In Schizophrenia Awareness Week, Jane Bostock reflects on having a parent with the diagnosis.
Jane Bostock on her wedding day, with her mum and sister. Picture by Darren Cresswell.
I love her with all my heart but I have no idea who she is or what she wanted out of life.
This is the only photograph I have of Mum and I together as adults and I’ve been an adult for a fairly long time. It was taken at my wedding last year and she did not want to be there. We had corralled her. Because that’s what mums do. They go to their daughter’s wedding.
A few days before the big day, I was rooting around TK Maxx in Leytonstone, looking for an outfit she might wear. She didn’t wear it. She wore what she felt comfortable in, which had been home-made, years ago, and worn daily for I have no idea how long.
For as long as I have had awareness, Mum has been unwell, having been diagnosed with paranoid schizophrenia.
On the day of my wedding, my sister entered my bridal suite, with Mum on her arm, perching her on the corner of the bed.
I was being made up and photographed and felt my own unease well up. Mum sat there motionless, until I said: “Well, how do I look?” She looked at me puzzled and replied: “Jane is that you? Oh, I did not realise it was you.”
She looked really confused. It was a jarring moment, but not an unfamiliar one. Part of me wanted to yell: “Who the fuck else was it going to be?”
Mum left as soon as the ceremony was over.
I have had many similar outbursts over the years in sheer frustration. I am not proud of them. Because, for all that I have learned about how it is for Mum and after spending much of my working life in mental health, part of me always wishes it was not so for her. It’s too close to be clinical and rational, so occasionally I act like a dick.
Schizophrenia is pretty much an umbrella term for WTF is s/he doing? Statistically, one in 100 people will be affected by such a condition in their lifetime.
Everyone is still unsure about schizophrenia’s roots. Back in the ‘90s genetics were heavily mooted, which to me felt like the Doomsday Clock, counting down to 18, when I too would lose my mind.
Now, we talk more of the nature/nurture debate. Yes, some of us are genetically predisposed to the illness, but environmental factors, such as upbringing, life experience and resilience, probably help decide if the genetic switch gets flicked. But, in truth, people still don’t really know.
Many people with this diagnosis can manage the symptoms and live their lives well. Roughly a third of people have one incident in a lifetime, another third have it intermittently and periodically, and the final third are lost to it entirely. This is the category my mother fits into.
The genesis of Mum’s condition is sketchy. Before I was three, she was hospitalised for several months and ECT’d to oblivion. The suspicion is it was postnatal psychosis; misdiagnosed, mistreated and misunderstood, which evolved to something more permanent.
She has been medicated for over 30 years. I often say she is more schizophrenia than the woman she must have been before all this.
I have hardly any back-story for this woman, my mother. Immediate family are long gone and when they were around, she got verbal abuse for being “mental”. They could not deal with her craziness. My father, who divorced Mum when I was seven, struggles to recall much and friends she once had abandoned her more than two decades ago. They could not cope with her craziness. My sister and I left for the sanity of my father’s at 17. We could not deal with her craziness.
And yet, up until I was 17, she looked after us both, mostly as a single parent. I’m not saying it was fun, far from it, but, despite everything she managed to put a roof over our heads and feed and clothe us both. Which is a minor miracle. Thank you Mum! I wish you could hear that and know it to be true.
I love her with all my heart but I have no idea who she is or what she wanted out of life. I can’t ask her; we have never had a meaningful conversation, just an obligatory “how are you?” and goodbyes. She is now husk like.
People with such illnesses and odd presentations get short shrift in life – and from professionals. Physical ailments are often dismissed by doctors as part of a delusion and underlying physical problems are never picked up.
That’s why, this week, Rethink launched its 20+ campaign. It is estimated that many people with schizophrenia die 20 years earlier than those that do not and that much of that is down to how we treat people with mental health problems.
I absolutely believe that if my mother had had a coherent voice, she would have been offered more support than just being pumped full of dulling drugs. Never once in the early years was she offered a talking treatment. Much of her current support has been facilitated because, as adults, my sister and I can find out what she is entitled to and insist upon it.
So, in this week of awareness, I ask you to be open to other ways of being. Be tolerant and understanding of the differences in someone who has such a condition, any condition. If they don’t want to go to a wedding, don’t pressure them to do otherwise. Even I am still trying to work it all out.
Mental illness is much misunderstood and feared. People are embarrassed by it. Don’t be that person sniggering and pointing at the man in the co-op who is shouting at a tin of tomatoes. Know he is a human being like you. Treat him with the same regard as you would anybody. That’s awareness.
To learn more about schizophrenia and the 20+ campaign visit www.rethink.org
A human, like you.