TV reviewTelevisionReviewA distressing film gave a glimpse of two brothers as they slowly slide back into childhood – and the elderly parents who must watch their boys sufferThe Curious Case of the Clark Brothers (C4) must rank as one of the most unremittingly distressing things I have ever seen on television. If you saw it, you'll know what I mean; if you didn't, I'm sorry to have to bring it to your attention.
Brothers Michael and Matthew Clark both suffer from a rare form of leukodystrophy, a genetic disorder that attacks the myelin sheath covering the nerve fibres of the brain. The illness is causing them to become increasingly childlike, their behaviour and ability to function steadily regressing. They need constant care and, as bleak as the present is, the prognosis is worse.
The "curious" aspect of the situation is that Matthew is 39 and Michael 42. Neither brother displayed any symptoms until they were in their mid-30s, by which time both men had been married and divorced. Michael had served in the RAF. Matthew had a 19-year-old daughter, Lydia, who was herself about to have a child.
Shortly before the disease asserted itself, the brothers' parents, Tony and Christine, moved to Spain. Michael and Matthew lived together in a one-bedroom flat in Lincoln, their deterioration noticed only by neighbours. By the time this programme caught up with the story, Tony and Christine had moved back and assumed sole care of their sons for 27 weeks, in the same one-bed flat.
The tabloids labelled the brothers "real-life Benjamin Buttons" – alluding to the Brad Pitt film about a man who is born old and regresses to infancy – a reference that displeases Christine (Channel 4, with its knack for sensational titles, has rather tastelessly repeated the offence). "They're not children," she says. "You've got to treat them as adults with a problem." Of Matthew she says: "He knows he's a man. He knows he's lived all his life, he's got memories."
It might be of some comfort to think that as their adult comprehension slips away, so might some of the suffering that attends the illness, but this isn't the case. The brothers spend a lot of time bewildered and distressed. Matthew wakes up most mornings crying inconsolably. It was touching to watch them together, an obvious fraternal affection still intact, especially knowing that in the early days the disease drove them apart. Michael ended up sleeping rough.
The programme was primarily about the suffering of the elderly parents, particularly Christine, whose raw emotions were very hard to watch. She cannot think about the future – a decade, perhaps, of increasing dependency, ending in death. Her biggest worry is that she won't be alive to see things through. Assurances from the parent of another sufferer that she will are, as you might imagine, no help at all.
"Please God, don't take my sons," said Christine, before adding: "Tony tells me there isn't a God." Even the birth of her great-grandson (Matthew's grandson) dredged up more grief.
Title apart, it was a programme made with care and sensitivity. But I'm not sure what purpose was served by my watching it. If it was to open a heretofore capped well of fear and despair deep in my guts, job done.
Dying for Clear Skin (BBC3) was hardly light relief. Ostensibly an investigation into the impact severe acne can have on the lives of sufferers, it quickly centred on the drug Roaccutane, which is remarkably effective against acne but is considered a treatment of last resort, largely thanks to potential side effects that run from dry lips to suicidal thoughts. Presented by Radio 1 DJ Gemma Cairney, the film kept an admirable emotional distance, especially considering that director Derek Jones's son Jesse – who killed himself after taking a course of Roaccutane – featured heavily. The risks are hard to assess, since acne itself is recognised as a contributor to depression. There are lots of videos on YouTube posted by Roaccutane users who believe they have developed debilitating symptoms because of the drug, but such testimony has a way of reinforcing negative emotions in vulnerable people. YouTube also has side effects.
"I blame it all, really," said Derek Jones, by which he meant that the emotional scarring of acne, the subsequent low self-esteem, the depressive side effects associated with Roaccutane and the growing conviction that the drug was the source of his problem were probably all contributors to Jesse's death.
Having watched this film, it is not easy to suggest that the idea that severe acne can be "debilitating" may be overstated, but I do have to wonder why we have something called "a treatment of last resort" for spots. How did we get here?
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