“I’m done with the shame,” I said to my friend.
I was 38 years old. My mother had been dead for a year. And I was just starting to unpack what her disappearance meant, and how I wanted to live from here on.
If you had asked me, I would have said we’d had a happy childhood. In our family, while there was never enough money, and that alone caused huge stress, I never once doubted how deeply devoted our parents were to our welfare and the enormous love they had for us.
Especially, perhaps, my mother, who was our primary caregiver, and who repeatedly delayed or shrugged off her own needs in favour of meeting mine. So far, so heteronormative.
We were incredibly lucky. In our family there was no history of alcoholism, addiction, or abuse. Instead, there was an abundance of love.
There were, however, some pretty big secrets.
When she was in her 20s, my mother had a nervous breakdown which turned out to be paranoid schizophrenia. She had electric shock treatment and was prescribed antipsychotic medication which she took for the rest of her life.
We understood that my mom’s diagnosis was not to be spoken about with anyone outside our family. While I often talked about it with her, we struggled to make sense of this puzzling condition, to verbalise what we were experiencing, or to find common ground with other schizophrenia sufferers.
We were acutely aware that for most people this word alone was frightening and could result in them cutting ties. In fact, this had already happened a few times when people had come too close and realised my mom was unwell.
The popular perception of schizophrenia patients is of violent, unkempt, confused people, acting irrationally, beyond the reach of another’s love. Someone who isn’t safe to be around; someone who can’t be trusted.
It’s true that at times we realised my mother was experiencing something different to what we were experiencing, an experience of altered reality.
(As I’m writing this, I realise we spoke about this so little we didn’t even have a term for what was going on. My mom would say it was a breakdown. The rest of us did not name it.)
She might have slept poorly for the last few nights, or maybe her medication had run out and her mind would do a backflip. Whatever had been the trigger, I could identify it immediately – a deep voice that wasn’t her own, eyes that seemed to look beyond me, and a conviction that something terrible was happening.
Once, my brother phoned me up and when I answered he put my mom on the phone. She was convinced that I had been kidnapped, raped, and tortured, and letting her speak to me on the phone was the only tactic he could come up with to reassure her that her nightmares weren’t true.
It was distressing for us to see and hear, but we never at any moment felt physically threatened by her.
Rather, what I always come back to is how terrifying it was for her to live through these episodes, and the profound shame she felt after she’d returned to her senses.
A few years ago I came across the term invisible disability, which describes how people may be battling through disabilities that aren’t as obvious as a missing limb or eyes that don’t see.
That’s when I realised that my family had been marked by invisible disability my whole life.
My mother was a teacher and the breadwinner of our family. She was very aware of the value of a regular pay cheque.
Even though her colleagues judged her for being tired, slow, falling asleep in meetings – all resulting from the chronic medication that kept her brain in line – she chose to keep quiet rather than explain her health problems, for fear of dismissal.
Schizophrenia wasn’t her only disadvantage. She was often clumsy, stumbling while she walked, and her driving was always jerky rather than smooth.
It was only after more than 30 years that she told me these were the side effects of a serious neurological illness she’d had after I was born, Guillain-Barré syndrome, which had left her paralysed for a while.
Her psychiatrist had commended her on how well she had recovered.
I was struck that even after knowing her as intimately as I did, and her history with Guillain-Barré, I hadn’t considered that the way she moved was a marker of the ill health she had suffered.
My mom was able to work for most of her life, stay married to my father, and raise two kids, at a time when people believed – and maybe still do – that schizophrenia meant spending your life in an institution.
In private, we talked about this paradox. But it didn’t occur to us that there must have been many people out there just like my mom, who also heard voices and were pursued by their nightmares, who were also able to stay under the radar and strive, despite everything, for a normal life.
Nowadays, mental health is in the spotlight as a health challenge everywhere. By now, we all know someone who struggles with depression or anxiety.
Maybe you yourself have depression or anxiety. Perhaps we know someone who is bipolar or suffers from post-traumatic stress disorder.
But do you see what’s happened? We’ve started talking about mental health, and wellness – and not mental illness, which retains the dark, scary, taboo meanings it has always had.
But the mental illness stuff is still there, we’re just looking away. And when we look away, people don’t have the tools to describe their experience or put it into context.
It becomes a story about personal failings that must be hidden from the world.
When I look back at my childhood, I see how isolated we were. My mom believed she had to hide her true self from the world in order to be accepted, and we loved her, so we complied with her wishes.
Walking through the world without revealing yourself is lonely, and my mom, a shy person anyway, found it hard to make friends.
When you believe, in the core of your being, that who you are is not good enough, it inflicts a quiet violence. You start thinking that maybe the rest of you isn’t good enough either.
And when you have a parent who believes this, that shame can get passed through generations.
After her death I realised that the shame was still with me, even though I didn’t have the health problems my mother had experienced.
There were so many ideas about my own body, for instance, that were inflicted with shame.
Feeling the shame stopped me from speaking out, sharing my experiences, and finding a community.
And now I realise that the shame my mother felt was likely almost as oppressive as the stigma she encountered, even as it also protected her.
We all have our brushes with shame. Each time, I’ve found that when I feel the shame it’s a pointer for me to share my story with someone else.
The shame is isolating and controlling. When I can be vulnerable, safely, with the right people, it’s healing.
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