Darren, my brother, was born with Tuberous Sclerosis Complex (TSC) and Epilepsy, and in 2015 was diagnosed with late-onset schizophrenia. I spent a month with him in an Australian hospital in 2016 and documented some of his journey to (semi) recovery.
Most people are aware of epilepsy and its effects, less are familiar with TSC. Without going into detail, TSC is relatively rare and refers to tumours that grow on body organs, causing complications and shortening life expectancy. In my brother’s case, TSC tumours in his brain have caused developmental delay and are the cause of his epilepsy.
Darren has faced many challenges through his life. Developmental delay resulted in a stalled mental age. This became more socially problematic as he and his body aged. While he still likes to interact with those of similar mental capacity, typically children, an awkward looking 42 year old man approaching a young child in the street is understandably unwelcome for the parents. Over the years I have seen many of Darren’s friend’s outgrow and eventually abandon him. It’s difficult for him to understand this, and it is sad to watch.
On top of the challenges posed by TSC, epilepsy and solitude; Darren was diagnosed with late-onset schizophrenia in 2015 – an unwanted and undeserved addition to his life. Early interventions with medication proved inadequate, so he was admitted to hospital in 2016. This was to ease him off existing medications while under observation, and introduce a better solution. As expected, as existing medications were gradually removed the true face of his torment was unveiled. At least eight distinct, imagined individuals emerged to verbally and psychologically abuse him. Some were people that had been in his life and others not, but all were destructive influences on his psyche. Unfortunately the new medications that were introduced did not work for Darren’s situation.
After a long period of trial and error, a partial solution was found that pacified most of his internal voices, however a total solution eluded doctors. To this day he still has issues with unseen and unnamed forces tormenting him. Unfortunately, the Australian mental health services are also stretched to capacity. Darren receives comparatively good care, but it is far from adequate to allow him the freedom to enjoy the lot that life has thrown his way.
At the best of times, people with schizophrenia find it extremely difficult to grasp reality. It is unimaginably more difficult for an already intellectually disabled man to comprehend this monster. Spare a thought for those affected by mental health issues, and for the intellectually disabled people who live, mostly out of sight, in our communities. Love you bro.