When Johnny was born the nurses in the hospital appropriately nicknamed him “The Screamer”. Johnny continued to scream all day and night until the end of his second year; when he finally slept six hours without a tantrum or a night terror for the first time. Johnny would fight to get dressed, fight to stay dressed, fight to be held and fight to be left alone. We would spend hours trying to console him and took daily car rides in hope of a small nap to offer us all a moment’s relief. Naptime was when he practiced rocking his crib clear across his room, in a fit of rage. He was afraid to be alone even in the daylight and terrified of the night. It was impossible to leave him with a babysitter and almost impossible for his parents to maintain composure alone with him. As time progressed, his newer nickname became “Johnny Rotten”; it was our sleep-deprived way of using humor to maintain our sanity. That same year we found ourselves at Yale begging for help from the most sought after physicians. How could a child this young be so difficult, act so threatened? As the night terrors continued so did the violent episodes. His tantrums lasted for hours and were accompanied with biting, scratching and throwing of objects. He would attack his family members regularly and fight to be restrained. He was able to maneuver himself out of a car seat, climb twenty-foot trees, escape out of second story windows and even try to jump out of moving vehicles to obtain safety from imagined threats. At age five he was making small weapons with coat hangers in an effort to protect himself from the intruders that haunted him in the night. He would walk the hallways of our home with his back against the wall, afraid to step forward or turn a corner. He padded his body with pillows and covered his head with a hood; to him even his family was a threat. He was crippled with fear, separation anxiety and had few friends. He missed social clues and inappropriately confused friendly glances his way as suspicious glares. Attending school was a battle that complicated his condition. After many attempts to dart from the vehicle and hide in the school parking lot, we were forced to hire an occupational therapists that would drive him and coax him into the classroom building. With a diagnosed executive function deficit, processing delay, dyslexia and ADHD, we immersed ourselves with all the best educational resources. We found ourselves traveling quite frequently, visiting neuropsychologists, educational consultants and learning specialists. Although Johnny was the most beautiful child in the neighborhood, his face was always flushed, his hands and feet hot and swollen and an agitated disposition surrounded him.
At the age of nine he was admitted to a psychiatric hospital for a three-day assessment, where he regretfully stayed for three weeks; only to witness more violence and was discharged without a diagnosis. On the new medications he was overweight, over medicated, overtly agitated and miserable. During the next few years we continued to hurdle hospitals, dozens of specialized physicians, therapies and unconventional modalities through numerous diagnoses’ that cannot be pronounced. My memories are stored in the books on a shelf written on just about every childhood illness and learning difference. Although he was born to an average family he was in no way average, he confounded even the best of doctors. The rages and physical attacks escalated. And the master bathroom with two locked doors became a safety zone for his brothers. Without hope and desperate for a respite we looked to place him outside of the home. After researching residential treatment facilities over many tears and much anxiety, the first unforgettable phone call came in.
A pediatric psychiatrist two states away had heard of Johnny’s condition through a mutual friend; she wanted to help. She introduced us to the last book we would ever have to read “The Bipolar Child” by Demitri and Janice Papolos and connected us with a specialist in Boston. We released the consultant for residential placement and with an almost immediate diagnosis of Early Onset Bipolar Disorder; Johnny began a trial of Lithium, Zyprexa, Klonopin and mega amounts of fish oil. In ten days I remember him asking, “Is this what it feels like to be normal”? Johnny now age eleven, finally had the right diagnosis and was on his way with the appropriate drug classifications. That fall with a good IEP and an aid at his side, he was able to attend school in a self-contained classroom for almost a full day. However, there were still days when his occupational therapist reported that his frequent anxiety related trips to the boy’s room to splash cold water on his reddened face and hands, had not subsided. Life was not perfect the monsters would occasionally find their way back to haunt his brain, harness his anger and fuel of fire of fear. But we remained grateful for the down times. Johnny astonished us with his perseverance to accept the good with the bad. Of course raising three teenage boys in the same household is a challenge for even the sanest of families, but ours was unique: filled with love, God’s grace and Johnny’s demons. The meds were tweaked along the way and he graduated to a one-on-one boarding school where he spent most of his high school years. He managed to hide his fears there and cool himself with portable fans that surrounded his bed. With the stellar support of the schools staff, he turned his learning differences into an honor role record. We attended counseling and dealt with Johnny’s bouts of anger only on family weekends. We began mending our broken relationships at home and literally repairing the many holes in our doors and walls.
With an array of academic scaffolding put in place and a good out of state psychiatrist, remarkably, he attended a University. Unfortunately, not long after, with his newfound independence he had discontinued his meds and began abusing drugs and alcohol. Life as we knew it came to a screeching halt. Our home was once again an arena of rage but this time with a grown man and his more progressive three-dimensional intruders. His psychosis was running his life and ours. He begged for help and warned us of his danger. Johnny was no longer able to suppress his intense fearful and violent thoughts. For the first time he began to describe their proportion and frequency, they were beyond comprehension. I will never forget the hair-raising read of his journal, it was followed up by a closed-door visit to my bathroom where I purged the images from my gutt. That is where I saw his demons firsthand; they followed him throughout his life. They were demonic, graphic in nature and drew real blood; Johnny’s blood that was dripped onto the pages of his journal. He had come up with patterns and plans on how to escape a room or building even before entering it, the enemy was everywhere. His elaborate preoccupations had been unrecognizable to us and even to his closest friends. We had only been witnessing the symptoms, not the cause and that cause was certainly grounds for paranoia. The False Evidence Appeared Real, even to me!
We frequently found baseball bats in corners of our house and he was now strapping a nightstick to his leg in the event of an attack. His room was stocked with pocketknives; I would even find them between his sheets. This is when the cutting and self-inflicting of pain began. His arms are permanently scared with a dozen burn marks and knife slashes. Johnny was attempting to build up a tolerance to pain in the event he would meet his worst, most threatening perpetrator. He was on high alert! Physical fights in our home were the norm and delusional outbreaks crippled him. Even a misinterpreted gesture could send him into a fit of rage smashing things in his wake. If he was reprimanded for inappropriate behavior he took it as a full out attack and would retaliate threatening his family members with weapons. He would frequently take off in search of a place he could feel safe. We even found him attempting to pitch a tent on the beach in the dead of winter. Fear stole Johnny’s security and caused us to question ours in his presence. As the heat continued to rise our beautiful boy attempted to end his life. The intrusive thoughts could not be suppressed, so he would end them his own way. Beyond desperate, we found ourselves at a clinic in Washington D.C. where Johnny became a pincushion and a fixture in the scanning room. That is where the second unforgettable phone call came in.
A supportive friend back home had secured us an consultation with Demitri Papolos. After a brief conversation, Dr. Papolos agreed to see Johnny that following week. “Fear of Harm”, a newly identified subtype of pediatric-onset bipolar diorder was now his new and last diagnosis. Intranasal ketamine replaced conventional pharmacology and hope replaced despair and suffering. With only twelve children onboard Johnny became lucky number thirteen. The abuse of drugs and alcohol slowly diminished and the frequent violent episodes became fewer and far between. His rather large physique, built up and maintained with heavy weight lifting, was no longer necessary for protection. He decided to put it to good use and focused his energies and enrolled in a program to become a personal fitness trainer. Despite his extensive learning differences, he miraculously managed to pass the exam the first time with an A. In twelve short months Johnny is now a professional fitness trainer with all incriminating records of his past dismissed. With a few added meds and ketamine he is sleeping under a warm blanket; his temperature is at last regulated. He is learning to get to know himself, the new man that no longer wrestles confusion and paranoia. We now are working through unresolved dilemmas that have been engraved in our minds, but most of the demons we are fighting are from the past and only show their faces on mere occasion. It seems as time continues the ketamine continues to offer more relief and Johnny’s misunderstood mind is becoming more well defined. We now have the meaning of his over aroused and overheated nature. When we witness the darkening of his eyes and the reddening of his face we know it is time for Johnny to cool off, literally. He is taking back his life and trusting his new clearer perceptions of reality. He is no longer convinced or insistent that his view of the world is the only angle in which to survive. Happily the days of cold running water and ice packs to offer physical relief are over. There have been times when our household was almost torn apart, finding the fellowship of his pain intolerable. It has taken us many dark places but my family has won hard earned wisdom and now, with optimism, we await Johnny’s future.
With the deepest of gratitude, we thank Dr Papolos and his team for their quest to continue to fight for kids with early onset BPD and our shared commonality and phenotype, Fear of Harm.