Medical

DRAFT

Preface

If the brainstem, which is a transit area between the brain and the spinal cord, is damaged, the results can be quite devastating for the individual. Both sides of the body can be paralyzed along with speech, swallowing, and involuntary functions such as respirations. A cerebral stroke is the common type of stroke that damages one side of the brain, one side of the body and may affect speech and swallowing. The cerebral stroke often affects the thinking processes of the brain resulting in problems with finding the right words to talk (expressive aphasia), personality changes, memory impairment, and a myriad of other brain processing problems. In brainstem stroke survivors, the brain hasn’t been damaged, leaving a normal cognitive person imprisoned inside a body with no movement. I found myself in this condition - aptly called the Locked In syndrome — in May of 1999.

Some people, early in my rehabilitation, mentioned that I should write a book about my experiences in being locked in. At first, I gave it little thought but the idea had seeded. 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 the book 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 words from other brainstem stroke survivors about their experiences. I later found books on the subject written by other survivors, but in one book the survivor dies and in another, they have a second stroke. Perhaps, I could write a book for my fellow stroke survivor that was more uplifting and hopeful.

If I was going to write a book for brainstem stroke survivors, 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 the number of brainstem stroke survivors would be an extremely small target audience to write for, no matter how valuable. I needed to make the book interesting to the average reader.

Perhaps, the average reader would find it interesting hearing a doctor’s perspective on suddenly becoming a very dependent patient or someone’s reaction to being locked inside a non-functioning body. I included many patient stories along the way because these memories had either given me perspective in my time of hardship or taught me invaluable life lessons; perhaps mixing the narrative with these tales would pique the interest of the average reader.

I 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 writing of this book became a therapeutic secondary gain. I began the Christmas of 1999 and finished around Christmas of 2001. I didn’t know much about publishing nor did I have any expectation that any publishing company would want to publish it, so I jumped at the chance when a local company (Dreamcatchers Publishing) said they were interested. I initially thought a few local people who knew or heard of me might be interested in reading my memoir, but I never expected the numbers or variety of people that eventually read Locked In Locked Out.

Locked In Locked Out was published in 2002 and since then, many people have suggested that I should write an update. I couldn’t imagine why I would: I didn’t have enough to say to warrant a whole new book. I had no intention of revisiting Locked In Locked Out and I’ve never 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 were interested in publishing a second edition of my memoir if I’d revise and add updates to it. I thought it might be an interesting 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 the reader. I’ve chosen to remove all the names of the physicians who cared for me. The first names of my patients and other healthcare 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 who I cried with. It was she who wiped my nose, suctioned out my trachea, yet gently wiped my brow. It was she who lifted my spirits by a simple smile, yet it was she who cajoled me into trying harder, in my long months of rehabilitation. It was her love that made me realize what life was all about. It was her love that sustained me throughout this crisis in my life. This book is a small product of that love. I love you, Jill, and this book is dedicated to you.