By Kelli C. Trinoskey
Next to my desk at work, there is a picture of me with my three daughters standing in front of stone formations of South Dakota’s Badlands. Gracy, Mollie and I stand in straightforward poses, smiling at the camera. Tess is off to our side, holding a giant dandelion puff, about to blow the seeds into the wind with a look of pure joy on her seven-year old face. The backdrop of rocks resemble drip sand castles, which could place us at our usual family vacation spot, the beach, except for the green grass wafting in the foreground.
Tess was our goofy, quirky kid who for a few years of her young childhood would only wear her one-piece spandex Spiderman suit or her velour Minnie Mouse coat. Being a twin, she could wear her sister’s matching coat while I washed hers to keep a constant rotation. Half the time we did not even bother with pants.
By the time the picture was taken, she had been diagnosed with sensory issues which explained her affinity for velour and soft fabrics, motor and speech delays, ADHD and some social anxiety. Weekly occupational and speech therapy helped deal with these challenges. School was not easy but none of these things debilitated her or got in her way too much. She still had joy.
Three weeks after taking that adventurous trip and that snapshot, Tess would suffer a traumatic brain injury. She would be in the bathroom bathing Barbie dolls with her sister and climb up on the wet sink. She would lose her footing, fall backwards, and hit her head on the side of the bathtub. The blow would cause a concussion and complex skull fracture.
After some time in the hospital and weeks of brain rest, she would seem to recover. She would go on to first, then second and third grades. However, during the summer before the start of the fourth, she would begin to suffer debilitating anxiety and panic attacks. Things she used to enjoy, like riding horses, only caused distress.
Tess would physically shake when her anxiety grew to a fever pitch. The admonishments she received from teachers for slouching or wiggling in her chair and not following along with the class caused her to refer to school as jail. Self-harm followed. Fairly benign at first with the cutting of her hair, but she would quickly graduate to making small cuts on her arm. And writing out suicide plans on her calendar, noting which kitchen knife she would use. She was just nine.
Daily life included shuffling between appointments with psychiatrists, her psychologist, a neurologist, and her private tutor, all while I worked a full-time job and managed a household. We would tweak meds and throw more meds at her with the hope that some combination would help her, stabilize her, return her to her old self.
Looking at her exuberance in the photo, I wonder, was this current reality also her destiny? Were the smaller symptoms back then, the incessant questions, the overstimulation, and the withdrawal, destined to grow larger as she grew? Did she reach a developmental stage that allowed her to express the constant fear that imprisons her? Was it always there? Or did the blow to her head rattle things so severely that the injury is the true reason that the last seven years have chipped away at and deflated her sweet soul? Did it usher in her now diagnosed bipolar?
For a while, I kept looking for answers. A neurologist explained that we would be treating her symptoms in the same manner even if we could point to the head injury as the culprit. The brain that existed before the fall is the brain we have to work with after the fall. There is no quick fix. There is no going back. There will never be a definitive answer. We just have to keep searching for the right chemical and therapy combination and accept that she could always struggle.
One afternoon last week, I came home from work and found Tess on the back deck, slumped in the swinging chair. Her hair stood on end from her constant twirling and pulling. Even though I have asked her many times to refrain from freight training me the moment I walk in the door, she picked a fight. She lit into me about my not keeping my word on something I had changed my mind about. I repeated my reasons and my stance. Still, she dug in.
I now know the fastest way to open her floodgates is to throw her a life preserver as the water rises and ride out the storm with her. Her tears became a pop-up shower, her moans thunder.
“It’s just been a really hard day with the voices.” She beat her head with her knuckles. “What the fuck can we do to fix my brain? This medicine does not work. Nothing works.”
After nearly five years searching for the holy grail of pharmaceuticals, she is half-right. The meds are not affording her an acceptable amount of relief or a decent childhood, but they are keeping her from the brink. She has not been hospitalized in months.
I let the tongue slip slide. Cuss words are the least of my worries. I managed to not sigh and I motioned for her to make room for me in the swing. Her almost 14-year-old legs dug into my hip bone while she nuzzled my neck.
This is a mild case of anxiety or depression, even though that is what they called it for years as she worsened. This is diagnosed bipolar and maybe even schizophrenia, which is rare and hard to diagnose in children. Auditory and visual hallucinations can occur in bipolar so for now, we work to keep her from ping ponging between mania-filled sleepless nights making slime and the corresponding week of sadness, sluggishness and endless sleep.
Her last episode led me to believe we were knocking on the door of full-blown psychosis. She could not sleep. She was up all night making slime and watching YouTube. I had gotten up a few times in the night to pee and check on her. I tried watching a goat video with her but could not keep my eyes open. I had to work the next day. I stumbled back to my bed and when I woke at 6:30 a.m. to let the dogs out, she was passed out on the couch. Food wrappers littered the floor and blue television light bounced off the marker drawings on her arms and legs. Chocolate war paint decorated her cheeks.
The next evening when I was in the basement doing laundry, I discovered another remnant of her all-nighter; a constructed safe room. I took pictures of the tin foil covering the pipes and vents. I took pictures of the smart board with written reassurances that the monsters and the government would not find her there and she would be safe from all the voices, even Brent. I sent the pictures to her doctors and called for advice on how to casually ask my child about her transforming our craft room into a bunker.
Tess was not happy that I had entered despite her DO NOT ENTER sign but she openly explained her state of mind. That is part of our safety plan – she has to answer my questions. She has to talk to me when it is bad. She said she had felt driven, like by a motor, the night before to the basement.
She stated matter of factly that she knew the government was bugging our house and her laptop, watching, and listening to her. She said she made the signs in an attempt to talk back to the voices and get them to shut up. She explained that Sydney and Shirley had been having a field day telling her to run away. I found a packed suitcase in the side yard the next day. I begged her to wake me up next time so I could give her medicine to help her sleep. Why hadn’t I thought to give it to her when I had awaken?
It is a constant challenge to stay one-step ahead of these torturers who have hijacked her brain leaving negativity and hallucinations in their wake. She has a brain ruled by a drug lord pushing the impulse to jump off the roof and touch electrical wires. It is a brain haunted by gore-filled images of family and pets being murdered.
One voice, named Sydney, tells her she is worthless. She scoffs at Shirley, who has been in her head since the beginning and who has a twisted sense of humor, much like her own. God bless her, she has dutifully tried the many mindfulness and distraction techniques learned in therapy but the voices always seem to win.
This is her brain and there is no quick fix.
”What if I actually do one of the crazy things my brain tells me to do?” she asks.
“I don’t think you will. You are not any of those dark things. That is not you.”
Her glance told me she did not believe me. She wiggled out of the swing and said she needed a break. She wanted to ride her bike. I set off to make dinner. I poured an extra-large glass of red wine. I stuffed black beans and spinach into tortillas and rolled them into neat rows. I busied myself opening mail, tidying up. I settled into distraction.
The thing is, I would settle for glimpses of the old Tess. I would settle for hearing her infectious giggle instead of the maniacal laugh that comes waving the red flag of mania. It is the signal to be vigilant and slow things down. I would settle for the incessant questions that she used to ask out of curiosity (or at least I thought were out of curiosity and not fear). I would return to incessantly washing her two rotating outfits. I would go back to before she told me she fell off the sink on purpose.
Kelli C. Trinoskey is an Emmy-nominated writer who lives in Columbus, Ohio with her family. Trinoskey formed and facilitated the Young Writers’ Workshop at the Thurber House (the educational center that honors the legacy of James Thurber) and served for three years as a writer in residence for The Wexner Center.