People With Disabilities

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.

Chapter 1: Can’t Wait

I knew I would write a book about my kid. Just not this book.

Rebecca Danielle Adam Prashaw was born April 22, 1993, in Sudbury, Ontario. Suzanne, her mom, spent only seventeen minutes in labour, and then, swoosh, Rebecca slid into life’s fast lane, never to put her foot on the brake.

As a record of her life and our relationship, I wrote my child a letter each year around her birthday. It took time to realize the letters might someday inspire a book. There was a story I wanted her to appreciate someday — hers, mine, ours.

I was a Catholic priest: a Roman Catholic priest who married when he was forty, becoming an instant stepdad to his wife’s three children, and a year later, a first-time dad to one child, that kid with the interesting name.

I worked as a journalist, too. I like to tell and write stories, and I recognized a story here. The letters, I thought, would bind my story to Rebecca’s story, so when the time was right, she would better understand the first chapters of her own journey. Or so I thought. That there was a book, too, was, well … more a dad’s hunch, a crazy intuition.

The working title for this book idea was Dear Rebecca: Love Letters from a Married Priest to His Daughter. I knew that it wouldn’t be on the Vatican’s blessed books list. That might work in my favour, I thought!

Those annual birthday letters chronicled the year’s events: celebrations, family trips to California and North Bay, camping, cottage visits, outdoor adventures, the pet dogs and rabbit, and a few mundane moments, too, that still somehow captured life’s wisdom. They also recount some madcap misadventures — I confess to a few missteps as a later-in-life dad on training wheels. Memo to Dad: venturing out in winter with your five-year-old onto the Castor River in Russell, Ontario, without first checking the ice is not a good idea; the unexpected polar bear dip to my waist qualifies as “top shelf” in the family legends.

The fifth-year birthday letter reports the epileptic seizures that first appeared out of nowhere at the breakfast table — dark, ominous clouds on an otherwise sunny horizon.

The eighth-year birthday letter tells of my own heartbreak over my separation from Suzanne, the breakup of a marriage that I did not want to end. Damn. Now there would be stories I’d prefer to omit from my book.

More dad letters follow in the next few years, charting Rebecca’s significant challenges in learning and at school, some clearly the consequences of the epilepsy. This would be the place where I would revisit a wickedly fun period of seven years when Rebecca played goalie for various girls’ hockey teams in Kanata, in the west end of Ottawa. Unknown to anyone at the time, what she learned in the goalie crease would tutor my kid for life’s adversities. Tales are emerging, too, of first jobs, hints of first loves, and more.

All in all, I recognized a story worth telling, a tale of a mischievous kid who was impossible to subdue or defeat, a kid wrapped in her parents’ and her family’s love; in hope, worry, and wonder.

But life, and my child, had other plans. Sickness, heartache, and unimaginable, enduring courage elbowed their way into the story. The book that I imagined writing is not the book I am writing. Adam emerged as the co-author.

Adam?

Our Rebecca.

Remember the girl born in 1993 with the boy’s name, Rebecca Danielle ADAM Prashaw? From very early on, Rebecca delighted in her boy’s name. She never tired of hearing the story her parents told of how Adam became part of her legal name. Adam, of course, wanted this story, this book, to be something that he would help to write.

Rebecca was the quintessential tomboy. There were early signs of Adam everywhere — the short hair, cut pageboy-style some years; the “dressed down” rough-and-tumble look. We saw it but didn’t see it. Rebecca was often thought to be a boy, as early on as age two. Rebecca’s mom recalls the tough negotiation she had with Rebecca to get her to wear a First Communion dress. She made a deal that Rebecca could take the dress off right after the pictures — like a flash, Rebecca was gone, and the dress disappeared for a day or two before her mother found it under her bed. Before she pulled the dress off, we snapped the First Communion photo, a nick on her face from the latest mishap and, of course, the short crop of hair.

As friends came into our lives and we were asked the inevitable “number of children” question, Suzanne would say, “I have two girls, a boy, and a wannabe.” In response to their inquisitive looks, she would add, “A girl who wants to be a boy.”

I recall an early, fun conversation with my daughter when I asked her if Dad could at least see his daughter in a dress three times in her life. Could we agree on that? That semi-serious negotiation resulted in Rebecca committing to wearing a dress on three occasions — her First Communion (which she did!), her wedding day, and, hell, I can’t even remember the third day she promised. It doesn’t matter. She reneged. And in the story this crazy kid would live, there actually was a wedding day. Well, sort of, but it was one minus the dress. That story will be told here, in this new book that Adam and I are writing.

Things are clearer in hindsight.

Unquestionably, from that day at Sudbury General Hospital in 1993, it was love at first sight. I was forty-one years old, a new dad, “over the moon” happy. I never saw or had a need to see “Daddy’s little girl” in Rebecca. Well, maybe a little, a nod to that “wearing a dress” negotiation! Indeed, I was punch-drunk ecstatic about being a dad of any child at all.

I guess the gender thing was there from the start. But it would take a lot of years, well into adolescence, for Adam to show up.

***

Adam made his official appearance in 2014, at twenty. His “coming out” was sandwiched between two major epilepsy surgeries in 2011 and 2015. We had called our kid Rebecca, or Becca, for short (and Bekkaa on Facebook), for almost twenty years, from birth through to 2014. I’ve sorted out my Adam/Rebecca story this way: the first happy, healthy childhood years, from birth to five (1993–1998); then the years during which the first series of smaller seizures occurred, from five to ten (1998–2003); then the more-or-less typical preteen and teen years, from ten to seventeen (2003–2011). The final part of the story takes place after the second series of bigger, more threatening seizures start in 2011. It is in the second, scarier epilepsy phase that Adam shows up, writing his own impressive new birth announcement. My co-author can’t wait to tell that story.

There are other stories to tell, too — visits to the Montreal Neurological Institute and Hospital (many call it the Neuro), getting her driver’s licence at sixteen, and a remarkable, life-changing conversation with her mother. Adam wants that in HIS book, too. “Her, she” is history. Adam will become my teacher on pronouns.

Somehow, bound and determined as he was to live a full, normal life, epilepsy and all, Adam, I sense, wanted to stay in the driver’s seat, even after he lost his licence because of his seizures. This is his life, his story. It was him behind the wheel, driving his parents crazy at times in a madcap, fast-lane race to adulthood and the independence he keenly craved. As he endured the epilepsy surgeries, as he chose to come out and come in to Adam, I marvelled at a new meaning of courage.

And through it all, in what was undoubtedly a hard life capped by one cruel catastrophe, he wove in a heap-load of fun. He did it with amazing friends, the steadfast support of family, and most of all abiding steadfastness, as Adam saw it all through to the end.

This is the story of Adam (Rebecca).

Dozens of Adam’s Facebook posts will help tell the story. I have not dared to change a single word. If it seems like Adam appears out of nowhere sometimes to jump into the conversation or start another conversation, well, that’s my son. If you wince at some of his posts, know that I winced first.

Soar, Adam, soar.