Playing the Genetic Lottery - Sample Chapter
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.
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.