Introduction

If a person’s brainstem, which is the transit area between the brain and the spinal cord, is damaged, the results can be quite devastating. Both sides of the body can be paralyzed, and speech, swallowing, and involuntary functions such as breathing can be affected. A cerebral stroke, a common type of stroke, damages one side of the brain and one side of the body and may affect speech and swallowing. A cerebral stroke often hinders the thinking processes of the brain, resulting in problems with finding the right words, personality changes, impaired memory, and a myriad of other processing problems in the brain. A brainstem stroke does not damage the brain, but leaves a cognitively normal person imprisoned inside a body with no movement. I found myself in this condition — aptly called “locked-in syndrome” — in May of 1999, at the age of forty-five.

Some people, early in my rehabilitation, mentioned that I should write a book about my experiences of being locked in. At first I gave it little thought, but the idea had been planted. Eventually, the book became a way for my brain to focus when all I could do was think (which was driving me crazy). I wrote it in my mind, not knowing if I would ever be able to physically write.

But why would anyone want to read my memoir? I felt so alone when I was locked in. It would have been comforting to hear from other brainstem stroke survivors about their experiences. I later found books on the subject, written by other survivors, but in one the survivor dies and in another the survivor has a second stroke. Perhaps I could write a book for my fellow stroke survivors that was more uplifting and hopeful.

If I was going to write a book for brainstem stroke survivors, I decided, I needed to be sincere and honest, even at the risk of embarrassing myself. I would never have publicly divulged such personal thoughts and details in a memoir without the focus of being sincere with my fellow survivors. I hope this book will be of some small comfort to a new survivor somewhere, sometime. If this book achieves that, then I will be happy.

But brainstem stroke survivors would be an extremely small target audience to write for, no matter how valuable the book was to them. I also needed to make the book interesting to average readers. Perhaps those readers would find it interesting to hear a doctor’s perspective on suddenly becoming a very dependent patient or to read about someone’s reaction to being locked inside a non-functioning body. I have included many stories about my patients throughout the book because these memories either gave me perspective in my time of hardship or taught me invaluable life lessons. Perhaps, I thought, mixing my narrative with these tales would pique the interest of those average readers.

I have tried to speak like a patient and not a doctor, but that may have been impossible at times, and for that I’m sorry.

I started typing with one finger, once I could move my left hand, so the actual writing of this book became a therapeutic secondary gain. I began during Christmas of 1999 and finished around Christmas of 2001.

I didn’t know much about publishing, nor did I have any expectation that a publishing company would want to publish the book, so I jumped at the chance when a local company, DreamCatcher Publishing, said they were interested. I initially thought a few local people who knew or had heard of me might want to read my memoir, but I never expected the number or variety of people who eventually read Locked In Locked Out.

Locked In Locked Out was first published in 2002, and since then many people have suggested that I write an update. I couldn’t imagine why I would: I didn’t have enough to say to warrant a whole new edition. I had no intention of revisiting Locked In Locked Out, and I hadn’t read a page of my memoir in eighteen years.

I submitted my third book, A Forgivable Indecision, digitally to a few publishers across Canada in 2018, and to my surprise Dundurn Press said they would be interested in publishing a new edition of my memoir if I’d revise it and add updates. I thought it might be a compelling project for me, so I agreed.

I revised a lot of the first-edition material. I hope I’ve improved the grammar and sentence structure. I’ve added a new patient story and chapters of new material at the end to update my life for readers. I’ve chosen to remove all the names of the physicians who cared for me. The first names of my patients and other health care professionals may or may not be correct; I intentionally did this to protect their privacy.

I could not have lived through the ordeal of being locked in without the love and caring of my wife. It was she who stayed by my side from day one. It was she I cried with. It was she who wiped my nose and suctioned out my trachea, yet gently wiped my brow. It was she who lifted my spirits with a simple smile, yet it was she who cajoled me into trying harder during my long months of rehabilitation. It was her love that made me realize what life is all about. It was her love that sustained me throughout this crisis. This book is a small product of that love. I love you, Jill, and this book is dedicated to you.