There’s no P in my TSD by Sandra Joy Stein
Posted on June 27, 2016
This story is part of The Establishment’s series on PTSD Awareness.
“Sandra!” the nurse screamed from my son’s bedroom. My head shot up from my pillow. I jumped out of bed and ran down the hallway. Turning into his bedroom doorway, I found my son sleeping soundly and his nurse looking at her iPad. I didn’t bother asking if she had yelled for me; it was clear that she had not.
“Sandra!” a different nurse had yelled two nights prior. Apparently I did not hear her. My husband, who did, woke me after our son stopped seizing. The seizure resolved without medical intervention, but my husband worried that the air conditioner’s hum had drowned out the nurse’s shout. Since then I have slept fitfully in the heat.
“Sandy!” My husband yelled during our son’s first seizure five years earlier. “Get me my phone and get dressed! I’m calling 911.” An ambulance took us to the emergency room. Forty minutes and an intravenous dose of Ativan later, the seizure finally stopped. We were admitted to the neurology floor. After 10 days of watching our son lose his ability to walk and talk and swallow, we learned he had autoimmune encephalitis.
“Mommy!” my son shouted while still able to talk, as his supine body conveyed toward the large upright hole of the CAT scan machine. “Help me! Save me!”
The day before the first seizure, our perfectly healthy son walked happily down the street holding my hand, talking about subway trains. Now he was only either severely agitated or heavily medicated. I wanted to follow him into his body’s netherworld to snatch him back from his disease.
“Mommy, are you okay?” an unfamiliar woman’s voice called through the hospital room’s bathroom door. It was 6 a.m. and she heard me retching, again. I hated that the hospital staff called me Mommy when the only one entitled to do so had lost his ability to speak. I loathed the smell of the astringent soap I used to wash my hands and face after the gagging and heaving my body endured every morning I re-awoke to this nightmare.
After six weeks in the neurology unit, the encephalitis affected my son’s brain stem, which stopped reliable communication with his heart and lungs. We were transferred to the ICU. Crisis alarms rang. Medical teams ran in. Doctors and nurses took over for my husband, who was already performing CPR. My son thrashed in pain and agitation as his brain withstood his immune system’s assault. Doctors told us his prognosis was good, if we could support him through this acute phase via multiple life-sustaining surgeries. The constant beeping, the red crash cart parked outside our door, the stale smell of the doctor’s breath as he stood too close to discuss my son’s “death dives”—I felt nauseous at all times.
Bearing witness to my son’s suffering was all I could do for him. I held his hand. I sang to him. I read to him. I advocated fiercely for him in a medical system ill-equipped to manage complex and little-known diseases. I told him I was there for him while he was heavily sedated and pharmacologically paralyzed. I told him that it would not always be like this. I told him that he was perfectly designed to heal. I told him he had everything he needed to get through each surgery as they rolled him into the operating room. I told him he was surrounded by love.
“Bearing witness to my son’s suffering was all I could do for him.”
I bonded with other parents whose children were also in the ICU and, during the four months we were there, watched several families lose their children. The unfathomable grief gripped me. I could not surrender to the notion that our son might die, but I also could not deny the possibility. I started to assemble the language I would use to let others know of his passing, and then desperately tried to erase those thoughts as if they might influence his chance for survival. I drank Kava tea and expressed daily gratitude for anything I could think of for which to be grateful.
“Sandra, you need to take a break from this room,” a doctor admonished a week after admitting us to the acute in-patient rehab hospital after four months in the ICU. She told us that we needed to relax, to be less hyper-vigilant. “You’re releasing too much cortisol,” she continued, unnerved by our close monitoring of his new nurses, doctors, and rehabilitation therapists. We had caught many medication errors in the prior hospital. We had been our son’s first responders when his heart and lungs stopped unpredictably. We felt entitled to our excessive adrenaline no matter what the new team of doctors thought about it. We refused to leave his bedside.
“I need help in here!” a nurse’s voice interrupted my sleep. I shot upright from the vinyl cot and looked over at my son. At that moment he was perfectly stable. The dreams started as the crisis alarms slowed, not that actual alarms did not still wake me periodically during his now-less-frequent, life-threatening moments. In my early waking hours I could not distinguish between what was real or dreamt. I understood these as symptoms of PTSD, except that the trauma was ongoing. My son was still suffering nightmarish distress. He still had not regained his ability to walk or talk or eat. We were still living in hospitals. He still thrashed in his bed, mouth open, brow furrowed, as if screaming silently. I longed to legitimately call my traumatic stress disorder “post.”
“Sandra, I’ve got this. Get some rest,” a private duty nurse said while pointing to my bedroom. When we were discharged to provide his medical care at home, I did not trust any of the nurses sent to care for him. He was on seizure precautions and risked aspiration. Would the nurses watch him as closely as I did? Did they look at his tilted, shaking head and deviated eyes and see a beautiful, brilliant child, or just a series of job-related tasks? Rarely sleeping more than an hour or so at a time, I felt a perpetual need to closely monitor his care.
“I longed to legitimately call my traumatic stress disorder ‘post.’”
We went back to the hospital regularly for treatments and surgeries. Each time the smell of the bathroom soap caused me to gag. It smelled like terror. It triggered mortal fears and chilling memories. I wanted time to process that initial hospitalization, but his home-care needs and subsequent hospitalizations demanded my full presence every day. There was no past to process or future to anticipate; just the day we were getting through.
Over years of therapies and surgeries and medication adjustments and continued healing, our son regained his ability to bear weight, eat by mouth, and focus his eyes. He started to smile, cry, and make eye contact. We enrolled him in school, entrusting a group of education professionals and a one-to-one nurse with his wellbeing beyond our protective gaze. We tempered our terror of relapse—a common risk in his disease—with our robust efforts to reclaim his childhood and our family life. We started to go on adventures. We played music and had dance parties. We went to museums and created elaborate Halloween costumes. We celebrated milestones (a full year without a single surgery!) and indulged his regained love for ice cream and snack foods. We took him horseback riding.
“Sandy, he’s fine,” my husband tells me when noting my visible concern about a blank stare, or eyes that look fixed to one side, or arm movements that seem rhythmic. Far more often than not, these are not seizures. But sometimes they are and no matter how brief, each one triggers the anxiety of his first.
My continual (as opposed to post) traumatic stress is most evident in the early morning hours. I still hear crisis alarms, and my name screamed from another room. As I transition from asleep to awake, I am never certain if I have to run in to help his nurse or if I can roll back over and return to a dream. We have a monitor I can check from my bed so I don’t impulsively race into his room every time.
“Hey, Mom,” I hear my son say in a recurring dream. He is standing independently, taller than me. We are slow dancing at a reception. A band is playing. Family and friends surround us. He wears a crisp white shirt and a thin, dark tie. I look up to see his broad smile. I don’t know if we are celebrating an accomplishment or a commitment, but as we sway back and forth our mutual gaze acknowledges everything it took to get to that moment.
“I still hear crisis alarms, and my name screamed from another room.”
“Mom!” his voice booms from the other room, startling me from the dream. I roll over in my bed, accustomed to my mind’s workings, and wonder if these phantom sounds will ever stop. Moments later I look at the clock; it is time to get him ready for school. I get up, brush my teeth, and walk leisurely into his bedroom. He is awake and smiling.
“Did you hear that?” His nurse beams, “He just said ‘Mom’!”
I don’t know if I will ever transition my psyche from the stress of his intermittent acute needs to the demands of his chronic care. I wonder whether my manifestations of stress will ever actually be post-traumatic. And I hope, desperately, that one day I will know for certain when my son is actually calling for me in the early morning hours.
Joy Stein, Sandra. “There’s No P In My TSD.” The Establishment. N.p., 26 June 2016. Web. 27 June 2016. <http://www.theestablishment.co/2016/06/27/theres-no-p-in-my-tsd/>.