Exclusive preview of Do Tough Introduction and Chapter 1

Editor's Note: We are thrilled to publish this sneak preview of Maria Parker's book, Do Tough, for the Cruzbike community. The Cruzbike Community is part of this story! The book will be available on Amazon Kindle beginning June 13. You can pre-order the book now here and it will be delivered instantly to your Kindle account on June 13. The book's royalties go straight to 3000 Miles to a Cure to fund brain cancer research.

Introduction

It was my children who first observed that I have a special gift for doing things that other people find difficult or disgusting. They call it my superpower. There is no vomit I won’t clean up, no dirty diaper I won’t change, nothing gross or hard in a non-dangerous way that I won’t wade into and take care of. More than that, as an adult, I have often enjoyed tough physical challenges like running marathons and doing triathlons.

When I was a little girl, I measured how hard something was by comparing it to going to the dentist. Is it as bad as having my teeth cleaned or getting a cavity filled? I would ask myself, as that had been the most unpleasant thing in my life at that point. After I married and had children, I compared tough things to childbirth. Nothing in my life had been as hard as laboring and delivering a baby, and then staying up all night with a newborn. Eventually, people I loved started dying. When I was 49 years old, Jenny, my older sister, Irish twin, confidant, and friend, the one who had always shared my ups and downs, consoled and advised me, was diagnosed with brain cancer. That was a completely different kind of tough.

 In reality, I’m probably not tougher than anyone reading this book. However, I have thought a lot about how people get through tough things. Wrestling coach Tom Ryan, in his book Chosen Suffering, talks about the contrast between chosen suffering and unchosen suffering. He writes, “Chosen suffering I understood…because its roots were deeply embedded in my life. Chosen suffering by so many led us to this national title. Unchosen suffering is different. It's the ever-present reminder that we are here to manage the painful things we didn't cause but happen to us and those we love.”

 Whether you choose to do something difficult or something difficult happens to you, you need a set of skills to deal with that hardship or challenge. This book is about how to recognize and grow some of those skills.

 There is nothing new here, just my observations about how I’ve managed two of my most difficult chosen and unchosen sufferings: completing Race Across America and dealing with the illness and death of my sister.

 One of my greatest desires is to encourage. I hope this book encourages you.

Chapter 1: Before Tough

Two Kinds of Tough

My sister Jenny and I were born less than a year apart, she in early 1962 and I just 10 months later. We’re part of a brood of six children: five girls born in less than five years and a boy who arrived a couple of years later. My mom says she has little recollection of those early days, other than that she had very little help. My oldest sister Kathy, less than two years older than me, started helping as soon as she could walk. We all were expected to work around the house and take care of one another.

 My sisters and I were particularly close until adolescence, when the inevitable hormone cocktail of five pre-teen and teenage girls turned us into a seething and irritable mess. I remember fighting over clothing. We would lend one another a favorite shirt or pair of jeans then have screaming matches when items of clothing disappeared or were damaged. I once put tape down the middle of the bedroom Jenny and I shared to try to ward off her sloppiness from my side of the room. We also bickered over friends, space in the car, who was driving, who was doing the dishes, and just about anything else you can imagine five girls living together might squabble over. Sometimes it got violent, as we weren’t above hitting, biting, and punching. Once when our mother took us all to a mall for school clothes shopping, there was a pretty saleswoman from Tampax giving out sample boxes of tampons. When she saw my mother surrounded by the five of us, she had a moment of compassion, or perhaps expedience, and gathered up all the sample boxes and gave us her whole supply.

 Throughout much of this hormonally turbulent time, I shared a room with Jenny. We quarreled frequently, in part because we were constitutionally very different. I was tidy, studious, uncoordinated, self righteous, and tried very hard to please everyone. Jenny was emotional, loving, a flexible gymnast and dancer, and was always getting in trouble when her emotions boiled over. When we were five and four she asked me if I would be her best friend forever. I  love all my siblings dearly, but Jenny and I had a special bond. I didn’t understand her, but wanted to be closer to the bubbling pot of love and passion that she was.

 Fast forward 20 years. Jenny and I were both married with children and spent lots of time on the phone sharing our joys and frustrations with motherhood and marriage. Jenny’s faith grew and became a bedrock of her life. Her spirituality gave her peace and joy, and her passion and love for God was incredibly magnetic.

In the meantime, even if my four children brought me deep joy, the day-to-day care of them left me wanting some way to prove myself beyond the thankless and endless diapers, meals, wiping noses, soothing hurts, organizing toys, and constant cleaning that made up my life. I’d graduated from college with a degree in biology, and although caring for my family was spiritually and psychologically tough, I could feel my brain and body getting softer. No one, other than my husband, saw or particularly cared about how I was doing as a parent. I needed a personal challenge.

 I started rising early to run before the children awoke. Soon, I met other runners and extended a mile or two to five or six miles. My dear friend and sister-in-law Kelly (who you will hear about often!) was a Division 1 swimmer, Olympic trials qualifier, and eventually a D1 head coach. She encouraged me to enter my first 5K.

 I’ll never forget how nervous I was at the starting line of that first race. I was in my mid-thirties and had never participated in any athletic competition before. In my inexperience, I sprinted from the starting line and was soon gasping for breath. My frightened gut wondered what the heck was going on and I nearly pooped in my pants. Somehow I made it to the finish line and gulped up the encouragement from Kelly and the rest of my family. My life as an athlete had begun!

 I tell people that I came down with “adult onset athletics.” Within a couple of years I was completing half marathons and marathons. Then eventually, like many runners, I wanted to do more. I decided to try triathlons, and that was when I met the bicycle. That encounter changed my life. I’d ridden bikes as a child, but had not done much cycling since.  When I began training for that portion of the triathlon, I found I loved moving swiftly with the wind in my face, and the feeling of freedom I experienced when riding.

 I was a decent cyclist, but always uncomfortable on a traditional bicycle. Over time, it hurt my neck, wrists, and shoulders. My fingers went numb, as did my perineum. It was no fun, but I figured it was just part of the sport. In training for triathlons, I often spent Saturday mornings on long bike rides. I hoped I could get my husband, Jim, to join me for those rides. He agreed and dusted off his bike, but after a couple of outings he refused to continue. He was not at all tolerant of the bike’s discomforts. But being the clever, creative, and optimistic guy that he was (and still is), he decided to find a better way.

 Jim spent six months doing research to try to find a better bike. After hours and hours spent nightly on his computer, he announced that he wanted to ride a recumbent bike.

 A recumbent bike is an ergonomic and comfortable style of bicycle that allows the rider to sit in a seat instead of on a saddle. You pedal in front of you rather than beneath. Traditional bikes were inspired by horse-riding since they were invented when horses were the main form of transportation, hence the saddle-type seat. Recumbent bikes, on the other hand, were invented later during a wildly creative time in bicycle design. Unfortunately, in 1934* they were outlawed for competition by the Union Cycliste Internationale (UCI), the international governing body of bicycle racing. Their aerodynamic advantage seemed unfair to some at that time, and the bicycle as we know it today was codified as the form legal for bike racing. Because of this, recumbents were forgotten for several decades. In the 1960s, interest in ergonomics coincidentally brought about a renewed interest in recumbent bikes. These types of cycles put no pressure on your neck, shoulders, or wrists—and none on your crotch! They also tend to be more aerodynamic, so it takes less energy to ride them, particularly at faster speeds.

 After all that research, Jim discovered Cruzbike, a kit that could transform a mountain bike into a front-wheel-drive recumbent bike. The Cruzbike kit was built in a small shop in Australia by John Tolhurst, the brilliant founder of the brand. Jim ordered one, had it built it up onto a cheap Y-frame mountain bike, and started riding with me. He was delighted. And though at first I was skeptical of the funny-looking bike, soon I, too, wanted to be as comfortable as he was. So I ordered my own kit.

 Recumbent bikes were not allowed in triathlons due to UCI rules, still I was thrilled to ride without any discomfort. The pure pleasure of cycling without any of the pain of a traditional bike had us riding far and wide and extending our rides from 10-15 miles to up to 100. I remember the day we pedaled from our home in North Carolina to the South Carolina border and back. We thought our Cruzbikes were so amazing that everyone should have one. Jim came to me one day and said, “Let’s contact John Tolhurst and see if he wants some investors.” He wanted the bikes to be sold as complete bikes, rather than kits. They would be beautiful, fast, and comfortable—and I agreed completely. Riding our Cruzbikes was delightful and had gotten us both into great shape, so we figured everyone else would want one, too.

 Jim contacted John and we eventually invested in and then bought the company. Riding a Cruzbike became part of my newfound identity as an athlete, and managing the company became my job as my children grew older and started to leave home. Soon I wanted to compete on my Cruzbike. Despite the fact that the bikes were banned from traditional races, the World Ultracycling Association (WUCA) allowed and had divisions for all sorts of bicycles. Ultracycling events are events of 100 miles or longer. With Jim and Kelly always encouraging, I began competing and breaking ultracycling records on my Cruzbike. Most of my family, including Jenny, didn't understand my crazy obsession with racing, especially long bike races. Still, Jenny was always proud of me and continued to gently remind me of what was truly important: faith and family.

 In the fall of 2012, Jenny complained of headaches and feeling foggy and depressed for the previous few months. Her physician  suggested she have an MRI. Jim is a radiologist so he read her MRI. His face was gray when he looked up from the scan from his home radiology station. “This is very bad, Maria,” he whispered before showing me the massive tumor in Jenny’s brain. Even to untrained eyes, it was obvious that there was a huge, sinister growth taking up a full quarter of her skull. It was Glioblastoma Multiforme (GBM), a very lethal form of brain cancer. I knew exactly what that meant.

Jim could do little to console me as I ran around our living room in circles sobbing and moaning. I couldn’t imagine a future without Jenny in it. We’d looked forward to spending more time with each other as our children grew and left home. The previous year the two of us had traveled to Italy for a week, exploring, laughing, eating, and sharing our deepest emotions.

 Jenny’s husband, Ray, quickly learned the prognosis from her doctor, but Jenny was too disoriented to take it in.

 The ensuing week was a haze of fear and grief. I had trouble sleeping. When I dozed off, I’d jerk awake to the leaden realization of Jenny’s prognosis. We searched for something promising in research and possible treatments—there was a lot of information, but not a lot of hope. Jim and I drove to Jenny’s home and I wrapped my arms around her while Ray explained the diagnosis again and Jim tried to help all of us understand it. Brain surgery, followed by as yet unknown treatment and almost sure death in less than three years. She seemed to understand but showed very little emotion. I later learned that her emotions had been dampened by the placement of the tumor.

 Jim and I drove home. The next day I had the sorrowful job of telling our parents that we’d likely be losing our precious Jenny. As an adult, she’d formed a special closeness with my mom and dad. They came to admire her deep devotion to God and, as she’d learned to control her passion and emotions, she’d poured her generous love and affection onto them. She was a wonderful hostess and cook who frequently welcomed them in her home.

 During the next few weeks, I seethed with fury and impotence. I desperately needed to fight back, to do something physically and emotionally strenuous and significant to battle for Jenny.  The hopelessness of brain cancer and the lack of progress in finding treatments seemed absurd and was deeply frustrating. We brought a stack of what looked like promising treatments for brain cancer to her doctors and they patiently pointed out that all of the studies had been done on mice. Taking a potential treatment from mice to people is extremely time-consuming, and even more important, costs millions. The space between promising treatments in labs to effective treatments in humans is often referred to as “the valley of death.”

 I was not alone. Jenny’s children, my children, Jim, and friends who loved Jenny also needed an outlet for their frustration and sorrow. In late 2012, we formed the non-profit 3000 Miles to a Cure to raise money for desperately needed research in the hopes that it might help Jenny and others impacted by brain cancer. The name came from our first fundraiser, a 3000-mile bike race called Race Across America (RAAM), and one of the toughest athletic events in the world. I planned to compete in RAAM in 2013.

 Brain cancer and a 3000-mile bike race are by no means equivalent, but both are very tough.  When people asked me how I was able to finish RAAM, I thought a lot about how I’d gotten through it. I also reflected on Jenny’s brain cancer journey and the grace with which she and her family managed their unchosen suffering.

 About Race Across America

 Race Across America (RAAM) is a cross-country bicycle race that was first held in 1982. Competitors cross three mountain ranges, the desert, and 12 states, riding over 3000 miles and climbing 170,000 vertical feet.

 Unlike famous bicycle races like the Tour De France where racers rest every evening, RAAM is a single stage race. Once the starting gun goes off in Oceanside, California, the first person to get to Annapolis, Maryland wins. This means that any time you're not on your bike moving forward is time lost.. Most people who race RAAM average less than four hours of sleep a night, and as a result, become a little unhinged. (This I know from experience!) Imagine spending eleven days outside, constantly doing intense cardiovascular exercise 21 or more hours per day.

 As if the physical challenge weren’t enough, everyone who gets to the RAAM starting line has to spend a small fortune—and the race entry fee of several thousand dollars is the least of it.  Racers must travel between the starting line and finish line with all their personal gear and a spare bike or two. Then there are the travel expenses for a crew of eight or more people, who will accompany the rider from start to finish. Lodging and food for the team over the 10 days to two weeks it takes to complete the event must be arranged and there are usually at least two vehicles following or leapfrogging the rider that require gas, communications systems, special lights, and signage. In 2013, it was not unusual to spend $20,000 to participate in RAAM, and often a lot more. It's a massive operation. The racer also has to qualify in advance by completing 400 miles on their bike in under 24 hours. 

 Qualifying for RAAM at the Sebring Florida 24-hour bike race in February 2013 was grueling, but I completed 479 miles in 24 hours. Hence, I felt confident that I was well-prepared to race across America. However, the sobering facts are that 50 percent of people who get to the starting line of RAAM do not finish, and every one of those people had to qualify first and invest a lot of money. I should have felt more foreboding than I did knowing those statistics. But I was determined to raise as much money as I could—my goal was $1 million—to fund research to save Jenny and others. Again, what I already knew about GBM should have given me pause.

 About Glioblastoma Multiforme

Sadly, we were already familiar with GBM when Jenny’s tumor was discovered. Despite the fact that there is no scientific evidence for a genetic or familial component, my father’s brother, Uncle Eddie, had died of this cancer just a few years earlier. He died in the hospital days after the initial surgery to remove some of the tumor. They call this a “de-bulking” surgery because the aim is just to extract as much of the tumor as they can without doing additional harm to the patient’s brain. It’s impossible to remove all the tumor because it is made up of long nerve cells that invisibly penetrate all parts of the brain. The de-bulking surgery is done to relieve pressure in the brain and hopefully improve symptoms and slow down progression. Nearly everyone diagnosed with GBM starts their treatment with brain surgery.

 The statistics on Glioblastoma are depressing.

 According to Braintumor.org:

1. Glioblastoma (or GBM) is one of the most complex, deadly, and treatment-resistant cancers.
2. More than 13,000 Americans are expected to receive a GBM diagnosis in the next year.
3. The five-year survival rate for GBM patients is only 6.8 percent, and the average length of survival is estimated to be only 12 to 18 months.
4. Survival rates and mortality statistics for GBM have been virtually unchanged for decades. Despite first being identified in scientific literature in the 1920s, there have only been four drugs and one device ever approved by the FDA for the treatment of GBM.
5. None of these treatments have succeeded in significantly extending patient lives beyond a few extra months.
6. In addition to being life-threatening, GBM—and its harsh treatments—inflict devastation upon the brain, which controls cognition, mood, behavior, and every function of every organ and body part.

 These were the challenges we took on. Our unchosen suffering involved a life and personality-altering cancer with extremely low odds of survival, and our chosen challenge, a brutal cross-country bicycle race on a quest for money for research.

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Want to read more? Do Tough launches June 13, 2023 with the Kindle Edition. All royalties go straight to 3000 Miles to a Cure to fund brain cancer research. Find out more about the book at DoTough.com