In recent years I’ve claimed to be a mental health advocate…except that I’ve skirted the details of my story, which is like a raw wound, easily agitated and painful. May is Mental Health Month, AKA Mental Health Awareness Month, and so I remember another May day, eight years ago, and the beginning of our journey towards help, hope, and understanding.
My cell phone vibrated, and I glanced down. The text message popping up from my son Drew said, “There’s something wrong with my brain.”
I don’t remember my response to the text I will never forget. One, I had stopped for happy hour with my husband Kody after work; two, this happened a couple of cell phones ago, the text thread long gone. I can only imagine that I probably replied along the lines of—Let’s talk. I’ll be home after awhile.
Kody and I didn’t rush home with concern. We arrived home later that evening to find Drew sealed away behind his closed bedroom door, lights off, as if to say, “I don’t want to talk about it.” The discussion waited as did we.
The next morning, I suggested breakfast out. Kody, Drew, and I drove to a neighborhood diner. Amid the cadence of background conversations, the clinks of silverware to plate contact, and the aroma of good coffee, we sat in awkward silence while waiting for food and Drew to provide extra details. The sunlight streamed through the blinds of the windows as breakfast arrived, and Kody said, “Son, we wanted to talk with you. What’s going on?”
Drew’s eyes narrowed as he stabbed his omelet, “Don’t you think there is something wrong with me? You don’t remember the time I ran into the fence? You don’t remember that big lump on my head?” I didn’t remember the fence incident, and neither did Kody. Drew’s tone implied we were idiots for forgetting, and he told his story as if he had said these words a million times. “I stole some beer at Walmart, and someone caught me. So I dropped the beer and ran out of the store as fast as I could. I ran full-speed, head-first into a fence. Full speed. I had a huge lump.” He touched the right side of his fore head with five fingertips, indicating the location and size of the injury. “You don’t remember?”
The beer theft/head injury had occurred two years earlier, Drew’s senior year of high school. I tried to visualize the episode. There are no fences directly outside of our neighborhood Walmart, so I couldn’t picture him running full speed into a fence. If he had escaped through the front door, he would have had to run a considerable distance before encountering the said fence. My thoughts raced faster than I could ever recall Drew running. How could anyone run full speed and oblivious of an oncoming fence? I didn’t remember the big lump, but that was during a time when I didn’t see much of Drew. Possibly the lump was bigger in Drew’s mind and I had overlooked a smaller lump, or maybe my memory just fails. I searched my now-guilt-ridden brain, recollecting an enormous lump during sixth grade from a no-helmets-football-game-gone-wrong with the neighbors across the street. Then my thoughts returned to Drew’s first question, ‘Don’t you think something is wrong with me?’
Deep down, yes. I knew. Something wasn’t quite right. Long ago I stuffed the notion down and out of sight. Now Drew knew, even though he wouldn’t elaborate. In Drew’s mind, his two-year-old head injury lingered, and time called for a doctor.
At home for the summer, Drew had spent the past year at West Texas A and M, where he had auditioned for the orchestra, received a full ride as a music major, and studied cello performance. He scored high enough on the English CLEP (College Level Examination Program) to receive credit, his SAT scores rated high enough to waive his college math class, yet he struggled academically. Whenever I called, he always answered his phone, alone in his dorm room, our conversations, always brief. I convinced myself that my Drew was an artist, just a little different, the social withdrawal a phase. Maybe drugs were to blame, or possibly he had ADD. However, Drew adamantly believed that he suffered from brain damage. I could count the number of times he had seen a doctor on one hand, and I could not recall him requesting to see a doctor ever, until that morning.
So began our journey of finding a doctor to identify the problem that Drew had trouble explaining. Our family doctor, Dr. Terrazas, spoke with Drew and me for approximately fifteen minutes before diagnosing him as bi-polar and writing him a prescription for Lithium. I wondered if I had led her to that conclusion, and Drew, not satisfied with her conclusion, wanted further testing. Dr. Terrazas referred us to a neurologist, Dr. Grider, who ordered a CAT (computerized axial tomography) scan. Weeks later at the follow-up appointment, the images of Drew’s brain revealed no damage, and the neurologist had no answers. Drew doubted both the bi-polar diagnosis as well as the CAT scan results and pressed forward for further testing. The neurologist referred us to a neuro-psychiatrist, a Dr. Affatati. The appointment, another month away.
Meanwhile, I furtively observed my son, who confined himself to his room and never spoke on the phone or went out with friends. He lacked emotion but laughed now and then for no reason at all. When I attempted a conversation, the dialogue fell flat. When Drew began the conversation, the topics loomed beyond my comprehension. He sometimes nodded off in an upright position. Sometimes his face twitched, his eyes or his mouth, involuntarily. Drew walked in circles and stretched in repetitive patterns. My son had changed before my eyes, yet the quirks had become abruptly apparent.
To break his habit of isolation, Drew and I drove to the Oklahoma panhandle to stay with my parents for a week. After a one-on-one day of golf with his Pop, I remember my dad saying, “Crystal, I think it’s a self-esteem problem.” My dad’s words didn’t settle well, and all that time grew my fear, the unspeakable certainty of something much bigger. The appointment with the neuro-psychiatrist was still a week away.
On the drive home, we made a quick stop in Canyon, Texas at the university for Drew to check his mail. Drew had been home since May, and he insisted on checking his mail in July, looking for a package of sheet music that I had sent in February. At the time, this did not register as odd. A grandmotherly lady with horn-rimmed glasses and gray hairs pulled back into a bun at the university post office kindly checked and double checked for the package. “I’m sorry there is nothing here for you.”
Drew maintained composure, but upon exiting the building an air of agitation enveloped him. “That lady was racist,” he said.
“I don’t think so,” I replied having no clue why he would say that. “How was she racist?”
“She discriminated against me.” I heard the edge in his voice through gritted teeth, followed by a deep exhale. “Can I drive?”
I collected my calm and said, “Of course,” hoping a drive on the open road would distract Drew from the dark cloud overshadowing his mood.
The highway home stretched and yawned for three hundred and seventy-six miles as my mild-mannered, soft-spoken son transformed into a bizarre, frantic person behind the wheel. “Are you racist?” He asked, more accusation than question, his sideways glance revealed suspicion.
Anyone who knows me would think the question strange. I teach high school English at a diverse suburban school, and I love my students. I breathed in. I exhaled. I shook my head back and forth. “No, I’m not racist, Drew.”
He raged from one accusation to the next, as if someone held the remote, flipping channels. “Read your wrung. What does that mean?” We sped down the highway.
“What?” I thought I had misheard him.
“Read. Your. Wrung.” Drew slowed the statement, but not the car. “That’s what you said to Mimi. She’s a witch. You’re both witches.”
I braced myself in my seat, knowing without doubt that we had a major problem—not brain damage—a psychological, perhaps psychiatric problem. I didn’t know the difference. He had heard me cast a spell? “No, Drew, we are not witches.”
For six solid hours, Drew expressed suspicions, delusions, and perplexingly incomprehensible thoughts. In my head, we veered full speed into oncoming traffic. I wanted to text my husband, but there was nothing he could do and no textable explanation. I did not in any way want to heighten Drew’s hysterics. So, for six solid hours, I prayed to God for our peace, our safety, and our lives.
Once home, Drew retreated to his bedroom, and I pulled Kody into ours and attempted a condensed version of events in hushed tones. None of it made any sense. Explanations failed. I remember Kody saying, “What the fuck is this shit he is pulling?” How could I make him understand when I couldn’t even understand? I sobbed into my wet pillow that night.
The sun rose to a new day, a Sunday. I felt God’s pull, and I knew that someone at church would pray with me for my family. Kody held fast to the I’m going to get this thing taken care of mentality, and he confronted Drew head on, “What is your problem? Why are you doing this to Mom?” I heard their voices in the living room from my location in the master bathroom. Kody didn’t understand. Drew’s behavior wasn’t calculated or malicious.
I eavesdropped from the hallway before entering the living room, where I witnessed the Kody-Drew face-off. Drew spoke of a grocery cart. I walked in mid-explanation. He was either pushing the cart or sitting in it while someone pushed—in the cafeteria while away at school, “People were lined up on both sides of me cheering and screaming,” he said with the same panicky road-trip tone from the day before, stressing the words cheering and screaming. Disconnected thoughts spewed forth, “And when I watch TV, let’s say, I’ve just been reading about comets, then there is something on TV about comets. It’s like the TV is communicating with me.” Kody’s eyes flashed at me with a dawning realization. Reality had slipped from Drew’s grasp like sand.
I left the scene, Kody and his helplessness seared in my mind, father and son alone at an impasse, tears dropping single file into my lap as I drove to Chase Oaks Church. I entered the building, hiding behind my glasses, hoping to blend into the crowd without anyone noticing the puffed anguish around my eyes. I located a seat amid singing voices while the band played, and when I opened my mouth to sing, the floodgates gave way once more, the torrent of tears, a mix of sadness and fear. Then came the song I needed to hear.
Everyone needs compassion,
Love that’s never failing;
Let mercy fall on me.
Everyone needs forgiveness,
The kindness of a Saviour;
The Hope of nations.
Saviour, He can move the mountains,
My God is Mighty to save,
He is Mighty to save.
Forever, Author of salvation,
He rose and conquered the grave,
Jesus conquered the grave.
So take me as You find me,
All my fears and failures,
Fill my life again.
I give my life to follow
Everything I believe in,
Now I surrender.
I don’t remember the sermon that morning, but I heard God’s message in the music. God will take my fears, and with Him, there’s hope. Everyone needs compassion. Drew. Kody. Me. Our daughter Lauren, our recent high school graduate dealing with problems of her own and oblivious to Drew’s latest development.
The service concluded with the usual announcement: “Each week we have a group of people waiting at the front to care for you, listen to you, and pray for you.” For the first time, I found myself drawn to the front of the sanctuary like a moth to the light. Several people waited there volunteering their time for people like me who needed a shoulder and compassion that day. I approached a woman with warm brown eyes and an encouraging smile that reminded me of my deceased Granny. We introduced ourselves, and I discovered this woman taught high school English in my district, except at the alternative school. She held my hands as I told Drew’s story, unsuccessful in my attempt to remain dry eyed. I would give anything for a recording of that conversation. I would press play over and over to hear her words of comfort and encouragement and prayers for our family, but I will never forget the peace that washed over me or the scripture she gave, “For God has not given us a spirit of fear, but of power and love and of a sound mind” (2 Timothy 1:7). Back at home, the rest of the day passed peacefully. Drew retreated to the solitude of his room.
The next day Kody left for work, promising to research help options. At home, my fears once more grappled with my prayers. Fears of Drew’s future in a strait jacket vs. prayers to God for power and love and a sound mind for all of us.
Mid-morning my phone rang, and my husband said, “I found a mobile crisis unit for mental health emergencies. I called them, and they are sending counselors to the house at 2:00. I’ll be home then.”
Kody took the afternoon off, showing up ahead of time, and together we stood before the picture window in the formal living room, watching and waiting. Before long, two counselors arrived in a Ford Escort out front. We hadn’t mentioned our expected guests to Drew. A bearded man probably in his early forties and a younger dark-haired woman holding a folder ambled up the sidewalk, and I opened the door with a hushed, “Thank you for coming,” as they approached the house.
After the introductions, I walked back to Drew’s room and knocked, “Son, you have some visitors here to talk to you.” Drew opened his door, didn’t ask questions, and followed me to the living room. Kody had provided background information via phone earlier.
“Hi Drew. My name is Tommy, and this is Vita.” On cue, she nodded her head and gave a closed-mouth smile and a wave. “Your parents invited us here because they have some concerns. I understand that you’ve had a CAT scan and that you have an appointment for another opinion. Do you mind if I ask you a few questions?”
“Okay,” Drew said while shooting a glance at me and his dad.
Tommy communicated with Drew in a comforting way, better than the family doctor and the neurologist that we had seen so far, and he completed a thorough mental health assessment. Tommy knew the questions to ask, Drew opened up, and the sidekick Vita silently transcribed the meeting. Tommy asked about drug usage and alcohol, and Drew admitted, “I’ve smoked pot and done some mushrooms. Once I smoked with some people at school, and my arms went up in the air like this.” Drew lifted his arms above his head to show us, his hands hung limp at the wrists, “and they were frozen there. They were frozen for a while, like hours, and everyone was laughing. I think whatever we were smoking might have been laced with something, but I don’t know. I don’t drink though.”
Tommy said, “Smoking pot can sometimes trigger a person to see or hear things that aren’t there.” His tone was matter-of-fact and non-condescending. He spoke as if this type of thing happened to people all the time. I remember him asking, “Drew, have you experienced a recent death of anyone close to you?”
Drew broke down and wept, “My best friend Ryan.” Drew and Ryan played soccer together on the Stars in kindergarten, and although they went to different elementary schools, their team stayed together through third grade, and they attended middle school and high school together. I recollect a handful of play dates when they were younger, but as they grew older, they ran in separate groups. Ryan’s death was a heartbreaking accident and tragedy of appalling proportions. As long as we had known the Woolf family, they loved going to their lake house. Ryan and his dad Don went cliff diving over the extended Fourth of July weekend. Ryan jumped and never resurfaced. Don jumped in to save him, but he didn’t reappear either, a tragedy of appalling proportions. Our hearts still break for our friend Pat, Ryan’s mom and Don’s wife, and Ryan’s brother Cameron. This happened the summer of 2007 before Drew’s senior year, three years before this interview with Tommy and Vita.
Tommy probably spent about an hour with Drew in our living room, and Drew’s demeanor calmed from the previous days. As the session ended, Tommy provided names of therapists for Drew as well as the names of a few psychiatrists. The crisis had been averted for the moment, and Drew wasn’t interested in any therapy, so I continued to count the days to the highly-anticipated appointment with the neuro-psychiatrist.
After the encouraging experience with the mobile counselor, the appointment with the neuro-psychiatrist disappointed. Kody and I sat in on the session expecting explanations, but the doctor was quick and direct. He spent a brief time alone with Drew before meeting with Kody and me alone. Looking back, I wouldn’t dream of seeing a doctor without a notepad, writing down everything and asking questions when needing clarification, but at the time, I was a rookie. New game. I remember explaining to the doctor, “Drew’s speech patterns have changed, he’s more monotone now, and he rarely smiles, but then he laughs randomly—like an inside joke with himself.”
The neuropsychiatrist reflected and paused, “His affect is off.” He offered no diagnosis but used the word “psychosis” and spoke of a “thought disorder” to label Drew’s recent episodes. “I want you to follow up with Dr. Watson.” He wrote down his name and the name of the clinic. “He’s a psychiatrist.” The appointment came to an abrupt and anti-climactic end. Kody drove back to work. Drew and I returned home. I plopped down on the couch, opened my laptop, and Googled:
Thought disorder: a term used to describe incomprehensible language, either in speech or writing, which is presumed to reflect thinking. There are different types. For example, language may be difficult to understand if it switches quickly from one unrelated idea to another or if it is very delayed at reaching its goal or if words are inappropriately strung together resulting in gibberish.
I lifted my eyes from the screen and stared at the ivory paint on the wall ahead. The Wikipedia definition described the gibberish of read your wrung and the onslaught of disconnected ideas during the recent road trip.
I resumed my investigation, typing: affect. I found definitions connected to the experience of feelings and emotions and continued searching.
Flat affect: A severe reduction in emotional expressiveness. People with depression and schizophrenia often show flat affect. A person with schizophrenia may not show the signs of normal emotion, perhaps may speak in a monotonous voice, have diminished facial expressions, and appear extremely apathetic. Also known as blunted affect.
Depression, okay. I thought. Schizophrenia? Really? I considered the MedicineNet.com definition as I reflected on Drew’s daily demeanor.
Again, I flashed back to the road trip. I had flipped the radio station to classical in hopes the music would calm him, and Drew started giggling at the sound of the staccato piano. I remember asking, “What’s so funny?”
He said, “It was a hippopotamus in a tutu tip toeing to the music.” The thought was fleeting, sandwiched between hysterical, unrelated ideas. I caught myself staring at the flash of a few specks of dust dancing in thin air, sparkling in the shards of sunlight streaming through the window. I continued Googling.
Psychosis: a loss of contact with reality, usually including false beliefs about what is taking place or who one is (delusions) and seeing or hearing things that aren’t there (hallucinations).
My laptop was hot, and so was my lap. On the National Institute of Health’s website, produced by the U.S. National Library of Medicine, I found a definition for psychosis below the subtitle Major Depression with Psychotic Features. I wondered if Drew had major depression. Why did he spend so much time in his room alone? He rarely smiled a genuine smile. I thought about the witch and racist accusations. I remembered the grocery cart episode in the cafeteria at school. Again, staring at my screen but focused on nothing, I found myself shaking my head, No. I closed my laptop and slid it under the couch.
Six months passed, and five doctors later, no one had answers, no one was willing to diagnose. After the neuro-psychiatrist, Drew saw a regular psychiatrist, who referred us to a psychologist. We had seen each doctor once and to no avail.
In the middle of our unsuccessful quest for help, Kody, Drew, and I opted for a family night at the movie. Lauren kept her own agenda. We decided on Megamind, a computer-animated comedy named after the super-intelligent alien supervillain, who transforms into a superhero. We arrived late to a packed theater and shrunk into our seats a few rows from the front. Behind us sat a young mom and a row of little girls, probably around age eight, probably there for a birthday party. In the darkness, we ate popcorn and laughed, and I silently celebrated the moment of normalcy.
Once home, Drew spouted, “I guess you didn’t see that lady sitting behind me blowing cocaine into my face?”
“You mean the lady sitting with those little girls?”
“Yeah, you didn’t see that?”
“No, Drew, I didn’t see that.”
That night drugs continued to seep through the vents of his bedroom. Because of the toxic air, Drew couldn’t stay in his room, and he checked himself into the hospital for the first time. He packed a bag, and I drove. I’m not sure he knew that it was a psychiatric hospital, but he wanted more than anything to escape the poison of his bedroom. Within the next couple of days came the long-awaited, much-anticipated diagnosis: paranoid schizophrenia. By this time we had witnessed text-book examples of symptoms and read enough to understand the possibilities.
Even though Drew initially said, “There’s something wrong with my brain,” for the next five years he denied the diagnosis and refused medication. He preferred brain damage to schizophrenia. I don’t blame him. Stigma has a firm hold on mental illnesses. Without open discussions about mental health issues, people—patients and families—tend to feel shame, sometimes hiding, sometimes denying the truth. Medication non-compliance remains a common problem among patients with brain disorders. The paranoia causes trust issues, and Drew believed for many years that the medicine is poison. Without medication, patients often become psychotic again and cycle back into the hospital. Consequently, Drew was hospitalized three different times for approximately three months of his life within the first year of his diagnosed brain disorder.
I’ve never known a parent of a child with cancer to hide the illness from friends, family, and co-workers, but in the beginning, that’s what I did. I couldn’t talk about it. For me, it wasn’t shame. It was grief. It took years for me to be able to discuss details with my closest friends and family without breaking down. I still cry for Drew. Kody and Lauren do, too. Our family has lost much, but Drew has lost the most: his former self, relationships, and ambitions. The pain hangs like a dark, heavy cloud. During that first year of hospitalizations, it took all I had to put on a happy face all day long in front of my high school students. Many times I would run into someone who knows Drew and would ask about him. Many times I would say something like: “Drew’s okay. He’s not in school. He’s trying to figure out his life.” Somehow this explanation seemed simpler. I didn’t say it out of secrecy. This insidious brain disorder had hijacked my son’s life. Many times, I would make it out of the grocery store or out of school and into my car just in time for the cloud to burst. I would pound the steering wheel with my fists and sob over the substantial interference of the illness on Drew’s life, on all our lives. As I’m coming to terms with the new normal, part of me thinks that maybe my job is to fight the stigma and to help others understand that there are illnesses of the body and illnesses of the mind. Both are equally real and often unavoidable. There is no shame in illness, and I continue to pray—for health, hope, and understanding. And I believe in miracles.
People continue to ask, “How is Drew?” So I’ll be dedicating my May posts to mental health awareness and the millions who silently suffer from brain disorders.