Taking mind
Mental health through a daughter’s eyes
By Tiara Etheridge/The Daily
EDITOR’S NOTE: The following narrative is Daily Staff Writer Tiara Etheridge’s experience living with a mother suffering from mental illness. The Daily felt it is important to tell this story to show the shortcomings of the mental health system and the need for better mental health resources in Oklahoma and the U.S.
The eyes seem vacant, the face puffy. The corner of her lip twitches nervously. The physical effects of her mental illness render her virtually unrecognizable. Then she speaks, a rich alto, and I know she is my mother.
Many people like my mother fall through the cracks in the Oklahoma mental health care system. With inadequate funding, poor accessibility to services and lack of education, the Oklahoma mental healthcare system addresses only a fraction of the hundreds of thousands who suffer from mental illness in Oklahoma.
I know this first hand.
My mom is not a monster. She is not a caricature. She is just human — a tiny detail most people tend to forget. It is easier to depersonalize and typecast her as crazy. Because of her mental illness and the erratic behavior it entails, my mother has been reduced to a one-dimensional character.
“Your mom is a nut,” my fiancé Christopher says after listening to one of my mother’s long-winded voice mails. I feel a twitch of irritation, but I forgive him. It’s a safety net for people, generalizing the unfamiliar into a static category.
I’m standing before my mother’s trailer house in Tishomingo. Spotted, black mold creeps its way up the dingy sides of the house. I told her to spray some bleach on the mold—it could make her sick. But she never listens to me, or she forgets. Bits of grass poke out of the slanted slabs of the concrete sidewalk leading up to the cinder-block stairs, and shards of shattered glass glisten around me.
I slip my hand into my pocket and feel for the small, round case of pepper spray I brought just in case. I don’t trust my mother’s husband. He leers at me.
I don’t despise him. I just don’t trust him.
I rap the door, which is missing a doorknob. I hope my mother hasn’t heard the knock or isn’t home. I turn around. I could still jump in my Hyundai and race off, but that would only validate my mother’s latest delusion and the very purpose of my visit.
I have come to allay my mother’s fear that my fiancé’s father is a drug lord determined to keep me from her. I’ve come to ask her to leave his family alone.
She’s threatened to hit Christopher’s father with her truck the next time she sees him. My mother’s threats have to be taken with considerable weight. She has been to jail twice over the past seven years after acting on similar delusions. The first time, she attacked me. The next, she attacked a police officer.
This is the alternate universe in which I have lived for most of my life, adapting to my mother’s moods, paranoia and, sometimes, bizarre behavior. My childhood was a traumatic whirlwind of social isolation, exacerbated by the ignorance and stigma surrounding my mother’s condition. We were a family plagued by a frightening combination of mental illness and extreme poverty.
She answers the door. Her bleached blond hair looks brassy and disheveled. Her shirt is ringed with sweat stains. She’s been collecting junk iron today.
“Hey, baby, come on in,” my mother says, smiling enthusiastically and gesturing me into the trailer house. “Are you going to spend the night? We have a room made up for you.”
I shake my head. The idea of spending a night beneath the same roof as her husband makes my stomach churn.
My mother sits down on an old, plaid sofa with well-worn seats sagging from years of use. She pats the cushion beside her. It smells of dust and appears on the verge of collapsing, but I take my chances and sit down. She talks with animation, her expressions magnified because she is happy to see me. And she is profoundly proud of this trailer house. It is the nicest place she has lived in for seven years.
I look around at the ruins she calls home, the delicate fretwork of black mold lacing the ceiling, the walls yellowing with age. The musty scent of mildew circulates through the humid air, and the acrid odor of dog feces pierces my nostrils. I wonder, not for the first time, how such a bright woman could have ended up in this dilapidated trailer living with a developmentally disabled man.
My mother will tell you the government is the source of her problems, a theory she has believed so fervently that a small scar remains on the nape of her neck where she tried to dig out a “chip” she thought the government had implanted. I used to attribute her theory to paranoid delusions, but now I think she may be on to something. The more I learn about the government’s lack of initiative in providing treatment for mental illness, the more I think it should share the blame for my mother’s chaotic life and the effect it had on my two sisters and me. At the very least, it is clear that the mentally ill are not a priority in our nation.
Mental illness without treatment
A few years ago, a psychiatrist diagnosed my mother as suffering from bipolar disorder with schizophrenic tendencies and psychotic episodes. Like many Oklahomans with mental illness, she receives no continuing treatment, therapy or medication for her illness.
The 2005 National Survey on Drug Use and Health found that Oklahoma ranked among the five states with the highest rates of mental illness, with 13.26 percent of residents 18 years old and older having experienced a severe mental disorder. According to the Oklahoma Department of Mental Health, only 5 percent of people suffering from mental illness receive the treatment they need.
The 2005 survey estimated that about 343,000 adult Oklahomans had suffered from mental illness. If only 5 percent, or about 17,000, received adequate treatment, that means roughly 326,000 went without.
The number of Oklahomans who have suffered from a mental illness would fill OU’s Gaylord Family-Oklahoma Memorial Football Stadium to capacity more than four times. In contrast, those who received adequate treatment would occupy less than a quarter of the seats available in one stadium.
Steven Buck, Department of Mental Health deputy commissioner and co-author of a national report on Oklahoma’s mental health care system, said such numbers are a shame.
“We must ensure that all Oklahomans have access to appropriate care to achieve recovery,” Buck told me in a recent interview. “We ask for nothing less when we speak of providing supports and services for other chronic illnesses. It is unacceptable to accept anything less when talking about mental disorders.”
Germany, and the toll of stress
My mother, father and I moved to Germany when I was 6 months old.
When my mother stepped off the plane onto German soil, German police greeted her with submachine guns. The same day, 10 minutes after my parents ate at the PX, a convenience store on the military base, a bomb went off.
My mom couldn’t speak the language, and when she got lost, which was often, she couldn’t ask for directions. One time I locked myself in the car while the car was running. My mother was stranded outside the car pleading for help, but the local people shrugged their shoulders. They couldn’t understand her.
“It was just one thing after another,” my mother’s mother told me. “She lived in terror. She never knew when she went to work if she was going to be able to come back home to you.”
While we were there, the Chernobyl accident occurred.
In April 1986, one of four reactors at the Soviet Union’s Chernobyl nuclear power plant overheated and exploded, releasing a radioactive cloud that spread radioactive residue across much of the western Soviet Union, most of Europe, and eastern North America.
My father, whose looks had always been reminiscent of Clark Kent, aged decades in a matter of months. His black hair became spotted with gray; his emerald eyes faded to gold.
The U.S. Army, as a precaution, told everyone to stay inside, to not let the kids play in the yard and to not eat locally grown produce or drink milk from local cows. My mother listened to the televised announcement on the Armed Forces Network and looked at me in horror.
It was too late.
I had already been playing in the outside sandbox and drinking milk during the three months following the explosion.
When I was later diagnosed with severe hearing loss in both ears, the audiologist theorized that the nuclear fallout from Chernobyl might be the culprit.
In any case, I became suddenly deaf, and my mother began acting differently.
“I think she would have gotten this way eventually, but [Germany] sped it up,” my Granny said. “It was too much stress.”
Our lives became increasingly tumultuous after we returned to the United States and my parents separated, leaving Mom with custody of me and my younger sisters, Starlet and Christina. I saw many things I’d rather forget.
My kitten Zepé
When I was in middle school, I had a beautiful calico cat, its coat a quilt of gray, tan and white patches. She had bewitching blue eyes. I called her Zepé, a nonsensical name I thought sounded cool. She slept beside me at night, a small furry ball the size of a fist tickling my ear. Her purring would put me to sleep.
One day, I wrapped Zepé in a light-green crocheted blanket my mother had made me and set her on the couch. She looked so cute when she slept, so content and cozy, her pink paws peeking out from the blanket.
I went to the bathroom. When I came out, I found my mother, a hefty woman at 200 pounds, sitting on the couch. A piece of light-green crocheted fabric peeked out from underneath my mother’s thigh.
“Mother,” I whispered.
She looked at me. “What?”
My voice wavered. “I put Zepé on the couch.” With an outstretched arm, I pointed to where she sat, but I didn’t want her to get up.
My mother jerked up.
A matted ball of gray and tan fur lay in the center. Even from 6 feet away, I could tell Zepé was dead. The metronomic thud of my heart echoed in my ears, and tears burned my eyes.
My mother went into a state of shock. She did not want to accept that she had accidentally killed an innocent creature, my pet and sleeping companion. So she slipped into her alternate world.
I watched in silence as she tried to resuscitate the animal, her mouth pressed against the kitten’s rigid jaws. Disgust stirred in my stomach.
“Mother, she’s dead.”
“No, by the power of God, she will be resurrected. By the power of God she will come to life. She is alive.”
Mom kept my dead kitten in a shoebox, sprinkling Sevin dust on her cold fur. “Maybe she doesn’t feel well because of fleas,” she said.
She forced milk and ground-up food through the kitten’s dead jaws each day for about a week. Finally, I had to do something. I didn’t want my kitten’s body defiled any longer.
When my mother wasn’t looking, I grabbed the kitten’s body and put it into a manila packaging envelope. My heart fluttering and cheeks burning from the fear of being caught, I slipped out the back door.
With a shovel in one hand and Zepé’s body in the other, I went to the ravine behind our house and dug my kitten’s grave. As I placed the manila envelope with Zepé’s body into the shallow hole I had dug between rambling bushes and a great oak tree, I fell to my knees. Wracking sobs shook my 10-year-old body.
Crying seemed like the natural thing to do.
I was frustrated. I couldn’t tell my mom she was sick and needed help because there was nowhere to get help. I couldn’t tell my friends that my mother did things that scared me because there were no friends.
I was completely alone without a voice, and tears were the only form of expression I had left.
Town policy: Stay out of it
In Tishomingo, where we settled, people knew my mother was “different.” But it was unofficial town policy to stay out of other people’s affairs, even when there were children at risk. This fear and discomfort with my mother’s illness created a downward cycle for our family.
No one wanted to hire my mom because she was “crazy,” so no extra money came into the house to support us.
On the few occasions when my mother was able to obtain a job at a nursing home or McDonald’s, she was inevitably fired for her erratic behavior, or her illness hindered her capacity to perform the required duties.
The inability of mentally ill people to hold jobs costs the Oklahoma economy from $750 million to $860 million in impaired productivity and forgone earnings, according to a blue-ribbon task force that presented its findings to state officials in 2005.
The unpaid utility bills
In the winter of 1999, an ice storm blew through Oklahoma, knocking down utility towers and snapping power cords. Then the water department shut off our water because my mother had failed to make the payment again.
My sisters and I were outside scooping up snow, but we weren’t playing. The snow was our only water supply.
My hands burned as I placed handful after handful of snow into a large turkey pot that we would carry into the kitchen to store water for drinking and bathing.
As the clumps of snow laced my fingers with icy pain, I cursed the utility company under my breath.
Relief finally arrived when my hands went numb. Then my teeth began chattering. I clamped my jaws shut, but my head continued to bob from the cold. I looked at my sister Starlet’s small hands; they were turning purple. I swatted her arm and told her to go inside the house with our baby sister Christina.
My mother looked up and smiled. “This isn’t so bad,” she said. “God provided for us. We still have water.”
The poverty my family experienced was exacerbated by my mother’s religious fanaticism, a symptom of her mental illness that caused her to interpret biblical anecdotes in a very literal manner.
My mother insisted on tithing half of our child support check, our sole source of income at $500 a month, to the First Baptist Church in Tishomingo. Our rent was $275. The utilities were turned off regularly.
“Jesus said that the poor widow gave more than all the others,” my mother said, referring to a Bible story in which a widow put all the money she had into the offering box.
I wish Jesus had said take care of your family, I thought morosely.
My mother felt compelled to give complete strangers our toys, our food and even our clothes if they asked for them. “Jesus said if someone asks for your coat, you give him your robe as well,” she often said.
One day a young girl who lived across the street came over. She was worse off than us, her brown hair never brushed, her teeth always dirty, and her body smelling as if she never took a bath. Both of her parents were drug addicts.
My mother’s generosity was well known and well exploited in the neighborhood. The young girl asked my mother for a pair of shoes to wear on her dirty, bare feet.
My mother looked at my sister Starlet and told her to take her shoes off. My mother graciously handed the purple Velcro sandals to the young girl. Delighted, the girl waved to my mother and left. I looked at Starlet.
Starlet had no shoes on her feet.
“Those were your last pair?” I asked, knowing the answer. She looked at me, and her blue-green eyes dimmed with hurt. It was disconcerting to look into the defeated eyes of a 4-year-old. She walked away, her head downcast.
Shoes were not just shoes in our house. They were protection against the elements. Shoes protected you during the sojourn from the back door to the kitchen, where a legion of baby cockroaches raced across the tile floor and slugs trekked across the carpet. Now, Starlet faced that journey with naked feet. As she crossed the hallway, clumps of cockroaches clung to her feet in dead, squishy mashes. When she reached the bedroom, I wiped her feet off with my shirtsleeve.
The extent of our poverty was so great that my mother would send me to Sooners, the town grocery store two blocks from our house, so I could take toilet paper from the public bathroom for us to use.
Once, while rolling toilet paper around my hand and stuffing the balls of paper into my coat pocket, the store manager walked into the bathroom. She stared at me but said nothing.
I took the toilet paper from my pockets and set it on the ground in shame.
As I walked home, I couldn’t shake the sense of humiliation and self-reproach.
It had never occurred to me by taking the toilet paper I was stealing. I made a vow to never steal again.
My mother found me on the bathroom floor humped over a small heap of fabric, tears glistening on my mottled face. I was cutting my socks into small squares. She lowered herself to the ground beside me.
“What are you doing?” she said, stroking my arm. “Those are your socks.”
“I’m making us toilet paper,” I said. “I don’t need socks.”
My mother looked away, and put her face in her hands. She had beautiful, long slender fingers. They trembled.
“What have I done?” she whispered after a brief silence, her voice shaking. I knew she must have been crying. “What have I done, Lord, to make this happen?”
Oklahoma’s failing mental health
In 2006, the National Alliance on Mental Illness released a report assigning the United States a D grade for its efforts to assist adults with mental illnesses. Eight states received Fs. The report, the first comprehensive state-by-state analysis in 15 years, graded states based on 39 criteria. Oklahoma received a D.
The fact that Oklahoma scored even that well reflects concerted efforts by state officials and health care providers over the previous decade to improve services. When I lived with my mother in the 1990s, the mental health care system was regarded as one of the lowest funding priorities for state legislators.
The situation has improved since then, according to state and national officials. For example, the National Alliance of Mental Illness praised the state for creating 14 Assertive Community Treatment teams to address crisis situations with community-based psychiatric treatment, rehabilitation and support.
Still, serious problems remain. A long-term shift from in-patient care to community-based services has reduced the state’s capacity to treat many of the people who need help the most. Two state mental health hospitals were closed during the past two decades, and the increase in community-based programs was not enough to make up the difference.
“Deinstitutionalization wasn’t necessarily wrong, but it became a rationale for leaving homes and families and communities responsible for taking care of people who were a threat to themselves or others,” said Mary Jane Argentos, psychologist and former clinical director of the Norman Alcohol and Drug Treatment Center before the state shut it down as part of the deinstitutionalization movement. “It went from one extreme to another. There’s a place and a real need for inpatient treatment.”
Jeff Dismukes, Oklahoma Department of Health director of public information, repeats a similar sentiment. “The fact is that in Oklahoma our service delivery system does not have the capacity to meet demand.”
Because of a shortage of beds, my mother’s two brief stints at Norman’s Griffin Memorial Hospital, the state’s only remaining publicly supported mental health hospital, proved ineffective in controlling the symptoms of her illness.
Today, my mother’s mental health continues to deteriorate. Because the closest mental health hospital is two hours away, the prospects for recovery appear bleak at best.
“The bottom line is that there are barriers keeping people from accessing the help they need, and we must break down those barriers,” Dismukes said. “Further compounding the problem of accessing services is that the number of available mental health professionals, especially in rural areas, is limited.”
Of course, there is no guarantee that even if Oklahoma had not been a laggard in providing mental health services, my mother would have experienced fewer problems or our lives would have been less traumatic.
But it could have made a difference.
Early intervention greatly increases the ability to provide appropriate treatment and hasten recovery, and there have been significant advances in treatment options over the years. But many people still don’t know where to turn for help.
When I was a child, my mother picked up every available pamphlet at the county health clinic as she waited for me to receive my school shots. Not one of those brochures discussed mental illness, its symptoms, or the services available to those in need.
If my mother had recognized her own symptoms in one of those cherished pamphlets, she might have sought help. She prided herself on being a good mother who encouraged her children to reach their full potential and strive for the best in everything. As a student at Murray State College, she had taken several sociology classes that focused on parenting and how to raise a family. She wanted to be a good mom, and she would have never willingly put us in harm’s way.
But in the early stages of her illness, she appeared to have no clue that something was wrong. Neither did anyone else, because there was no information.
If there had been more psychiatric beds at state hospitals, my mother might have received more extensive treatment once her problems became more obvious. During her second stay at Griffin Memorial Hospital, she appeared to be getting much better while taking a prescribed medication dispensed by hospital personnel. But she was sent home after two weeks to make room for another patient, and she could not afford to continue buying the medication herself.
Following her hospitalizations, better treatment and oversight might have enabled her to control her symptoms, hold a job successfully, keep the utility bills paid and maybe even find a better house for us to live in.
Equally important, a better-funded and better-structured health care system might have made life more bearable for my sisters and me.
If our family had lived somewhere else—perhaps Connecticut, Ohio, Maine, Wisconsin or South Carolina, the states ranked highest for mental health care delivery—our lives could have been dramatically different.
But we didn’t, and here I am in this decrepit trailer house, begging my mother to abandon her latest delusion and see the truth before she hurts someone.
After a 20-minute visit, I realize the futility of the trip. My eyes water from the stench of dog feces, and my arm itches. I look, and a flea jumps off my sleeve.
I try to explain that Christopher’s father is not a drug dealer, and that her threats are causing his family to resent her.
“No!” she shouts incredulously. She pats my hand and lowers her voice. “I saw him in jail. He’s put you with Christopher to spite me. He said so.”
I close my eyes and stop trying. She is certain she is right, and nothing I say will convince her otherwise.
I give her a hug and kiss. Her breath is sharp with halitosis.
She waves to me as I back out of her yard.
In her place, I can picture myself in the future, my hair disheveled, my clothes ringed with sweat, my eyes oddly vacant.
Other people may look at me and see an ambitious journalism student who looks forward to graduating summa cum laude next spring. But not even a college education can grant me immunity from the debilitating claws of mental illness.
I wonder if the people who applaud my successes would look at me differently if I became mentally ill. Would their admiration turn to wariness, their praise to ridiculing stares—the same reactions my mother receives on a daily basis?
My fear is not based on delusions. At least one person from each generation in my maternal grandfather’s family has suffered from a mental illness.
I only hope that if, or when, it happens to my sisters or me, attitudes will have changed and viable services will be available.
I hope. I pray: One day, things will be better for people like us.
