A documentary exploring the hidden world of epilepsy and the campaign for access to medication.
The story of two sisters with epilepsy, both having very different experiences of the illness, Sisters Interrupted is a documentary that is annoying, infuriating, depressing and inspiring as it explores the ludicrously intransigent world of British medicine – where medication can be both legally available and impossible to get – and the despairing nature of extreme forms of epilepsy and how it destroys lives. This story is told by Chelsea Leyland, a British woman who moved to New York aged 19 – as you do – and is now a top DJ and (as the film shows us on several occasions) much photographed at top fashion events. Don’t worry if you’ve never heard of her before – like me, you probably don’t move in the Instagram-cool circles where she is an undoubted celebrity. The story is – ostensibly – about her older sister Tamsin, who has a particularly severe form of epilepsy, suffering multiple seizures a day. She wasn’t expected to make it past 21 but is (at the time of filming) 37. This is quite an achievement – but Tamsin’s life is not exactly fun. She lives in a care home, has suffered countless injuries over her life and also has severe autism as a result of the brain damage caused by epileptic seizures, effectively ceasing to develop beyond the age of 11. I can only imagine how awful this must be for everyone around her – and, more pointedly, for Tamsin herself who is clearly aware of what has happened and is still happening. She maintains a strong sense of humour and an amusing lack of restraint (asked if she likes her ‘boyfriend’ for his sense of humour, she replies “no, for his naked body – and his willy”) but there must still be an awareness of a life lost. She constantly talks of going to California, perhaps as an envious reflection of her sister’s life. There might be another reason though, and we’ll come to that.
Now – I’m not fond of authored documentaries that follow a narrator-protagonist (the director here is Caroline Sharp but the narrative is entirely Chelsea’s), especially when they are exploring the physical or mental deterioration of a friend or family member. Besides having a suspicion that these are effectively narcissistic endeavours where the private is made public, I worry about just how much informed consent is involved with the person suffering the illness being documented. In this film, there are uncomfortable moments that I felt were awkward because there is no way of knowing if Tamsin fully understands that this is a film being made for public release or what that really means. I don’t really know what the answer to this is, because there is clearly a strong argument for showing just how something like epilepsy – which I suspect is an illness that most people still underestimate the severity of – can destroy a life, and you can only really do that by intimately exploring the day-to-day existence of those suffering. I imagine – or hope – that the people who appear in films like this do so knowing in some way that it is for the greater good. But it still makes me uncomfortable.
In fact, though, this film is not really about Tamsin or about epilepsy. Well, it is – but perhaps not in the way you might think. This is more a story about Chelsea. Not, as it turns out, in some narcissistic way (though there is some of that) but more because she represents what Tamsin could be. I don’t just mean as the ‘lucky’ sister, the one who also has epilepsy but who has been seizure-free for three years, the one with the same form of the illness but in a far less extreme manner. There is certainly a part of the film and Chelsea’s narration that explores survivor guilt and the shots of her glittering existence make a pointed contrast to Tamsin’s life in the care home. There but for the grace of God and all that.
But the real reason that the film is about Chelsea is that it is following her life as a campaigner for medical cannabis. Living in America, where states like California have legalised medical and/or recreational use, she has been able to access medical cannabis and stop taking prescribed medication that potentially comes with terrible side effects. It is this that she credits with her being seizure-free for so long and, well, the evidence speaks for itself I guess, even though this does feel like we’re potentially entering the world of Big Pharma paranoia (the film ends with a disclaimer telling people not to stop taking prescribed medication, which feels sensible). But if it is more effective than anything else, then why not? Tamsin, of course, does not have this option. While medical marijuana was legalised back in 2018 in the UK, finding a doctor who will prescribe it – indeed, a doctor who can prescribe it for anything other than a very narrow set of ailments, of which adult epilepsy is not one – is almost impossible. There are, no doubt, people self-prescribing and medicating in the community – but for someone living in a care home, where everything you take is carefully monitored, that’s not an option. In all honesty, you really hope that people in those situations would not be allowed to simply change medication at personal whim and will.
However – Britain has a long and dreadful history of controlling medication – actual, tested, licensed medication – that could change someone’s quality of life, either because it is too expensive or has yet to finalise every single trial or simply because it is frowned upon by the authorities. In fact, you’re often more likely to access crank cures than actual ones – I find it weird (to say the least) that people can access assorted woo-woo witchdoctor bullshit on the NHS but are then denied actual proven medications on the basis if cost or research – I mean, if you can get homoeopathy or spiritual healing, surely you should be allowed actual cancer treatments that have been proven to expand life, not have then denied because the length of that expansion is not enough to make it financially viable. Or, more to the point here, you should at least be allowed cannabis that has more proven and measurable results than reiki.
Of course, the cause of medical cannabis is not helped by the fact that so many of its advocates and campaigners are complete stoners. There is a strong case for the legalisation of cannabis but a lot of the people shouting for it are not exactly the type who will win the hearts and minds of politicians. What we need is a more sustained and informed argument for medical marijuana from respectable figures and pillars of society. This is where people like Chelsea – thoroughly middle-class, successful and articulate – come in. The film follows her campaign as she talks to medical experts, the EU parliament and… erm… Mike Tyson. Well, however you can get the message out, I guess. I fear that she is banging her head against the wall in Britain because I suspect that this will be the last country in the world to change track – despite public opinion, medical evidence and simple common sense, politicians on both sides seem to think that they have to compete to take the hardest line against soft drugs. Even though medical cannabis is technically legal, no one is going to rock the boat by making it actually accessible. Then again, I always thought that pornography would remain illegal in the UK for the rest of my life, and look what happened there. So you never know – all it takes is one little chip to bring the whole wall down.
I warmed to Chelsea as the film went on. I don’t think that this is a vanity project (as I suspected it might be from the opening scenes) but rather a campaigning film that shows us the worst that epilepsy can do and then suggests a way forward that is being ignored. In all honesty, I’m not sure that cannabis would do much for Tamsin – her illness is much, much more severe and far more progressed than her sister’s – but damn it, what is the harm in trying, especially if everything else has failed? If someone is having seventy or more fits a day, it suggests that the current medication is not really working for them and it is worth looking elsewhere. I’m not sure that anything else will really work either for people who are in that extreme a condition, but I’m sure that Tamsin and those in similar positions would be happy to be guinea pigs for an alternative. If this angry, impassioned and moving documentary helps their cause at all, I’m all for it.
Fremantle has the global distribution rights for Sisters Interrupted.
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