May 24, 2018
Early intervention as a means of addressing the major shortfalls of ‘status quo’ treatment for schizophrenia, and support for family members.
A lived experience perspective of psychosis and its treatment written in celebration of World Schizophrenia Day 2018.
By Ava Johnson*
When my mother was 15, she was sent away — for the first time — to a state psychiatric hospital, over 100 miles from her family. Thoughts of her stay — of leering girls, girls talking to their voices late into the night, girls crying themselves to sleep, burly administrative nurses, pills in paper cups, dark rooms and long corridors — populated my childhood imagination. For my mother and our family, this experience left shadows. To this day I have no idea what, if any, diagnosis she received back then, or how any of it had been justified at the time. Nevertheless, one day the state forcibly took her away. No one, including my grandparents who witnessed it, had been able to stop it. And nothing was ever the same again.
Elyn Saks wrote that psychosis “rolls in like a fog, becoming imperceptibly thicker as time goes on.” All looks clear on the horizon, or so we think, and then we look again and see clouds. And so it was, for my family, my sister and I. Wherever and whenever things did or did not actually begin, sometimes we thought, it was always ‘this’ way but we were too young to recognise it, or to name it.
I can clearly remember one day in middle school, standing at the bottom of our staircase by the phone, listening to my mother as she frantically explained that it was wired, that our every conversation was being monitored and recorded. I remember staring at the phone and at the walls, trying hard to imagine a series of thin electrical wires criss-crossing behind the white paint. But I couldn’t. And I concluded then, staring at that wall, that something was terribly wrong.
In the years that followed I tried everything I could think of. I searched the internet, bouncing from the Mayo Clinic to NAMI to MedScape, trying to map my own incredibly naïve observations—paranoia, bizarre behavior, acting out of character, not making sense, anger, cognitive problems.
I sought help from teachers and school counsellors, and a few times was even referred to a ‘real’ professional in the community. Those calls all went the same way: overly pointed questions about my safety followed by the disclosure that the provider was a mandatory reporter of abuse or neglect of a child and finally some version of the question “so, given that, do you want to keep talking?” Of course, I did not. Each conversation ended with the ever-diminishing hope that I would find anything remotely like the help that I was looking for.
My mother wasn’t hospitalised again until I was 16. For all those years, my grandparents denied any psychiatric problems outright, the state hospital and family suicides notwithstanding. It was entirely possible that we were under surveillance, they swore; implants and recording devices are “real things”; my mother could easily have angered the wrong people. “These things do happen,” they said. She had always been shy, eccentric, reclusive, and had never worked.
As these scenarios all too often unfold, my mother was thousands of miles away from where we’d all started: homeless and living in a van, when she was finally rehospitalised. I was about to start my senior year of high school. Then began a new period: disability-based welfare and Supplementary Support Income, Section 8 housing, the revolving hospital door, agonised, guilt-laden decisions over whether or not to call the emergency services. In all those years and the years since, I cannot remember any of my mother’s treating clinicians asking my brother or 1 how we were doing, or inquiring into our own well-being in any fashion. Therapy was financially out of reach for all of us.
As far as I know, no provider (across at least five different states) ever sat down with my grandparents and explained what was happening to my mum, nor mentioned psychosis or schizophrenia. Not its social determinants, its prospects for recovery, or the importance of family and social connection and support. We were in the dark.
When I was an undergraduate in college — 21, a model student who was getting straight A’s —my mother in violation of campus policy, lived with me in student housing. Recently hospitalised, one of the charge nurses had admonished me a few weeks earlier: “Why aren’t you doing a better job of taking care of your mother?” I headed back to my room to work on my Honors thesis and I realised it was the last place I wanted to be. I could not face the situation. I sat under a huge blooming Magnolia tree and sobbed. The blunt indifference of the whole system is what I cannot take, nor existentially or politically reconcile. I struggled with the indifference and judgement of the people I talked to — the providers, the system. I was only a kid when this first happened, then a college student with no money, and no idea what to do.
Things do not have to be this way, and they were not when I became a patient myself, just a few years later. As a researcher and academic I tend to emphasise structural solutions, however much of this difference in my own experience came down to individuals. Individual providers capacitated and supported within an early intervention paradigm to respond, invest and care. If at a macro level we need deep multi-systems change, and from a research perspective, robust “technologies of intervention”, at the micro level we fall back on the healing power of relationships. Relationships will inevitably suffer when providers and staff are overworked and overwhelmed. Relationships suffer when providers don’t really know what psychosis is, or worse, carry around only the bluntest of stereotypes. Relationships suffer when the system and structures occlude the humanity of ‘the schizophrenic’ and ‘the family’ alike. Relationships suffer when the only topic of conversation is the dose, number and kind of medication.
For me, when the director of the first episode program I had enquired into picked up the phone and asked that I come in within 12 hours, it was a shock as much as a revelation. We had a real conversation about my experiences. They didn’t ask heavy-handed questions about whether voices were commanding me to do things, if characters on the TV were talking to me or if I thought that people were following me. They understood and allowed me to speak openly about the messy, borderless, wandering experiences that, in fact, are psychosis. It was a program that, unlike what I’d witnessed for years with my mother, never once framed medications as the only solution or the only way healing might proceed.
While I was certainly sceptical at first — I learnt quickly that actions speak much louder than words. For stretches of weeks at a time, when things were deteriorating, my therapist would ask that I email her nightly to check in. And religiously, long past her working hours, she would respond. She gave me Elyn Saks’ memoirs. She brought me warm t-shirts and socks in the hospital. It is very, very hard to weather psychosis without giving up. And at times, I did. And it’s times like this – when we reach the lowest of lows – that we need others to carry hope for us.
For those years, I had given up on ever doing anything meaningful with my life. I wanted so badly not to disappoint my therapist, to make her proud, that I kept going. She kept me going; this is the magic of human connection.
Not every first episode therapist or clinician will be quite as amazing, not every relationship so intrinsically therapeutic. But early intervention programs — structurally, pedagogically and programmatically — go a long way towards creating the conditions most likely to support such relationships. No small part of which is clinician time and flexibility, the de-centering of medications in place of a far more holistic, person and family-centered approach, and training and support for clinicians themselves to deepen their understanding of early psychosis – its social contexts and phenomenology.
My mother and I are very different people. There is ultimately no way of knowing how things might have turned out for her if she’d had the support I had — in providers and services. What is clear, is that the ‘status quo’ or ‘treatment as usual’ way of doing things is inhumane, unethical and arguably unjustifiable in most parts of the world, including some of our richest countries. The history books will most certainly come to this conclusion, barbaric as it may sound. In the future we must continue to replace the old status quo with high quality early intervention services. Let’s continuously raise the bar on how we are reaching young people and their families, and connecting with them and their experiences and figure out how to —temporarily — carry the dreams they think they’ve lost, children and parents alike.
*The author has chosen to write this article under a pseudonym to protect their privacy and the privacy of family members.