The Interview: Tell Me the Planets, Stories of Brain Injury and What it Means to Survive
In Tell Me the Planets, Ben Platts-Mills tells stories about the survivors of brain injury he has encountered through his work with the charity Headway. In particular, the book focuses on Ben's friendship with Matthew, who was left with brain injury after undergoing surgery to remove a life-threatening cyst.
In an exclusive interview Ben and Matthew discuss their own experiences, challlenging the stereotypes around brain injury and revealing what it really means to live with a brain that is irrevocably changed.
Matthew, Ben writes in detail about your life and experiences, what has your reaction been to reading about your life from the perspective of an outside observer and a friend?
Matthew: I have taken a very detached approach to Ben's project. Being written about is psychologically interesting. There is an odd and a peculiar ego-trip about it. But I haven't allowed myself to be mired by it. My only concern is that Ben and Headway get a lot of exposure for the amazing work they do. Obviously, I worry about the impact of this on my family here in London and in Nigeria. My worry is based on the nature of the culture my parents emanate from. Physical, psychological and material wellbeing are highly valued. Having a brain injury can affect all of these attributes. Physically, I do come across okay but I am persistently tired and unable to hold down a job. Psychologically, a brain injury does have an impact on you - depression is rather very common amongst individuals with brain injuries. Materially, I have been unemployed and not earning for a rather very long time. Culturally, from a Nigerian perspective, it makes me persona-non-grata. But I am hoping that Ben's book and efforts turn out to be positive.
What do you think is the benefit of looking at life with a brain injury from the point of view of an informed lay-person, rather than an experienced clinician? What did you hope to get across that might differ from previous books on the subject?
Ben: There are many wonderful books about neurological illness written by clinicians but they have a tendency to focus on the perspective of the author or on an idea they are trying to illustrate, rather than on witnessing the experience of the person who’s living with the condition.
As a lay person working for a charity, I’ve had the privilege of getting to know the people I’ve written about over the course of almost fifteen years. The book has emerged out of that long collaboration – a process that would have been unlikely in a clinical setting.
Not being a clinician, I’ve also had the freedom to understand brain injury in different ways: as a disease, yes, but also as a narrative event; as a change in identity; as a cause of personal loss; even, in some cases, as an opportunity for positive change. I hope Tell Me the Planets gives an insight into the people I write about and not just their injuries, and that it describes the injury in context of the person’s whole life, showing these different impacts as they emerge over time.
Another privilege is that I don’t have to have all the answers. In writing the book I could afford to be honest about what I did and didn’t know, and, in the case of Matthew’s treatment choices, the fact that I had no more agency than he did. I hope this gives the book a greater emotional urgency than a more traditional clinical narrative – because I was experiencing the same disempowerment Matthew was and because he and I are friends.
The advances of medicine and technology have allowed great strides in diagnosis and treatment. Do you think these developments have led people to be complacent about medical treatment and to be unaware of how much remains unknown and untreatable – particularly in relation to the brain?
Ben: I don’t think people are complacent about medicine. Very few of us have the luxury of time to spend thinking about life’s unknowns and it’s understandable that if the worst happens we want the best possible treatment. But there is definitely a lack of understanding about the implications of neurological injury – the fact that medicine doesn’t offer a cure, that survivors are very often permanently disabled and that these disabilities have complex effects on the whole person, their family and friends. In so many instances, the meaning of a brain injury to survivors and their families includes not just a brush with death but a dramatic challenge to their world-view. They are confronted with the fact that what had seemed to be essential properties of the person (memory, thought, language, sensation, personality, recognition, attention, relation) are all in fact bodily processes, vulnerable to harm. It’s too much to expect that acute clinical staff – neurosurgeons or neurologists – will somehow help patients and their families to grasp this when so much else is going on. Maybe it’s also wishful thinking to hope my book can help change this!
To what extent do you think there’s a tendency for people – both within and outside of the medical profession – to focus on the negative aspects of what a brain injury might prevent an individual from doing and addressing those impairments, rather than engaging positively with a person’s future potential?
Matthew: That has been a problem I have faced from the very moment I became conscious in hospital and having to deal with visitors. The mere mention of my brain injury comes as a psychological shock to most non-medical people. But this is understandable - very few people will hardly ever meet someone with a brain injury and its accompanying cognitive deficits. Medical people tend to fall into two categories when it comes to brain injuries and accompanying cognitive deficits. The encouraging and the discouraging: the former tell you to give it time. Give yourself time to heal - you need be patient. The latter simply give you the bad news with non-sympathetic aplomb. You need to find yourself something else to do with your life they say. You are terribly cognitively impaired you are reminded. This dichotomy depends on the medical role. The former mostly nurses and the latter usually the consultants.
When it comes to brain injury, do you think clinicians are too quick to want to grade and measure ability and potential? How important is it to prioritise listening to and understanding the individual over blanket clinical assumptions?
Matthew: I feel that the medical field is a highly technical one with a large knowledge base which patients do not have access to. This usually creates a dichotomy between patient and clinicians. As a patient you are there to get fixed and to resume your life as you once knew it. But in between you and the clinicians are the realities of your specific medical conditions. This can make for a tussle if not handled reasonably by both parties involved.
I found the sections of the book about Matthew’s memory diary fascinating. Do you think more could and should be done around to engage with self-designed and self-directed treatment for brain injury?
Ben: I think brain injury rehabilitation represents a massive challenge. Matthew’s hospital diary reflects how that environment was, for him, disorienting and anxiety-provoking at the early stages, because it lacked the kinds of cues that would support his orientation – to his own life and identity, to his routine, to his goals and hopes. You can also see this at later stages of recovery. People with very profound amnesia, for example, benefit hugely from living in environments where they are surrounded by objects and people and practices they know well and that continually remind them who they are. At Headway East London we place a big emphasis on taking a collaborative approach, making sure projects and activities emerge out of long-standing practices and relationships, and out of the shared passions of survivors, volunteers and staff. In this way, the work is co-designed and co-directed, with an emphasis on collective action and mutual witness, and on the idea of ‘re-minding’ through relationships and roles.
I was struck by a passage in the book which describes the acute grief of a brain injury removing the possibility of a potential future; ‘the future we each harbour within us… as real as the day’. How important was it for you, Ben, to get across that sense of how much we rely on a future full of possibility we simply take for granted?
Ben: For me there’s a question about fate at the centre of the book. Do we live in an indifferent universe? Do we have the power to decide our own fate? Is there a benevolent God watching over us? Brain injury provokes terrible confrontations with these questions – confrontations that can be overwhelming for some survivors. It wasn’t my intention to teach readers any kind of lesson or offer a cautionary tale but more to record what I’ve seen – both around these hard questions and the way survivors can, in some cases, learn to appreciate life more keenly through their experience of loss.
Is that a description that resonated with your experience, Matthew?
Matthew: I haven't been able to read Ben's response to this question. But I will say that I was someone who planned for the future a lot before my brain injury. In fact, I felt like I had reins at hand to direct its flow - both pace and course. My brain injury has rid me of this fantasy. Now I simply take it one day at a time. The future doesn't exist for me anymore - I take it one day at a time because my health does not enable me to plan ahead for the future. I hope for good things but the results do not seem to be in my hands. I have no means to shape my future. It is not in my hands.
It’s clear from reading the book, just how important it is for people with brain injuries to have a dependable continuity of appropriate care. What is your assessment of the provision and understanding of these needs within health and social care in Britain today?
Ben: One of the stories in the book follows the experiences of Liah, who is being made vulnerable by the inadequacy of her borough’s services and by the intersection of her disability with her status as a refugee who lacks family and other connections that would keep her safe. At several points in the story it’s clear that not only are the social services failing to meet her needs, they’re actively exposing her to risks – in terms of both mental and physical health. I think a lot of people simply assume the welfare state is doing its job and that austerity policies can be applied with some discrimination, protecting the most vulnerable people from the worst effects. I hope the book will help people see that, in fact, government cuts are a blunt instrument that inevitably affect everyone – with the most vulnerable people consistently being the most exposed.
Do you think there’s a tendency around the treatment of people with brain injuries to conflate care and responsibility; to take away people’s agency within their own lives? How important is it that people should, wherever possible, be able to determine their own course of treatment and what risks they are willing to take?Matthew: This is a hard question to answer in a generic fashion. It obviously depends on the nature of the disabilities in question and on the needs of the patient. It is hard to give a specific rational answer to this question. But from my own experience I will say that a loss of agency has probably been one of the biggest changes in my life since my brain injury. This started obviously in hospital wherein everything is somewhat regimented. A time is set for everything in a hospital environment and it is hard to break free of the order as prescribed.
Afterwards, you are required to be on various of rehabilitation programs wherein you realise how much control you have indeed lost of yourself and of your future. Your options are channelled to you and described to you in a highly constrained fashion. You are often warned that stepping out of these constraints would lead to nothing but failure. And having failed many times in my attempts to get back into a competitive work environment perhaps I need concede that they might have a point. But I think and feel that a slight change in attitudes by the public and by employers could make a difference.
Going back to the issue of care there was a stark difference between my experiences for my surgery in 2005 versus the surgery in 2016. For the former there was simply no choice about the type of treatment required. It was emergency surgery and had to be done before I became critically unwell or even died because I was in a very bad state. But before the surgery in 2016 I and Ben had been talking to the surgeons for almost two years before the operation. Given this time frame we were able to speak to two separate teams about the options available: removal of the cyst or an insertion of a ventricular ‘shunt’ to mitigate any fatal effects of the cyst. Both clinicians were very cooperative in explaining the pros and cons and both approaches. To summarise, one method was riskier. I chose this because I reasoned that it provided the best outcome for the future.