When Your Face Is on Fire: Creating Art Through Trigeminal Neuralgia
Just out of surgery. My husband was on a 48 hour layover to be with me when traveling for work.
Imagine being stabbed in the face with a knife that’s on fire. Not once. Not twice. But over 40 times a day.
That’s how I describe trigeminal neuralgia, a rare nerve disorder that made it nearly impossible to function, let alone live a creative life.
Before the pain took over nine years ago, I was a tattoo artist. I loved the work. From the atmosphere of Calaveras, the connection with clients, making art on living skin to my coworkers making me laugh until I cried. I loved my job. Then one day, in the middle of a session, it happened. My face lit up with a pain I can only describe as violent. I couldn’t hide it. I had to excuse myself and eventually, I had to leave that career entirely.
At its worst, trigeminal neuralgia ruled everything. The smallest things like wind, speaking, eating, brushing my teeth, the vibration of walking across a room could all trigger an episode. I was trapped inside my own skull. Food became a battle. Movement, a gamble. Even my ability to create was gone; I couldn’t paint through the pain.
At first I thought it was dental pain and oh boy I had a lot of unnecessary dental work in that time finally resulting in the extraction of a totally health tooth. At that point the dentist told me it could not be my teeth that were all in great condition that I needed to see a neurologist about the possibility of trigeminal neuralgia. My insurance being what it was I had to go see my primary care provider first. That provider told me to suck on sour candies for a month and come back as she could not believe what me dentist told me… this only made things worse. At that point I booked with another provider and got my referral to neurology. The first neurologist I saw fed my different nerve medication over the next six months ALL of those medications I ended up being allergic to. She also sent me for MRIs but the imaging didn’t really show anything. At some point she moved and my insurance sent me to another neurologist. Bless this second neurologist instead of trying to feed me more medication that was not working or was trying to kill me he actually listened to me and sent me to talk to a neurosurgeon. In steps Dr. Amadio my hero. Dr. Amadio first sent me to get an MRI at an imaging facility that could produce better images than the hospital I had been going to. There they clearly saw my artery was knuckled into that nerve causing all the pain. My neurosurgeon was disappointed in my prior neurologist and primary for not sending me to the correct MRI facility but in the end he saved me. The first step back toward myself was a microvascular decompression surgery. It brought the pain down from over 40 episodes a day to “only” seven. That’s not what most people would call livable but when you’ve lived in a firestorm, even smoke feels like mercy.
My neurosurgeon wasn’t satisfied, and I wasn’t either. That’s when we turned to Gamma Knife radiation. The day of the procedure was brutal I was in pain, vomiting, my vision blurry until I couldn’t open my eyes. But within 24 hours, things began to calm. Over the next three months, the daily stabs faded into the past.
The cost? I don’t feel the left side of my face anymore. I have to be careful when I eat. If I look down, I tend to drool, not the most glamorous side effect, but one of the last lingering reminders of what I’ve survived. Also talking to my neurosurgeon I learned I probably would have suffered from trigeminal neuralgia around the time I hit 60 but the stress of losing primary custody of my kids through a nasty divorce caused the pain to hit 30 years sooner that it should have. That train wreck is a story for another time.
Once the episodes subsided, I slowly returned to painting. In the quiet of recovery, art became not just a way to pass time, but a way to stay sane. It was one of the only things that didn’t trigger the pain. I could sit still, hold a brush, and build something from color and water and memory. I painted the American West. the grit, the struggle, the stubborn beauty of it. It felt like painting myself back into the world. It was also a huge distraction from the depression of not getting to see my kids everyday but again that’s for another time.
Now, years later, I still live with the effects of that time. I’ve built a new artistic life rooted in the things that bring me joy and makeup who I am. My work reflects the landscape of recovery, the scarred but resilient, quiet but fierce. And while I wouldn’t wish trigeminal neuralgia on anyone, it taught me something about survival. About adaptation. About the beauty in what’s left after everything else is stripped away.
If you’re living with chronic pain or illness, especially as a creative, I want you to know you’re not alone. Even when it feels like the world has gone silent around you, your voice still matters. Your art still matters. And you can make something powerful out of the ashes.
The pain is still there but not as bad in the least. Now its a constant cold burn in my numb face and dealing with fibromyalgia in my lower back and legs exacerbated by years of driving 16 hour days to see my kids but I will take this any day over what I was trying to survive.
To the other artist with chronic illness or disability, I see you. Feel free to reach out and share your story. We were not made to go through this life alone.
MERC
After the surgery you can see the scar behind my left ear.