When I compare each year to the previous one, I measure our progress and remind myself that the road to recovery is a marathon not a sprint. After three months of three separate hospitalizations from the fall of 2010 through the spring of 2011, Drew continued to deny his diagnosis and refuse medication. For about three years, we spun our wheels, going nowhere fast, and our family bus broke down. In the summer of 2014, Drew agreed, as a condition for continuing to live at home, to see a psychologist weekly. In the fall of 2014, with some arm twisting of another kind, Kody accompanied me to the 12-week NAMI Family-to-Family class. By January of 2015 with encouragement from his psychologist Dr. Hanna (which I may have instigated), Drew started a NAMI class of his own, 10-weeks, Peer-to-Peer. The wheels on the bus went round and round and forward once more.
Each Tuesday night, I drove Drew to his class at a hospital about fifteen miles from home. He attended. I waited. A teacher by day, I had transportable work, papers to grade, books to read, and I tried bonding with Drew during the drive time.
Receiving a weekly e-mail reminder about the class, I looked forward to the class when the attendees would tell their stories (even if I would be hanging out in my car). I wondered how Drew would describe the last few years of his life, especially as I consider my own version. More than anything, I wish I could completely understand and accurately convey Drew’s perspective, but I can only give you mine. Mine is a story of a mother’s heartbreak and hope in the face of mental illness, a story of navigating the rocky road to recovery with my son and trusting that the pavement will smooth out ahead. It hasn’t been easy for any of us, but Drew NEVER talks about it, living an isolated, non-communicative existence in his bedroom, leaving mainly to eat and smoke. No one would choose a life like that. It’s not that I don’t think Drew can do more, but making him do more is a full-time job, and I work full-time already.
While going to my own NAMI class, one of the teachers e-mailed a CNN video link of Anderson Cooper taking part in a schizophrenia simulation experiment. He wore headphones to simulate hearing voices while going on with his day. If you have five minutes, please watch.
Uncomfortable, right? This is mental illness. How would you react to voices commenting on everything you do? Criticizing you endlessly?
I cling to the hope that through the doctor and the classes and forward momentum that Drew will gain insight on brain disorders…that he will come to an acceptance of his “new normal”…that he will seek further help…that he will someday contribute to society…that maybe one day he will enjoy and maintain relationships once more. These are the things that I wanted to say to Drew during our car rides to and from Presbyterian Hospital in Dallas on Tuesday nights. After the Tell-Your-Story class, I said, “I saw the e-mail that said you all would be sharing your stories tonight. How did it go?”
“I just listened.” And that was that. Our conversation usually consisted of Drew asking, “Will you turn up the volume?” And when I did, he would usually say, “Not that loud. Turn it down.” Pause. “A bit,” followed by a “Thanks for driving, Mom.”
And after class, I would usually ask, “Are you hungry?”
And he would usually say, “I could go for some burgers.” And we would drive through McDonalds, and he would say, “Thank you. I love you, Mom.” And I appreciate that. I really do. I just want so much more for him.
One night after class, Drew and a young lady emerged together through the hospital doors. She stood in the spotlight of the entryway as Drew’s backlit silhouette approached the car. He opened the passenger side door and leaned in to ask, “Could we give Rachel a ride home?” Rachel lived in Rowlett, a Dallas suburb, not exactly on the way home, probably forty-five minutes to an hour out of the way. As much as I didn’t see Rachel’s transportation situation as my problem, Drew wanted to help out his new friend, and I want Drew to have friends, so in the darkness of winter, I found myself driving Rachel toward home.
Rachel talked up a storm, but I welcomed the break to the typical silence. She told me about her family, her high-school experience, her church, her job. I wondered about her diagnosis, not that it matters. Her cheery, chatty demeanor just differed so dramatically from Drew’s. On the way toward Rachel’s house, her mom called to say she could meet us at Collin Creek Mall, which would just be a stop on our usual way home. Around 9:30, we pulled into the empty JCPenney’s parking lot about five minutes ahead of Rachel’s mom.
Drew said, “Will you pop the trunk?” and I did as he hopped out of the car. From the trunk Drew grabbed his banished backpack, unable to contain the stench of his glass water pipe inside. He loaded the bowl with organic Natural American Spirit tobacco and smoked under the halo of parking lot lighting.
Alone with Rachel, I seized my opportunity, “So Rachel, does Drew say much during class?”
“No, he’s pretty quiet and doesn’t say a lot.” She paused, “He doesn’t laugh at the same things that the rest of us do.”
His affect is off, the neuro-psychiatrist’s words echoed in my thoughts. “Hmm, I just wondered because when I ask him about class, he doesn’t tell me much either.” I hesitated, “He doesn’t really believe he has an illness, so he refuses to take medicine even though he has been hospitalized a few times.”
“Maybe he hasn’t found the right one.”
“Yeah, he has tried quite a few, and he was doing really well on one, but he said he had a seizure, so he quit taking it. A doctor told me he didn’t think Drew would know he had had a seizure, so we don’t know for sure, but now Drew believes the medicine is poison.”
I felt myself overstepping my bounds. After all, I had just met Rachel. I didn’t really know much about her relationship with Drew other than he had gone to dinner at her house once. I wasn’t sure if she might say anything to Drew about this conversation, and I didn’t want to make him mad, an ongoing concern. Then she asked, “What was the medicine?”
I had to think. The “seizure” had been four years earlier, and while I tried to remember the name of the medication, Rachel said, “I think Andrew has some anger issues.”
That’s interesting, I thought, wondering what had happened in front of Rachel. “I think you are right. He sees a therapist,” I said, and we sat in silence for a moment, my mind racing. Do Dr. Hanna and Drew discuss his anger? I silently cursed HIPAA. I should call Dr. Hanna and mention the hole Drew punched in his bedroom wall and the one in our kitchen pantry door, the yelling and mocking, the “Fuck yous” and gibberish behind the closed door of his bedroom. Even though Dr. Hanna can’t discuss Drew with me, he’ll listen. He always does…Abilify. I suddenly remembered. “Abilify.” I said. “That’s the medicine that made the biggest difference.”
“Oh,” Rachel said as if she didn’t have any personal experience with Abilify. She went on to tell me about how well her medication worked and how her “commanding voices” had gone away. “To be honest, I kind of miss my angel a little bit. Just the parts where he would touch me gently and kiss me on the forehead and things like that—the nice parts, not the horrible chains and fire and things like that.”
“Right?” My nonsensical response was cut short as headlights flashed in my rear view mirror, and Drew opened the car door, rejoining us.
Rachel’s mom had arrived, and Rachel said, “Thanks so much for the ride. Nice to meet you, Mrs. Byers. See you next week, Andrew.”
Alone with Drew again, I said, “I like Rachel.”
He responded with silence, and I waited.
“She likes to talk.” There was another pregnant pause. “Are you hungry?”
“Yeah, I could go for some burgers.”