The Dog Days – What it’s Like to Live With Schizophrenia
Written by Greyon Fernandes
Since my diagnosis, people have asked me: ‘What is it like to live with schizophrenia?’. Until this point, I’ve responded in a very clinical manner: ‘I had and still have intrusive thoughts’, ‘My speech gets distorted at times’ – clinically known as word salad or schizophrasia, ‘I suffer from tactile hallucinations’. I could go on.
Recently, however, I came across an event from the 1960s that accurately describes my experience with schizophrenia, “A visceral event – the kidnapping of Barbara Mackle”.
Barbara Mackle was a 20-year-old Emory University student. While recovering from the flu, she was kidnapped, placed in a coffin-like box and buried on secluded land. My onset of schizophrenia was more gradual. It emerged during my final year of secondary school. Six years later, I descended to my most vulnerable point.
While Barbara was held captive she had limited resources – a fan, a light-source, water and food. I, too, had limited resources. My sense of reality was depleting. My mind developed a core belief that it was being read and controlled. I withdrew from society and isolated myself in my own mental box, which was similar to Barbara’s coffin-like existence.
Barbara and my experiences are similar in that our fear was palpable. Barbara screamed for help as did I and pummelled the coffin lid searching for psychologists, without considering psychiatry. No one in my family had ever been diagnosed with a mental health condition. The Irish school system had also failed to provide me with a comprehensive mental health education. Psychiatry was never even mentioned, let alone explored in detail. I find this to be ironic, since conditions such as schizophrenia usually onset in late teens and early to mid-twenties. Psychiatry was a foreign subject to my younger self.
Both Barbara and I suffered relentless mental anguish. The loneliness and suffocation of being trapped in a coffin-like box, while friends and family kept you in their thoughts and prayers was highly relatable. Barbara resorted to imagining Christmas with her family as a source of comfort while I sought comfort in my dogs and my childhood photos.
After 83 hours, Barbara was rescued, and this is where our stories diverge. No one put me in my mental box, so, to some extent, no one was going to get me out.
Recovery requires willpower, positive-thinking and hope. It’s very achievable.
I may be high-functioning, I may be a straight-A student, but I’m also on the highest possible dosage of my medication. You’d be wrong to assume my experience was any less traumatising. Honestly, to many of my peers this would be the first time they realise I have schizophrenia as they never witnessed any external symptoms of my psychosis.
I could also liken my experience with schizophrenia to a miscarriage. In both situations an error in the person’s body chemistry has created a loss of a certain expectation. I, as a teen, had an expectation of stability while a pregnant woman may have had an expectation of a newborn. There is an immense amount of shame and societal pressure to remain quiet around both situations. A person with schizophrenia could maintain a life of stability but still have the potential for psychosis. In a similar way, a woman may pursue a pregnancy again but still have the potential for a miscarriage.
Finally, I would remind the people who are curious about schizophrenia that medication isn’t magic – people with schizophrenia still carry their coffins. So, don’t judge, undermine or ignore us. Don’t think for one second, we crave your attention or need your validation. Don’t apply your absurd fallacies to us! Instead, celebrate our strength.
There are simply no words to describe our strength, our courage and our perseverance to continue with day to day life which most people take for granted.
I’d recommend this documentary on Barbara Mackle: A Crime to Remember – Coffin for Christmas.