Island of the Mad: A Novel

by Laurie Sheck

  But what my mind and reason told me was different from what I felt.

  My skin was still hot. I was starting to feel dizzy. For several days Frieda’s eyes came back to me, smudged black as that last time I saw her when I turned to her but couldn’t tell if she saw me. As I held this newest letter in my hand, I felt those smudges slowly spreading until they were black water—it seemed almost endless—and my body inside and beneath as I tried to swim toward her word tend, her kindness and all the ways I had hurt her, her hands covered with dirt, the newborn child still alive and in her arms, or the child drowned or buried, or lying in its broken bones, or lifted by Frieda and carried out of the woods into daylight where Marie sat on her rock or walked among the cattle with her stick and Myshkin’s waterfall still fell inside him—

  Dear A, \

  As soon as I started the Introduction—The positing of behavioral phenotypes has come into fashion with—the black print beneath the magnifying glass reminded me of the Venetian streets I saw from highest up while flying, though not beautiful like them and much more rigid—those streets I couldn’t begin to make out without swooping closer down. Signs and intersections, closed dwellings like small traps below me. The article’s printed words (small traps) were cold, more body cast than fragile, broken bone.

  How could I possibly find you in those words? What could they begin to tell me? I was sure I wouldn’t find you.

  I told myself you were like the Master’s vanished pages. The ones that burned before Margarita could reach into the fireplace to retrieve them. That all along I should have known this.

  My temples ached, it was hard to read through the glass eye. I didn’t want to continue.

  But then I thought of Bellini ferrying his servant across the water, singing, I thought of you in the office, scanning, standing for many hours though it’s hard for you to stand. And of Bulgakov rewriting his book from the beginning. Of other arduous things: Dostoevsky’s years in the prison camp, his definition of the real and the ways he faced it in his books even as others labeled him extreme, the plague islands you can still glimpse from Venice (they are that close), the many lives in the many books I scanned. I even thought of the one almost certainly still on his rock on the island, his head festering and spoiling, the carved traps inside him.

  How long did I sit by that window? I enlarged several words at a time, then moved on to the next cluster, held it under the glass. Underlined. Highlighted. Circled back when I had to.

  And all that time the blackness didn’t come. I could hardly remember it being so long away. Though I told myself this meant nothing—

  /

  But after I read for a while, though the magnifying glass grew heavy in my hand, I didn’t want to stop. And as I read, I remembered how something broke in me that time of my first blackness when suddenly I couldn’t see. But what did it do to your mind to live in a body that broke from the beginning, before words had even entered, or a feeling of wholeness.

  I see you standing in the office.

  Your back is yours, not mine. The plain fact of it. No roses inside it.

 

  Dear A

  I couldn’t fly to you and I had no right to find

  is it wrong to learn the details that belong t to you

  x-rays protect certain meals

 

 

  Dear A,

  I copied down some of what I read. It’s on the other piece of paper. I hope I’m not wrong to send it

  I am so

  I am so tired

  But there was no paper.

  I pictured her too tired to pace, too tired, even to imagine the window, its lilacs, the Master’s torn coat and burned pages, or Woland’s assistant offering his lotion to Margarita.

  In reading of my illness, was there a way she had also become more like Dostoevsky who never would have seen my hump as filled with roses? Once she saw my back as mine, not hers, and the roses left her, did her darkness clamp down even stronger, more frightening?

  She sat in her room in her real skin and had no way to fly or turn invisible or turn partly into me., her back just her back, the prions hurting her brain further, her room just a room, wherever it was, and with no way of leaving.

  Was anyone even there to take care of her? (For a second I thought of the tape that held her glasses together.)

  My skin was flushing even more. A grinding dryness had settled in my throat.

  I told myself I wanted to download the article. That it wouldn’t be hard. Except for the author’s name, I had all the basic information. I would see for myself what she’d been reading so painstakingly with her magnifying glass beside the window.

  But I kept hesitating. I brought it up on the screen, closed it, brought it up, closed it again. I wasn’t sure I wanted those words coming into my eyes, though I also knew that like steel rod bone, they were already firmly in.

  My night was restless. Taut bands of heat slackened and then stretched from my right eye to my shoulder and then into my right hand. Taut bands clenched in my chest. Sweat moistened my forehead and my temples ached. I tried to think of her and tried not to think of her. (I was wrong to send you…picked up the magnifying glass…my back is not your back…If you go there I will write to you, I promise…) I had downloaded the paper but hadn’t yet read it. As soon as it was light I took her letter from the envelope to read again and this time found on its blank side faint chains of words in pencil lines so thin they were almost invisible:

  you learn certain metals

  Why were the words in pencil, and so faint? And so few of them, so scattered? What could you learn certain metals possibly have to do with my illness?

  She had underlined a different sphere of perception. Was the article claiming that’s what happens to people like me, but what exactly was a sphere of perception?

  If perception is “the process or state of being aware”; “insight or knowledge gained by thinking,” then why divide it into different spheres? And why place me inside one?

  (I remembered reading “the universe of disabled persons in our society.”)

  Spheres, universes—those terms like the discomfited glances I saw as a child, when strangers glanced at me with alarmed half-curious eyes, partly wanting to stare, party wanting to quickly look away.

  The next day, another envelope came, and inside it other scattered words:

  I worried even more that she’d grown weaker, sicker. Was this all she could manage?—near-ghostly words faintly penciled, atomized, too fragile.

  The bones in my left wrist were broken, and two ribs, and my right ankle. And one of the three bones inside my right middle-ear—I forgot what they were called—maybe malleus, incus…I couldn’t remember the third. I had broken one once before as a child.

  I still worried about her, thought of her faint as her pencil marks, her books beside her blurring or completely dark, the magnifying glass by her side that, if she could see it at all, might seem like the plucked eye of an enormous bird. But then I also began to wonder if I could be wrong that the scattered words were signs of weakness and increasing sickness. Was it possible they were some form of unlocking, her sentences releasing…And then, as she’d wanted, she’d no longer be trapped by the idea of an ending, the forwardness of time, completion…

  The waves of heat kept spreading through my skin…

  …my turning to you without speaking, this slow darkening inside me…

  And still I kept wondering what learn certain metals could possibly have to do with my illness.

  Though part of me wanted to delete it, I brought the downloaded article up on the screen and started reading. At first I read quickly, impatient with the all-too-familiar words I was finding: physical restrictions, isolation, environmental factors. A boy’s voice unexpectedly caught me:

  You’re lying there in a bed in a full-body cast and you’re alone. You’re a child, and you want to play. But what have you got to play with? Then you realize you have your mind. You t
alk to yourself. You observe….My mother and father were in the kitchen. I could tell you what they were doing, whatever room they were in, how many steps they were taking, which shoes they were wearing. I could feel when sounds got born. At the least little sound, I knew what was making that sound….They’re in the kitchen, and you learn certain metals. If they picked up a fork, if they picked up a spoon, or laid a spoon down—different sounds between a fork and a spoon. Different sounds between a ladle and a knife. A cup. Which cup? Some are made of plastic and some ceramic. You occupy your mind.

  His pronouns shifted as mine often did as a child. Was I Ambrose or Anselm?…Was the steel rod inserted into my leg, or his, or yours?…Was he lying in the infirmary or was I, and he the one standing outside peering in at the body cast…And the precise site of the deformity in the bone—who did it belong to as they probed for the operation? Did you or I or he feel the rodding?…I felt his observing mind grow so focused it turned into pure sound. He listened as his mother and father walked in their separate lives in the kitchen wearing their clearly identifiable shoes, and the clock ticked unnecessarily loudly, and the cup understood it was a cup—it possessed a distinct sound all its own—and the fork understood it was a fork, and the spoon it was a spoon…but he, who had turned into pure listening and then into pure sound as he lay in his bed in the full body cast, kept slipping back and forth from near to far, from there to here, from “you” to “I” to “you”…He could find no single place or word to hold him.

  The waves of heat were coming back again, I’d almost gotten used to their slow building that never crested but grew loosely undulant like the lagoon’s shallow water.

  The infirmary walls were swaying and melting but still standing. I understood that they would stay forever, no matter how long they burned, no matter how high the flames or what the flames were fed with, or how much wood or gasoline…or how empty the beds…or if all the caregivers vanished and there was no cup to know it was a cup and no fork to know it was a fork, and no footsteps or loud clock. The walls would still be there and the boy would still be listening and then turning into sound as he taught himself each lock, each pair of scissors, each set of keys, the different metals.

  As the waves surged and then released, I wondered if I’d ever hear from her again:

  …I am looking for you in the corners of the poorest districts, in the rope factory’s narrow alleyway, the crumbling streets beside the women’s prison…I want to look for you on the calles near St. Mark’s and among the small stone bridges…even the closed rose inside your name is white now…how can this whiteness be so strong…what if this flying means that you will never see me…

  Dostoevsky was sitting in a small, cramped room in Switzerland, or was it Italy? The wood had burned out in the stove, it was almost morning. His skin was sallow, his right eye bruised from a fall some days before. The seizure had left him too tired to speak but he refused to stop writing. He knew he was about to break Nastasya’s hands, there was no way to avoid it. Rogozhin would do this and he wouldn’t stop him. As he wrote, he remembered his arms lowering the white death-shirt over his head and naked body, but at the last minute the guns were withdrawn, there would be five years of hard labor…On the way to the prison camp they stopped at Tobolsk where a bell from another town was in exile, convicted of sedition, its sentence was eternal silence. He remembered a man chained to a wall for eight years who after his release grew afraid at the sound of grass, unfolding flowers. And another who worked in the fields and touched a boy’s face in kindness. Though the stove had gone cold the room was growing hot, then hotter, and when he put down his pen he realized he was in Venice but there was no way he could have gotten to Venice, and he knew no one there. He was looking for a notebook, he was on the Island of San Servolo, he was having a seizure, he was falling. The air was red, he was on the floor, he was thirsty…And my walls were growing hot like Dostoevsky’s study, then red as Titian’s cloth, then redder. Someone was flying above me, her skin was invisible but I knew she was there. Twelve trees were swaying in a courtyard. And in a room overlooking them a woman who could barely see was being read to, until she wasn’t being read to anymore and she knew she had to go on alone, and she parted the green curtain alone.

  My sheet was drenched with sweat. My right ear was pounding. The walls shivering, leaning.

  A week passed. I had taken medicine, had rested, gotten stronger. My ear no longer ached, the red waves abated.

  I was ready to get back to the article. I still wondered what she thought as she read it. What happened when she arrived at the section on euphoria she’d been eager to see. But when I looked at the computer screen, my sight was blurry, a black spot floated at the edge of my vision. I could take in very little:

  The walls were leaning in again. I didn’t feel hot. I didn’t know what was happening.

  Dear A,

  \/

  Remember when I wrote you about finding those letters in The Idiot? I said the writer sounded clinical, almost business-like at first, but soon she was on a hill tending cattle, and then she seemed to be turning into Dostoevsky…In a way this article was like that also. It begins by dryly laying out the basic data: number of subjects interviewed (fifty-five adults) etc. And it makes broad assertions: certain behaviors are “genetically determined.” It uses terms like “secondary phenomena,” “behavioral phenotypes,” “genetic environmental interactions.”

  Such ugly words, but I brought them under my magnifying glass, read them cluster by slow cluster.

  Then I came to one brief paragraph that laid out the broad parameters of your illness, and gave sources:

  Glauser, Wacaster, Antoniazzi et al, Cherval and Meunier.

  Maybe these names mean something to you. Maybe one of them even examined or treated you when you were a child, or performed an operation, but I don’t think so. (It is hard for me to imagine you letting anyone near, it is so against your nature, but now I realize you must have been prodded and poked at often…It seems in such children’s lives there is so much solitude and isolation but almost no privacy…I think of your averted eyes, your silence…)

  I read that afflicted children can routinely suffer over 100 fractures before the age of 20. This is not uncommon. And the breaks are often deforming. I should have known this, but it’s hard to absorb the fact of a body routinely breaking—to truly understand that this is real.

  In one sub-section, maybe it is “Profile of Subjects” (many aspects and concerns overlap from section to section), the author points out that a small, quiet sound, even music, can shatter the delicate bones inside the middle ear—this has been documented. These are the smallest bones in the body. But of course you would know this.

  I can see now there are so many things you’d have no choice but to know.

  Some of what I read was very strange. Under “Behavioral Phenotypes in the Literature” the article states that people with this genetic mutation tend to “have a kindly benevolent face.” It even cites a source (Dilts et al, 1990). I learned such thinking is part of the field of “behavioral genetics”—one major proponent is a man named Money.

  My favorite section is “Response of Subjects to the Stereotyped Features of Osteogenesis Imperfecta”—in which the subjects, all now adults, recall themselves as children (and of course this means all the remembered children survived).

  There’s a boy who lies alone in his room in a full body cast and teaches himself the distant sounds of different metals. He’s the one I think of most. Another writes to Jacqueline Kennedy, asking for a wheelchair. She says she’s ten years old and “tired of being carried everywhere like a baby.” Another learns to read x-rays by age four: “My doctor wanted me to trust my own eyes the most in case I ended up in the hospital.” Another quotes her pediatrician cautioning her parents, “You let her go, she‘ll break up a storm, and she may not live. But if you tie her down and try to stop her, she will never have even a chance at living.” (As I read that, I reminded myself that
child is still alive.)

  I wonder what you would have told them if you had been part of their study, though of course you’d never agree to such a thing.

  This letter is much too long, and I’m too tired…I’ll try to write again tomorrow— //

  Dear A,

  As much as I wanted to tell you what I learned about the children, in a sense I avoided saying the one thing I think about most and that still leaves me confused. It begins with this passage:

  The increased rate of cellular oxidation that is a component of the generalized metabolic disturbance characterizing Osteogenesis Imperfecta may influence central nervous system and cognitive maturational patterns. Of special interest is the possible relationship to alterations in cyclic AMP [adenosine 3.5-monophosphate] metabolism…Thus, considerable evidence links OI with altered cyclic AMP activity…a mechanism associated with numerous forms of euphoria.

  As you can imagine, at first I could barely make my way through it. But when I finally did, at least enough to get the basic point (I looked up adenosine monophosphate etc.), I finally got to the word that startled me from the beginning when I read the Key Words.

  Though the article treads cautiously, it definitely implies that “subjects” who suffer from this particular genetic illness often experience euphoria, much more so than the “general population,” and a great deal more than those beset by other afflictions.

  At first this seemed absurd. (Of course, one could think of the saints…but this is different—they’re claiming this happens to a significant percentage.)

  But soon it becomes clear that quite a number of “highly respected” researchers insist this euphoria is in no sense an effort to compensate for the hardship and pain of affliction. It’s nothing psychological. The brittle bones and euphoria aren’t even really connected, except insofar as both are the result of the illness’s specific biological processes. Euphoria and the breaking of bones coexist as separate, unexplained, but very real manifestations of this particular genetic mutation.