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fallingfromsleep · 8 years ago

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More Draw Well, Be Well Feb 27, 2017

If a picture can be said to be worth a thousand words, then it might be said there are some pictures that are worth a thousand pictures. A thousand pictures each, if not more.

As these pictures by my daughter remind me, there are some pictures that poignantly illustrate a way of being and living with just a few wobbly lines. These particular pictures of her’s light up a string of memories that I had once tried hard to forget, but which now, when viewed from my present age look so tender and beautiful.

These are the rapidly drawn images my daughter made as she recovered from a crushing fall. They helped her speed her recovery from the deprivations of lost sleep which shattered her and separated her from the people and things she loved, including drawing, singing and eating. When after four painful months of wandering in that lost place where unrecoverable sleep falls, she lifted her weary head and dull brown eyes, and drew as if her life depended on it. And what flowed from her shaking pens contains some kind of special meaning, some truth, and something that reaches into the deepest roots of my relationship with her. And they are pictured in distinctive, personal ways that even the most telling words cannot tell.

I call these pictures you see here my daughter’s reminders, partly because she drew them in a furious sprint in one of my old datebooks, whose grey pinstriped pages contained space for writing daily and weekly reminders.

These are the drawings I hope never to forget, not now as my eyesight blurs, or ever. I’m in my sixties, and my recall isn’t what it used to be, but I don’t need to be reminded that my 30-year-old daughter, Jenny Lily Gordon, grew up falling down, with a black eye here and a cut chin there. As her picture of the red and black seizure monster reminds me, this falling of her’s is a simple unerasible fact of her neurological condition, an imbalance up in the brain that has been known to break a bone, or trigger a run-away seizure.

Her lack of balance is a fact of her life. It means that my art-loving, song-singing daughter is forever sitting on the edge of a Humpty Dumpty-like wall. Will she fall today? This question can be permanently drawn straight to the tippy DNA staircase of her genetic disorder. Jenny’s is a rare disorder, with a name still freezes on our tongues: Incontinentia Pigmenti. It’s hard to say, and in my daughter’s life, still harder to live with. It effects both her skin and central nervous systems in obvious and subtle ways, but altogether her condition is boldly disabling.

“I hate my disability,” she tells us, “but I love my life.”

And one of life’s great pleasures, as these images poignantly remind me, is picture-making. “I’m drawing-abled” she says with a smile that reveals an abscence of more than a few teeth. Teeth that never came.

Jenny, for whom words and sentences don’t come easily, often creates interesting word combinations like drawing-able. She is though not like her formally trained artist mother, who can draw from life with great verisimilitude. Jenny, on the other hand, is someone with compromised grapho-motor control, who draws great life from picture-making. She draws freely, without rules or borders, without erasing, self-judgement or a wish to please others. My daughter draws not for art’s sake, nor for my sake, but for her own sweet sake.

There is a bittersweetness to these particular pictures, which she drew on a cobalt blue night when she was 16 as she struggled through the depths of a four month breakdown that followed too many sleep deprived nights at a special sleep away camp. remind me just how much joy she has always drawn from picture-making. For as long as I can remember she has relied on her pencils and markers to draw herself out of crippling seizures, head bumps and cuts. Again and again she has sped her recoveries from the tornado side effects of powerful medications, from the blacks and blues of painful bumps and bruises, and as was the case with these particular frawings, of a four month long breakdown following a torturous fall from sleep.

She has a compromised central nervous system which deprives her of the balance to stand or walk without falling. Using pens with minimal grapho-motor control can sometimes be frustrating, yet pictures come so easily to her. While her picture subjects appear to be off kilter and can be hard to decipher, they are amongst the clearest I know. They speak clearly to the power of picture-making; to the sheer pleasure, uninhibited joy, and calming sense of equilibrium that she draws from her fragile brain. How wonderful it is to be drawing-able, which allows her the liberty to give form to all kinds of ideas and feelings that might otherwise remain stuck in the upper shelves of her brain’s speech and language freezer.

“I have zero paper fright,” says Jenny, flashing a gappy smile that reveals spaces where quite a few teeth have never grown. “Some people have stage fright, but I don’t have that either.”

These pictures Jenny drew when she was 16 followed a long hiatus when she was unable to draw a single picture or sing a solitary song. She was slowly recovering from the losses of cognition and physical strength that came in the wake of her intense sleep deprivation when she made them. So of course they remind me, in a way that is impossible to forget, of that time back in 2009, when she painfully endured a long lingering fright of a most terrible kind. She was quite terrified, very weak, and suffered hallucinations at the start of her four month tumble from her rich memory bank. The devastating fall that she took from sleep while briefly away at a sleep away camp for teens with disabilities struck her down, and shattered her very sense of familiarity with her own world. She couldn’t find her connections to the people and things she relied on to compose a decent day and secure enough peace to find adequate rest at night. She had gone to that Godforsaken camp beautiful Newport, Rhode Island against her will. I had promised her that she would sail there, but instead she got sunk in that hard to locate place in the human mind where unrecoverable sleep falls. I blamed myself, though had the camp nurses been properly trained, we might have been able to catch her before she fell too deep.

steep obstacles she faced during her year-long recovery from a shattering fall from sleep had everything to do with her disordered central nervous system. This one in particular pictured at right reminds me of a very specific and troubled X-chromosome that’s sorely miwely to be radically altered by her Latin-sounding chromosomal anomaly. Today as I look at these pictures, which may appear to you to be those of a girl much younger than 16, I feel grateful. Because the lines and colors of her backwards facing rooster and the winged horse powerfully marked the beginning of her recovery on a cobalt blue December night. Everything she drew on December 27, 2014 serves to remind me how throughout her childhood years she relied on her pens and pencils to speed her recovery from a multitude of skin- and nervous-system problems; these were hard to understand or accept yet her picture making helped Jenny live through, and finally accept. Again and again, she’s relied on drawing and music to help draw herself back to steadier states of health and wellness after falling from the top of I.P.’s neurologically shaky stairs. Owing to her lack of cerebral balance, she will always struggle to stand up or walk without falling. As the science of genetics makes clear, I.P. is the mover and shaker of her life on thin ice, and it’s why her fragile brain couldn’t make a quicker recovery from the painful losses that followed her nights of fractured sleep. And why she’s grown accustomed to bruised cheeks and limbs, bumps on her head, cuts on her chin, and falls through her own consciousness.

Severe sleep deprivation falls among the greatest deprivations anyone can suffer. In my daughter’s case, her crash through her R.E.M. cycle at a sleep-away camp cracked her mental frame straight down the middle. Once her fragile brain’s sleep genie flew, there was no saying when her memory would fully return, when her tics and hallucinations would stop, or when her severed connections to all the people, places and things on which she relied to steady herself through a day, or sleep soundly through a night, might come back together again. After my daughter’s tossing and turning neuro-chemistry became thoroughly over shaken at that Godforsaken camp, her fatigued brain slipped onto a Humpty Dumpty like wall, from which I feared she had already fallen. There were just so many losses, but as these pictures she drew remind me, all her losses were eventually recoverable. Although remembering them has often been painful. After 12 years, these images occupy a permanently curious and joyful shelf in our minds. In time, all of her scattered pieces came back together again. But until she regained enough of her memory, which took four months, she was stuck in a hopeless limbo. It is these particular pictures of her’s that remind me of all her previous falls, including my own, as I often came tumbling down after her. Yet, above all, they remind me most of her many triumphs. Because these pictures mark the time and place when she first drew herself past the breakdown that froze her for 16 and a half weeks, separating her from laughter, joy, pleasure and comfort. And even after her connections were restored, it took a year before she was fully recovered.

It wasn’t until her memory was relit by the stimulus a bright red bookmark that dangled from my outdated appointment book as 2014 slipped into 2015 that she was reminded of her love of drawing. And with her lost memory now found, she drew for three hours over its grey pinstriped pages.

As I look at them 12 years later, run through my outdated appointment journal, remind me why she lacks adequate grapho-motor control; why she has impaired vision; and struggles with speech and language challenges, not to mention the poor equilibrium that makes movement dangerous.

I call these colorful pictures my daughter Jenny Lily Gordon made on December 27, 2014 my daughter’s reminders. This is because her rhythmic lines, atypical perspective, and other idiosyncratic qualities remind me of the meaningful connections and sometimes wry observations she’s made about her life while making pictures. They hold special meaning to me in the how they speak – in a way that words simply can’t – about the power picture-making holds, including the leverage it offers as a kind of reassuring counterbalance to her tippy, often uncomfortable life.

it’s why she’s grown accustomed to bruised cheeks and limbs, bumps on her head, cuts on her chin, and falls through her own consciousness. And why my daughter, now 28, remains sitting on the edge of her next fall. It’s this sharp edge which leaves her forever anxious, and from which there is no remedy, other than to forget it for a while, which, thankfully, picture-making helps her to do.

Now this picture she made (at right) was among the many she drew in a furious sprint to recover herself four months after taking a shattering fall from sleep. It shows a googley-eyed face and triangular head loosely connected to a dog-like body which rests under the weight of a an electrically charged boulder. She described it to me thusly: “No Joe, that’s not Gumby, that’s a freakin’ seizure monster. He’s a bitch. He flies through your pillow up into your head, makes you throw up, and hurts you everywhere.“ That’s a hurt she knows very well.

Jenny Lily Gordon’s “black and red seizure monster” along with her image of a busted alarm clock stuck in a frozen cube, remind me of many things, she knows well. And they speak to me in a way words simply cannot about the bitter and sweet life she’s led. A life she lives on thin ice, whose surface is slippery and always ready to give way. Yet, the icons and images that flew from her weary hand on the cobalt blue night of December 27, 2014, also remind me of why I have happily gathered these and other pictures of her’s together. They bring me solace, and hope.

Hopeful is how I felt as I watched her making them, seeing so clearly, despite my weariness after so many dull and listless days and nights, how her triumphant recovery of her lost pens and pencils helped her grasp who she was, where she’d been, and what she loved. worked to re-energize her. Once she had possession of her picture-making, her music returned. They had all dropped into that hard to find, and even harder to escape from place, where unrecoverable sleep falls. helped her to restore herself after one of the most painful four months of her life. when she lived in a restless limbo, filled with hallucinations, strange tics, severed social connections, and oddest of all, no memory whatsoever of what drawing and singing meant to her before she became severely sleep deprived. She didn’t draw a solitary picture, nor sing a single song since crashing through her REM cycle at that Godforsaken sleep-away camp in beautiful Newport, R.I.

Her seizure monster along with the friendlier figures, flowers, birds, flying caps, and her playful patterns of colorful icons and letters all remind me of the wonderful sense of balance and equilibrium that she’s been drawing from her pencils, pens and other markers since Jenny was first able to pick up a thick red crayon and make her first bold marks at the age of three. From that drawing-able moment onward, she came to rely on these instruments to enjoy a feeling of unbound physical freedom. And as she made her slow way up through childhood, into her halting adolescence and young adulthood, she recognized that a pen and a piece of paper offered a handy way to shift her thoughts from the emotional discomfort of a looking at herself in a mirror and seeing her face discolored from a nasty fall. Her reflection flashed her vulnerability in purples, oranges, greys and curry yellows – the sad colors of her falling palette. She once told me, “My blackeye hurt a little, but it’s the colors that really hurt.”

Twelve years ago, as the frozen tail of 2014 slipped painfully into the even colder front of 2015, she was still too ill, still too disconnected from the most precious accounts of her memory bank to be able to later recollect what she might have been thinking while she drew the red and black seizure monster, the free-falling orange peanut shell, and the doubly-abled horse whose powerful wings could take her up, with a feather-weight grace, anywhere she likes should her muscular legs grow weak and buckle.

It took my daughter and me a long, long time before we we felt ready to look at any of the icons and images that flew from her weary hand onto the grey pinstriped pages of my outdated journal of weekly reminders. And it took us years before we could sit together, open it up, and wonder about their meanings. I avoided them, storing them beneath a pile of papers in a desk drawer. They were too cold to handle. And far too potent as reminders of what I didn’t like to be reminded of. It wasn’t just the difficult losses that followed her profound sleep deprivation that I had tried to erase from my mind, but painful recollections from years when she constantly fell, or froze, and acutely felt the sharp and dull aches of her injuries, many of which, like her devastating fall from sleep, could have, and really should have been prevented.

Just five years ago, these pictures stirred up the worst kind of guilt, anger, and fear in me. They reminded me that I really should have known better than to trust her to the staff at that Godforsaken sleep-away camp in Newport, where the nurses couldn’t recognize a severely sleep-deprived 16-year-old if she was hanging out of her chair, howling hysterically as tears, followed by laughter, fell from her pale, white face.

Today, they remind me of other things, not only bitter but justly sweet. The sweetest being how often, throughout the years, drawing has helped her speed her recoveries. And find true pleasure while making joyful lines of connection, and wry observations about an often bewildering, gravity-laden world. It’s a fast-spinning, dizzying world even for people without disabling conditions. And drawing has taught my daughter that being a person, any person, isn’t so easy, no matter how able-minded, or otherwise-abled a person might be. She saw this when a beautiful young girl she was sitting near in a Saturday art class ripped up a picture she had been trying to draw in great frustration, and shouted, “I stink, I’m terrible, I never could do this, and I hate to draw!”

But if a disabled 28-year-old woman’s world is often rife with stiff barriers and false boundaries of all kinds, the papery world of picture-making is not. If her words get stuck up in the frozen shelves of her brain’s speech and language freezer, or her drawing hand lacks alacrity, making her pictures look like those of a much younger person, well that’s just the way her X-chromosome crumbled. Because she’s learned to trust that paper accepts all marks, she has no fear of paper. “I have zero paper fright,” she told an actress who shared with her that while she loves to act, she suffers terrible butterflies every time she walks out on stage. “You should try drawing first,” she replied.

When we last looked at the pictures that she drew in her book of reminders, I asked her if I could try and make a picture of her picture of a body-less head rolling purplishly down August. “Oh, that’s a tough one,” she said. “This little guy really doesn’t have it together.” Then she pointed to his outstretched arms reaching eagerly into the space before him along the lowest reaches of the page. The body-less head of August reminds me in a way that words simply can’t just how aware my daughter is that one’s body and mind don’t necessarily roll as one. When I later showed her an illustration of the headless horseman riding through Sleepy Hollow, from a book containing Washington Irving’s famous legend, she studied it quickly, smiled her gappy smile revealing spaces where teeth never grew, and declared, “See, he can still ride even though he’s soo disabled.” She was expressing her solidarity, and then enthusiasm when she said, “Let’s make a copy of this dad.”

For four hellish months, she couldn’t draw a solitary picture nor sing a single song. And then, at long last, with the serendipitous help of a luminous red bookmark I had, she found her way back to her lost pens and markers. They had dropped into a cold, lonely place in the human mind where unrecoverable sleep falls. Yet once found, she used them well to draw herself out of her loneliness. Owing to her fragile brain, Jenny took a full year to recover. But once her ties to the world of pictures and songs were renewed, her drawing path was cleared and she felt stronger and more confident to steal away from the still present dangers of her tippy life on thin ice. These bittersweet pictures are worth their weight in fine chocolate to me. Their sweetest power rests in their playful, unfettered lines and in the way the physical rhythm of drawing makes a music with which she can compose higher spirits. Looking at her draw, drawing with her, and sometimes just picturing the meaning of her drawings has helped me to get up and over the gravity of a hard to swallow fate. A fate that leaves my daughter forever sitting on the edge of her next fall. And when she took her calamitous fall through her R.E.M. cycle at that Godforsaken sleep away camp, I feared that all the best doctors, loving friends, and ceaseless prayers might fall short of helping her out herself back together again. It was these pictures that helped her most. This bright red picture of an X with a missing right arm, is one that I imagine crosses into the immutable universe of genetics, whose science explains how just a tiny alteration in one of my daughter’s X-chromosomes sent her tumbling far from any kind of typical life. It sent her straight down into the lifelong gravity of her hard to pronounce neuro-cutaneous condition: Incontinentia Pigmenti (or I.P. for short).

If her pen and pencil handling seems weighted down, giving an imprecise, off-kilter quality to her pictures, its only because she entered the world with this rare, chromosomal anomaly, which only affects girls,though not all in the same way.

It’s only natural that the thousands of pictures she’s drawn since she was first able to hold a crayon at age three lack the verisimilitude of her artist grandfather’s, her artist mother’s, or her artist brother’s. But that doesn’t matter to my daughter, because she doesn’t draw from life. Rather she draws life from her picture-making. Perhaps this is why these particular pictures, which I have struggled to hold onto, may speak in both a personal and quite public way about the value of picture-making. These pictures are the Winky Dink-like ones which enabled my daughter to accelerate her recovery from thedevastating losses caused by her lost nights of sleep at a Godforsaken sleep away camp. Her fall severed her from major accounts in her memory bank, forcing her withdrawal from the people, places, things, and activities like drawing and singing. Her pens and pencils, her songs, and her social embrace of others dropped down into that hard to find place in the human mind where unrecoveravle sleep falls. It wasn’t until she suddenly and surprisingly absorbed the bright warmth of the red ribbon book marker that dangled from my outdated appointment calendar a few days before 2014 slipped into 2015 that she was reminded of the strength she once summoned from the tips of pens, pencils, and cray-pas. She hadn’t drawn a single picture or sang a solitary fall since late August. She had fallen into an Arctic limbo of ill health, poor appetite, irregular, disturbed sleep, hallucinations, odd tics, and other losses. It was a serendipitous when in an angry and deeply frustrating moment, I swept an armful of dusty red journals and black appointment books into the kitchen trash bin. She stopped me when the bookmark of my 2003 book of weekly reminders caught her eye.

“What’s that?” she asked.

When I explained that it was a bookmark, whose purpose is to remind us of the place in a book where we last set our eyes, she grew more fascinated.

“I want to draw in that book,” she exclaimed. For the first time in 16 and a half weeks, her soft brown eyes were lit by curiousity.

Then she drew with interest, with gusto, as if her night depended on it. She drew for nearly three hours. She went from image to image without pause. And these are the pictures she drew. These are the pictures which remind me of the leverage and strength that a weak and tired soul can draw from picture-making,

If a picture can be said to be worth a thousand words, than surely some pictures are worth a thousand pictures each, if not more. These are to me. And my daughter’s pictues remind me how picture-making has enabled me to look straight into the eyes of the worst kind of fears a father could have.

For this I am grateful.

And I am grateful, too, to see my daughter living well, with the help she brings herself by beingdrawing-able.

Thanks to drawing, at 28 she is far more aware how her complex neuro-cuntaneous condition has colored her life. How the many challenges of her altered nervous and skin systems run from her curly head all the way down to her crusty toe. In fact, the wisdom she’s drawn from picture-making has helped her draw crucial intellectual connections and summon up life-affirming responses. By aiming her markers in all directions, shapes, forms, lines and colors she has shaped a rounder, fuller, steadier, happier existence for herself. The hours she’s spent expanding her vision, strengthening her seeing, meeting new ways of looking at herself and the world are a Godsend. Which is why I have dedicated this picture book, with her strong approval, to the ancient red line of drawing. You know this pulsating, imperfect, creative line that started at the pink dawn of human time, and which has enabled my disabled daughter to draw her difficulties aside and move freely across a boundless paper universe, without any fear of falling.

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