One day I told my doctor that the left side of my body, sometimes the right side and both hands are all affected. I can’t sleep and my muscles feel like they are being pulled apart. He said, “I’m so sorry.” That was it.
“What do you mean you’re sorry? I don’t do sorry. I’m a pyro,” I said. As a pyrotechnician I get cut, I fix it, I cut it open again, I get stitches. It’s done. Sorry is not a solution.
Let me start at the beginning.
I was suffering from chronic pain and was diagnosed with Trigeminal Neuralgia, nicknamed suicide disease because doctors don’t know what to do. My treatment options were a Botox injection in my brain, no thanks; Gamma Knife surgery (radiation surgery); or a brain implant. I told my neuro, “here’s the deal, if I get gamma knife surgery I want She-Hulk power, if I choose lasers I want to shoot them out of my eyes, and if I do the implant I want the ability to read minds.” The options sounded like X-Men mutations.
I underwent Gamma Knife surgery on the left side of my brain, then the right. I ended up with neurological damage, or what I referred to as Wolverine face because it felt like I always had a fuzzy face.
“Well okay, now I have neurological damage. I’m going to live with it,” I thought. One day I was at work and suddenly had facial paralysis. I passed the stroke test, went back to work, then the gym. My left side went heavy and I went to the hospital. I had emergency surgery to repair what was two brain aneurisms. Overall, I underwent two angioplasties and a stent. Brain aneurisms explained my symptoms. Now I had X Men powers to help me join the Avengers! Moving on.
I also underwent a craniotomy to help with other symptoms. I decided that since I had brain issues I was going to start liking zombies. So I had a zombie-themed birthday party at the hospital and when I recovered I completed a zombie mud run. My brain, my fight. I worked for my brain, I paid for it, I’ve seen many pictures of it. You’re going to have to work harder than that, brain.
But things kept happening. I would lose stability. I started taking little Dachshund-sized steps after I fell off stairs while setting up a pyro show. I tore some tendons in my leg. But it happens, because I work outside, on heights, in rafters. Every ailment had an explanation.
Then my dystonia worsened. I was driving to Las Vegas for a pyro gig and had to pull over because my hands started forming hooks. I thought, “That’s okay, I’m a pirate, I can drive, arg.” I played mind games to keep me moving. Until it became too much. Over the last few years I had gone through multiple neurologists, specialists, brain surgeries and internal radiologists. I was misdiagnosed with migraines and epilepsy.
Fast forward to this year, to the moment the doctor gave me an apology. He sent me to a Parkinson’s disease (PD) specialist. I did the walk and finger tests. “You have Parkinson’s,” she said. I went silent. “I’m so sorry, I normally don’t blurt it out, but in your case it’s really obvious,” she said. “We’re going to treat it.” I responded immediately to the Levodopa test. I went on it immediately. I left that office knowing that the radiation treatment and surgeries were the Olympic trials and Parkinson’s is my Olympics. Let’s do something.
Working as a pyro I work with a lot of big, strong, healthy people. We work from heights, in rigging, on boats, ladders, all outdoors. I work full time for Disneyland and do a lot of concerts, like Coachella. I’ve done really cool videos and worked with rock stars. I’m adjusting my life to PD, living Life 2.0. For instance, this week it was 103 degrees outside. I had to be proactive and call my supervisor to say I need to wear a white hat instead of a black one, I need to drink extra water, take breaks and not ignore my multiple PD medication alarms. Life 2.0 means on days where my body is wiped out I need to sleep that night. So I’ll sleep on the couch because laying down triggers my dystonia. I can still go in the pool with Life 2.0, but now I need to have someone with me in case my legs cramp. Most importantly, it’s about not being scared that PD will take over, but instead letting the challenge keep me going.
I can’t let other people fight for me. I’m still active – I go to the gym, take part in non-profit walks, work. I stay true to my Mesoamerican heritage by taking part in fire circles. Just last weekend I helped facilitate an all-night fire circle as part of a tribal community. I share Mesoamerican teachings with other tribes and local cultures. I keep moving, spiritually and physically. I have a walking team. On days I’m tired and depressed, I know I can’t let my walking team down, so I walk. My team always picks me up.
I’m walking in Moving Day® Los Angeles with me, not because of me. After July 4th, or pyro Christmas as we call it, I’m excited to rally my team. It’s a Life 2.0 goal.
I’m exciting to take part in Moving Day® because NPF was the first place I turned to for help. I’ve always firmly believed that you are your best activist. I’m not shy. I have fired two neurologists. Even though today I have my awesome care team — Primary Care Physician, three neuros, neuro surgeon and interventional radiologist— nobody knows me better than me. Get as much information as you can and advocate. I ordered my NPF Aware in Care kit right away and at first I tried to hide it. Now I carry it around like a purse. I want to be a face of PD because when people associate a face with a word it changes the meaning.
Everyone should run out there and find something that makes them happy or excited. We can’t count on next year or retirement. I know I have today.
Help Frances’ Moving Day® LA team, Maleficent Minions, reach her goal by clicking here.