Chris Barili

I struggled and struggled to find a topic for my first blog post, but in the end, I knew what topic needed to be my initial foray into the world of blogging. I needed to address the elephant in the room.

I’ve been cautioned not to talk too much about this because it could hurt my writing career. A good friend and mentor told me that making this public could cause editors or publishers to see me as less of a long-term investment. True or not, they’ll would worry that I’ll die or become debilitated, unable to keep writing very long. I value this mentor’s opinion greatly, and truth be told, they’re probably right. This is a business, after all, and business investments need to pay off long-term. This would appear, to most people who don’t understand it well, to threaten my long-term viability as a writer. I get that. I do.

Thing is, though: they’re wrong. And I can prove it.

So, here we go: I have Parkinson’s Disease.

Parkinson’s is a degenerative neurological disease that causes movement issues, and sometimes dementia. Who else has it? Actor Michael J. Fox was diagnosed in 1991. Muhammad Ali, diagnosed 1986. Maurice White from Earth, Wind, and Fire, who just passed away this week, was diagnosed in 1992. Johnny Cash, George Wallace, Estelle Getty. Billy Graham. Charles Schultz. Janet Reno. Linda Rondstadt. The list goes on and on, and many of these people continued their careers long after being diagnosed. Some continue today. Oh yeah . . . Pope John Paul had it, too. Didn’t stop him from doing his job…err…calling.

The thing about Parkinson’s is that it’s widely misunderstood. First off, Parkinson’s in and of itself doesn’t kill. In fact, expected lifespan for Parkinson’s patients is not significantly shorter than for people without Parkinson’s. Complications from it–like pneumonia and falls–can kill, but are preventable, especially in younger years.

Second, while it is primarily associated with old age, PD can strike at almost any age. I was diagnosed in 2015, at age 49 (technically “young onset” Parkinson’s), and Michael J. Fox at age 30.

Third, while the infamous Parkinsonian tremor is the most widely known symptom, PD does more than just make you shaky. It can also cause muscle stiffness/rigidity, balance issues, lack of coordination, slow movement, freezing of movement, stooped posture and walk, swallowing difficulties, and speech problems. Later in life, memory issues and dementia may occur. But the thing is, every person suffers differently with PD. Some never have dementia, while others never lose their sense of balance. And while it always degenerates, it does so differently for different people, slow for some, fast for others. For some it stays unilateral, but for others it spreads to both sides of the body. For me, I have tremors, coordination issues, and some stiffness, all on my left side. Other things flare up with stress and fatigue, but nothing that has, so far, prevented me from working or writing. I still work 40 hours a week, AND live my life. Right now, it’s a giant pain in the ass more than anything else. I’m alive and consider myself a healthy fifty-year-old, on-track to growing old.

I take a medication that controls my tremor and gives me back my coordination. When the meds are “on,” I can type like I used to, hammering out 1000 words in 30 minutes on a good day. I wrote my novella “Hell’s Marshal” completely by typing, but wrote half my MFA thesis using dictation software. So even when my meds are “off,” I have a means to keep putting words on paper. As long as I get my sleep and don’t get too stressed out, most people don’t even notice my symptoms.

I am still very active (exercise helps a LOT, by the way, in controlling symptoms). I mountain bike every chance I get, and not just on flat trails–on actual mountains, rocks, and so on. I do Shotokan Karate, lift weights, and occasionally even do some Insanity workouts. And I write. Every day I do something writing related. So far, PD hasn’t stopped me from writing, and if I have a say, it never will.

One of my Anti-Parkinson’s Weapons

Let me put it in perspective: my symptoms started showing up about the time I started my MFA studies in 2013. Since then, I’ve written 330,000 words. That’s two novels, two novellas, a novelette, and dozens of short and flash stories. I’m 6000 words into “Hell’s Sentinel,” another novella, and am in various stages of planning for other stories, too. I am an active, prolific writer, with no plans to stop or slow down for years and years. It’s not like I have a choice, like I can just stop writing and walk away from it. It’s part of me, burned into my DNA. Stopping would be letting part of me die, and that’s not going to happen. Writing is one of the fronts on which I fight this war, one of the defensive lines I will not, CANNOT, surrender. For me, writing is living, and I don’t plan on dying anytime soon.

So if someone out there seriously thinks I’m a poor long-term investment because of my Parkinson’s, they’re not paying attention. Between medications, therapy, exercise, and even a new surgical technique–not to mention tons of new things on the horizon–I plan to fend off this disease for as long as possible, and to keep writing until the day I die. And that’s not going to be anytime soon, damn it.

If you want to learn more about Parkinson’s Disease, check out the links below.

National Parkinson’s Foundation

Michael J. Fox Foundation

Until next time:

“He tests his fate: He lives to write, writes to live.”
— Bernard Malamud, The Tennants