Diseases

We all have an idea of what perseverance means, but it was only relatively late in life that I really came to understand it.

Our North American culture often tells us that we should look, feel, and be successful. Yet any success I’ve had has come only after significant ordeals, and rarely did I ever feel successful along the way. But I’ve learned to persevere. This is an important point to hold on to: perseverance can be learned. We can grow in our ability to withstand difficult times. We can learn to push forward in the face of failure. We can develop the determination to keep slogging ahead until we reach that remarkable day when someone in our life points out how “lucky” we’ve been.

It’s funny how so many of those who work hard and simply stay in the game get “lucky.” Without a doubt, many successful people will tell you that they’ve experienced lots of luck in their journey. That’s because they stayed on the journey. They never quit. They learned to persevere.

I’ve been forced, specifically by Parkinson’s disease, to learn simplicity within perseverance. I’ve come to see that I can’t do it all, that at times I do need a hand, and that I certainly can’t control every outcome in life. Although that sounds like a lot of things I can’t do, I’ve learned that I can pay better attention, focus carefully, and end up accomplishing more. And as I find that there are things I can control, my character is deepened and I discover contentment.

Perseverance—a great big long word that’s often attached to difficulties. Yet if we learn its lessons our lives will be deeper, richer, and more vibrant than we ever imagined.

***

Jenna was ten when her father was diagnosed with Parkinson’s at the age of fifty. Unlike most ten-year-olds, she understood the gravity of the diagnosis—and set herself to doing something about this thing that had attacked her dad. When she learned that funds were needed to help people live well with the disease and to spur on research for a cure, she decided to help those who could help her dad. Five years later, “Jenna’s Toonies for Tulips” campaign is going strong; she’s raised more than $50,000 for Parkinson’s. (In Canada, a toonie is the two-dollar coin.)

Jenna is the daughter of a good friend of mine. I’m continually amazed and inspired by her work for Parkinson’s; she’s a constant reminder of the simplicity of what it is I want to do with my life. Like Jenna, I want to help. Whether it’s her dad or others like him, I want to see people lifted above the misery of their circumstances and inspired to live their best.

Hence this book. My greatest desire in writing it is to shine a light deep into people’s souls and convince them that there is a better way. Throughout the book I’ll provide practical steps, but my first goal is to help us see the bright reality of what can be. Then we can set ourselves on the course to that reality.

Later I’ll discuss how this journey is best traveled with others. I’ve learned that I can’t make it on my own; instead, I’ve experienced the best of life in community. The most important members of mine are my family. At the age of fifty-two I’m a husband of thirty-two years to my lovely wife, Sheryl. We have four incredible children (two boys, two girls), a beautiful daughter-in-law, and one of God’s greatest gifts to humankind, a granddaughter.

By profession, I am a nurse. I reside in that unique minority of males who make up roughly five percent of the profession. This is my chosen career, or at least the one I backed into. By passion, I am a writer, speaker, founder of a charity, entrepreneur, runner, and follower of Christ. These are the many important adjectives that describe who I am. Not listed in any particular order.

Then there’s that pesky little friend named Parkinson’s, which came into my life at a comparatively early age and which allows me to call myself patient, client, advocate, and fighter. I have a complex relationship with this “friend.” I love much of what Parkinson’s has brought me, while hating it and specifically its symptoms. It’s a disease that typically afflicts individuals over the age of sixty. Seldom is it a bother to those under fifty, with only about ten percent of the Parkinson’s population diagnosed before the mid-century mark. I was forty-six.

Parkinson’s is a progressive nerve disease of the brain that in time leads to a debilitation of a person’s motor functions. In other words, you can no longer control the movements of your body. The individual with Parkinson’s loses the important ability to produce a chemical called dopamine, leading to the classic symptoms of tremor, stiffness, slowness, and loss of balance. Along with myriad lesser-known evils referred to as “non-motor symptoms.”

Not all lottery wins are good things, and I’m not particularly happy about having won this one. But although my new best friend—whom I hate—has brought a certain level of grief into my life, it also played a direct role in my next lottery win.

At Sheryl’s urging, my son Tim Jr. and I applied to appear on The Amazing Race Canada. We had little expectation of hearing back. But Sheryl was certain we’d get an interview; they’ll be intrigued, she said, by my Parkinson’s diagnosis. Naturally, she was right.

Running that race has changed everything. It’s not only taught me valuable lessons in how to persevere but also allowed me the opportunity to pursue my passions.

Winning was incredible, of course. The trips, the prizes, the cash—it was all more exciting than words can describe. Yet my passions have never had much to do with things. As a nurse, it was always my desire to care for individuals. Early on, as a youth pastor, I wanted to help students find their way in life. Since then Sheryl and I have been involved with a number of charities and community organizations, and the race has given us the chance to pursue these activities with renewed vigor. It, and Parkinson’s, have led to many exciting adventures that I wouldn’t have otherwise thought possible, from the founding of our charity, U-Turn Parkinson’s, to the development of a speaking career that has taken me around the globe.

So in writing this book, I want to inspire you to view life through a new lens—to see the potentially negative as an opportunity to grow. Running the race was an adventure, but what I want to share are the challenges of running it with Parkinson’s and the lessons that taught me. To help you discover the joy that comes in persevering through hard times. I hope to encourage those who face this disease, to give them and their families the courage and strength to walk this very difficult path. But I also want to encourage those living with other hardships, whatever they may be. After all, the lessons on perseverance are universal, and can help the cancer patient and the corporate CEO alike.

Running the race with my eldest son was a wonderful experience. Many have asked about this aspect of the journey, and my answer is always the same: Tim Jr. made the perfect partner. He was fun and lighthearted, but also attentive to the needs of a father with Parkinson’s. He was patient with my weaknesses and carried us when needed with the strength that comes only from a strapping young man. I’m so proud to have had the chance to create these memories with my son. I can’t imagine having won this race without him.

It is my hope that you’ll be inspired by our story—and that, like my friend Jenna, you’ll grow in your ability to persevere. I hope it will give you what you need to run your race and win.

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.