How Lupus Freed Me to Chase My Passion
Lupus has taken away much that I loved about life. I was once industrious and lived to tinker with machines. I could take what sat in my mind and build it, learning how along the way. I loved the outdoors and the satisfaction of hard work. I was tireless. Now I’m just tired. For all that it has taken, Lupus did open one precious door that I would have never dared to open on my own.
A Lifetime of Dreaming
Words are my favorite toys. Nothing is so satisfying as reading beautifully written prose except, perhaps, committing the act myself. I was the guy who endlessly wrote angsty poetry in high school. Who disdained greeting cards unless they were blank and ready for my own thoughts. Who started hand writing a novel (yet, of course, to be finished) while bored in class one day. I am also the guy who called himself a writer without ever earning a dime in the pursuit.
My mind has been awash with ideas and created worlds for 40 years but I lacked the courage to put them to any use. My pure, unadulterated love for writing lived in the shadows of my life forever giving way to more practical concerns. It wasn’t that taking that first step was frightening so much that it wasn’t considered at all. There was no room in my life for risk. I had a home to pay for, children to raise, and a wife who couldn’t do it all on just her income.
I still wrote, but it was an indulgence not a career. I would expound in lengthy Facebook posts that few would deign to read. TLDR could have been my Twitter handle. I would write, rewrite, and restart my novel every few years. I was once nearly 200 pages in when I lost it all to a dead hard drive. Today I consider it a blessing because I was well and truly stuck but the woe and frustration that day were a wonder to behold. And yes, it remains unfinished but someday…
A Lifetime of Loss
Lupus made itself known in my 36th year of life. I fought the fight and worked my 70 hour weeks until, at 49, I was forced to admit defeat. By then, lupus had stolen most everything else barring my immediate family. I mention this because so many with lupus lose even that, so I am compelled to acknowledge their loss and my luck.
I decided it was my time to shine and entered the world of freelance writing. I was excited, I was certain of my skill, and I was woefully unprepared. Skill at short stories and moving essays translates poorly to the writer sweat-shops of the entry level author. My arrogance was high and my skill set low. It only took one change in editors (and a nasty exchange of emails) to send me scurrying for the exit. It was then that Uber entered my life since sitting in a chair and turning a wheel was still within my capabilities.
I spent a year driving. When Uber slashed driver pay in half, I learned how to drive a school bus. If you ever want to learn way too much about your children drive a bus. Middle Schoolers are vile creatures under all that adorableness. I did this for nearly two years. Right up until I discovered that the reason I’d been feeling so weak the last two months was because I had a massive pulmonary embolism that should have killed me weeks ago. Once I recovered, the thought that I could have dropped dead in the middle of driving a bus full of children kept me from going back to work.
No Recourse But Freedom
I rode my unemployment out while trying to find an answer. I returned to Uber out of desperation and found it had returned to a profitable pursuit; mostly due to the reduction in gas prices. Then came COVID-19 and it all came crashing down. It was still possible to make money as an Uber driver, but it required a level of dedication and energy that lupus had long since removed from my body.
I had no means of earning a living. I tried delivering pizza, but my body failed me within a month. Who is willing to hire someone who can only work occasionally and then for fewer than five hours at a shot? Not a soul that’s who.
I was forced to take another stab at freelance writing. I reentered the fray but this time it was no mere hobby. If I failed to earn, we would soon be without heat or light or food. This tempered my reaction to professional criticism allowing me to recognize it as help rather than condemnation. I was forced to admit that you can be talented and smart with decent instincts while remaining unskilled and I began to seek the education I had never bothered to acquire.
My newfound humility has paid off. I’m a better writer now though I have a way to go. I am not a fan of the soulnessness of content creation, yet it forces me to pay attention to my word choices and to value brevity. I am slowly learning to end my love affair with the enchanting comma. It appears that commas are not meant to be reminders of when to breathe. Who knew? Not me.
Lupus took much but it also gave me no choice but to attempt my dream. For that, and that alone, I am grateful for this awful disease. Without it I would have remained an arrogant, half-assed non-writer. Now I’m a moderately humbled freelance writer with a shot at success. And a novel to finish.
