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A New Field in Mind

A New Field in Mind

A History of Interdisciplinarity in the Early Brain Sciences
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Radical Treatment

Radical Treatment

Wilder Penfield's Life in Neuroscience
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Locked In Locked Out

Locked In Locked Out

Surviving a Brainstem Stroke
also available: Paperback
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Randy Dickinson, CM
Chairperson, Premier’s Council on Disabilities

Locked in Locked Out is a compelling read. This book describes the personal journey of an adult who suddenly becomes very disabled and is forced to adapt his whole way of living. Shawn writes in a simple, heartfelt style. He manages to pique our intellectual curiosity and tug at our hearts as he tells his unvarnished truth.

Imagine that you are a very busy and popular family doctor with a large practice. You have a full life, with a loving wife, three children, and a dog. You enjoy walking in the woods and spending time outdoors at your cottage and doing chores there and around the house as a stress relief from your demanding work schedule.

You are very engaged with your patients and even do house calls for some of those who are unable to make it to the clinic or hospital for ongoing treatment. You love your job as a doctor.

Suddenly, you suffer a brainstem stroke, which leaves you paralyzed, unable to move your limbs, unable to walk, unable to speak, unable to breathe on your own, unable to swallow or eat, and unable to form facial expressions to indicate how you are feeling or what mood you are in. You are locked in.

This is the story of Dr. Shawn Jennings.

As a long-time disability advocate and a person who lives with a disability myself, I have read countless books and articles on the subject of disability and how people have reacted to their situation. Dr. Jennings has managed to put together a detailed and very personal description of his road to recovery, how he coped day by day with the dramatic adjustment in his personal situation, and how he has been able to function with his reality, going forward. He is also able, as he is a medically trained doctor, to convey exactly what happened to him physiologically and offer insight into the nature and purpose of the medical treatment that he received and rehabilitation process he underwent.

Reading this book, you become engrossed in Shawn’s reaction to the situation he finds himself in. He conveys so well his frustration about being unable to speak or even demonstrate his emotions through facial expressions, and the anguish he suffers because he is unable to communicate when he is in pain or being tormented by a housefly crawling on his face. All of the incredible difficulties associated with being locked in are shared here.

Shawn gives significant credit to the unconditional love and ongoing support of his wife, Jill, and the help of the rest of his family members as he struggled with the challenge of coping with his disability. Jill had worked with Shawn as the manager of his medical practice and was also a nurse herself. Perhaps this prepared her somewhat for being able to assume the role of caregiver and emotional bedrock for Shawn as he tried to deal with the transition from respected family doctor to a highly dependent patient learning to accommodate a serious disability.

In a certain way, this book is partially a love story; it is clear that this couple share an unconditional love that would not be suppressed by the physical changes Shawn experienced. Unfortunately, when a person becomes seriously disabled and requires significant support, it is not uncommon for couples to separate and divorce because of the stress and challenges that such a disability can create. I am happy to report that this was not the case with Jill and Shawn Jennings.

Shortly after receiving immediate medical intervention at the local hospital in Saint John, Shawn was transferred to a rehabilitation centre in Fredericton known as the Stan Cassidy Centre for Rehabilitation. This was where Shawn began the long and difficult journey to restoring, as much as possible, his ability to function. This was where the road to a life with a semblance of independence began.

Readers will be intrigued to follow the detailed synopsis of the rehabilitation program that Shawn went through to restore his ability to swallow and eat, to breathe unassisted, to communicate with others, and to regain some level of physical control over his body that would enable him to be more self-sufficient and to use a power wheelchair for mobility.

Shawn describes clearly the various interventions and therapies that were used in his rehabilitation and the moments of frustration and satisfaction he experienced during that process. Progress was slow and achieved only with a lot of hard work and effort on his part — and, as Shawn makes a point of noting, the help of his knowledgeable and compassionate therapists.

Locked In Locked Out is not only an outstanding description of a patient’s medical journey as he tries to recover from a brainstem stroke, but also a wonderful portrait of an ordinary man. In the book, we see Shawn’s intelligence, his insight into the people around him, his humanity, his love for his wife and family, and his outstanding sense of humour. Shawn really enjoys a laugh and is not at all averse to laughing at himself. I can vividly remember his hearty, rip-snorting laugh.

Given the fact that, because of his condition, Shawn was forced to live inside his head to an unusual degree, it is not surprising that the book includes meditation and introspection. Shawn offers his thoughts on spirituality and on how bodily injuries can affect the inner person. Although he is frank about his own feelings, Shawn never tries to persuade readers that his own observations and conclusions are the right ones; he is not someone who is interested in interfering with the spiritual beliefs of others.

I had the pleasure of working with Shawn for the many years that he served as an active board member of the Premier’s Council on Disabilities and with the New Brunswick Health Council. Shawn was also affiliated with Dalhousie Medical School and was a member of a national committee of physicians living with a disability, and he made a huge difference to their deliberations. He also helped lobby for a modern version of the Stan Cassidy Centre for Rehabilitation, which was built and opened in 2006.

I am very honoured to be asked by Shawn to write this foreword, and I consider myself very lucky to know him and to be able to call Shawn and Jill Jennings our friends.

Enjoy the book!

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The Power of Kindness

The Power of Kindness

Why Empathy Is Essential in Everyday Life
also available: eBook Hardcover
tagged : neuroscience
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