live three years with good care,” the doctor intoned), I have often been afraid to be alone with Ronan, terrified of the grief, sadness, helplessness, anger and fear that touching his head or his hands or his face might provoke in me. But this morning I held him without crying. Yesterday I waltzed him around the room without catapulting into the future. So there was progress. At least in the morning.

Knowing that Ronan will not live long I can’t help remembering moments from my pregnancy. Last winter I was at Yaddo, an artist’s colony in upstate New York, feverishly trying to finish a draft of my novel before Ronan was born. I went a little feral during that time, typing away in my little writing room – a sun porch that was clearly better suited for summer residents, with three walls made entirely of floor-to-ceiling windows. Until I finally admitted that the austerity of the cold was not assisting my creative process and decided to ask for a space heater from the kind caretaker who resembled (exactly) Walt Whitman, I wore long underwear beneath corduroys and a wool sweater, my heavy down coat and pink fingerless gloves (perfect to type in!) knitted by T. One morning, just before dawn, when I hadn’t spoken to a human person in nearly three days and hadn’t slept more than two hours a day in nearly a week (when I had restless, almost violent naps full of vivid and labyrinthine dreams), I felt my stomach muscles begin to shake and then move apart. My ribs started to ache; when I touched them they were electric, ropey wires of vibrating bone, and they, too, were on the move. Muscles cracking, bones stretching. Ronan. The two of us alone in that room; you probably could have seen the lights in our windows from a long way off.

I had been talking to my friend P the evening before, and because I hadn’t slept or left my writing room since then, our conversation was fresh in my mind. We talked about babies and parenthood and his sweet son, E. It was fun to share happy news with him. The last time we lived in the same city we went to baseball games and walked around and around the stadium in the heat of a Texas August (dodging huge bugs, always those enormous bugs) as P reminded me that I had a long and interesting life ahead of me after my divorce, that I had done the right thing by leaving an unhealthy relationship, and that it made perfect sense, in the meantime, to binge-shop at the Diesel store on Guadalupe and order every single color of glittery eye shadow available online from Sephora. No judgment. Just quiet expressions of hope, just walking and sweating and thinking ahead, moving forward.

On that morning at Yaddo there were a few skinny deer nosing around in the scattering of snow outside my window, unimpressed with my artistic ambitions. A terrified-looking squirrel ungracefully slid down an ice-covered branch and then scurried out of sight. I could see D’s light on in West House; he was also awake and writing. Ronan kept kicking and elbowing and I felt my stomach grow beneath my palms. I remember thinking that Ronan must have heard his name mentioned hours before and had decided to make himself known, to take up a bit more space. Here I am. I remember saying out loud, “I see you.”

This fall I decided to rewrite an old novel in epistolary form. I immediately thought of Mary Shelley’s Frankenstein. Unbelievably, we did not have a copy on any of our bookshelves (probably one of many books stashed in the Wyoming storage unit, that graveyard for books), so I checked it out of the local library and found it just as creepy and disturbing and wonderfully melodramatic as I had almost two decades before.

Some speculation surrounds the origin of Shelley’s idea for her story of a “modern Prometheus” (she was obviously familiar with the Greek myth), and of course the book’s epigraph is from Paradise Lost, but I like to imagine that the initial creative spark was a bit more complicated. Mary Shelley’s mother, Mary Wollstonecraft, author of the hugely influential early feminist text, A Vindication of the Rights of Women, died giving birth to her daughter. That itself is a kind of ghost story, a nightmare tale. And Mary herself would not be immune to her own private horrors surrounding creation.

While summering in Geneva, Mary and her friends experienced a weird burst of freakishly cold and nasty weather. As legend has it, in order to pass the time (no Real Housewives of Zurich or French Riviera Shore for these astute literary minds; they had to make do with imagination) they sat inside around the fire and read one another German ghost stories, and then they each agreed to write their own story. Mary, 18, was the only one who finished hers. It was published anonymously the following year, in 1818.

I lived in Geneva for a year during the late 1990s, in an enormous, light-filled space snuggled into a concrete building worthy of any Communist apartment bloc (When I watched The Lives of Others, I immediately thought of my place on Avenue du Soret). My rent was covered (I still have no idea what it was), my salary was high, and I traveled all over the world for work and with friends (who themselves were from all over the world). I fell in love and then out of it (a lot); hiked some incredibly steep mountains, drank a lot of cheap French wine and ate a lot of stinky cheese, and made one of the best friends of my life. I was 22.

So I can imagine Mary et. al in a spacious apartment in the old city, windows covered with heavy drapes (drafts were dangerous in the 1800s!), walls hung with oil paintings of hunting scenes, dusty tapestries (more hunting scenes, but with different dogs), and maybe a turret or two: 19th century swank. Bells would peal from local churches (but austerely, in a very Calvinist way, befitting the city’s religious history) and the smell of chocolate and coffee would still manage to permeate the air, even when the rain fell hard and for days.

Geneva is a slick place with a weird little underworld. Rolex and Cartier and money money money (and chocolate, of course), and then, crouching near the chestnut cart in the train station, one of the many asylum seekers, waiting to be granted permission to stay in Switzerland in order to be avoid being sent home where they might be captured, imprisoned, murdered, or all three. I have no idea how they managed in Geneva with its astronomically high price points for just about everything. Through these two groups – the natives and the “others” – we temporary residents moved.

The native Genevoise were notoriously private (and not pleased when a train was, literally, one second late. Many times I stood on a trash-free train platform, and when the 1:10 did not arrive at 1:10, half the people waiting would look at their watches and mumble, qu’est ce-que c’est?) They seemed uninterested in getting to know the slew of foreigners arriving each autumn to stay for a year or two, maybe five, working at the United Nations or other affiliated agencies, before moving on. (I learned this by eventually making friends with J-L and D, a gorgeous gay couple who lived in the apartment building next to mine.) The uniform for men (and women) seemed to be this: well fitting slacks (black or gray); a collared shirt (pressed) beneath a crew-neck sweater (high-quality cashmere or top-end wool); expensive leather shoes (sensible pumps for women, loafers – no pennies! – for men); a decorative scarf for women (100% silk, perhaps in a floral pattern, but a demure one) and a wool scarf (no plaid) for men. A nice watch bien sur. The teenagers riding the buses and trolleys took slightly more calculated fashion risks (jeans!), and threw around their creative French slang: Baba cool (translation: “super cool”) and Ca c’est super-vachement bien (direct translation: “cowly good” and I think the equivalent of “awesome.”) People, air, public transport – all were clean and efficient. (As E once said: “I can’t wait to get back to London and see a bloody dirty bus”). My downstairs neighbor once knocked on my door and demonstrated how I should walk across my floor so that she wouldn’t be able to hear my footsteps above her head (obviously, even the thought of this was quite tragic for her).

So there’s Mary (Mary Godwin at the time), chilling out by the fire with her lover, Percy Shelley, Lord Byron, and his pregnant lover Claire, in odd summer weather described politely in some accounts as “ungenial.” The seasons have gotten confused, and these brainy literary types are fascinated with current scientific attempts to “animate” dead matter (a movement called, appropriately, “galvanism”), and from this convergence of factors the urge to write ghost stories sprung. Mary claimed to have written Frankenstein in a “waking dream.” I had plenty of those at Yaddo. Dreams in which falling rain became thick ropes of hair, and then rubber, and then iron bars. I could navigate the morphing rain but not escape it. I imagine Mary writing her supernatural tale in such a state, not yet knowing that these intellectual and philosophical discussions about the animation of dead matter would mean something different to her, years later, as she survived (or did she?) the death of three children. When writing became her only comfort.

Frankenstein is an ambitious man, obsessed with science and creating “natural wonder.” He beavers away at his creation, literally stitching him together (and here Mary must have been thinking of the psalmist who thanks God for being “fearfully and wonderfully made”). But instead, the monster looks funny. This experimentation with “the unhallowed arts” did not work out the way he’d planned. The monster is not little-baby cute. He has yellow skin and bulging veins and is twice the size of a normal man. Frankenstein flees from him, horrified.

The rest of the book is a dramatic caper (complete with Dickensian moments of coincidence in the plot) with the creator actively seeking to destroy his creation and vice-versa. An innocent child is murdered and the wrong person is blamed. Frankenstein falls sick, is nursed back to health, and is eventually imprisoned (he picks up a long-suffering wife along the way). He stumbles into much of this trouble in part because he refuses to listen to his creation, who is pursuing him (initially, at least) with a single, relatively simple goal: to be loved and acknowledged. The monster (who is never given a name, but is identified in the text as “wench” or “it” or other equally pleasant names), learns about human love by sitting in the woods, literally set apart, watching a human family giving and receiving tenderness, experiencing grief and anger, moving through various stages of life and relationship. When he finally reaches out to them in the spirit of human connection, he is violently and mercilessly rejected. Hurt, alone, and super pissed off, he heads out with a new mission: to find his creator and then kick his ass for abandoning him in a world where he finds only rejection.

I had a complicated relationship with the book when I first read it in junior high English class. I identified with the characters and the emotions in the book – and what young reader doesn’t love that heady experience – but I was also deeply uncomfortable that I identified more closely with the monster than with Frankenstein. I was the new kid in a new school in a new state. Each month we drove to another state where I had adjustments made to a wooden leg that leaked and creaked and gave me disgusting sores; I was poked and prodded by a creepy prosthetist whose skin reminded me of a wax statue, and I was x-rayed and examined and sized up. The process felt monstrous and made me feel freaky. (Going through TSA checks each time I fly is not such a dissimilar experience.) We also happened to be reading Frankenstein during the basketball section of gym class. I could not run, but I had to take gym, so the teacher devised this brilliant solution: At the end of every session, I would be called out onto the court, where I would stand at the free throw line, a little bit unstable (artificial feet were literally foam blocks then) as the rest of the class threw balls at me, one by one, and collectively counted how many I could sink. I spent thirty minutes sitting on the bleachers, shivering with anticipation as I prepared for this task, trying to imagine myself out on the court, nailing 20 perfect free throws: swish, swish, swish. As it turns out, I did sink a lot of those balls; I always was a good shot.

In junior high I empathized with Dr. Frankenstein. All that work, and then poof! A monster in the house! Not a cuddly baby, not a child prodigy, not even a proper man. Who would want to be blamed for creating a monster that lives to wreak such havoc? Thinking about the book now, I want to tell Dr. F to man up and stop being such an asshole. Be a father already, because that’s what you are. You created this being (who was actually waiting and worthy of your love, and actually a pretty nice guy until you treated him badly) and then you abandoned him because you were scared and unprepared for the randomness that is a part of every creative act, and because his future was dangerous and unpredictable, and because he wasn’t a small, delicate-fingered, to-the-manor-born scientist with fancy ideas and a fancy Swiss pedigree, and people were going to look at him and judge him and then judge you. Get over it. Because – newsflash Dr. F.! – havoc happens on its own, without your clever machinations. Stand by your man, you ninny, even if he has greasy yellow skin and a big head and has to crouch down when he walks through doorways. Understand that when you die it will be the man you made and tried to destroy who weeps over your grave, his wish granted but his heart broken.

Several people have expressed to me the idea that because all parents want their children to be perfect, they have trouble imagining my feelings about Ronan’s condition (and, I guess, about Ronan). They wonder why we weren’t both tested for the Tay-Sachs gene, as if we’d given no thought at all to starting a family. The comments make me angry, and feel more about the sender than about Ronan, missives tinged with pity (which is useful to nobody) rather than compassion (which is always in short supply and needed by everyone). These comments were no doubt made in a spirit of support, and I understand that people have trouble knowing what to say or how to respond to people’s difficult or “abnormal” situations. I’ve been rattling off my life story to strangers in elevators for years when they’ve asked, “Oh, my. What’s wrong with you?” (Quick story about me, the leg, etc.) “Oh, uh, I’m so sorry.” (If there is a single phrase I could choose never to hear again in my life, it would be “I’m sorry.”)

Mary Shelley heard “I’m sorry” a lot no doubt: from her married lover, from friends and family who helped her bury her three dead children. Imagine the response to this letter from Hogg, a friend she wrote to after the death of her first child, a premature daughter:

My dearest Hogg my baby is dead—will you come to see me as soon as you can. I wish to see you—It was perfectly well when I went to bed—I awoke in the night to give it suck it appeared to be sleeping so quietly that I would not awake it. It was dead then, but we did not find that out till morning—from its appearance it evidently died of convulsions—Will you come—you are so calm a creature & Shelley is afraid of a fever from the milk—for I am no longer a mother now.

A woman, a writer, a creator, (and, I would argue, still a mother) speaking here, from inside a tunnel of grief, a tunnel that I am just learning to navigate, learning its exact size and shape and level of darkness and how that shifts from moment to moment. I wish I could go back in time and appear as a ghost who miraculously lights a candle in the middle of the night at Mary’s bedside; or show up in one of her waking dreams bearing a magic wand, like that fairy queen who gives Frodo a skinny stick to use “when all other lights have gone out.” Or maybe I’d just play John Lennon’s “Imagine” on a constant loop from an invisible sound system, the song that’s playing now on our stereo as I sit writing by my own fire.

It’s difficult – maybe even impossible — for me to imagine that Ronan is not, in his own way, perfect, if only because he is living the only way he knows how; he is living his life the only way he can, and there is a great deal of perfection – and rare innocence – in that. He isn’t going to look like the other kids; he’ll be alone at the free throw line in almost every respect. There are so many things from which I have no way of protecting him, thoughts that put me right at the thinning edge of sanity. But I can tell you that he will not be sitting out in the middle of a dark forest, lonely, perched on a log and wishing somebody loved him. Not my boy.

Ronan is mine. Mine and Rick’s. We don’t want him to be another, different baby. We can’t imagine not having had a part in creating him, or not having known him. We’re not running away from him.

And we never wanted him to be perfect. We wanted him to live.



11 responses to “Dear Dr. Frankenstein

  1. Powerful and brilliant, Emily. xo

  2. Your writing is brilliant. You are giving all of us strength. Thank you. Much love.

  3. Always a mother. ALWAYS.

  4. In my 42 years I have yet to understand what “perfect” is supposed to mean. Not just in an abstract or theoretical sense but quite literally, I don’t know what that means.

    I smiled reading about your free throws in gym class, especially since I was exempt from gym (against my will) due to my congenital heart defect. Crap, I’m still bitter about it! I felt terribly left out and resented being forced (brainwashed really) to see myself that way – as a girl who might be “at risk” playing a stupid game of dodgeball. Because I didn’t see myself that way. All I knew was that twice a year for the first 18 years of my life I had to spend an entire day at Columbia-Presbyterian Hospital, sitting for what felt like an interminable amount of time in pediatric cardiology, seeing the doctor, then riding the ancient elevator upstairs for stress tests and echocardiograms and EKGs – old school EKGs with the squishy rubber things that tickled my young skin and the goopy gel that never seemed to completely wash off. It was a mild nuisance to me, no more no less. (Well, the handsome med students pressing their stethoscopes into my chest was a nice plus!) But I never wanted it to define me, even though it did define me to my parents. But I knew and totally understood why. I knew then and I still know now.

    Awesome post, Emily. I’ve read it three times already. Ever since you started this blog I’ve been eagerly awaiting your new posts every night. Like Suellen and Abbe said, you’re brilliant.


  5. Frankenstein is one of my favorite books. I love teaching it. I love pointing out to students that it is our differentness that makes us lovable. It’s who we are inside that counts. I remember the nuns (once upon a time a long time ago, in a land far, far away) teaching that we are supposed to identify with the monster, with his desire to be like everyone else, to learn, to grow, to love. To fit. He is one of the most human characters ever written. He lives in all of us. Shelley so eloquently expresses the human need for love, companionship, compassion. We don’t sympathize with the monster, we empathize – identify. And we all know people like Dr. Frankenstein—seeking to create the universe rather than allow it. He seeks to bend all things to his will – his picture of perfection. And he seeks to destroy anything that doesn’t fit that closed picture. He is the monster in the text.

    For me, the lesson in the book is so valuable. We are who we are, perfect in our uniqueness. It is a hard lesson learning the difference between being perfect and being perfectly me. Because there is no one out there exactly like anyone else – we are all perfect. Unique. Individual. If we were all “perfect humans” – we’d all be the same. There would be no growth, no change, no self. Without self it becomes difficult to give to others and love is lost. What we love in others is usually the idiosyncrasies, the flaws, or the characteristics we feel we lack. I hope that makes sense outside my head, before coffee.

    When I first heard what was happening with Ronan, my response wasn’t why weren’t you tested, but rather why isn’t there more information for different populations so they would know they needed to be tested? And then the inevitable Irish response – why wasn’t I tested? Why didn’t I know that Irish-Americans were at risk here? I’m Irish-American. My next reaction was – why isn’t everyone tested? Part of the human condition is to seek understanding. If we can assign blame, that’s an easier process than taking the time and energy to learn. To know. To look inward. To evolve from the Doctor to the Monster. We can’t undo anything we have or haven’t done – all we can do is the next right thing. And you’re doing that.

    You don’t have to be perfect, Emily; all you have to do is be perfectly Emily. Your strength and courage are humbling. Be that person.


  6. …. love this post. love you ….

  7. There is anger in my heart when I read that people had in ANY WAY suggested that your beautiful boy is ANYTHING but perfect or that in ANY WAY you were somehow neglectful for not getting tested. These are perhaps the same people who think that all tragedy can be averted. Ronan is beautiful and perfect and I can tell from the pictures he is so very happy with life and his parents.

    I saw my sister go to brain damage and I didn’t love her one bit less as those anoxic spots took over and she couldn’t control her bladder or the movements of her hands. That’s not how it works. And if that’s how it works for those people (pardon me for bringing down the literary discourse of your blog) fuck them.

  8. Thank you, Em for this blog, and for everyone’s comments. I keep looking forward to each post. You know, one of the things I remember about the Genevois was my sense that they liked rules and liked following them. No lawnmowing on a Sunday? They would phone the Council if you did so, to complain. Noise after 10pm in your flat? I remember the neighbours coming round to complain too (in the middle of a bottle of wine and some stinky cheese)! But I think I’m starting to see you can’t follow someone else’s rules in the situation you’re in. So, on testing. I guess the testing is an effort to screen out pain in advance – pain of loss, pain and difficulty of supporting a kid who needs more support than others. Trouble is, would you want to screen out the joy and delight that your child brings too? God, these are the impossible decisions we have to make in this age of science. But the idea that you MUST test? That you should compulsorily do something like that? And those decisions that must arise from a positive prenatal test? That’s not exactly easy either. Crikey, none of this is easy. And I’m not sure we can tell each other what to do about these tough tough decisions. I DO know that I love you for loving Ronan just the way he is. That’s how every kid should be loved. (And I DO know that you’ve got Geneva down just about right! Alors. “Allons-y, Let’s Go!” As your step class instructor used to say.)

  9. Hi Emily, I am Emily cousin, i was sent your blog by Maralyn all very complicated, any way I have a 2 year old daughter who was born very traumatically and then we found out she has down syndrome. I am on a different journey to the one I thought I was on and you are on a roller coaster. I have found your words quite beautiful. I have happy days and sad days and can only understand a tiny bit of what you are going through. I have learn’t in the 2 years of Katie’s life that every child is different and every child with a disability is unique, there presence in this world is important. Important to educate others about disabilities and illnesses and to change peoples outlook.
    I understand when you say about people asking if you had be tested, we were tested for down syndrome as we thought it would prepare us for a child with disabilities, my test came back 1 in 560. thought nothing more of it, had a very small baby and nothing could have prepared us for a child with down syndrome as the disability is so vast. Our Katie is just Katie and your little boy is yours and keep enjoying him.
    My thoughts are with you and your family.

  10. Alma Luz Villanueva

    “We never wanted him to be perfect. We wanted him to LIVE.” And Ronan, like the rest of us, can only live in his own unique way, exactly. Exactly. I felt/feel like that about my four grown children- there is no other way. Gracias, Emily, for re-minding me of this truth… Almaluz
    *My oldest amiga, over 40 years, we shared mothering in San Francisco- her youngest child, a daughter, Meliza, just died from cancer at 35. Meliza outlived her prognosis by eight FULL years…she traveled, went to music concerts, did tons of research on the cancer, helped others when first diagnosed. Meliza was so perfect…and when mi amiga thinks of her daughter she can’t help but smile, the JOY she gave her, her father, always, perfect.

  11. I so completely agree with you on this: “(If there is a single phrase I could choose never to hear again in my life, it would be “I’m sorry.”)”

    Thank you for sharing your words. I will keep reading them all. Sending big love.

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