Chapter One
Sharing a chapter of my book!
Let’s play!
You readers are the best. You did such a great job this summer with my Title Quest that I am sharing the first chapter of my book and listening to what you have to say about it!
For many reasons, Chapter One starts at the inception of my idea to run across America. But the book isn’t published yet, and there are many ways to present a story. It’s important to me to hear what you enjoy (or don’t) because you, dear reader, are a very important piece of publishing this story and how well it travels.
And I do want it to travel! Not only for me, but for the good it will do. It’s my parents’ legacy to me, yes. And it represents countless hours of my work, sure. But also, there is deep value here for a greater audience — a message of being open to the unexpected, taking action, creating purpose from pain, and finding a community.
My greatest lesson from building my charity and writing a book is that we are better together, a fact that pains me to discover (time and again) because of the plethora of years I’ve spent working to not need others. But I have found that with the right foundation, I can trust you, too. So, welcome to my writing staff!
Send me your suggestions if you feel excited to do so, or just stay and read if that’s your jam. What sentence(s) jump out at you? Is the beginning interesting or would you rather see a different part of the story first? What is unclear or too obvious (so it doesn’t need to be said)?
I am so interested in what you have to say. My deepest gratitude to you for reading my work and giving me your input, if you choose to do so. Either way, enjoy!
Chapter One - Many Scars
People ask why, at the age of 24, having never run a marathon before, I quit my job to run 125 consecutive marathons across America; why, with zero experience fundraising, I decided to raise half a million dollars for multiple sclerosis. I write it out in a single sentence and it all sounds so absurd. Especially when there were other, more ill-fitting factors, like the fact that I stumbled tipsy to bed many nights a week, that I had a dream job working on a cruise ship, that I relished a good joint on the beach, and that I had no intentions of doing anything different for the foreseeable future. I wasn't looking for a reason to rectify the pain I carried from my mother's disease with a pair of running shoes. I was looking for a free drink at the bar and what connections I needed to get a contract through Alaska. There is no simple answer, except to say that over the course of a three mile run in Barcelona it came to me that everything that had happened in my life led to this—that it had been waiting for me to come upon it all along. And for reasons that I still wonder about today, I trusted it. A lot can happen in three miles. I awoke before dawn, as I often did, to exercise and shake out the night before. Sweating it out was one of the ways I justified the drinks. I quieted my alarm and crept out of my bunk, the floor rocking ever so slightly. I was on the newest cruise ship on the seas, sailing into the port of Barcelona. I had boarded my first ship two years prior, a used and outdated one doing weekend trips from Los Angeles, and had since smiled my way up. My roommate would sleep later, so I slipped into the bathroom, a tight space four feet wide and long, and flipped on a fluorescent light that beamed above the mirror. I took inventory of my face—smudged mascara and some puffiness, but not too bad. I turned on the hot water and washed it all away. Once dressed in cotton shorts, running shoes and a grey Orthopedic Sports Medicine top I earned after graduating from a knee surgery, I pulled my pixie-cut hair into spike pigtails and brushed my teeth. I was on the second deck located in the hull of the ship—as low as one could go without dropping into the engine rooms and cargo spaces. This is where the crew slept. The ship I was working on was on a 14-day repeat tour of Europe at the tail end of the summer season churning waters from England, to Spain, to Italy, to Africa, then back again. As Sports Staff I helped manage the sports deck with a quaint group of co-workers. It was a coveted position, our office being outside on the top deck of the ship, 230-feet above the water. We had a panoramic view of the ocean and spent our hours in the open air doing things like belaying a forty-foot rock wall and teaching passengers how to surf on our simulated wave machine. I layered myself with sunblock but still tanned like a Texas cowboy, my slathering being no match to the hours I spent breathing in the salty, sea air. When in port, the sports deck closed down to push the passengers off the boat, and I got to do the same. "What'd you think we should do today?" we'd ask each other, "Want to head into Rome or go to that winery instead?" I went shopping in Southhampton and laid on the beaches of Nice. I toured the French Riviera by helicopter and ate authentic Italian pizza in Italy. I surfed the cobblestone roads of Portugal (quite literally on a wooden sled) and marveled at the Colosseum. I walked the streets of Finland, Ireland, the Canary Islands, Gibraltar. I was twenty-two years old when I boarded my first ship and I didn't look back for exactly 25 months and 23 days. Then, one morning in Barcelona I found reason to believe that the thing that drove me there would actually be the thing to bring me home. It was called multiple sclerosis, and it battered my life. Like raging waters beating on an earthen shore, it eroded pieces of my mother away from me one affliction at a time until the most of what remained were the lessons that I learned in its presence. That, and her essence. Of which, elegantly withheld the storms. She loved bacon and Jesus, not equally but almost, and watched Young and the Restless every day at 11am on CBS 58. Her breath smelled of sweet cinnamon gum and she was the kind of lady that wore pantyhose with both her dresses and pants. Standing at five foot nothing, she towered in a crowd, beaming with joy so abundant that her eyes smiled even when no one was looking. People gravitated towards her because of it. An optimist and an extrovert, she had a true interest in people and also loved them. "It happened again," my dad would chuckle. "I sat her on the bench outside the doctor's office and by the time I got back she had a new best friend. 'See ya later, Nancy!' I heard her say. What a piece of work." My mother sat next to him, grinning, while he recalled the story. She was my mother and what I knew a woman to be, so when parts of her began disappearing, I grieved their departure like a deep loss—portions of her that I adored, drifting away in the storm. I was eight when we gave up biking together. We had left the house, her and I, and with me riding at her side she lost her balance and skidded into a ditch. She then picked herself up, bruised and bloody, and we walked back home. At eleven it was water skiing - her trying relentlessly to "pop out of the water" as she always had, us watching from the speed boat cheering her on, then her becoming so fatigued that my father had to pull her into the boat from the water. At fourteen, I listened from the steps while her hands fumbled along the piano keys, trying to find that once graceful melody. It was gone. By the time I sailed upon the seas she had endured a thousand battles with MS and my concept of what a mother should be—helpful, capable, a caregiver—had died a thousand times too. My mom. Jill. Jillebean. Tiny and loving. Everyone adored her, especially my father. I came along third in their line of four wild offspring. My sister, April. Multiple sclerosis. Aaron. Ashley. Dawn—all born just a few years apart. "D for done," Mom would say after rattling off our names. She always had a cutesy way of spelling things out. "K-U-M as in merry-L-I-E-N as in nice" was our last name. My parents met at a bar in Milwaukee. My father was the audio tech for a band and my mother was a catching young blonde that came to a show. She lingered some time after the set, drinking a white zinfandel and sending glances his way - a handsome fella with shaggy brown hair and a chevron mustache. She wasn't bad to look at, he thought, and much to his surprise her beauty wasn't only skin deep. She listened intently with delighted eyes and touched his arm just so when he told a joke, throwing her head back in a laugh. "Would you like another glass?" he asked. She said “Yes, thank you.” with blushing cheeks. If he had asked her to marry him then, I imagine she would have said yes, being the romantic that she was. But my father was a procrastinator. The proposal materialized years later only at the possibility of losing her. Five years of courtship and no ring, so Jill walked away from the relationship leaving Keith right where she found him - with his buddies in a bar. "I sat on that bar stool looking around, wondering what the hell was my problem." He'd say later, telling the story. "I was never going to find a better gal than your mother." Keith left the bar that night and went straight to Jill's apartment, knocking on her door at two in the morning. "She opened the door and I said, 'Alright. We'll get married, but we're going to have a long engagement.'" Six months later they tied the knot. Dawn was a blessing surprise that came after my parents decided three kids was enough. "We'd have as many kids as we could if it had been up to us." My father would say. What he meant was that the multiple sclerosis put a timeline on their family planning - no one knew what my mom’s mobility and function would be like for the years ahead. The disease is unpredictable that way, attacking anyone at any time and completely unique in its progression. One could manage mild symptoms for the rest of their life, or end up in a wheelchair by the end of the year. The majority of those diagnosed fluctuate somewhere between those two, but the worst case scenario is terrifying. My mother lay still during her first MRI scan as best she could and hoped for a simple answer to the unexplainable sickness she felt—nausea, headaches, and dizziness for weeks on end. She thought it was the flu, but when it didn't go away, they scanned her brain. "Are you claustrophobic?" the machine tech asked. She shook her head no. "Do you have anything metallic in you? A heart stint? Pace maker? Any pumps or surgeries of any sort?" She was almost sure no, but now she wondered, did she? Could something have happened when she was younger and she wasn't told? No, no, there was nothing, she was sure. She shook her head no. "Do you have anything in your pockets? In your hair? Buckles or fastens of any sort? It's very important you have no metal objects in you or on you?" The questioning made her nervous. Her husband stood in the waiting room soothing their 18 month old child. What if she was wrong? What if there was something? No, she had it right. There was nothing. She shook her head no. The results came back, and what her family got was an answer of complex unknowns in the form of a demyelinating disease they had never heard of. The Greek name meant “Many Scars”, and the disease coursed through her central nervous system wreaking havoc on the pathways between the brain and the body. It was 1980 and science was only just beginning their research to understand the disease. With my father gone during the day at work, they took a risk by having three more children, not knowing if or when or how severely her health might decline. Who would take care of us - the kids and my mother? It was a belief in something higher - a trust in their path despite these challenging circumstances that allowed what’s happened since. Too much good to measure has come from that willingness. Later when I heard these stories, I wondered if the many scars were just hers or if it included the ones we endured as a family. Pain, numbness, fatigue and mental fog were a few of her regular symptoms. But the more troublesome ones, like immobility and bladder dysfunction, appeared and lingered at the most inconvenient times. I was fourteen when things turned bad.