Unrest Review

A couple of weeks I came across the documentary film Unrest. I’ve now seen it a couple of times and really think that it is an important contribution to film as it explores the concept of illness and goes beyond the normal portrayals of it in media as something from which a character is either miraculously cured or dies from. Focusing on Jennifer Brea, the filmmaker’s life, Unrest looks at what it is like to live with a disabling chronic condition both physically and mentally, as well as how widespread an issue this is, yet is never really discussed. Instead as she puts it with chronic illness, “we disappear so you never see us at our worst”. Brea through the film successfully changes this.

Unrest started off as a series of clips that Brea made on her phone to document her symptoms and how ill she was so she could show this to doctors in an attempt to find answers, a diagnoses and be believed. These clips which have been retained throughout the film provide an accurate portrayal of what daily life is like for her. However the clips then evolved and through showing film of what her life was like before illness, with illness and interviewing others who are bed bound, scientists and medical professionals through Skype from her bed, Unrest has created a new way of making films. While Unrest focuses on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) which Brea was eventually diagnosed with, the film however also is able to show what it is like to live with other disabling conditions too. What isn’t mentioned in the film but has been discussed in interviews since is that Brea also has diagnoses of Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS) and so life with these conditions is also shown.

Brea explores her own personal history as going from someone who was studying for a PhD at Harvard, who had travelled the world, studied abroad and was extremely high flying and ambitious to being bed bound and wondering what her identity is as she grieves all she lost and might have been and wonders what her existence will consist of now. She explains she feels like she has “died but forced to watch the world move on”. Running alongside her own journey of being ill is the journey of chronic illness and ME/CFS too. As is explained by professionals and looking at historical data in the film longterm illnesses that are hard to diagnosis often have histories of being believed to be psychosomatic with sufferers being sectioned and diagnosed with hysteria before a biological cause was found. ME/CFS is still going through this process. As the majority of sufferers of ME/CFS and other autoimmune conditions are female the film explores how much has this influenced historically how the illnesses have been viewed by the medical community and the lack of research that often goes into these areas.

While the personal experience and history of ME/CFS is explored, Brea also explores the stories of others severely affected with the condition around the world. We learn of a young woman in Denmark who was sectioned as it was not believed she could be physically ill against her and her families wishes. Another woman in America tells of how her marriage fell apart after she got ill and answers couldn’t be found at first, until her daughter also got sick with the same condition. A former photographer who can no longer speak, eat or tolerate any noise or light has his story told by his family who have actively got involved in research about the condition, while a 23 year old sufferer from Kent, England who spent four years of her life in hospital has her life depicted. While films exploring topics such as ME/CFS have been absent, the fact that the condition affects millions around the world is not ignored within this film. A portion of Unrest examines the protests and campaign ‘Millions Missing’ which aimed to get governments to sit up and take notice that people within their states were missing from everyday life due to severe, chronic illness that was being ignored. The Millions Missing campaign is extremely clever as it raised awareness of people who are absent from society by simply placing their shoes with a label of what the person was missing somewhere public. Its really worth looking up if you have a spare five minutes.

Unrest’s main aim is to raise awareness of chronic conditions, their history, how widespread they are and how these conditions are absent from public consciousness and hidden behind closed doors. It does this effectively and the film is definitely hard hitting and impacting on the audience. For me personally though what stood out was that the film showed that severe illness is not just something that happens to people who do not want to work and want to look for an excuse to stay at home. It shows it is very real and has devastating effects for people who very much want to be part of life and who were extremely active studying, working, being part of families, travelling and living life to the fullest before getting sick. I thought this was incredibly important as people who are ill are so often referred to as ‘benefit scroungers’ and made to feel like we are simply trying to cheat a system to avoid responsibility.

Another important element in the film for me was that it focused not just on the individual patient’s experience of being chronically ill but also the wider implications of this on those around them too; how families are affected, how simple daily tasks became impossible etc. The guilt of the sufferer and changes families had to make was explored in detail. Unrest is not without humour and hope. Being ill does not mean you stop living completely and sometimes it is the small things that many people can take for granted that can mean a lot in one person with a chronic illnesses day and this was portrayed really well. Finally a note should also be made that the cinematography and music was also fantastic.

If you have a spare hour and a half and are looking for something to watch that is different from other films, is very well put together or simply explores issues that the media usually shies away from I highly recommend giving this a go.

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September Book Reviews

It has been a quiet month of reading however here are my top four books from this September…

Bleak house by Charles Dickens
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I’m one of those readers who has several books on the go at all times. I’ve been reading Bleak House since May of this year on and off and I finally reached the end of it this week. It’s a very long book with extremely detailed descriptions throughout (as Dickens seems to be a fan of) but well worth a read and sticking to until the end.

Bleak House follows multiple narratives of a range of individuals including a woman called Esther who goes to live at Bleak House and who is an extreme optimist, Lady Dedlock who lives a life of luxury but guards a hidden secret and Joe, a street child who must fend for himself and is constantly being moved on by officials.

While I can’t give away too much of the plot as it all interweaves with each other and it would be easily possible in even saying little in saying too much. However Dickens through his portrayal of Victorian England still brings up many questions and themes that are relevant today: Do we blame the individual for poverty? Do we forget to focus on those who might need help closer to home? Must you always carry out duty no matter what the cost? What really is honourable or not? As well as themes of family or lack of it and what really counts as being a relative. What does family really mean?

I definitely think this book is worth a read if you have quite a lot of spare time. It is one of those books that is difficult to just read a page of in one go and instead needs to be read in larger chunks too not get lost.

Pat of Silver Bush by L.M.Montgomery

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As a child, L. M. Montgomery was my favourite author and I still frequently revisit the Anne of Green Gables and Emily of New Moon series. I was absolutely thrilled to discover that more of her books have recently been reprinted (they’ve been out of print for a number of years) and so ordered a copy of Pat of Silver Bush.

For those not familiar with L.M.Montgomery her books tend to centre around children/young adults growing up on Prince Edward Island at around the turn of the century until around the 1920s. She writes of old fashioned farm houses, and mini adventures, catastrophes and incidents that befall her heroines. Her books are always gentle stories though her characters are normally strong females with plenty of imagination and inward reflections.

Pat of Silver Bush follows the story of a young girl into early adulthood as she grows up with her extended family on Prince Edward Island. Pat however hates change and doesn’t understand why things can’t be the same. The book follows her life as she is forced to encounter change some of it very unexpectedly.

Pat I have to admit is not one of my favourite Montgomery heroines and the story did seem slightly rushed at times. Nevertheless I really enjoyed reading this and it has renewed my ambition to someday make it to Prince Edward Island.

This is a good book if you want a gentle read and bit of an escapism into a past world. The story follows seasons as do rural communities and has a sense of a different pace of life to the ones we follow today. If you’re new to L.M.Montgomery books I would though recommend starting with one of the more popular Anne of Emily series.

To Kill a Mockingbird by Harper Lee
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I read this book about once a year and realised earlier this month that my annual reading of it was long overdue. One of my favourite books I don’t think there are enough good things to say about it. If anyone was to read one book from this list, this should be the one.

Jem and Scout Finch are growing up in a small town in Alabama during the Great Depression. They are brought up by their father Atticus who is a lawyer and quite possibly one of my favourite characters in literature. Atticus is called upon to represent a man who has been accused of raping a girl in the town. However the accused is black and in Alabama that makes him guilty even if the evidence suggests he is innocent. The book told through Scout Finch’s eyes tells this story as well as following her growing up and her own interpretations of her father, who while having integrity and strong morals, can at times not be understood by his daughter for this.

There are so many themes rising from this book from race, poverty and gender expectations to what age do prejudices develop, peer pressure and group mentality to the importance of integrity in all situations.

What makes the book work as well as it does though is it’s narrative told by Scout who never fully realises the implications of what is happening around her. Sometimes more is said by what is not said then what is explicitly written on the page.

Prepare if you start to read this book that you will not be able to put it down until you turn the final page and then prepare that you just might want to start it all over again. Even if you’ve read this before I recommend reading it again. I pick up something different from it every time and as I’ve got older my interpretation and understanding of the plot has changed too.

Fall down 7 Times stand up 8 by Naoki Higashida
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I read this book in part for my dissertation and partly because I wanted to anyway. This is a non- fiction collection of writings by a severely autistic man in Japan about his life. While Higashida is non-verbal and requires assistance in day to day living he is extremely expressive through written communication and is able to describe in detail how he experiences the world. Talking about everything from how he finds others perceive him, to the care he needs and the frustration at not being able to express himself verbally this is a really interesting account.

It once more raises the questions of do low and high functioning labels of autism put people in a box that results in their personhood, potential achievements and individuality being ignored and on the other hand certain difficulties being overlooked.

A must read for anyone who works with autistic people or those with learning difficulties or to be honest for anyone. It shows that everyone is an individual and deserves to be treated as such and that is not ok to overlook someone or make assumptions about them.

June’s Book Reviews

Most of the time I am awake I am either studying, reading or watching boxsets at the moment. While I’ve always been a reader and this has developed into more of a lifeline. So I have decided the end of each month, the Thursday blog will be devoted to a review of the last month’s books.

As the start of this month was my birthday and many people gave me books as presents so I have read a more diverse range of books than normal. The first three were all given to me for my birthday and the last two I got with birthday money to help with my dissertation in the first case and just for fun in the latter.

Night Waking by Sarah Moss
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This was the first book I read this month. I actually ended up reading it cover to cover in one sitting because I could not put it down and had to find out what would happen next. If you are going to read it, I suggest preparing a flask of tea and packed lunch in advance! The story follows Anna and her family as they move to an island off the West coast of Scotland. This island, while fictitious, is based on St. Kilda (think middle of nowhere, stormy weather but plenty of wildlife). Anna is an academic, working on a book about the concept of childhood, while simultaneously disliking being a parent to her own two children and trying to get them to leave her alone long enough so she can write. Meanwhile, her husband is studying birds on the island and getting ready to invite tourists to stay in the holiday home that they have refurbished. In the midst of all of this, the skeleton of a baby is found in the garden and there are mysterious noises coming from the attic in the house. The novel switches between the past and the present. The sections set in the past (1870s) are a series of letters written by a midwife who has been sent to the island to work out why no babies being born are surviving longer than a few years at most. While she is there to assess child birth practices and living conditions she suspects her reports are not being sent back to the mainland…

This book is an easy read and while being light enough that you don’t need too much concentration to get through it, it does have enough plot twists and a strong enough story line that it is far from boring and you really have no idea what will come next. It also raises questions around is there always a right and wrong answer or can multiple people who make diametrically opposed decisions be equally correct at the same time? Furthermore, the book also looks at issues of equality and elitism without dragging the reader too much into these subjects they lose track of the story. From different social classes, landlords and tenants, to women trying to progress in academia it shows that there have always been barriers in the way of the many put there by a few which silence those at the bottom of societies hierarchies.

Gilead- Marilynne Robinson
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I would never have picked this book off a shelf to read so was a bit apprehensive. However, it turned out to be an interesting book nevertheless. The Reverend Ames is dying and has decided to write his memoirs, family history and advice in a book for his seven-year-old son. He is aware that his son will not be told these things by him so the book is a collection of what he thinks his son should know and what would have information would have been passed on should he have lived to see his child grow up. It is a simple idea, but quite a powerful one as Ames reflects on his own life, prejudices, and decisions as well as those of family members before him.

There is no substantial plot line and nothing extremely shocking or exciting happens. However, if you are looking for a gentle read then this is perfect. However beware there are no chapters, the book runs straight through and is at times quite fragmented as a result. It is quite possible though that this fragmentation is deliberate and provides a tool to show that Ames brain is also switching from subjects and memories. The main frustration I found is I wanted to keep telling him to stop writing and go and spend actual time with his son and build memories while he still could.

Home- Marilynne Robinson
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This novel is by the same author, set in the same town, at the same time as Gilead. However, it focuses on another characters perspective. I much preferred this novel to the first and understood the characters, their motives and actions far more than I did of Ames. Focusing on siblings Jack and Glory who have returned home as their own father is dying (Robinson likes to focus on death!) they look back at their childhood and what has happened to them since as well as the decisions they have made. It many ways the themes are very similar to that of Gilead, only the reflections are happening by younger characters who have more dramatic stories to tell and often cross what existed as social barriers then.

I really recommend reading the two books together as it shows that how one person may interpret an event can be polar opposites to someone else. Again the story is a bit disjointed but this time round it is much easier to follow. Prepare for plenty of unexpected twists!

The Man who Mistook His Wife for a Hat and other Clinical Tales- Oliver Sachs
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Sachs wrote in the 1980s several books which all look at psychology and neurology but not simply from a medical lens. One of the first people to combine the medical and social model of illness and disability, Sachs presents case studies of patients that are not just a list of traits and conditions but also show the person behind all this and their personal experience. While this is more commonplace now, at the time of writing this was quite unusual and medical and social models did not mix as they do today. Consequently, this book is incredibly interesting to see how this has developed over time.

Furthermore, Sachs has a really easy to follow and humorous writing style that makes you forget you are simply reading medical cases and as a result, you wonder what happened to the patients. The version I read had postscripts after the cases where Sachs had added more information about the patient’s, correspondence he had with other medical professionals and discoveries that had been made since. Interesting fact from this book was that Parkinson’s Disease was not discovered in a hospital or clinic but by psychologists who were people watching on a street and observing that some people had very different movements. It had often been accepted before and had not received much medical attention! Consequently social and medical sciences really do need to work together!

Miranda’s Daily Dose of Such Fun- Miranda Hart
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The best book of June goes to this gem! This book consists of 365 fun things you can do- one for every day of the year. They are all a bit silly but funny. Written to help people with anxiety, depression but very much suitable for everyone. This week has consisted of everything from singing Christmas carols, having an imaginary conversation with a shop mannequin to designing a toga and thanking a traffic warden or bank manager. Such fun!