By Hanna Shae Smith
This story is part of the Facial Pain Research Foundation’s series “Facing My Pain,” which shares patient and caregiver stories to combat loneliness, increase awareness, and provide information and insights to patients and practitioners. If you are interested in sharing your story as part of this project, please contact Hanna Shae Smith at firstname.lastname@example.org.
Marsha Garcia is an ATV racer, non-profit leader, event facilitator, mother, wife, grandmother, and person diagnosed with trigeminal neuralgia – all hats that she wears with determination and strength. Watching Marsha speed through the trails of the Arizona desert, it may seem difficult to believe that she is diagnosed with a neuropathic chronic pain disorder – especially one that can be triggered by outdoor elements such as wind and jolting movements.
So, how does she manage riding on an ATV, flying through the desert at high speeds, getting air on dirt jumps, and careening down rocky trails?
For Marsha, there is no other way to manage life.
HITTING THE TRAILS
Marsha stumbled into racing by accident. In fact, she was initially opposed to it altogether. When her husband bought ATVs for Christmas one year, Marsha was livid. As he took the kids into the desert to speed through the trails, she stayed home fuming about how dangerous this new sport could be for her family. About a week later, however, Marsha’s kids had convinced her to join them, and everything changed. Marsha bought her own ATV and took off without looking back.
One day, while on the trail with some friends, Marsha watched an ATV race and was immediately intrigued. Two months later, she entered in her first race and came in first place out of 20 women.
“I wanted to do this,” she says. “And I did. I took first place and, after that, I told my husband, ‘I’m hooked. I have to do this. This is my calling.’ Racing gave me a different type of identity.”
Today, she is racing on the amateur veteran level, sponsored by Wienen Motorsports, led by international racing champion Chad Wienen. Marsha hosts riding and racing events that encourage other women to find resiliency, strength, and joy through racing, while also spreading awareness and education about trigeminal neuralgia. Additionally, she has founded a not-for-profit organization, TN Warrior Racing Inc., that assists women and youth starting out in ATV racing. Because the sport is expensive, her organization will aid in providing access to ATVs and other gear so that those who wouldn’t otherwise be able to try ATV racing can now find joy through the freedom of the trails.
Watch videos of Marsha racing on her website: https://www.tnwarriorracing.com/videos
ANOTHER HILL TO CLIMB
Marsha began experiencing symptoms of TN about five years before her official diagnosis. Having endured two concussions from motorcycle accidents, she thought perhaps the pain was related to those incidents. She described her pain like having labor contractions in your face with intermittent numbness and then throbbing sensations. When she sought care, she was given numerous conflicting messages.
“They said, ‘You might have pulled a muscle in your shoulder,’ or I was sent to an [ear, nose, and throat] doctor,” she says. “It was so many different things to the point that I just stopped going because I was spending all this money and I felt I was getting the runaround.”
However, she still knew something was horribly wrong – evidenced by the multiple ER trips she had to take to be given pain medication. Finally, Marsha reached the point where not even medication was able to intervene during pain flares. Marsha was a banker of 15 years, and she was not able to work because of the pain.
“I couldn’t get up off the floor some mornings because of the pain,” she said. “I’d go to open the branch and I’d have to call my son. I couldn’t drive. My head was pounding. I didn’t know what was wrong. I’d open the bank and then go home. I couldn’t get it under control, and I got to the point where I said, ‘I can’t do this anymore.’ And my husband was like, ‘No, you can’t give up, you have to keep going.’”
Finally, a neurologist referred Marsha to a pain specialist who was able to diagnose her with trigeminal neuralgia.
“He said, ‘I believe you have trigeminal neuralgia.’ And I said, ‘Tri-who?’” she recalls. “When I found out, it was scary. But I was happy that I finally knew what was going on. Now, I can battle this. It was a definite release because it’s not life-threatening unless you threaten your own life. I’m a fighter, I can fight this. At least I know what I’m fighting.”
Although Marsha was hesitant to be put on medications, gabapentin became her primary pain intervention. She also connected with other TN patients who shared resources on treatments that had helped them, finding some relief in different therapies. She’s tried dry needling, injections, and a chiropractor. She was interested in Botox, however, her insurance refused to cover it. Using a Vicks nose inhaler helps to calm down her flares, and she uses it when racing.
When Marsha was diagnosed with trigeminal neuralgia, she immediately knew that she did not want her diagnosis to prevent her from racing. Racing was more to her than just a thrill – it was mental health care that had pulled her through depression and was an integral part of her identity.
“I suffered from depression and [racing] brought me out of it and kept me out,” she says. “When I found out about [TN], if I were to lose the ability to race and have to deal with depression and TN, as well, I wouldn’t have been able to make it.”
Marsha took to social media and explained to her friends and family what was going on in her life. She also identified support groups and was immediately met with a wave of support from other people who had been diagnosed with TN. She heard the stories of so many people who were going through great difficulty with their diagnoses and witnessed an entire community of people like herself who needed hope.
That’s when the realization hit her: Marsha suddenly saw the rest of her life unfolding. She became determined that her platform as an ATV racer could be one grounded in advocacy, and that she could use her love of racing to share about trigeminal neuralgia with others – connecting people who had the disorder and those who could support them.
“It just felt right,” she says. “It felt like, this is what’s going to keep you racing on a mission.”
Marsha shifted gears. She began attending events such as the Arizona State Fair where she talked about ATV racing and trigeminal neuralgia, offering brochures and information to raise awareness. Shortly after, she was approached by Wienen Motorsports with a sponsorship offer. At that time, Marsha was not close to being a national, much less international, competitor, so she reached out to them with slight apprehension.
Marsha recalls how the conversation with Wienen Motorsports went and how it continued to motivate her desire to help other people with TN. “Look at the people you talk to and what you achieve,” they told her. “And I felt great about that. This is going to be so big for TN sufferers because I can do more and I can put my name out there and more people are going to have to listen to what I’m going to say.”
On and off the trails, Marsha has made it her mission to talk to as many people as she can about trigeminal neuralgia.
“I’m talking to anybody who will listen!” she says with a laugh. “I’ve kind of made it my mission to take it as far as I can take it. It’s snowballed. It’s gotten so big already and I want it to get bigger.”
As the founder of TN Warrior Racing, Marsha hosts events throughout the Southwest. She is able to use this facilitation to both provide community for women racers and as a chance to talk about trigeminal neuralgia. Because middle-aged women appear to be at higher risk for trigeminal neuralgia, Marsha also focuses her efforts on connecting with other women like herself and starting conversations.
“If you get caught off-guard, I don’t want you to be a statistic,” she says. “I’m a fighter. I fought at this, and I went through it. So, let’s get you there. I’m talking to anybody who will listen.”
Currently, Marsha’s pain has plateaued, and she is able to manage with medication and careful structuring of her life habits. When she was initially diagnosed, her family lived in Washington state. Their move to Arizona was prompted largely by her need to be somewhere with weather that was more conducive for someone with TN. The harsh winds and cold weather of the Pacific Northwest were not TN friendly, but she finds that Arizona is much more suitable.
Marsha stays home taking care of her grandchildren and races once or twice a month while focusing her efforts on the racing community, TN awareness, and letting other people diagnosed with TN know that there is hope and life on the other side of diagnosis.
“I’ve raced along with pain. It’s part of me now and what I have to do in order to deal with it,” she says. “I want you to know that no matter what your obstacle is, we’re going to get through it and I’m here to help you.”
Learn more about Marsha Garcia and TN Warrior Racing at her website: https://www.tnwarriorracing.com/
Connect with Marsha Garcia on Instagram: https://www.instagram.com/tnwarriorracing/
Author byline: Hanna Shae Smith is an award-winning journalist and daughter of a person with trigeminal neuralgia. Smith lives in Phoenix, Arizona, where she is the manager of the Soaringwords SOARING into Strength Positive Health Initiative and studies psychology and global health at Arizona State University.