To discover my mission, I had to come to terms with my illness. I had to accept that acceptance was not surrender.
My mission is simple, pure. I started with lofty and ambitious goals then struggled with a cycle of incredible success then stagnation. My disappointment intensified, and I nearly retreated to a comfortable place of defeat. I struggled and eventually found conviction in a simplified and pragmatic goal. But before I could get there, I had to come terms with the nature of my illness and disability.
To endure as an author, I had to simplify my mission: Just finish the story!
At the age of 18, cancer defined my life. I know you’ve probably heard stories about not letting illness or tragedy define someone, and there’s some wisdom to that. But in reality, we don’t have much control over the adversity we face, and fighting this adversity carves and shapes who we are. Cancer didn’t define me. My battle against it did. My life is a constant battle to reclaim control and progress against disability and illness.
My life is a constant battle to reclaim control and progress against disability and illness.
It took the tumor less than an hour to emerge beneath my ear. That night, I took a late shower and shaved, paying special attention to my cheeks. The surface felt flat when I ran a razor across my skin. An hour later, I sat back to watch my favorite episode of Star Trek: Deep Space Nine. Garak, played by Andrew J. Robinson–a Cardassian spy who poses as an exiled tailor on the station–is my favorite character from the franchise, and I watched the episode The Die is Cast. I rubbed my fingers along my cheek to make sure I’d given myself a clean shaven and it surprised me to discover a golf ball had grown from nothing.
After several pathology labs struggled to identify the cells from the tumor, the Armed Forces Institute discovered two different lymphomas in the malignancy: Large Cell Lymphoma and Hodgkins Disease. Hodgkins wouldn’t have been so bad but Large Cell kills fast. They called my rare cell type, Composite Lymphoma. I was the tenth person in recorded medical history to have it. None of the other survived it. My only chance was a punitive and punishing course of heavy CHOP (chemotherapy) then a daily treatment of radiation on the face, neck and chest. Doctor Giles McKenna at the Hospital of the University of Pennsylvania felt he had to be honest with me. He had designed the treatment especially for my case, and he told me it was a long shot. He said I probably wouldn’t survive the treatment, and if I did, the level would destroy my nervous system, leaving me in constant pain along with damaging my heart, lungs and other organs. And if I made it, I’d eventually develop other cancers from the treatment.
Doctor Mckenna, radiation oncologist at Penn, felt he had to be honest with me.
But by some wild accident of math, I made it through. No one expected remission to last. But I’ve lasted, clinging on. And it’s as he described. I struggle with constant pain and neurological disfunction along with organ damage, and I’ve dealt with other cancers over the years. The treatment for the lymphoma disabled me, and I fight for quality of life every day.
I’m sure you’ve heard someone who is chronically ill reply, when asked how things are: “Good and bad days.” This is a reality I have come to accept. My life is a lottery. Some days I wake up and I’m able through medications and routines to gain some control of the day. I can define my goals for that day and I can spend my time pursuing them. The pain and disability don’t abate and still hinder me, but I’m able to adapt and make some progress.
The day I married Allison Ledbetter and joined the Scharpf-Ledbetter clan changed my life. I owe everything to my wife and her family. They saved my life.
Bad days. And then there are days that wreck me. I wake up with such intense symptoms such as pain, fatigue, weakness, nausea, cardiac issues, neurological disfunction that the potential of that day is spent just trying to get those intense symptoms under control. That entire day is spent just existing and struggling to regain some equilibrium back over my damaged body. And it isn’t limited to just one day. It can take several days to get to a place where I can function and progress on my goals again. The suffering can be intense.
I have come to accept that I can do nothing to eliminate the bad days from my life. They are part of what I call ‘the cost’. This is my reality. I spent twenty years trying to get to a place where I had returned my body to what it was before the lymphoma. I wasted so much time, energy and frustration on this goal. This goal was set for me, and I always felt like I was failing if I ever gave up on this goal, failing the people who defined this goal for me. I was always trying to go back, and it took me a long time in futility to realize I could only move forward. I had to understand that accepting my limitations was not surrender.
I had to understand that accepting my limitations was not surrender.
It was practical. Things were never going to be like what they were before, and instead of focusing on turning back the clock, I should have been learning new ways to work with my limitations to accomplish my goals.
A reading of my iconic story, The Last Elf, at the KGB Club in New York City.
Writers start off their careers without any practical understanding of how publishing works. Sell a major book to a major publisher. Land a movie deal. Make a million dollars. Become the next Stephen King. They usually have no idea how to format a manuscript or where even to get published. I started by reading books on getting published, learned how to write a cover letter, how to submit a proper and respectful manuscript (back during the last days of snail mail and post) and eventually I developed a protocol. I had typical goals: write a marketable book, sell a bunch of copies, make some money, build a large readership. And that’s when I learned a terrible truth in writing: no matter how good your book is, no one will read it if you don’t know how to market it. I beat my head against marketing. I couldn’t make it work. Eventually, my passion dwindled. My disappointment and frustration overwhelmed me. Then three high profile book deals fell apart as several established publishers failed in a single month back in 2015. It killed me. I nearly didn’t recover. I went into my kitchen and started baking. But I didn’t want to give up. This was what I was.
No matter how good your book is, no one will read it if you don’t know how to market it.
And it was getting harder. I struggled with the neuropathy. The pain got worse. My oncologists caught nascent tumors, and I suffered constant infections including a dangerous pneumonia then an infection of several organs that ended with surgery in the summer of 2021. I kept writing. I focused on stories that challenged me. I always had a project that had been solicited, and I accumulated some good credits. But I’d lost the passion. I failed through success. It’s easy for an author to fool themselves through acceptances and publications.
In 2021, my frustration forced me to change my way of thinking. I simplified. Physical therapy stopped being about the longterm. I focused on daily exercise. I focused on what was in front of me. I struggled with my disability, and it challenged me to function every day. I would set lofty goals then be crushed by plans–a cycle that eventually paralyzed me. So, like many other goals, I changed my perspective on writing. Instead of planning years of novels and success, I stopped thinking about the publishing stage. Instead of focusing on the acceptance and publication, I changed my goal to just writing and finishing a quality manuscript that challenged me and improved my craft. I’d worry about publication later. I still targeted submission calls or accepted solicitations, but I focused on finishing the story. Just finish the story, Fox. The rest isn’t important.
And that’s my primary goal, my rai·son d’être. Nothing else. I live for one reason:
JUST FINISH THE STORY.
The rest comes later and isn’t as important.
I do have some personal goals that guide as a person, though few as potent as the main one.
GOALS
1. To become a successful and well-read author.
2. To study and practice my craft at a high and refined level.
3. To continue to learn and appreciate life through study and practice and always be looking to improve, for example, tweaking my cookie recipe or learning how to best grow basil from seed.
4. To be the best husband, partner and one day parent I can be.
