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Excerpt of Playing the Genetic Lottery by Terri Morgan

Monday, April 23, 2012

Every morning when I first wake up I wonder and I worry. Before getting out of bed, before registering my full, aching bladder, before remembering what day it is and what responsibilities await -- I assess myself for signs of the disease. I roll my eyes around the room, looking for phantoms that may have appeared while I was sleeping. For odd, moving sights, like my dresser transformed into a rolling automobile or roaring lion. To make sure that the clock radio on my nightstand or the framed photos on the bookshelves haven't cloned themselves overnight and morphed into twins or even triplets.
Then I listen carefully. I hear Jason snoring lightly beside me. I hear the ticking of the living room clock. I hear the jangle of Rosco's tags as he rolls over on his bed in the corner of our room. I hold my breath and listen for mysterious voices or alien noises. Then, once I'm sure I'm not hearing any unusual, strange sounds, I ask myself---silently so not to wake my sleeping husband----a series of questions.
 Who am I? What's my address? Where do I work? How old are my children? What's my husband's name? Who's the president? Only after the correct responses to the first five pop into my mind, and I chuckle to myself after answering "Calvin Coolidge" to the sixth question because I know good and well that Barack Obama currently resides in the White House, do I know I'm safe for another day. If I still have my sense of humor, and apparently my faculties, I've still escaped it.
Escaped the mental illness that afflicted and consumed my mother, my father and my brother. Escaped the schizophrenia that robbed them of their minds and me of a childhood.
 I know that at 32 my chances of developing schizophrenia are miniscule and keep shrinking with every passing month. Despite that, I'm still obsessively terrified of developing the devastating mental illness that was an ever-present part of my formative years. It's shaped who I’ve become, and I've worked for more than half my life to recover from its impact. My father, mother and brother all lost the genetic lottery, and their misfortune continues to ripple through my life even today.
 My name, at least the name I go by now, is Caitlin. That's the name I chose for myself 18 years ago when I fled my childhood home of horrors. I cast off the name on my birth certificate for the new one in hopes of casting off the madness that was my family.

Chapter 1

 There are a lot of popular misconceptions swirling around about schizophrenia. Some people, especially those who are fortunate enough not to have had first-hand experience with this devastating, disabling mental illness, think schizophrenics suffer from a split, or two vastly different personalities. I imagine they picture someone like a benevolent, beloved school teacher who bakes cookies for the neighbors in her spare time turning into a vicious profanity-spewing crone who butchers small cuddly animals with her bare hands during episodes. Others, who are steeped in popular culture, believe all schizophrenics are geniuses, like the Nobel Prize-winning mathematician John Nash. These kinds of misconceptions are annoying, but not surprising, considering there are so many mysteries about schizophrenia that have yet to be solved.  Despite billions of dollars worth of research, scientists have not yet pinpointed the causes of schizophrenia, although they believe a combination of genetics, brain chemistry and brain abnormality are involved. They do know that there is a hereditary basis for the susceptibility of the disease, meaning that schizophrenia often runs in families. Unfortunately, it runs in mine.
 My father, Keith, was 16 or 17 when he began changing from an outgoing, straight-A student and angelic-voiced singer who performed each Sunday in the church choir into a foul mouthed chain-smoking punk who was afraid to leave his room for days on end except to steal cigarettes or use the bathroom because "they" were out to get him.  My mother, Lisa, was diagnosed with schizophrenia when I was 2, although I suspect she was afflicted long before that. After all, she named my brother, who was born 3 years before I was, Jondalar, after one of her favorite characters in Jean Auel's “The Children of the Earth” book series. Although she was young, just 21 when she had my brother, and impulsive like many young adults, saddling your newborn with a moniker that would ensure he'd be the subject of relentless teasing throughout his school years isn't what I consider to be the actions of someone fully steeped in reality. Our father would sheepishly shrug his shoulders whenever my brother demanded to know why he didn't stop Mom from putting Jondalar on his birth certificate. Jon found Dad's lack of action especially troubling, considering Dad had grown up being called "the Wart," because his last name is Swarthout. On the upside, the name Jondalar was such an irresistible taunting target that Jon was largely spared the indignity of being dubbed a Wart like I was throughout my elementary school days.
  Dad also failed to stop Mom from naming me Ayla after the main protagonist in Auel's novels, character I suspect Mom sometimes wished she was. Fortunately for me, my brother promptly nicknamed me Ava, as his young tongue struggled unsuccessfully to pronounce my given name. I returned the favor when I began speaking, shortening Jondalar to Jon. While my nickname stuck, Mom refused to fully accept Jon's. When she was well, she would tolerate it grudgingly, and even use it herself occasionally, but when she wasn't well she insisted on correcting---and berating--- anyone who dared use the diminutive version of his name within her hearing.
 I don't remember the onset of Mom's illness, so I have to rely on family stories; mostly the memories and tales of my brother, grandmother, uncle and granddad. I've heard Dad's version too. But since his illness has grown steadily worse throughout the years, I've given up on trying to separate what's real and what's fantasy when it comes to his memories. What I do know is that Dad was stable and working at his father's hardware store when Mom got sick and was diagnosed. Mom was working as a waitress at an old-fashioned all-night diner that specialized in serving cholesterol-laden meals to overweight patrons.  She worked in the evenings, while my dad worked days, so my parents could avoid paying childcare costs. My folks were struggling to make ends meet, and Mom had to wash the gravy stains out of her uniform every night after she got home so it would be dry and ready to iron before her next shift.
 When Mom wasn't working, or busy taking care of Jon and me, she was painting. Like her mother, my Nana, Mom loved to paint. Both were very talented artists who enjoyed moderate success and renown while I was growing up. Their works were displayed and sold in several local galleries. My earliest memories are of the reek of turpentine, oil paints and cigarette smoke, and the sight of my mother at her easel in the living room. She'd lean partially finished paintings against the walls and furniture, creating a colorful, ever-changing maze for us to negotiate to reach the couch, the TV, or the phone. She'd work sporadically; at times with an energy and passion that led her to forget who she was, that she had children to feed until we started crying, or Dad came home from the hardware store and startled her with his arrival. Throughout my childhood, these periods of artistic frenzy were usually followed by painting droughts.  When they occurred, Mom would stand for hours with a brush in her right hand and a cigarette smoldering in her left staring bleakly at a blank canvas.
            The painters' block periods, as Jon and I called them, were followed by long stretches where Mom would retreat to her bedroom stay curled up in her bed, leaving Jon and me to fend for ourselves. When Mom would re-emerge goofy phrases and nonsensical words would often come out of her mouth, which confused and frightened us kids. The longer those spells lasted, the less coherent she became. Dad would ignore the fact that Mom was progressively getting sicker until some crisis occurred, and authorities stepped in.
 The first crisis occurred when Jon was five and I was still in diapers. Apparently after weeks of strange behavior, Mom came into the bedroom Jon and I shared and started ranting about Satan. I started crying, Jon recalls, which set Mom off. She began yelling that I was full of evil, and ordered Jon to cast me out of the house. Jon grabbed my hand, pulled me out of the room and together we fled out the front door screaming in terror. A neighbor overheard the ruckus and called the police after leading us into her home and locking the door.
 Jon claims I cried the entire six weeks that Mom was in the hospital being diagnosed and treated for the onset of schizophrenia. Nana, who took care of us while Dad was at work, never disputed his account, but would spare my feelings by diplomatically adding, whenever Jon brought the subject up, that "both you poor kids were pretty upset.”
 Family lore has it that I was a difficult child. I suffered from colic, apparently, and cried almost constantly during my first six months of life. The colic and the crying stopped suddenly one day, Nana remembers, only to be replaced a few months later, when I began to begin to talk, with a bad case of the "nos."
 "You were a pretty stubborn kid," Nana told me when I was complaining to her that Kayla, my first-born, had a mind of her own. "She takes after you. Your terrible twos began when you were about 16 months old and didn't stop until you were in Kindergarten.”
 Fortunately for the rest of the family, Jon, who'd been pestering my parents for a brother or a sister since he began talking, adored me. In one of the first pictures taken after my birth, my eyes are closed while Jon's are focused on me like I'm the new toy fire truck he'd been begging our parents to buy him for weeks. His fascination with "my baby" as he called me continued even while the colic-induced crying put everyone's nerves on edge. Delighted to have a future playmate, Jon apparently never displayed any of the anguish and anger at being upstaged by a new baby that Kayla did when her sister Taylor was born. Relatives said Jon loved to play with me, making faces and singing to me when I wasn't sleeping, eating or crying. And when I was crying, which was apparently quite a bit of the time even after the colic cleared up, to hear my mother tell it, Jon would interpret my needs, telling my parents "diaper," "hungry" or "ti-ti" when there was a physical reason for my howls. And when there wasn't an obvious reason for my unhappiness, Jon would entertain me until the tears stopped or his favorite cartoons came on.
 "Thank God for your brother," Mom would say throughout my childhood whenever she was healthy, coherent and annoyed. "If I had had you first, you'd be an only child.”
 Whenever my sense of guilt gets so strong that I can't help but bring it up, Jason insists I wasn't responsible for my mother's illness. So do all the therapists I've seen over the years. But I know that stress can, and often does, play a role in triggering any latent disease. And after I became a parent for the first time, exhausted from the middle of the night feedings, and frustrated when Kayla would cry for what appeared to be no apparent reason, I found it harder to accept their reassurances.


 I've always loved to read, but Jon inhaled books. As a toddler, Nana recalls, he would pick up a book and head for her lap whenever she visited us, which was often as we lived in the same town ---Cumberland. Cumberland is the county seat of Cumberland County, which lies in the Willamette Valley in Central Oregon. There are about 100,000 people living in Cumberland these days, up from the 75,000 or 80,000 souls who called Cumberland home when I was growing up. Although I live in Washington State now, I was a true Cumberland native; third generation on my father's side, and second generation on my mother's. Growing up, that counted for something, as the locals sneered at anyone who dared move into their town. Unless you were born in Cumberland's Community Hospital, you were forever deemed an interloper and looked down upon with suspicion. Long before he was aware of his native status, Jon was obsessed with books. Whenever Nana, or any one for that matter, read to Jon, they'd say that he would stare solemnly at the text, trying to interpret the meaning behind the letters. My kids, when they were little, would focus their eyes on the colorful illustrations in their books while I read to them, but Jon was different. Jon, although he inherited Mom's artistic talent, was fascinated by the lettering, not the pictures, and could hardly wait to break the mysterious code and begin reading on his own.
 If Jon couldn't find an adult to read to him, he would set me up on his lap and pretend to read to me. Nana remembers with pride Jon reciting his favorite books to me, and making up his own stories while "reading" to me from books he hadn't yet memorized. He learned the alphabet before his fourth birthday, and asked Mom almost daily how much longer before he could start going to school.
 When the big day finally arrived, Mom put me in the stroller, took Jon by the hand and escorted him two blocks away to the elementary school. Dad must have taken some pictures of us on the porch before we left, because years later I found an envelope with "Jondalar's First Day of School" scrawled on it years later.  In the snapshots, Jon is dressed in what appears to be brand-new jeans and a button down shirt so new that it had two lines of creases running vertically down the front and a third crease horizontally along his belly. He's wearing bright white sneakers below his rolled-up pant cuffs, and a big grin. I'm bundled up in my stroller, peering out from beneath the hood of a jacket. Mom is in her usual painting clothes, looking proud and perhaps a bit sad that her first-born was growing up so quickly. When we arrived on campus and found the Kindergarten classroom, Mom says there were at least a half-dozen kids clinging tearfully to their mothers outside the door. Jon dropped Mom's hand and skipped through the door happily. When Mom turned the stroller around and started home, I started crying. She claims I didn't stop until we returned to the school a few hours later and saw Jon come out of the classroom.
 If Mom's memory was true, and not a figment of her exaggeration, as Jon and I used to dub many of her stories, I'm not sure if I was more unhappy to see Jon leave me behind as he headed off on a new adventure, or if I was afraid to be alone with Mom.
 With Jon in school three hours a day, Nana recalls that Mom and I initially settled into a routine. We'd escort him to school after breakfast and escort him back home before lunch. In between, Mom would try to get some painting done. To keep me entertained, on mornings when I wasn't out with Dad, and to prevent me from interrupting her work, she bought me a set of little plastic pots filled with brightly colored and, presumably, non-toxic paint, and some fat handled brushes.  She'd set up a child-sized easel next to hers and sketch the outline of a person or object onto a piece of paper. She'd then tack it to the easel for me to color in with paint. “Not everyone has their own special coloring book,” she'd tell me, although technically the hand-drawn sketches were on individual sheets and not in a book. While I'd splash away happily, getting more paint on my clothes and the floor than the paper, she'd concentrate on her artwork. Eventually, when I got quicker at covering her sketches with paint, she purchased pads of paper and would sketch dozens of scenes to keep me occupied with while she worked.
 Jon's kindergarten schedule, as I realized when Kayla started school, fragmented Mom's day. I'm sure she must have been frustrated, like I was years later, to have her day chopped into small windows of time bracketed with child pickups and deliveries. As her creative time dwindled, her fuse must have shortened. Jon would steer clear of Mom after lunch, heading for our bedroom or the backyard, usually with me in tow, until Dad came home from work. When I was older, and he'd talk about that period of time, he'd remember it as the era when Mom was always mad. And she stayed mad, even after she stopped picking up Jon at school, and he began to walk himself home.
 In those days, Dad worked at Granddad's hardware store. But his real vocation, the work he loved to do best, was woodworking. He'd converted the tiny, one-car garage next to the house into a wood shop, where he'd spend hours sawing, planing and sanding wood. He turned tree branches and planks of oak, redwood and walnut into beautiful, conversation-generating pieces of furniture. Mom still has some chairs he made, which are still gorgeous and sturdy despite years of rough treatment and countless moves. I can remember playing in the sawdust on the floor of his workshop, smelling the scent of freshly cut wood, and Dad brushing curled wood shavings out of my hair and off my clothes with his hands before we'd go back into the house.
 Dad was often clumsy, nicking his fingers and drawing blood when his chisel would slip. Years later I realized his clumsiness was most likely a side effect of his medication. But in those early days, I was blissfully unaware of his illness. I only knew that Dad cut himself so often that he kept a First Aid kit in the workshop. When I'd hear him swear suddenly, I'd look up from whatever I was doing to see if he was bleeding. If he was, I'd help him clean up the wound with cotton balls dipped in hydrogen peroxide, squeeze some ointment out of a sticky tube onto the wound and cover it with a Band-Aid if it was a small cut, or bandage it up with gauze and adhesive tape if it was a large one. Dad would say "thank you, Doctor Ava," when I was done, and reward me by applying a Band-Aid on my hand or finger to match his own. I don't know why, but I loved wearing Band-Aids, although when I endured an actual injury, I would shriek with pain and fear.
 Dad would usually return to his woodworking after I finished nursing him. But sometimes, likely when the cuts were bad, he'd put his tools away and call it a day. When that happened he'd slip into a funk, and go in the house and either pick an argument with my mother, or go into their bedroom alone and close the door behind him. Jon and I would steer clear of him for the rest of the day, puzzle over the sudden change in his mood, and wonder what we had done to set him off.
 Dad worked weekends, because those were the busiest days at Swarthout Hardware, and had Mondays and Tuesdays off. Before I started Kindergarten, I'd often ride with him on Monday mornings as he went about his routine. First, we'd go to the clinic, where I'd stay in the waiting room playing with one of my dolls, which I carried everywhere, after the receptionist called his name, and he disappeared out of sight. He'd return a few minutes later and collect me. After strapping me back into my car seat, he'd say, "Well, I got shot. What do you say we go to the grocery store to celebrate.”
 I hated shots and couldn't understand how he could go so willingly, week after week, for an injection. But it didn't seem to faze Dad, although I realize now that his weekly injections were torturous to him for other reasons besides physical discomfort. I'm not sure what anti-psychotic drug he was on at the time, what medication his psychiatrist had prescribed to helped keep Dad's paranoid delusions at bay. But along with quelling the voices in his head, the medication made him tired and clumsy.
 On Tuesdays, Dad would see his psychiatrist, and usually took me with him, likely to give Mom a break, so she could paint, or depending upon her moods, stare blankly at the canvas without being interrupted by me. In retrospect, Dad was probably uncomfortable with his psychiatric visits, but I loved them. The office had an entire room packed with toys. Shelves lined three walls and were loaded with dolls and plastic figures in all sizes, shapes and colors. There were boy dolls, girl dolls and dolls that looked like grown men and women. There were plastic animals, plastic soldiers, plastic cowboys, plastic Indians and plastic women. There were a half dozen or more doll houses, with three sides so you could reach in through the open wall and rearrange the toy furniture and move the dolls from room to room. There were colorful cars, plastic tools and boxes and boxes of crayons. There were small boxes of fat crayons and large boxes packed with regular-sized crayons in more colors than I'd ever seen before. There were baskets of paper, both white and colored, on the shelves and large mugs holding sharpened pencils. The receptionist would lead me into the room, pull down the toys I wanted to play with that day and set them on the low table in the room. I'd play so happily that I sometimes cried with frustration and disappointment when Dad came in the retrieve me.
 Those tears would stop by the time we reached the car, because I knew the next stop was Swarthout's Hardware Store. All the employees there would fuss over me while Dad and Granddad disappeared into Granddad's office to talk. When they re-emerged, Granddad would let me pick out a candy bar from the impulse racks next to the checkout counter, making me promise to share it with Jon. Then Dad and I would walk to the bank, where he'd cash his paycheck.
 Despite his treatments, Dad still had rough periods. Our weekly excursions ended when I started Kindergarten. So did my time playing in the workshop, because by then Dad had stopped working on his projects. At the time, I thought I had done something wrong, something to make Dad so mad at me that he was punishing me by not spending time with me in the workshop. It was only years later that I realized it was his illness, not my behavior, that put an end to our special times together.

 Like Jon, I was looking forward to starting school. And Jon was the one who first noticed the banner on the front of the elementary school advertising Kindergarten Sign Ups. We badgered Mom and Dad to enroll me for the upcoming school year with no success. Mom was in one of her blank stages and unwilling to leave the house other than to buy cigarettes. Dad was retreating to bed as soon as he came home from work and sometimes missing work, hiding behind the closed bedroom door for hours. So finally, Jon took matters into his own hands. He took my hand one hot, sunny late summer morning and walked me to the elementary school.
 Although I'd been to Jon's classroom in the school annex, it was my first time inside the main school building. It was cool inside, and it smelled of dust and white glue. Our steps echoed as we walked down a long hall to a room with a colorful sign on the open door.  A nice lady inside the room asked where our mother was. When Jon said she was sick, she gave Jon some papers to take home for our parents to fill out.
 Back at home, Jon tried his best to get Mom or Dad to sit down and take care of the paperwork. Finally, he asked Nana to help, but only after he'd picked up a pen and written "AVA" where he should have written Ayla, thus sparing me the kind of teasing he endured each year the first time his teacher called roll and mispronounced his given name.

 I was skipping with excitement when Jon and I walked to school together for my first day of Kindergarten. "You'll like it," Jon said. "You've got Mrs. Beachman, and she's really nice." Jon escorted me to my classroom, past a couple of kids clinging tearfully to their mothers. I bounded into the classroom, and looked around. "Hi," I announced to the friendly looking woman standing in the middle of the room. "I'm Ava.”
 "Welcome," she said. "I'm Mrs. Beachman, and I'm you're teacher.”
 "I know," I replied. "My brother told me. He says you're really nice.”
 She smiled and told me to sit down in one of the small wooden chairs that were arranged in a semi-circle in the middle of the room.
 The first day was fun. We sang songs, and we colored pictures. Mrs. Beachman read us a story. We learned where to put our jackets, and that we had to stay in our seats unless we were told otherwise. We ate a snack and lined up at the door for recess. Time passed quickly, and I was surprised when the bell rang, and Mrs. Beachman said it was time to go home.
 My classmates filed out and found their mothers, and in a few cases, fathers who had come to take them home. Neither of my parents had come, and Jon was still in class, so there was nobody to meet me. I stood uncertainly in the hall for a few moments, then turned around and went back into the classroom.
 "Can I stay here with you?" I asked.
 "Oh no," Mrs. Beachman said. "It's time for us both to eat lunch. And then I have to get the room ready for the afternoon Kindergarten class.”
 "There's another class?" I asked in amazement.
 She smiled and nodded, and led me out of the room.
 I trudged home, where Mom was in a painting trance, and went in the kitchen and ate some cold cereal straight out of the box for lunch. Mom took no notice of me, so when I was through, I went outside and walked back to school. I was waiting by the closed door of the Kindergarten classroom when Mrs. Beachman arrived to open the room back up for the second session.
 Gently, she explained that school was over for me for the day, and that I couldn't stay. When I started to cry, she walked me to the office. After a while, Nana arrived to take me home.

Terri Morgan
Terri Morgan is a freelance journalist who's work has appeared in dozens of different magazines and newspapers. She is the author of four sports biographies for young adults, and the co-author of two others. She is the co-author of two books on photography: Photography, Take Your Best Shot, and Capturing Childhood Memories, The Complete Photography Guide for Parents. Playing the Genetic Lottery is her first novel. She lives in Soquel, California.