I can’t believe I’m going to write this and yet here I am about to do so.
My husband and I went out for coffee yesterday, and I heard myself say out loud to him, “The best thing that could have happened to Grace is schizophrenia.”
He looked at me strangely, and I said, “Let me explain.”
I went on to say, “Think about Grace before her diagnosis. She was the one kid in our family I could not read or reach. She had so internalized all her experiences and emotions that I couldn’t relate to her or reach her. She wouldn’t self-advocate, report, or communicate. She was slipping through the cracks because of Milly. I tried to run interference between Milly and Grace, but I couldn’t be there all the time, and when I wasn’t there Milly would hurt Grace. Her autistic anger was always aimed at Grace, and she would bite her, hit her, and beat her up. What would Grace do? Nothing. She would just internalize everything and never tell me anything. Look at her now. She is completely open. She can talk about her feelings. She is flexible. She is willing to try new things and take risks even when she has to fight through paranoia and anxiety. She takes a risk anyway. She has better coping strategies than most adults. She knows about guided imagery, aromatherapy, cognitive distortions, deep breathing, and she knows her limits. If I’m honest, she is probably the healthiest of all our kids when it comes to emotional health at this point. And this happened in one year. She’s still learning and growing, but she is so self-aware now. That is such a gift. She would never have gained such ground had she not had a psychotic break.”
It was a strange epiphany. The very idea felt foreign to me. Was I really starting to feel, of all things, grateful for Grace’s schizophrenia? Was her schizophrenia a stepping stone to her emotional healing? It wasn’t an idea I was used to, and part of me was resistant. Last week, however, two people sent me Eleanor Longdon’s TED talk:
She was diagnosed with schizophrenia during her first year of college after admitting to a physician that she was anxious, sad, and hearing voices. She descended into madness, and, at some point, she was told that it would have been better had she been diagnosed with cancer because at least cancer can be treated. I’ll admit that during Grace’s darker moments I have wished for something more treatable. Longdon said that her mother never gave up on her, and this brought me to tears. We all need someone who never gives up on us. She went on to say that a doctor suggested a new way to experience her voices whilst she was in the middle of her psychosis. What if her voices were trying to give voice to the parts of herself that were repressed, ignored, traumatized, and abused. What if she needed to listen to them and enter into a therapeutic environment wherein these voices could be acknowledged, sort of like breadcrumbs. Follow the breadcrumbs and find the source. Administer healing to the wound and perhaps Longdon would be empowered to move forward. It was a revolutionary idea. Schizophrenia has never been viewed as treatable in therapeutic terms because, in part, it’s neurodegenerative. Could such an approach work? For Longdon, it did. Her TED talk is breathtakingly moving. I cried throughout most of it.
I began to look back at Grace and her experience of schizophrenia. She didn’t hear voices. She saw men and one woman–The Three Men and The Creepy Lady. They were after her. They were armed. They were dangerous. The Creepy Lady was in charge of the men. The more anxious and frightened Grace became in her life, the bigger their weapons became. The more helpless and disempowered she felt, the more often she saw them. Conversely, the more empowered Grace felt, the less she saw them. Grace still hallucinates even on 15 mg of Abilify. I have a friend who is on Abilify. He’s 250 pounds. His Abilify dose is 2 mg if that lets you know just how medicated Grace is. She hallucinates when she feels anxious, disempowered, and afraid. I have always told Grace that her hallucinations are the result of her fear and anxiety because they only show up when she’s not coping well. What if we took it a step further? What if, as Longdon now says to her voices, Grace acknowledged her hallucinations? What if she simply said, “Thank you for alerting me to this problem. I will pay attention to that”? She could then go to a place that she liked and do a self-check. Is she nervous? Is there something feeding her anxiety? Is she feeling disempowered in an area of her life? Once she finds the issue, she can then direct her focus and utilize her coping strategies.
This certainly isn’t a common treatment for schizophrenia spectrum disorders. Hope and schizophrenia typically don’t go together. When Grace and I sat in Dr. Awesome’s office last October to get a second opinion, I recall her somber expression as she told me that the prognostication would be poor. I felt my stomach fall out, and I knew what she was implying. My grandfather had schizophrenia. He died by suicide after spending forty years in an institution. His wife, my grandmother, also died by suicide after years and years of rootless wandering. A family history like that always garners the attention of psychiatrists.
I know the truth about our situation. Children diagnosed with schizophrenia before the age of 12 don’t have a good prognosis. I’ve done my reading, and I suspect the reason for their suffering is due to neurodegeneration. If the onset of schizophrenia is 18 or 25, then there is less time for the brain to lose white matter than if one is diagnosed at 11. While I am a realist, I am also hopeful. The brain is the most complex part of the human body, and I’ve seen stroke victims who have lost nearly half of their brain recover due to neuroplasticity and the brain’s extraordinary capacity to reroute its own wiring. If a brain after a stroke can do it, then why can’t a brain losing white matter due to schizophrenia do it?
There was one thing that Longdon said in her TED talk that deeply resonated with me. She said that it was time that mental healthcare providers stop asking people, “What’s wrong with you?” and begin asking “What’s happened to you?” We all have had experiences that have affected us for both the better and the lesser. In our narratives about our lives, there are metaphorical Persian rugs woven with pain, joys, sorrows, adventures, regrets, deep loves, betrayals, meaningful relationships, dreams, hopes deferred, fears, and even traumas. We all have reasons to be anxious. We all have reasons to be afraid. We all have reasons to feel paralyzed at times or even feel rage. Nothing is wrong with us because we feel intensely or even get stuck in a feeling. Sometimes we need help being led out of what has happened to us into the present experience because the intensity of our emotions is too overwhelming. Suffering and the events that surround suffering are part of the human experience, but joy, enthusiasm, goodness, kindness, forgiveness, and even happiness are also part of the human experience. Finding a safe space to explore our narratives so that we can make room in our lives for the entirety of the human experience is part of the therapeutic process, and I do believe at this point that it might all begin with the question, “What’s happened to you?” If we follow that question up with “What do you want?” then you have two questions that can catalyze immense change and growth. Those are the two questions that were asked of me a decade ago by a male therapist who believed in me after everyone had washed their hands of me. Everyone told me that I would never be happy. I would never be a healed or whole person. I would need to settle for a life riddled with anxiety and fear. It simply wasn’t possible for a victim of human trafficking to ever know peace or happiness. He didn’t agree, and he walked with me for three years, never once giving up on me. I am not who I was ten years ago because a handful of people didn’t give up on me. They believed in me. They didn’t think that something was wrong with me. They knew that something had happened to me, and they set out to walk with me while I dedicated myself to the healing process.
This is what I want for Grace. No matter what, I don’t think that something is wrong with her. Something happened. She has a new storyline in her narrative, and I will walk with her until we add another storyline be that the theme of endurance or persistence. Perhaps it will be about the love of family or something much more personal for her that I won’t be privy to. It’s her story, and I want her to be the star in it. I want this for everyone that I know and even don’t know, too. I want everyone to be the stars of their own story and know that even the most seemingly tragic event can be spun into gold often when we aren’t expecting it. It’s alchemy. You and me? We get to be psychological and emotional alchemists. If we commit to the process of moving forward, committing to each other as well as committing to our own hearts, we get to be a part of that mysterious transformation wherein devastations are rebuilt into castles, and our hearts become gold. For me, this is one of the greatest privileges of life. Grace’s schizophrenia was lead, but her own commitment to getting better has yielded gold in her character, her relationships, and her personality. What’s more, she shares this gold with everyone she meets, and others benefit. This is the profound beauty of humanity. We are all alchemists.
No matter how Grace’s story unfolds, I can say this: a year ago we were living in a nightmare, and the word ‘schizophrenia’ felt like a death sentence.
Oh, what a difference a year makes.