Their Bodies, Their Selves

There’s a striking moment about 20 minutes into Jennifer Brea‘s affecting film about her own and countless others’ struggle with myalgic encephalomyelitis (ME, more commonly known as chronic fatigue syndrome). She is bedridden and filming herself as she reflects on what it means to inhabit this new, limiting body, and the limited life it affords her. She is tearful as she talks about getting through her days without giving in to death:

Honestly, there are a lot of days when I feel like I’m doing a good job by just holding it together and…not killing myself. Like, I’m really proud of that. And it’s not – I know I don’t wanna die, like, I really don’t wanna die…but at a certain point it’s hard to call this living and…I think, the grief of all the things I might not do or see or have or…

Then, the gears shift, suddenly. Her voice returns to its regular register, wiped clean of any trace of tears.”Yeah, so, it’s sad”, she says impassively, abruptly closing the dam wall and containing the floods of emotions she is experiencing.

This moment struck me and I had to watch it over and over again before I realised why: In that moment, she so closely and eerily resembles my husband.

My husband is a C5/6 quadriplegic.  Over the years, he adjusted the way he conceptualises his condition and its severity on a daily basis. It’s a delicate dance: if you spend too much time contemplating how difficult it all is, you may never gather the energy you need to make it out of bed. If you don’t contemplate how difficult it all is, you run the risk of slipping too deep into a denial from which your body may rudely pull you out. In Unrest, Brea demonstrates so well the particular psychological processes that facilitate this complex coping mechanism. At some point, you have to leave your body behind, and imagine yourself as set apart from it. One of the women she interviews, twenty-something year old Jessica, describes visiting different countries and places, all in her mind. She credits the strength and versatility of her mind with keeping her sane. For Jessica, and for my husband, this mind-body split enables them to ward off moments like the one Brea experiences early on in the film.

It is when Brea shifts focus to the egregious ways in which the biomedical community has failed and continues to fail ME patients that you realise what she is trying to say about this mind-body split. The split is essentially a construct of biomedicine. Our minds and our bodies are examined and treated by medicine as separate things. Much of the thinking around ME initially characterised it as a conversion disorder, that is, a psychosomatic affliction, rooted in some repressed trauma. This approach is shown to be, at best, flawed, and, at worst, harmful. One especially disturbing story Brea tells is of a young Danish woman who is forcibly removed by the state from the care of her parents because they are charged with ‘indulging’ symptoms that are, essentially, not real. Years pass before she is returned to their care, still in the grips of ME symptoms. For biomedicine, the mind-body split is not a coping mechanism, or a sanity saver. It is a way to approach human life in a way that makes it easy to distill and understand using the current tools at the field’s disposal. One can kind of understand where this comes from. Medical professionals have impossible jobs, tasked as they are with matters of human life. Though medicine is constantly advancing, one gets the sense that there is always a race against an invisible, loud clock, with each tick bringing countless lives closer to their end. There is only so much medicine can do. So, it is helpful, I suppose, when faced with such an enormous job, to distill and separate. And when there is no easy answer or fix, sometimes that mind-body split is used to explain away the unknown. The mind becomes shorthand for all the medicine does not – and cannot – know. ‘The mind’ begins to mean that what someone experiences in their body is not real.

The effect of that, Brea shows, is that people are pushed out of their bodies and alienated from their intimate knowledge of the bodies they inhabit. Brea talks about walking home from a doctor’s visit that yielded little, forcing herself to ignore the serious pain she was in because her doctor told her it was all “in her mind”, that is, not real.  She is effectively alienated from her lived experiences by this doctor’s idea of her as a mind-body, rather than a complex interaction of various systems, both known and unknown.

What Unrest does is complicate biomedicine’s reliance on the mind-body split, whilst also showing how such a split, when used by the people within these bodies, can be a powerful coping tool. When Jessica describes all the places she’s been to in her mind, you understand on a visceral level, that her travels have saved her life. When Brea allows us that first peak into the depths of her despair, you know that she needs to pull the curtain closed in order to keep going, to keep documenting this and other stories.

This, for me, is the enduring lesson of Unrest: In people like Brea, Jessica and my beautiful, brave husband, who live with chronic conditions, the mind-body split is the psychological tool that actually enables them to fully inhabit their bodies, and their lives.  On its own, the mind-body split is meaningless. In the hands of people living in unwell bodies, it is a tool that enables the creation of meaning.

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