7 September 2017

Into the Gray Zone by Adrian Owen

I've never met Adrian Owen but I have met his infant son, so does that mean I have a strong enough connection to his research that I can give first-person accounts of the medical miracles he is performing? No? Ok, well I was first introduced to his research at the grad club pub at Western University by my ideal life coach Emily Nichols. At the time she was in her second year of the phd program in psychology and was everything I wished I was - cool, funny, brilliant, and fucking thin.

She was at the grad club with her department (the coolest department at Western, who love to drink and play music together) and they had a baby with them. His name was Jackson and I would soon learn that his dad was Adrian Owen, a brilliant neuroscientist working on a multimillion-dollar grant. His two-year-old son could SIGN a few communications ... we spent the entire night trying to get him to sign "more" to us. We called him the BMI Baby after the Brain and Mind Institute where Emily and Adrian Owen worked. His book was dedicated to Jackson and it nearly broke my heart.

...Before I go any further, I need to acknowledge that I am an actual moron so sorry in advance for butchering this man's fascinating research.

Owen spent decades working on a way to communicate with patients that were believed to be in a vegetative state. He spends a lot of the book grappling with what constitutes consciousness. He and his team come up with a strategy to show that these patients are consciously understanding commands and are capable of communicating through their minds. What they end up doing is having the patients imagine playing tennis for "yes" answers or imagine walking from room to room for "no" answers. The researchers can then see what area of the brain is lighting up depending on their answer.

The gates of hell are open night and day; smooth is the descent, and easy is the way; but to return, and view the cheerful skies, in this the task and mighty labour lies." - Virgil (Owen chooses a quotation to open each chapter)

Adrian Owen conducting research

OK, so this is a book that anyone can read and enjoy. You don't need to have any background in psychology or neuroscience to understand it. Owen defines the terms he uses and gives examples that make them easy for you to follow.  It's super encouraging to see a book written by an academic in a language that laypeople can understand, because to me the whole point of pursuing higher education is trying to improve the world or making sure your research is accessible. The book is also highly personal, which is one of my favourite aspects of Owen's writing.

The book begins with an epilogue that really sets the tone for the benefits of Owen's research. He talks about a patient who was declared vegetative, but after running some tests under Owen's command they found out that the patient could actually understand everything that was going on and had feeling as well. He mentions this terrifying stat: 15 to 20 per cent of patients labelled vegetative are actually conscious. This is when the book starts to read more like a horror story.

Early on he also acknowledges the very well-known case of Jean-Dominique Baube, a high-up magazine editor who suffered a stroke and ended up with "locked-in disorder." Baube's entire body was paralyzed except for his left eye which he could open and close. He famously wrote a memoir titled The Diving Bell and the Butterfly (2007) on his time spent in the hospital by blinking ~200,000 times to an assistant who transcribed for him.

a scene from the film The Diving Bell and the Butterfly (2007)
Contrary to what most of us might expect, a significant proportion of the patients (72 percent of those who responded) reported that they were happy. What's more, a longer time in a locked-in syndrome was correlated with how happy this group said they were!"

I was excited that Owen mentioned this book because it was actually the movie adaption of Baube's life that got me interested in linguistics. I remember thinking the ideas the speech pathologists came up with to allow him to communicate were brilliant. I also thought working with stroke patients would be endlessly fascinating. In the end, I lost interest in the clinical side of linguistics and went into research while pursuing my master's. I've now completely moved away from linguistics but I don't care because without that program, and by extension that movie/book, I would have never met THE LOVE OF MY LIFE, and co-founder of this blog, Meg.

I should also note that while I was surprised how happy locked-in patients can be, Meg and I have a very strict plan that if this were to happen to either of us we would "take care of it."

At the Unit, I found myself surrounded by psycholinguists, language experts, who knew what words we would need to produce brain activity that we could interpret with confidence. Carefully controlled words that were not too abstract, yet abstract enough to elicit a mental representation; not too familiar, but familiar enough that memories would be evoked related to the content of those words."

Meg and I with some scrap of paper we don't know a thing about while organizing Western's Interdisciplinary Student Symposium on Language Research
This book is endlessly fascinating not only because of the research Owen is working on, but also because it's so easy to discuss in a group. I've talked to my parents, boyfriend and friends about this research and all the different debates Owen's finding opens up. If these previously vegetative patients are now known to be conscious what does that mean for our health-care system, our right to die, philosophy and ethics, etc? Decision making for whether or not to "pull the plug" on these patients is no longer the responsibility of their family or spouses. This information gives the patient power.

One thing that really disturbed me is when Owen talks about how one of their vegetative patients miraculously becomes conscious and able to walk and talk. He goes to meet with her and interview her, and asks if there is anything she remembers from her time in the gray zone. She tells him that she remembers everything, she remembers the nurses and doctors not explaining to her what they were doing to her (e.g. needles, fluids, etc.) and she also remembers a "raging thirst." She wanted to communicate so badly that she wanted a drink of water but she couldn't. I am having anxiety sweats just imagining this.

Owen pushes these issues even further when they describe one of the first times they made contact with a patient. Their colleague in charge of ethics told them to ask the patient if he wanted to die. When you read this your own heart almost stops. Can you even imagine asking someone that? I won't tell you what happens because this scene alone would have me sprinting to Indigo.

It was a harrowing moment. We'd decided to push things further than we'd ever pushed them before, and now we were facing the possibility of pushing them in a new - and frankly terrifying - direction. What if he replied yes? What would we do? Even if he replied no, we could do nothing much but accept that at least we now knew what his wishes were."

Western U's beautiful campus

Owen does a great job of balancing his personal details with science, as well as giving you a background on how this research / topic was perceived over the years. He tells you about how the right to die passed along through the court system, and how things differed in America from other countries. He also talks a lot about the progression of technology for research and how that has played a major role in making life more comfortable for unconscious, conscious or partially-conscious patients.

The Schiavo case crystallized public awareness of the gray zone. It brought brain injury and science into the courtroom for the first time on a mass scale in an explosive frisson of science, law, philosophy, medicine, ethics, and religion. I realized that by investigating the gray zone, we were really investigating what it means to be alive. We were exploring the border between life and death. We were right at the nexus of trying to figure out the difference between a body and a person, the difference between a brain and a mind."

look how cool he is

Owen is also a very likable narrator. He's incredibly humble despite leading the way in research that will surely be adapted into a movie. He also seems like a complete nerd in the best way possible. His twitter handle is @comadork. He's a musician, a dedicated scientist, and also a film buff. One of my favourite parts of the book was when he talked about how they needed to choose a film for patients to watch while their brains were being scanned. He ends up describing Hitchcock as the best choice for brain scans:

The brain loves movies by Alfred Hitchcock. More so, it turns out, than many other movies. That's probably because they are constructed to make us think, fear, anticipate, expect, and react. Hitchcock's movies are designed to give viewers a shared conscious experience driven, in large part, by the recruitment of similar brain processes, as each viewer observes the events unfolding and seeks to understand their relevance, leading to an ongoing involvement in the plot. Hitchcock's suspense arises through understanding the plots' twists and turns, rather than through a series of fast-moving bangs and flashes that are the central components of many more modern (and I would say inferior) films. Those bang-and-flash movies also drive the brain, but not to the same extent as the subtle changes in direction - and misdirection - that are Hitchcock's hallmarks."

I would recommend literally anyone read this book. Owen is clear and concise, and makes all the scientific terminology incredibly easy to understand. It is also very cool to read about mind-blowing research that is taking place in CANADA. If you're from London, Ontario, or go to Western it is especially neat.

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