Seven years ago I had emergency surgery to relieve a condition called spinal stenosis. This is when the discs in your spine collapse inward rather than outward (which is normally a bulging disc). Two of mine, up in the cervical area, had collapsed onto the spinal cord and I started losing my motor skills, slowly at first, then suddenly really rapidly. My spine surgeon estimated full paralysis within two months if I didn't get the surgery - not something you want to hear - so in I went for a double spine fusion three days after diagnosis.
Despite a mishap with the Mayfield clamp - that's a clamp that screws into your skull to hold you still, and one of the screws slipped and mashed up a muscle in my head - the surgery was successful. I was told I was wheeled out of the recovery room demanding my two deflated discs in a mason jar.
I recall being in a lot of pain despite a morphine drip, and I couldn't walk. I was told this would subside within a day, but something was clearly wrong, and within a short time I discovered I couldn't move my right side. Even my face was slack. Naturally I freaked out, and meanwhile the pain in my neck and head intensified, and soon after my room was swarmed with doctors and nurses and I was hustled into ICU. It appeared that my brain and spinal cord were swelling - we didn't know it at the time, but I had Addison's Disease and this was the result of an adrenal crisis. Basically, my brain was bursting.
The doctors responded swiftly and within a few days I regained my mobility and the swelling was under control. I was able to learn how to walk with a walker and I was happily discharged, although my doctors were a little bewildered with my unusually slow recovery. Normally people are back to normal within a couple weeks, but it took me over a month, and even then, I was having inflammation problems. One of my doctors wised up and did a cortisol test - I scored 0. Several additional tests later, the diagnosis of Addison's was laid on me. Yay.
I was finally able to go back to work that December at Krab Jab Studio, and we had an upcoming art show opening. I'm used to these kinds of events, which can bring in a lot of people, and I was looking forward to it, like I always do. I was tired and a bit forgetful, not a big deal, even understandable. However, I was a little bit perplexed at some odd interactions cropping up suddenly.
Artists were dropping by to say hi, or drop off art, and I simply had no idea who they were when they came calling. At first I thought maybe I was just tired, but it kept happening, and then it was happening at roller derby practice, which I was coaching at the time. I was mixing up skaters, and without seeing their jersey numbers I was having a hard time figuring out who was who. Then it started happening all over the place: people would say hi or smile at me, strangers, and I couldn't figure out who they were. A few folks called me on it ("Julie, what's with the stinkeye? Are you mad at me?").
It came to a head at the art opening. We had our usual crowd, and many of them were regulars. My job is to greet people, chat, talk about the art, introduce the artist to people. But this time something was clearly wrong. I was introducing myself to friends, I was brushing past regular buyers without acknowledgement. I had no trouble recognizing my studio mates, but everyone else -- without a clear identifier (a signature hat, hair color, voice), I was lost.
I spent the latter part of the evening hiding in a corner, mortified.
Turns out the brain swell did some damage - I had developed what is called prosopagnosia, or face blindness. The lower right side of my brain took the brunt of the swelling, and that's where facial recognition is located. For some reason people I knew prior to the surgery I had no problem recognizing, but anyone I met afterwards, or if I didn't know them very well before the surgery, my brain just couldn't figure out who they were. I couldn't even drum up their image in my memory, their face would be a smear. As an artist, this was particularly distressing.
After the opening, I became very anxious and avoided as much social interaction as possible. I was really embarrassed I couldn't recall people, and I'm such an easy read, it seemed like every interaction I had with someone was awkward. Are you a stranger or friend? I was repelled by people coming up to me, I dreaded any kind of interaction at this point. I was pretty useless as a coach, so I quit derby completely. I didn't want to go out, not even to my beloved art studio.
As a social person, I was becoming miserable with the isolation. This wasn't me at all! I sat one day, staring at photographs of my friends, and suddenly a thought hit me: I have been approaching this all wrong. Sure, everyone is a stranger until we establish our relationship, but it goes the other way, too: what if I approach everyone as a friend? If they actually are a friend, we're already on good turf. If they are a stranger, well, now I have a new friend. This might be a good strategy.
I realized that just asking people how things are going gives me enough clues to figure out who they are. I learned I can recognize voices and physical tics and movements. I started working a little harder to note details of everyone I meet: do they have a favorite hat or coat? Do they have piercings, or moles? What is the shape of their brows? If something looks familiar to me, I start working through my database of details, hemming them together until I can "recognize" the person, all the while cheerfully asking them what they're up to or how are they doing. Most of the time this works and I can figure out who I'm talking to within a few seconds, but it did take practice. At first it would take a couple minutes and sometimes I'd finally have to ask who I was talking to, but that doesn't happen as much these days.
When I'm tired, its worse, and in situations with a lot of people I do get overwhelmed and easily confused, but now I just laugh it off. Oddly, the face blindness forced me to be even more social and friendly and the result is making a lot more acquaintances than I've ever had in my life. I smile more at people and say hi more. I have more interesting conversations with people. My friendliness often pays itself forward, and I have good daily interactions, sometimes with benefits (a free coffee here, a helping hand there). Sometimes I get a cold response from a stranger, but I shrug those off. Their loss.
A stranger is a stranger until they're a friend. Its funny how a little break in the brain actually adds value, rather than detracts. At first this was horrible, but it forced me to really look at how people interact with each other, it pulled the rug out from under me and I had to learn to be comfortable with uncertainty. What a gift!
The other night, I was watching VH1’s Best Of series, and they were reviewing the year of 1976. I was pretty young back then but we did have a TV and I was a voracious viewer at that age. So when they showcased the Captain and Tenille Variety Show, you can bet that I have a few episodes of that piece of Americana tucked back in the recesses of my cluttered mind. It also dislodged an old memory of mine.
I simply loved the Captain and Tenille show, but more so, I was mesmerized by how beautiful I thought Tenille was. She was everything a woman needed to be in a nice, neat, homogenized package. Blonde, big eyed, dazzling teeth, not-to-curvy body, complete with a microphone permanently welded to her right hand. And that voice! She clearly was a superstar in my tiny, impressionable eyes. By second grade, I am pretty sure I aspired to be just like her. I say “pretty sure” only because I aspired to be a lot of things during that year, like a flying monkey, Princess Leia, and a World Overlord, to name but a few. I was a very indecisive child when it came to what I wanted to be when I grew up.
When I was seven, my parents split up and my father was banished to live in my grandparent’s attic. We would see him on weekends over at my grandparents house, which we often enjoyed, for their house was a bit of a Funplex for us. There was a manmade creek behind their house, stocked (not purposely, I’m sure) full of tadpoles just begging to be caught in old jars, a breezeway on the second floor that we often tied sheets to the railing and swung off of, a la Tarzan, and my grandma’s lamp made of a gumball machine, with real gumballs inside it. My father’s attic room was a place of wonder, with its steeply angled, raw ceiling, bare lightbulb and dark wooden paneled walls, it screamed “secret hideout” to us kids, and was a favorite place of ours to cuddle up to read stories with him (we slept in the guest room downstairs). Despite my anxiety over my parents’ split, I really enjoyed visiting on the weekends.
One Sunday, before we were shuttled back home, my father was in the bathroom fiddling with his hair. He pulled out a pair of scissors and did a quick trim on himself. My father prided himself on the fact that he could cut and style his own hair, perfecting the “windblown feather” cut to a T. I watched him with great interest until he was satisfied with his trim. He looked over to me.
“What do you think?” he asked. Since his hair was only transformed by a mere centimeter, it looked almost the same as before, but I told him it looked good.
Then a thought occurred to me: if my daddy can cut hair, maybe he could cut my hair too. Maybe…just like… TENILLE.
“Daddy, can you cut my hair too?” I asked him. He thought a second and smiled.
“Of course I can! How would you like it?”
“Like Tenille,” I gushed. He furrowed his brow, no doubt reviewing the database of faces in his mind.
“How is her hair, Jules?” he asked me. I was incredulous. How could he not know? Everyone knows Tenille. My dad was a musician, a rock musician at that, didn’t he know her?
“Like this” I pantomimed around my head a rough estimate of a longish bowlcut with feathered bangs. His brows remained furrowed as he watched me. I suspect my voguing routine made no sense to him, and in hindsight, he should have chosen that moment to back out, but my dad was an adventurer, and more so, wanted to please his darling children in any way he could. He shook his head.
“Round in the back,” I said. He nodded. I happily went into the bathroom and sat on the toilet while my dad draped a towel around me. He carefully combed out my very long, straight, almond hued hair with his little black utilitarian comb, snipped a couple practice snips in the air, then began to work on my transformation from average second grader to Diva.
Although he was to my back, I could tell he was getting frustrated with his work. He’d snip a few times, pause then grunt in apparent disapproval before snipping again. I noticed my head was feeling lighter and lighter, and with a little trepidation I noticed the sound of the shears getting closer and closer to my ears.
“It’s just not even,” I heard my dad grumbling to himself.
“Is it looking good, Daddy?” I asked, hesitation hovering in my squeaky voice.
“It will, Jules. I just have to fix some things,” he replied. Snip snip.
“Okay,” he said, stepping back, “I think we’ve got it. Want to see your new ‘do, Miss Tenille?”
I clapped my hands together, excited. He dusted off my neck – hey, how come I feel air on my neck? – and helped me off the toilet. I looked down and froze.
There was a haphazard pile of hair on the floor, enough to make a wig. I was puzzled, and then put my hand to my head and noticed that I could barely grab a handful in my tiny fist. Panic gripped me before I even had a chance to look into the mirror. I had well-oiled waterworks and already my brain was calling in the troops to kick-start my tear ducts into full throttle. I finally made myself look at my reflection.
I could see my dad standing behind me, a weak, worried smile on his face, eyebrows lifted practically up to his hairline. Directly below him stood one of Fagin’s street urchins, a little boy in a yellow shirt, hair chopped in a variety of lengths, the longest of which was maybe two inches. It looked as if a lawnmower attacked my cranium. I took a big, deep breath and screeched.
“I DON’T LOOK LIKE TENILLE! I LOOK HORRIBLE! DADDY, WHAT DID YOU DO?” A deep, primal wail rolled up my windpipe and I began to weep. I couldn’t look in the mirror anymore, and even if I tried, my vision was obscured by large tears forming and splattering down my face.
“I did what you asked me to,” my dad said, “you don’t like it?”
“I – asked – you – to – round – the - baaaaackk,” I sobbed, “not – cut – it – all – offffff!”
“I’m sorry honey, I misunderstood,” my dad apologized. Even now I find his apology lame. How could he NOT realize he had royally screwed up? Why didn’t he put down those scissors when he first sensed this was way over his head? Was it pride? Or retardedness?
For the first time, I demanded I go home that very instant. My dad meekly complied and piled us kids into the car. I did not let up on my howling, so many tears escaped my eyes I’m sure I must have dehydrated myself in the process. I remember one point looking up, my eye peeking through my fingers, to see my little sister staring back at me, her mouth partly open, silent and looking thoroughly stunned. Her eyes said it all: Holy Crap, what happened to my big sister’s head?
I think the reality of the measure of his screw up came when my mother opened the door, heard my crying and looked down at me.
“Oh my God, David, what did you do to her?” my mom was incredulous.
“She asked me to cut her hair, so I did,” said my dad.
“Not like this! I wanted hair like Tenille,” I interjected.
“David, she’s seven years old and you’re the adult,” my mom snapped at him. “I don’t think anyone would want this kind of haircut, you butchered her hair! What were you thinking?”
My dad sheepishly responded, “I thought I could do it, I’m really good with hair.”
“David, just because you cut your hair in one kind of style doesn’t mean you’re a qualified hair dresser. It’s one thing to trim her bangs but Jesus, this is unreal. Just promise me you never ever touch a hair on her head, at least without talking to me!”
And with that, my mom ushered us in, grabbed our overnight bags, and slammed the door. My dad was in deep doodoo.
“You can’t go to school like this tomorrow, I gotta think,” my mom said more to herself than me. The thought of going to school like this, a school in which I already was on the brink of being a social pariah, set me into another wave of sobbing. My mom grabbed the phone and started making phone calls. She called her friend Penny, a hairdresser, and begged her to please see me after hours that evening, it was an emergency.
“David tried to cut her hair,” I heard my mom explain, ”and I think a blind man with epilepsy could have done a better job. You will not believe this.”
Penny agreed, and I was whisked off to her hair studio. Penny took one look and stifled a laugh, covered her mouth, inspected my head, shook her curly mane slowly back and forth.
“Wow,” was all she said.
“Can you fix it?” my mom asked. Penny thought for a minute.
“There are so many lengths on her head, it’s going to be a challenge. It almost would be easier to shave her down and start over, but we can’t do that, can we?” she kneeled down to me and smiled. “I’ll take care of you honey, don’t worry. We’ll fix this all up.”
Penny worked on me for over an hour. She managed to get my hair into a sort of feathered-boy-pixie-cut thing – way before Meg Ryan’s famous shag – and told my mom to both never let my dad cut his children’s hair, and for her to bring me back in each month so she could continue grooming my hair. It took over six months to work it into a short bob with bangs.
I only had one picture taken of me in second grade, and that was my class picture. I hate that picture, I had that terrible short haircut and coupled with my Goodwill welfare getup, I truly looked pathetic. Thankfully the kids never teased me about it – even they could tell that something tragic occurred to my once-beautiful long tresses, and there’s only so much bullying a child can take, the haircut was punishment enough. I never forgave my dad for that episode, and we chose never to discuss the matter ever again, although Penny took joy in ribbing my father over his hair cutting skills for many years afterwards. My dad got the hint and his scissors never snip snipped another head ever again.
It was a warm afternoon; the air hung heavily, a perfumed curtain of honeysuckle and rose and freshly cut grass. The sun was still high and contemplating its evening plunge into the nether, but the season was Summer, and it still had many hours to wile under the domed sky before its perfervid bedding behind the horizon.
Little dewdrops glistened on the child’s brow as she strolled down the sidewalk in a careless amble. If she was overheated, she took no notice. Her hands absentmindedly tugged and crumpled her white cotton skirt’s hem, leaving light marks of dirt and oil behind. Her feet moved slowly and methodically, one lazy step at a time, and her eyes squinted and trained upon the strip of lawn beside her. The grass glowed a brilliant green in the sun, the nooks and crannies exposed within each clump of grass. This particular stretch of lawn was blemished with crabgrass and clover. While not the prettiest bit of green earth, for her, it was ideal. She stopped abruptly and knelt down.
Her little thin hands grazed the blades of grass and clover, probing here and there in an earnest search that would have even the conquistadors of yore garner her respect in her thoroughness. Her face was so close to the ground her shadow partially obscured the light, and she frowned at this dilemma. Still her hands searched amongst the weeds and grass, through the chickweed and crabgrass and clover until finally – ah! – her full lips curled ever so slightly at the edges. Her thumb and forefinger plucked her discovery from the safety of its roots and she raised the stem of the clover up to her face for a closer inspection.
Yes. All four leaves were present, despite a split in one of the lower quadrant leaves. A sense of accomplishment washed over her like a cold spring shower and she stood up, her knees dimpled with the imprint of the sidewalk’s concrete. She looked first up, then down the sidewalk for any witnesses, and assured of her solitude, raised her hand up to the sky, to the sun, and watched the beams of light stream between the four petals like white hot rivers. The sun christened the clover with a halo, and she smiled, its first and only convert.
She had looked for this clover her whole life.
With luck in hand, she strode confidently down the sidewalk, unable to contain herself. Her smile was a rainbow, her eyes were stars. But soon, past the chalk hopscotch grid drawn in yellow and orange, past the overlapping ridge in the sidewalk caused by an massive oak root bursting forth, past the purple and white house with the gingerbread shutters in which a nice old lady passed the time tending her garden and her Bible, past the mailbox, her eyes are cast downward and once again the nagging urge overcame her. She looked at her clover, its stem already bruised from her fingers clutching it too hard. She wondered if her good fortune could beget more good fortune.
Her grubby left hand still clutching the clover, she knelt next to a small patch of unkempt grass on the easement of an equally unkempt house of dirty white clapboard and overgrown dogwoods surrounding its stoop. Her right hand lifted up a large wad of chickweed to reveal a struggling patch of clover, some of which was yellowed from the lack of sunlight. An old and ragged bit of clover caught her eye, and with surgical precision she pinched its head clean off its mother stem and looked it over. One of its leaves looked as if a very tiny cat had clawed the edges many years ago, leaving dried tatters behind. But despite the bedraggled leaf, the other three were quite sound. She gasped aloud.
She jumped up and giddily spun in place, her skirt lifting and pin wheeling around her. She drew both pregnant hands together and tucked them under her chin and cawed to the sky. The world tipped and reeled around her and she caught air as she fell backward onto the easement, padded by the ample chickweed and moss. Quite unhurt, she giggled to herself as she clasped her clovers like two jewel encrusted scepters, one for each hand.
She lay there for a time, motionless, listening to the birds coo and twitter, feeling a bead of perspiration drip from the pool in the curve of her throat around to the back of her neck before slithering into the nest of green beneath her. Several strands of hair stuck to her forehead and the heat seemed to beat upon her little body with intensity, but she gave no care. Her lazy smile drizzled itself across her dirt stained cheeks, her skin browned by the sun and the humid earth, interrupted only by the flush of health under her deeply fringed eyes. A lace of daisies crowned her dirty summer hair, each thick tendril entangled with the moss encircling her head. She was a Queen, Queen of the earth, of the summer haze, Queen of the dust and the ants and the flowers and the trees, Queen of the cracked sidewalks, the ones that broke the backs of so many mothers. Anointed with the dappling sunbeams that jittered and pranced about her, she arose at last, ordained.
She walked slowly, carefully, her gaze focused on the treasures set firmly in her two tiny fists. She did not trip, did not stumble; she knew this sidewalk almost as keenly as her own mother, had traveled its broken and worn causeway her whole life, every day, from the moment she could totter and teeter on her two clumsy feet. She walked as if she was carrying a pyramid of eggs, yet her heart was not tense with worry but light and carefree. She passed under yet another old oak tree – several dotted the easements, providing a canopy of green shade – and as she emerged from its webbed and mottled shade, she heard a familiar buzzing sound in her right ear. Unafraid of flying insects, she paused and sought out the owner of the beating wings, and watched with delight as a graceful golden striped honeybee lit upon her right hand, just below her thumb and under the umbrella of clover. It tapped her skin with its black legs as if it were divining for a water well, and spun slowly in a circle. She watched with curiosity as it traveled down to her wrist, carefully feeling its way with its quivering antennae. It paused, lifted its head as if to gaze at her, then in one swift movement it plunged its abdominal spike deep into her skin, barbing her with its hollow stinger. She startled.
As the venom pumped rhythmically into her veins, the bee raised its wings and beat them viciously into the air, pulling away from her skin, simultaneously tearing apart its own body as the stinger held firm upon the swelling of her wound. It departed as mysteriously as it appeared to her, and she dropped the clover, the clawed-up one, from her left hand as the shock of attack left her and the biting pain dug in. Although she had never been stung, she had seen her mother carefully scrape the stinger off her younger sister’s leg last summer, never flinching as her sister wiggled and howled in terror and agony. Now it was her turn to nurse the wound, and to scrape away the pumping sack and its stabbing lance from her wrist, leaving behind a tiny red pinprick set upon a raised lump of white, angry flesh. She mused to herself the tragedy and senselessness of the act. She briefly wondered where the bee had gone to, if it had made for the safety of its hive, tasting the airways it traveled homeward bound, to beat and crawl its way back into the nest, carried by its comrades as it buzzed and twittered its last farewell. She could not fathom why such a gentle creature as a honeybee would attack her without provocation, her mind too young and inexperienced to come up with as convincing a list as the world weary soul could muster. She was fortunate; eagerly does one drink the wine of experience, to know all there is to know, only to find it brings one nothing but suffering. She was still ignorant, a child.
She gasped: her clover! She looked anxiously about her, but it did not lie upon the gray cement. The easement near her feet was riddled with grass clippings and shadow, and she felt the strangling pressure of alarm building within her chest and she knelt down and grazed her fingers across the tips of the grass blades. Green upon green, it was quite impossible to see such a tiny, unassuming little clover, and she could practically taste the salty tears riding up into her eyes and eyelids. Had she been a less determined child, she should have sat herself on the bumpy cement and cried for herself. Instead, she dashed the waterworks from her eyes with her free, uninjured hand and leaned deep and squinted hard.
She drilled her vision into the earth, and it paid off in time. Her eye caught sight of the tattered leaf belonging to her clover as it perched quite comfortably upon a dandelion leaf, itself the victim of a push mower blade. Gingerly she grasped its bruised and limp stem, slowly exhaling as she did, her heart still pounced and beating itself upon her ribs with great impetus. She raised herself back upon her two feet, looking at her treasures with relief, the sting almost a thing of the past despite the undeniable swelling pronounced against the wrist bone. All was not lost.
Her smile now recovered, she continued her journey upon the cement brook that would lead her to a hive of her own, shuttered by yellow painted shingles and peeling white window trim. She had a pressing book, a gift from an elderly aunt, half its pages filled with bluebells and honeysuckle and the furry yellow dandelion heads from the lawnmower clippings she liked to sift through in the compost bin. She had a special page, a page still empty, right in the middle of her book, for her two jewels. She had waited a long time to add to this page, and she sucked on her lower lip in anticipation. It was Coronation Day, and there was much to be done for this special occasion. Dollies and bears were to be brushed and lined up according to size and rank. Lemonade was to be served in pink plastic teacups. The duvet cover was to be spread and smoothed, and Mommy was to be summoned for this occasion, for it was best if the moment were shared with another.
She daydreamed of what dress she should wear: the yellow one with the pinafore, or the green one with polka dots? She did not notice the light tickle upon her skin, the sweet touch like the curious fingers of a sylphic breeze, until it went from a light caress to a stabbing pain and she cried aloud. Another honeybee, perhaps the sister of the first, had landed upon her left wrist and violently plunged her stinger deep into the skin, a cascade of venom and pain following. The child’s urge was to wave her hand about wildly, tossing the bee this way and that until it was flung up into the ether, but instead, she raised her wrist to her eyes. The bee was still lodged into her skin, stumbling this way and that in an effort to dislodge itself, no doubt signing its own death warrant in the process.
Acting quickly, she placed her other clover into her left hand, leaving her right hand free to perform an emergency rescue towards her assailant. With the steeled nerves of a surgeon, she carefully slid her pinky finger under the belly of the bee, it responding by biting her fingertip with its slender mandibles. Using her nail she gingerly pushed against the pierced flesh, lifting upwards to unhook the little insect. It took a few tries before it finally extricated itself from the whitening wound, and with several anxious flutters the bee flew off, intact, saved by a compassion it could never understand.
The pain thundered through her, drawing moisture to her eye, but she was tough as radishes and held back the torrent of tears with the perseverance of a wooden-shod girl sealing a crumbling dike with her one finger. She looked at her two identical wounds, fresh and ripe as they were with nerve-wracked venom. Her hands shook with the adrenalin, her own body’s antivenom, her hand still clutching the clovers. She opened her skirt pocket with her fingers and watched the two clovers tumble inside, and only when she was assured their safekeeping did she let go of her pocket and clasp her hands together and to her breast. She could feel them throbbing against her warm wet skin where her collar was unbuttoned. She suddenly became aware of the heat, of the sweat, of the heavy air and the limpness of everything around her. She looked about her for a moment, and with the exception of the crickets whirring, it was still and quiet. She smirked coyly herself, an explanation unfurling its banner within her mind and quenching her spirit with its draught like a cold honey mead.
A Queen does not like another Queen in her midst…
,I won't go into too much about Addison's Disease; Google it and you'll get a plethora of information, far more than I could really spend all day typing about. In a nutshell, its a rare adrenal disease, usually caused by autoimmune factors, that atrophies the exterior cortex of the adrenal gland (the interior is where adrenaline is made, the exterior makes cortisol, aldosterone, and a certain amount of sex hormones).
By rare, I mean really rare: 1 in 100,000, to be exact. You have a better shot at ALS than Addison's. I was lucky at at the disease lottery about 7 years ago, when I was diagnosed after having an Addisonian Crisis post-surgery that paralyzed me, swelled my brain and landed me in Neuro ICU at Harborview in Seattle (a well known hellhole of a hospital, but they have a great neurology dept). Fortunately I was shot up with insane amounts of dexamethasone, mostly to get my brain under control and my life was saved, along with most of the brain (the only damage was to the area of the brain that remembers faces, which is why I am friendly to everybody I see.).
Fast forward to now... I have awesome doctors, a good support system, and I'm pretty good at recognizing when I'm slipping into failure, which usually means I have to take huge doses of two kinds of steroids (called "stress dosing"). I have to take steroids every day to stay alive, like clockwork. That's not drama, that's just life. If I don't take them, after a few days of what looks just like narcotics withdrawal, either my heart will just stop, or I will fall into a coma, THEN my heart will stop. While this is going down, my mind will go crazy: with lack of cortisol, psychosis is common. Its a really fucking ugly way to die, if its slow. You can only hope you go really fast. Trust me, I don't forget to take my medicine.
They tell you ("they" being doctors) that if the disease is controlled you have a shot at normal mortality rates. Hey, awesome! However, us Addisonians know this is total bullshit. You can live a long, full happy life if the following happens:
-you never, ever have anything stressful ever happen to you,
-you never, ever get a "domino disease" (AD often gives way to other diseases like diabetes, Hashimoto's, etc),
-you never get in a traumatic accident,
-you never catch a cold, flu, stomach bug, or pneumonia.
With my support groups, I get to watch several people of all ages (children, teens, adults) die every month, every year, from complications of this disease. Sometimes I can't stand checking in with my support groups, especially during flu season. Reading that a six year old kid picked up a stomach bug, and three hours later he's on a life support machine, fighting for his life, God, it kills your soul. Another symptom of adrenal failure is hopeless depression; you have to remember its part of the disease, its not real life. We have to do welfare checks on each other all the time, and suicide rates with AD is really high. The easiest way to kill yourself is to stop taking your steroids and wait.
I am fortunate in that I'm a naturally sunny person and have a pretty good outlook on life - if I'm feeling bummed out, I run through a checklist of symptoms, and usually a bump of steroids will right all the wrongs I'm feeling within a couple hours.
We don't have a whole lot of people in our groups that are over 60 years old; in fact, the average age of death seems to be about 45-50. I'm smack in the middle of that, and I've thought a lot about mortality and this disease. Of course my plan is to live forever, and be a crazy old lady with a million cats. If anything, my goal is to drive my husband of 20+ years into insanity for many many more anniversaries.
But I know that all it takes is one bad taco to send me off to ER and cardiac arrest. One misplaced sneeze by one of my customers. One really shitty day full of rain and angst. I have to hope that the people around me respond correctly to my symptoms, especially if I can't think straight or I'm having problems staying conscious, its really important to have people advocate for you when you can't, and I can't have their fear interfere with my care response. I can't have my own fear get in the way, either. You can't play games with this disease, there is no wait-and-see.
A couple years ago in order to be proactive, I started getting my business organized, and last year I started the process of Swedish Death Cleaning (basically clean out your basement). The Will was written, and the Living Will created. I started working out a plan to allow me more time to paint, and a list of what paintings I need to work on (this is why I no longer take on commissions like I used to). I started telling more people to go to hell - not because I'm mean, but if your problems and needs take up my time but in the bigger picture mean nothing, fuck you. My clock is ticking. So is yours.
Energy is a rare commodity with Addison's, and I'm often having to sit things out because of exhaustion, which makes me super anxious. Tick, tick, tick! That crocodile with the alarm clock is always swimming behind me, just a teeny bit closer, and days like today - the bad ones - I can almost feel its breath on my heels. Today was a bad day. My heart was acting weird, I was sick to my stomach and lost a lot of fluid, my temp was low and I was shivering and sweating, too sick to paint, much less anything else. I got really sleepy at one point and truly was afraid if I fell asleep I'd never wake up. I wound up taking fludrocortisone on top of normal stress dosing - my heart flutters and dropping temp cued me that aldosterone was too low - and a few hours later felt much better, but who knows what could have happened had I just gone to sleep. And in my mind, all this does is instill the persistence of living.
People love talking of death when its only an ideation; they sure clam up when its reality. When I talk to other Addisonians about it, its very matter-of-fact, almost banal. Its also funny. You make a lot of jokes about being sick and dying and hospitals. Morbid humor is second nature. You laugh more, because what else are you left with? Even when I am in agony and in the hospital, I'll still find things that are funny, I'll still poke fun at the situation.
I recently had a dream in which I was talking to a spirit. I made the mistake of asking if I was gonna die soon, and he thought about it for a moment, and told me now's the time to work my shit out. I got really upset, but then thought, well, shouldn't I work my shit out? "Soon" can be tomorrow, or a year, or five years. Why sit around like everyone else? And if my shit's all worked out and I'm still here... make more shit. Rinse, repeat.
Having your mortality cut with a hot blade can be really depressing and scary, and yes, it scares me. I'd like to beat the system, make it to 50, past 50, to 60 and beyond. But let me tell you a quick story that pretty much nails my point in: about five years ago, a friend from college developed a rare, deadly cancer and was given a few months at best. She told me it was oddly the best thing to happen to her. She quit her job, and she and her boyfriend traveled the country, and she rode horses in the wilderness, which she loved. She started painting and drawing again, and she made sure to tell me I was an inspiration to her. She was so fearless, lived so big, I could only watch in utter awe. She outlived her prognosis by several months and died very gracefully. It really isn't the amount of time, its about what you do with it, how you live it. Not every day is going to be fireworks and parades, but if my intention is to live as best as I can for the moment I am in, I'll be okay.
Somehow my business partner and I were chatting about dating as teenagers, and he mentioned going to his Prom with his girlfriend as a "couple of losers". He asked me if I went to mine.
I took a deep breath, and he knew this wasn't going to be a "yes" or "no" answer, so he strapped in and ordered a proverbial drink for himself.
I had always wanted to go to Prom, "Pretty in Pink" style. I had gone to all the other dances, like Tolo and Homecoming, but senior prom night was the Mt Everest of dances, and I had already started work on my dress months before the event. There was this vintage shop on Roosevelt Ave near my high school, and they had stunning dresses from the early 20th Century. There was one there that was from 1919 in black silk, high waisted and tiered with jet beading. I saved my money for months for that thing, which was nothing to sniff at considering my addiction to records, vintage clothing, and speed (yes, yes, that's another story... Kyle ordered another drink for that one later). Once I had saved up the money and bought the dress, the girl who worked at the shop helped me redesign and sew the dress so it was a sleeveless and a little bit more form fitting, and she showed me how to stabilize the beading. It was a blessed project for the winter months, and I'd sit up at night maniacally sewing away, imagining how wonderful prom was going to be in this dress, how awesome it was going to photograph. The only thing I was missing was a date.
As spring approached, the date problem was starting to become a worry. While my best friend offered to take me, I was kinda holding out for a real date, not a mercy one, plus my best friend Keri was a vampire and she scared people (she didn't go to school, had her own apartment, slept during the day and was best known for floating down Broadway at wee hours of the night). My prospects were limited at my high school, although my English study partner sheepishly asked me to go with him. I respectfully turned him down: I actually was concerned he'd be made fun of for going with me, since he and I were polar opposites and his friends were pretty conservative, and I was a weirdo. Plus, truly, I had the dress to think of. My date had to match the dress.
Like magic, I was romantically stalked by a local musician-turned-drug-dealer and huzzah, I had the date thing nailed! He worked well with the dress, too, since he styled himself LA goth and wore more makeup than me and already owned a tux jacket with skeleton hand lapels, and wore a top hat. My only problem was, well, he was a lot older than me and unlike me, did not fantasize about the perfect Prom photo. I had my work cut out for me, and only a month to turn him.
While I was working on wearing him down by being the perfect girlfriend, I had acquired the perfect Fluevog shoes (pointy black leather ankle boots), got myself a black rose head piece and my father gifted me with the most beautiful black velvet capelet. I took to dressing up in my prom outfit on many speedy nights, working out photo poses and the perfect beehive (takes 1.5 cans of Aquanet, for the record). Once the date was announced, I got my tickets and called my boyfriend to work out the details.
"No fucking way," he said flatly. "That's retarded. Not going."
"We can just go in and get the picture done, we don't even need to dance or anything," my little heart was breaking!
"Date is no good," he was eating something so I heard a lot of mush noise between syllables, "Shelly's birthday is that night and she made me promise to go. Everyone wants MDA, so I gotta go. Get Keri to take you. Gotta go take a shit babe, see ya later." click, beeeeeeepppp. I just stared at my phone and one big fat tear rolled down my cheek. What was the point of this boyfriend thing? Don't guys understand why they were invented? What about my fucking dress???
I took the bus to Broadway and met Keri at Charlie's, our favorite restaurant to sit for hours. As we took turns dumping Charlie's Famous Colored Sugar Crystals into our bottomless coffee mugs, I relayed my dilemma. She looked concerned but nonplussed, then finally annoyed.
"Guys are dicks, you know that," she took a deep drag off her cigarette, cradled between her skeletal fingers. I just sighed. I wouldn't get very far complaining to Keri, seeing as she was a lesbian and she and I had been a couple for a long while, until my prom dream burned that avenue down like a bad fever. She only tolerated Sean (the boyfriend) because he ran the best designer drugs in Seattle at the time, and she got them through me. ("I'll have another drink," says Kyle)
At about this moment, an acquaintance of mine was cutting through the restaurant towards the back bar. In seeing me, he veered over to say hello. His name was David and he was a local weed dealer, a New Wave hippie guy, really goofy and friendly, like you'd imagine a weed dealer to be. He was probably in his early 20s and he was truly nice, and his big friendly smile dropped when he saw how crestfallen I was. He sat with us and listened to me whine about Sean refusing to take me to the dance, and gave me a big hug. "I'll take you, sweetie, and I'll even dance if you want. We'll have fun, fuck Sean, okay? C'mon, smile! Hey, I never went to my prom, this will be fun. I'll wear whatever you want," he gave me the chuck-on-the-chin and after writing his phone number on my hand, he gave me a big hug and trotted out to the bar. Keri rolled her eyes and lit another cigarette. I just stared at the digits on my hand, a slow smile creeping onto my face. My date with the dress was back on.
David and I chatted a few times on the phone over the next couple weeks, mostly working out the details of where to meet up and what he was going to wear. He seemed genuinely into it, and whether he had any other motive beyond just taking a goth chick to her prom, I wouldn't know. I nonchalantly mentioned to Sean that he needn't worry about taking me after all, and he just shrugged. "Dave's a nice guy," was all he said. Trust me, I Seinfelded the crap out of that comment for days, but finally figured it didn't matter, Senior Prom was only days away!
Friday before school, I laid out my dress near my bed and stared at it lovingly. You and me and Coconut trees and Cut-out stars, we'll make such a pretty picture. I happily trotted off to school, bumping into my English study partner in the hallway. He told me that another girl was going with him, and I was happy to hear it, and he said maybe we could get our pics taken, both couples, and I thought that was a grand idea. I passed by my friend Eowyn and asked her what her plans were that Saturday, as she was boycotting the dance. She wasn't sure, but since she also knew David, suggested maybe we all could meet later on? Again, I thought that was a grand idea, since she lived near Broadway and as her parents were often never home, her place was a great crash pad.
After school I raced home so I could admire at my dress again. While fixing myself a snack, the phone rang. It was David.
"Bad news, sweetie," his voice sounded weird, and wherever he was calling from, there was a lot of background noise. Uh oh.
"I'm in jail."
I asked him to repeat himself. He cleared his throat.
"I'm in jail, sweetie, I sold weed to a cop. This is my one phone call and I feel so terrible, I don't know when I will be released. I wanted you to know right away. I'm so sorry!! I had flowers for you, and--"
I hung up. I dropped my plate into the sink, walked passed my befuddled dad, wordlessly up the stairs, and slammed my door. My dress faced me like a scorned lover, and I snatched it up, tossed it into the closet, flopped onto my bed and sobbed, then fell asleep.
This could have been the end of my story, but no. I was plucky, and after a good long slumber I awoke with fresh determination. My dad had already left for a show -- my dad was a rock musician and played gigs on weekends -- so I helped myself to the dinner he left me and called Eowyn. "Plans changed," I said. "Meet me on Broadway tomorrow night. I'm going to make Sean take me, you'll have to help me."
I didn't tell my dad that my date was in jail; I didn't think that would go over real well. I did tell him that I was meeting my date for dinner on Capitol Hill before the dance, which made no sense since I lived in the University district and my high school was just up the street, but my dad learned early on it was pointless to question me on my idiosyncrasies, and just nodded. He had another gig that night so we agreed I could spend the night at Eowyn's and he gave me $20 for dinner, then gave me a big hug. "Just try to be ready before I leave, I want to see how you look," he said.
There's nothing quite like dressing up for an actual occasion. Its sort of ritualistic, from the laying out of the clothing, to the bathing, plucking, blow drying, powdering, lacing, teasing, combing, spraying. I took my time getting myself put together, dialing Sean's number every half hour. It would just ring and ring, and I figured he was either sleeping or doing whatever drug dealers do when their girlfriends aren't around. No matter, I knew that he would be up on Broadway later on, sitting on a staircase next to the 7-Eleven.
I did a final check in the mirror at the house and satisfied, I waltzed down the stairs so my dad could see me before leaving. He got all misty eyed and grabbed the camera, only to realize he forgot to put film in it. He cursed a couple times, then laughed. "They take pictures at these things, right?" he asked. Yeah, Dad, don't worry, I said. "This David better treat you well, okay? Don't drink anything weird, okay? Have fun, and oh, bring an umbrella, it might rain," my dad said before giving me a kiss and heading out the door.
I grabbed my capelet and looked out the window; the weather seemed clear, so I decided the umbrella was unnecessary. I walked up the street to the bus stops on 45th and 1st ("the Ave" to the locals) to catch a #7 bus to Broadway. I didn't anticipate that a fancy dressed goth teen with an impossibly huge black beehive 'do would get unwanted attention, but of course that's exactly what I was greeted with as soon as I reached the intersection. I knew most of the kids around there, the punk rock kids and metal heads that lolled about near the bus stops, record stores and the post office, and for the most part the ribbing was intended to relieve boredom on their part, and they all thought I was a snob (which is partly true; I was originally an "Ave Rat" but found Broadway to be more interesting to hang out at, Broadway had dancing and prettier boys and girls). I put on my headphones and sunglasses and patiently waited for the bus, wrapped in a protective scowl, Love and Rockets blasting in my ears.
I made it to Broadway by mid evening, hopping off on the north end near the Deluxe. Eowyn lived around the corner, and I met her at her house and did a quick primp before we both started off to the main drag. I explained to her that I knew Sean would be there, and maybe once he saw how fabulous the dress looked, he might be inclined to come back to the dance with me. If that didn't take, I had a $20. He could be bribed.
The usual suspects were standing around the corner of Broadway and East Harrison; it was a pit stop for drug dealing, and Sean was usually smack dab in the middle of it all. That evening it seemed particularly crowded and as we approached, I started to feel a little bit sick. I felt every muscle in my neck tense as I strolled up to Sean and tapped his arm, and he spun around and looked surprised, then irritated. "Why are you up here?" he asked. He didn't seem to take any notice of the dress.
I told him David was in jail and prom was in an hour. "Well, that really sucks," he said. "For you, I mean. I got Shelly's birthday party to go to, the cab is on its way."
I told him it would mean so much if he'd just consider going first, with me. "I worked so hard on this dress, you're my boyfriend, couldn't you just do this for me, just once?"
He started to laugh and shook his head. "I'm not changing my plans over a fucking dress, Julie."
I burst into tears. "What am I supposed to do, then?"
By this time, a little circle formed around us, and the cab pulled up, the back door opened and sitting inside was this Shelly and her friend. I heard Shelly's friend mumble "Oh my God, really?" as she beckoned my boyfriend inside with haste. He looked around at the amused, gathering crowd and me crying, and exploded.
"I told you no, and no and no, fuck, I said no, stop being such a bitch about it, I don't care, I'm going, get the fuck out of my way, go home, I don't care, Jesus!" And with that he stepped into the cab. Shelly and her friend were cackling at the scene before them. I followed Sean to the curb.
"Can I at least come with you?" I squeaked out.
"Not invited," he slammed the cab door in my face.
One would think this episode would incur empathy from witnesses, but alas, you do not understand the hearts and minds of intoxicated, bored teenagers. As Sean's cab sped off and I was left there in a puddle of mascara, I immediately heard a wave of "stop being a bitch" bounce around me like a bad street version of the movie Carrie. Eowyn gently grabbed my elbow to lead me off and away from the jackasses taunting me, assuring me things would be okay. As we started across the street, two local street kids pushed passed the others. One of them, this older punk guy named Derek, backhanded several of the taunters in my honor. Most of the younger kids were afraid of Derek, who was a well known neighborhood junkie and although skinny, was incredibly tall and impervious to pain, making him imposing. He was madly in love with Eowyn and did everything he could to impress her, including making the attempt to salvage my street integrity.
The other kid was a shorter skinny punk kid named Ben. Put that name on the back burner for a moment.
Derek rushed up to us and grabbed my other arm, which was a little bit startling and I jumped. He asked if I was okay, and before I could say anything, started laying in on what assholes those people were, glancing over to Eowyn from time to time to assess her response.
"Get lost, Derek," Eowyn said flatly. He was unflappable.
"I can buy you two booze," he said. He was 24.
Eowyn sighed. I sniffled.
"Okay," she stopped us and gestured for my little clutch I was carrying. I pulled out the $20 and she shoved it into Derek's hand. "If you get us something, that would be great. But you need to leave us alone, okay?" He practically jumped up and down, grabbed Ben's arm and ran back to the 7-Eleven. "You know he'll short change you," she said to me. I shrugged.
Derek came back a few minutes later with a bag containing two bottles of grape Mad Dog 20/20. I noticed Ben was holding another bag, and pretty much figured out I just bought them both their evening spirits. Derek handed me a wad of bills and told me I looked pretty. I feebly smiled back, and Eowyn snatched the bag and directed me onward like a rag doll.
We sat at Eowyn's for a while, guzzling the Mad Dog while I intermittently sobbed, gulped and hiccuped. She wasn't a big talker and I didn't really want to talk, so we listened to music for a little while. After about a half hour I started to get really tipsy and also really angry. I don't remember much after that except that I think I needed some fresh air, and stepped outside. I found myself wandering, Mad Dog in hand, down the street aimlessly. After a few minutes, it started to drizzle, not enough to be rain but just enough to cause my beehive to transform into a wasp nest. Fuck, great, I thought.
Then I tripped over the pointy tip of my Fluevogs. I didn't fall down, but it was just enough to scrape the topside of the leather and damage the tip. Fuck, great, I thought.
I continued my stumble, heading southwards. I passed the market, with its huge glass windows, and glanced over to see my reflection stare back, a girl with a lopsided, melted updo, black lines of mascara streaked down her cheeks, smeared red lipstick, capelet askew off one shoulder, bottle of shitty booze in one hand and a broken shoe on her foot. I wiped my nose with the back of my hand, smearing my lipstick worse. Fuck, great, I thought. Well, the dress still looked okay. I looked away and kept walking.
I wandered down Harvard Ave for a few blocks, and as I passed by Harrison, I heard someone call out something, and I looked up. Down the block, on the north side of the 7-Eleven there was a concrete slab that served as a bench. Sitting on it was that punk kid Ben, and he was apparently yelling something at me. I couldn't understand him, so I slowly turned east and walked up to him. He patiently waited.
"I was saying, you look sad," he repeated himself. "And also, can you share? I'm all out." I looked at the Mad Dog in my hand, shrugged and gave it to him. He snatched it up, mumbled a thanks and quickly looked around before swigging. I noticed he had a cane in his other hand and I pointed to it, I think I drunkenly inquired about it.
"Oh yeah, this is Big Ben's," he was referring to another local punk who resembled Lou Ferrigno. "I'm holding it for him." He tapped the ground with it, then pointed at me with it. "You," he said, "are unhappy. You need to tell me all about what's wrong. Come sit over here and tell me your troubles."
I sat on the bench next to him and immediately started some kind of girlish babble. He signaled for me to shut up, looked around again, smiled then patted his knee. "I'll hear you better," he said. He was clearly flirting but I took it with a grain of salt; Ben was known to be a flirt and had pretty much dated or hooked up with every high school girl I knew, except me. He was very charming though, and even surly Keri had a soft spot for him. He didn't think much of Sean and had made that clear to me on multiple occasions in the past. And at that point, on that evening, I wasn't thinking much of Sean either. I promptly sat on Ben's knee.
"Guys are dicks," I said. "They sure are," he agreed. "I hate guys," I said. "As you should," said Ben. I laughed. "I have always hated you," I booped his nose. He grabbed my booping hand and said, "Well, okay, that can change, right? Its loud out here, let's go to my house and you can tell me all about that."
Ben picked me up and I wrapped my arm around him so I wouldn't fall down and we started down the street, when suddenly I heard "YOU GET OFF HER RIGHT NOW!". I turn my head to see my friend Eowyn marching down the street toward us. She grabbed my arm and started yelling at Ben, something about being a dirty dog. "Julie wants to come with me, right?" he asked me, a big grin on his face. "Yep," I said, then hiccuped.
"She's drunk, she doesn't know what she's doing, you damn asshole," Eowyn hissed at Ben and yanked at my arm. Ben yanked back on my other arm and I was now a pinata. Back and forth they argued, and back and forth I went, both of them pulling with greater and greater force until I think I said "I'm going to throw up", and Ben let go. He put his hands up in mock defeat and backed away, still grinning, cane still in hand. "You win," he said to Eowyn. "You know where to find me," he said to me and winked, then turned to join a small group of his friends that had gathered to watch this spectacle. Eowyn grabbed me around the waist and steered me down the street, grumbling. I was pretty much out of steam and let her lead me home.
I don't remember anything else except Eowyn had carefully removed and hung up my dress before putting me to bed. When I woke up it was miraculously unscathed. In borrowed clothes I went home, carrying my dress carefully with me. Once home, I hung it at the back of my closet, blew it a kiss, then gobbled up a handful of aspirin.
The following Monday, I bumped into my English study partner at school.
"Where were you?" he asked me. "I had hoped we'd get a picture or something, or maybe dance? What happened?"
I gave him a long, quiet look, then shook my head.
"I should have said yes," I said to him. "I'm sorry I didn't. I hope you had fun."
A few weeks later, I sat down next to my study partner in class, and he tapped my arm. He handed me a picture of him and his date at the prom.
"I thought you might want this," he said. I looked at it for a long time, at the vase of roses on a pedestal next to him and his date, the black and white checkerboard floor. He sported a sharp looking tux and red tie and his date wore a crepe pink dress. "Thanks, Jovy," I said.
"It would have been fun with you, you know," he gave my arm a quick squeeze. He knew how much work I put into my dress, I had been talking about it to him all year and he had patiently listened to me describe the beading process and how to make bodice alterations, and I realized right then and there that it wasn't that guys are dicks. I was the dick.
Hey, Kyle, hey, wake up!
I need to add here, I thanked my friend Eowyn a few years later for tearing me off of Ben that night. I was drunk and stupid, and I would have regretted going home with him, not because I had a boyfriend I was mad at, but because a year later I bumped into Ben at The Underground, a dance club in Seattle. Had I gone home with Ben on Prom Night, I would have been too embarrassed to say hello that evening, and we would not have repeated that entire scenario a second time around, and this time there was no Eowyn to save me from my foolish decisions. However, this time around, I took him home with me and 30 years later, he's still here.
About a week ago, I drafted up a post about my most recent painting, "St Thecla and the Deer", which is currently in France for the Chimeria event, which opens early October. The painting was created specifically for this event, which is themed by life-affirming mythology. I was given permission to pursue a Christian subject, and I believe I was the only artist to do so, but only because my case for St Thecla was so impassioned.
However, the post I wrote up was blighted by frustration, like a bad Irish potato. I won't deny that the painting was probably one of my most frustrating creations and even my humanist friends pondered whether it was cursed. Everything that could go wrong certainly did so. But I came at it with a sense of blame, fingering every nearby element as to why things went wrong, when, in actuality, the problem lay in the painting's intent.
Let's start with the initial intent: St Thecla herself. St Thecla was an early Christian, a follower of St Paul. A member of the noble class in Turkey, Thecla overheard St Paul's gospel as she sat by a window in her home. Overcome by the Holy Spirit, she was so moved by the gospel of Christ that she denounced her engagement (she was a young girl with a hefty dowry) and chose instead to follow St Paul and the path of Christ. Her mother, furious, sent the authorities after her, and Thecla was arrested, her punishment being death by mauling of beasts. However, upon being thrust into a local coliseum ring, the female lions amongst the group of animals made a ring around her, protecting her, and her life was spared.
Thecla was not a wilting flower; being very beautiful, she was often accosted by men during her wanderings, and had no problem staving them off on her own, with little help from St Paul or her other companions. Intelligent, well spoken, and deeply committed to the cause of Christianity, St Paul assigned her an Abbey and she became the first Abbess. In her 80s, her Abbey was attacked by marauding Arabs, and she was able to stave them off and save the Abbey.
She was a popular saint up until the 10/11th centuries, when the Church felt she was an inappropriate female saint (versus, say, the Virgin Mary). She was too autonomous and headstrong of a figure, they felt, a poor role model for the weaker vessel, and she was wiped from Western gospels. If it weren't for the Orthodox church, she'd be a blip in Christian lore, but she remained a strong and steady saint in the eastern church, and in the last 50 years her cult has grown.
In Christian symbolism, the deer represents chastity. St Thecla took an oath of chastity, even cut off her hair as a symbolic gesture.
My painting represents the moment Thecla recognizes her calling. She holds a fallow deer in a field, with birch trees in the background and a large, looming cloud. She's mostly in shadow, the sunlight creeping up from behind her. Birch trees are not indigenous to Turkey, but I find them mysterious and interesting and fun to paint. There are brambles in the horizon that look a little like razor wire, representing her hardships to come, and the cloud veils the future. Her dress pattern vaguely resembles the female reproductive organs - I noticed this as I was painting it, it wasn't intended at first. All the things she sheds in life- marriage, children, dowry, family ties - these things were all that mattered to a young affluent woman of her culture, and she shed them all to serve the gospel of Christ. All the things that make her a pretty portrait are just an illusion. I intended to make the deer the most realistic part of the painting, even though it was the actual symbolic figure, in order to drive home the head-flip of fantasy and reality.
So this, in a nutshell, was the original intent of the painting.
I now see that the painting process was riddled with problems because my own state of mind was elsewhere, and that manifested as compositional mistakes, color palette problems, value issues, and finally actual weirdness like my brushes going missing (they were in a traveling case, and the thing disappeared for weeks, and popped back up literally an hour after completing the painting, in a bizarre location nowhere near my studio). The painting should have taken a few weeks to paint at the most, but it took nearly six months. While I was painting, I was dealing with the feels of closing my longtime gallery, detoxing off a medication I'd been on for years, having an Addisonian Crisis and hospitalized (adrenal failure), ending my tenure as a curator, moving my painting studio, fighting with the IRS over tax returns, and finding out our building was being sold. I also realized I couldn't travel to Sedan, France, to the opening of Chimeria, as my health won't allow it.
The frustration, disappointment, and sadness veiled the clear path of creation, making the painting process a very rocky road. My mind buzzed the entire time I worked. I made the weirdest rookie mistakes again and again, often winding up sanding down the results and starting over. The fact that the painting came together at all is a miracle, and really came down to the last few painting sessions, the last few glazes. In hindsight I can see all the missteps, but while I was in the thick of it, I was blinded by the things swirling around me, completely unable to connect with the painting until the very end.
Many of the things plaguing me at the time have since resolved themselves, or I've come to terms with. For me, the lesson of St Thecla was the reminder that there is a Bigger Picture; the tornadoes of Now don't represent the totality of a weather system, and even they have an expiration date. There's nothing wrong with disappointment or sadness, frustration, resentment: they're just feelings. But they can manifest themselves into a reality, gunking things up, especially if they manifest into the creative process. As I channeled all this into the painting sessions, I gave myself a far worse time than it could have been. And much worse, I missed out on the relationship I could have built with this painting.
The other night I had a strange dream, which I summarized and sent off to my friend, a Lakota Indian who happens to be rather good at analyzing dreams. He didn't interpret it, but asked me a series of questions that allowed me to unmask the dream's lesson, which was a pretty good one.
In the dream, there is a crow. This crow (whom I'll just refer to as Crow) starts a game of pulling young chicks out of nests, dropping them down to earth, then mauling them before biting their head's off. Crow seems to enjoy this gruesome bloodsport, and after a while the local bird community suffers a great loss in its next generation.
I see Crow's game and am upset by it. He pulls down a young Robin chick, who is crying. He hasn't completely finished with a little finch chick, who is pretty much dead, so the Robin is hopping about in distress while Crow works on biting the finch's head off. I crouch down and pick up the Robin and carry it back to its tree and worried parents.
I walk back to Crow and I scold him. I tell him that this game is terrible and destructive. Crow cocks his head and looks at me and I can tell he doesn't agree with me. Finished with the finch, he flies back to the Robin's nest to retrieve the little chick.
I then wind up spending my time in wait, trying to catch him in the act and rescue the little chicks he steals. This is time consuming, and since Crow is wise on me, he devises little counter actions of his own. It becomes exhaustive on my part, and I realize I can't spend all my days spying on Crow.
Since Crow is clearly unphased by his actions and consequences, and my counter to save the chicks isn't always successful, the only other option to end the game is to convince Crow to play another one. While the dream ended here, it made me realize that in life, you're going to come across situations that you find unjust, broken, dysfunctional, destructive. Your kneejerk response is to point out how wrong this is, or how wrong these people are. Often, you are met with opposition, anger, or simply nothing at all. Now you are at war. You fight the injustice, and sometimes you're successful, sometimes you're not, but it becomes a consuming battle.
Crow is traditionally a very wise trickster. Trying to outwit Crow is a fruitless challenge. Going to war with Crow can also warrant results that are not in your favor. And really, locked in this situation, no one is happy.
Taking the time to understand that the game he is playing, then devising a new game that satisfies those motives, will ultimately end the game. If Crow is convinced that there is something better to do with his time than steal chicks, he'll move on. He may never understand the vulgarity of his actions, he may never pay the price of killing little chicks for sport, but if the results stop the terrible injustice and bring about peace, its worth the effort.
In this current day, the dream of Crow is a potent one, its strong medicine. It tells me that I need to explore other options in solving problems, and to do so, I need to better understand the motivations of those around me. If I want the world to be a healthier place, I have to work to find solutions that entice others enough to end their current dysfunctional ways. This is the hardest path to walk, but the most rewarding.
"St Thecla and the Deer" is slowly (I and emphasize "slow" here) coming along. I had electricians tearing apart the lower half of my house, including my home studio. My painting studio at Mainframe/Krab Jab Studio was an oven, due to the intense greenhouse August we're experiencing in Seattle. Plus, I was working long days preparing for what is now my last curatorial show.
As I've stated in an earlier blog post, I realized she's gotta go through veils of glazes to get where I want her, particularly with her skin tone. I actually went into the studio to work on that, along with adding her damask blue patterning on her dress. However, I really wanted to add blackberry brambles into the horizon line, and textured the grass, which I hadn't really touched in a while. I also felt that the deer needed more work, I hadn't done anything to it since I first painted it. I didn't get too far; after about three hours, the temperature in the studio soared up into the high 80s and a nice heat headache began to bloom. I started making rookie mistakes, and to boot, I've lost most of my good brushes ("misplaced" is probably more accurate) so I'm using spares, along with a makeshift mahl stick. All this is a recipe for potential disaster.
I probably have about 5 more glazes to apply to the painting ("glazes" are thin, transparent layers of paint that basically tint the surface of a painting). I want to do a little more definition work to Thecla herself, and soften up her hands. Her hair actually flows down her dress but I will add that after I add the damask blue pattern in. I have a few more weeks to work on her before she's finished and ready to varnish, frame, and ship out to France. I'm fairly confident I can get her to where I want, but boy did I learn my lesson on cutting corners in my process!
My dad took me to one of those gourmet cheese stores when I was four. I think he was looking for a cheese platter gift for his parents; I'm not really sure why we were there, actually. I loved places like that; they always smelled good, but most importantly, they often had racks and cases full of chocolate and candy.
While he was being assisted by the shopkeep, I ran free about the store. I had a bloodhound nose for the candy section and in less than three blinks I was standing in front of a large, long rustic shelf with bins full of all kinds of candy and chocolate things: malt balls, caramels, peppermints, toffy, chocolate wrapped in amusing animal shapes. Just the smell of it sent me into a sort of sugar high. I'm sure a dribble of spit probably dripped down my chin, eyes dilated, face flushed, the whole nine yards. I was probably temporarily insane.
I was like a crack whore - I had to have a hit, right there, right now. I shoved my little hand into the malt ball bin, which actually had a little scoop attached by a piece of twine, but fuck that. My hands were tiny and I was only able to fish out about three of them, and right before I shoved them into my maw, I could hear my dad from the other side of the store yell out, as if psychically tethered to my dopamine riddled mind, "Kid, behave yourself. I'm almost done, don't touch anything!" I froze. Shit. He knows.
I slowly, painfully put the malt balls back into the bin. Dammit, I thought (well, I probably thought something more like "gosh", but it felt like a dammit). I knew he wasn't going to let me get anything, and I can't leave this place without a heavenly taste of ambrosia that sat in front of me, taunting me. I scanned the shelves. To the right of me, parked conveniently waist-high, was a bin full of chocolate coins in gold mesh bags, the kind Jewish families dole out on Hanukkah. I side stepped myself on over, and stared at this golden heap of Yum for a moment.
I noticed that there were coins that had escaped their mesh bags and loosely settled about the bin. I grabbed one and examined it, flipped it over in my hand, inhaled its milk chocolate fragrance. I looked left, then right. The coast was clear. With little claw nails I tore into the foil and shoved that thing in my mouth, and oh my god, it was delicious. The foil hadn't even hit the floor by the time I grabbed another orphaned coin, and another, and another. The bromine sent me on a trip and for a moment I was gone, transported into another universe, Stanely Kubrick styled.
I felt a firm hand on my shoulder, then another hand grab my sticky little fist. I hadn't noticed my dad and the shopkeep coming down the aisle, didn't even hear him say, "Jules, what the hell are you doing?" I think he said it twice, I'm not sure, but suddenly I had two adults leaning into me, grabbing my little arms, peeling the remaining coins from my hand. Caught with the proverbial pants down, I knew I needed to think fast to get out of this jam.
"Jules, you're stealing, you can't eat chocolate unless you pay for it," my dad said. He turned to the woman who worked at the store, a pleasant enough looking girl with long blond hair. "I'm really sorry, she normally doesn't do this kind of thing."
The girl nodded sympathetically and looked at me and sweetly said, "Do you know what stealing is?"
Look, I'm four, but I'm not stupid. Of course I know you gotta pay for it. But I'm was four, I had no job, no money, and no self control. I also had a big imagination, and was fully aware that if I didn't pull myself out of this, I could go to jail. Or worse, they'd put my dad in jail, which would get me off the hook but I'm half Jewish and half Irish Catholic, and the genetic guilt alone would crush me, let alone being the family pariah, forced to sit at family dinners with my crazy cousin Gary, the other family pariah, at a little card table in the corner of the room, trapped within the billowing haze of his booze vapors and conspiracy theories forever more.
Four year olds under pressure can be unbelievably brilliant. They are fully aware that most adults think they're idiotic, even innocent. I was no exception; I had a shot at playing the innocent card, albeit once, so I had to make it good, I had to make it stick. So I batted my big dark eyes at the shopkeep, pouted my chocolate stained lips, and said, in my tiny squeaky voice: "I thought that they were free because they weren't in the bags, and no one is going to buy coins not in the bags, so it was okay, right?"
Cue the "aaaawwwww" from the studio audience, folks.
"No honey, they're not free, but you didn't know. Now you know," she laughed and patted my head. My dad laughed too and his vice grip softened.
She turned to my dad. "It's okay, sir, don't worry about it, no harm done. I'll get a napkin to wipe her face."
My dad thanked her, then leaned into me. "Do you understand now, that was stealing? You can't take what's not yours, even if it looks free. Did you learn something here today?"
I nodded. Oh yes, yes I did.
Thus began my childhood life of crime.
I swear to God this is a true story.
So in the 80s it was rather commonplace to send teenagers to psychiatric wards. Depressed, anxious kids were skirted off to places with inconsequential names like Willow Lodge or Fairfax, where they were dosed up with cocktails of antidepressants and valium and an abundance of talk therapy before being released to their nervous parents living on the dream that somehow their kid would be, you know, normal again. Or at least a little bit quieter.
I'll cut to the chase: I lost my virginity to a teenage ninja I met at a nuthouse.
At sixteen I was sent to Fairfax in Seattle. I was a depressed New Wave girl with swastikas cut into her arms, and that was a sure ticket to the psych ward in those days. Unfortunately Fairfax was the hottest place in town for wayward teens, and they did not have a bed available for me. The next best thing was the University of Washington's psychiatric wards. These were actually meant for adults but they would occasionally take the overflow of teens, so I wound up on their first floor, which was the least violent of the two wards. Less stabbings and random choke outs, so it was kid friendly.
I could write a whole novel about my stay at the UW, which was for three weeks, but I'll focus instead on how I hooked up, literally, with the other teen staying a few rooms down from me. Sean was 15 and got hit in the head, I can't remember how, and I guess his personality changed. He was fighting in school and having blackouts, but mostly, he truly believed he was a ninja. Other than that, he was a typical blond American teenage boy. Which means, of course, he was pumped full of hormones, and being cooped up in a psych ward with another teenage girl, well, heck, why not steal off for a makeout session between group therapies?
The orderlies kept an eagle eye on patients, so it was really hard for Sean and I to get any further than a 30 second feel up or a kiss or two. He wasn't really my type - beyond, you know, being a ninja - but he seemed like a nice kid and he was cute. I wasn't his type either, but he liked New Wave music and I seemed kind of like an exotic bird to him, complete with floppy bangs over the eye and side of my head shaved. But mostly I was female and not as crazy as the other females in the psych ward. So there you go.
He got out before I did, but we decided to keep in touch, which translated to us carving out actual private time together to get rid of that annoying pesky thing called virginity. I was going to be released to my aunt and uncle, who were acting as my foster kinship family. He lived out in Des Moines, somewhere "out there" south of Seattle, so organizing dates together was a little tricky. After I first got out, he bussed up into Seattle to meet me in the University District and we strolled around and not much action occurred. We decided it would be more advantageous that I come down to Des Moines, to his house. His parents generally did not know how to deal with a ninja son, so they left him to his own devices in his room, which translated to blissful privacy.
This is where things get weird.
We agree I come down on his birthday - he was turning 16. I get to his house, which is banal and suburban. I meet his family: Mom is nervous and overly helpful, Dad is older and quiet, his brother has an Asian wife that speaks no English, and his brother is a discharged Marine. His mom made dinner for Sean's birthday, so his whole family is there, and me. We all eat, I'm asked the normal polite questions people ask of new girlfriends, with the exception that no one talk about the psych ward.
Then Sean announces he and I are going up to his room, please don't come up anyone. We are going to lose "it" now. My jaw dropped, and I turned beet red, but no one says a word, they keep at the eating motions, never missing a beat. His mom leans over, picks up his plate and just calmly says, "okay dear, we're going to be in the living room watching TV. You two can join us later if you want."
Sean grabs my arm (I'm still holding a fork) and leads me away from the table. The family is still eating, like nothing is happening. He leads me up to his room and closes the door. The room has posters of ninjas literally wallpapering every inch of wall space. The ceiling is painted black. He has several numchucks hanging off one of the walls, and he excitedly takes one of them down and shows it to me. Then he starts doing some kind of numchuck routine, whipping it around, behind his back, over the shoulder, etc. He got over excited and tried some kind of new move, some kind of flip around the elbow. The edge of one of the chucks clocks me right over the eye and I fell over backwards on his bed. "Shit, you okay?" he asked. Then "Please don't tell my mom."
He puts the numchucks away and pulls out his throwing star collection, and explains the lethality of each one. Then he starts tossing them all over the room. Yeah, safer than the chucks, just fling those suckers everywhere. I instinctively cover my head and duck, wincing with every thwop of a star embedding into something.
He ran out of stars to throw, and plopped down beside me on his bed, thinks for a second, then ran over to his record player. "You'll love this," he said. He puts on Dead or Alive's "Youthquake", drops the needle on "You Spin Me Round", then flings himself on the bed. He then proceeds to strip all of his clothes off. Mind you, I'm still fully dressed and nursing my forehead. I'm also having second thoughts about this whole transaction.
Sixteen year old girls do not like being virgins. I hated the term and all the connotations that went with it. It was something to be shed, like a snakeskin. And in my head, I wasn't really looking for perfection on the scenario, I just didn't want to answer that constant, stupid question boys asked all the time. So sure, being in this room with this ninja boy, a headache, and Dead or Alive -- I HATED Dead or Alive -- on the turntable was not particularly ideal. I looked over at this naked, grinning idiot through the curtain of bangs, and I think I sighed heavily. Sean grabbed at the collar of my vintage dress, and the button popped off and rolled under the bed. Great, now my awesome new dress is fucked up too, I thought. He didn't seem to notice my irritation, he probably didn't care much. He gave me a kiss, that softened me a little bit, but I was really weighing out my options at that point. Things were not going well. "This is the best birthday," he whispered. Um...really?
Yeah, I caved.
It was terrible teenage sex. It probably lasted about 10 minutes but felt like an eternity in Dante's Hell. Fumbly, really poor timing of movement, plus there was that hymen breakage that I'm telling you was like twenty hangnails tearing off all at once. Riffing off the squeaks of muffled agony, Sean finally wrapped it up in what was probably his own little boy-to-man opus, dug around his junk for a moment to procure his little deflated condom, and presented it to me. Good God, yuck, I said. He studied it for a second, like a scientist peers at a beaker he's holding up to his nose with pinky finger out, and he smiles at the latex sack of swimmers like one watches an aquarium of guppies. Grabbing his pants off the floor, he motioned for me to sit still. Before I could say anything, he opened his bedroom door, condom still in hand, and at the top of the stairs that faced the living room, announced loudly "I just had sex, Mom and Dad! Look!".
"Good for you, son," I heard his dad yell back.
"Do you two want any cake?" I heard his mom say.
"No," answered Sean, "Because now its Ninja Time"
He came back into the bedroom, shut the door and went to his closet and closed himself in. After a moment, he emerged all in black, in an impressively detailed ninja costume, including the black socks and sandals, head covering and bandana over his mouth. In his right hand, he held a very sharp and real looking katana. In his left hand, the floppy condom.
The record player restarted itself, and as "Spin Me Round" flayed the air around me, Sean leaped onto his dresser and began stabbing the air in earnest. From there, he dropped down to the ground, rolled, and hopped back up in front of me, whoosh whoosh went the katana blade, narrowly missing my nose. He leaped onto the bed, whoosh whoosh. I wondered how many imaginary adversaries were dying in that room, but more importantly, when was he going to disposed of that disgusting goddamn condom.
At that moment, I heard a distinct rapping coming from his bedroom window. I looked over, and in my horror, I saw three teenage boys, tapping at the glass, apparently hanging off a branch of the large tree growing beside the house. All three are dressed exactly like Sean.
"Sweet, its my crew!" says Sean, and pulls the window open and the three boys crawl in. Now I have four pimply, teenage fucking ninjas standing in front of me.
"She's pretty," says one.
"She's not naked," says another.
"Did you guys do it yet?" says the third.
"You guys are late, dudes," says Sean, giving them all hi-fives (he finally set the condom down).
"Are you fucking kidding me?" I yelled. And yes, I was fully clothed, minus one missing button. By this point I was off the bed, and I'm sure my face was a nice shiny shade of fury. All four of them were giggling like morons. In the background, Pete Burns is belting out "I need your loooooovvvvve". ...
Then suddenly, like four startled cats, they all start to ninja in some kind of weird ballet of whooshes and hops. It was like I wasn't even there anymore. I looked about the room in disbelief, not so much horrified as I was mystified, like I had visited some lost tribe on the Amazon and a strange never-seen-by-white-man ritual struck up on a foreign timeline.
Without a word, I turned and walked out of the room, down the stairs and into the living room, where Sean's parents sat watching TV, laugh track booming. His mom looked up at me and smiled.
"Are you having a good time?" she asked me.
"I want to call my aunt. I want to go home." I think that was the last thing I said that evening. I sat in the kitchen, silently, alone, until my aunt arrived to pick me up. Not a word did I say when my aunt rang the doorbell, just a silent, swift exit. I could hear through the ceiling the continued thumps and bumps of four teenage ninjas triumphantly executing their dance of fecundity, no doubt with a dirty old dick balloon in the left hand. I never saw Sean again.
For years, I told no one this story. I finally relayed it during an interview for a documentary film called Lost. The filmmaker laughed so hard during filming, she had an asthma attack and accidentally knocked over the camera. That's gold, she said. Pure gold.