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Nellie is an independent author out of Madera, California. She lives on a small ranch with her husband and daughter. Nellie is passionate about spreading awareness concerning multiple sclerosis. She understands first hand many of the struggles and frustrations concerning the stigma and preconceptions people face with this disease. Ten percent of all profits from the Lindy Johnson Series go to National Multiple Sclerosis Society. You can follow Nellie’s blog about writing and her life with MS at http://nellieknevesauthor.blogspot.com/ or you can follow her on Instagram: @nellieknevesauthor
I don’t look like a fighter; I never have. I’m just another mom late to pick up her first-grader because I was stuck in traffic, or because I couldn’t find the pink-eyed Beanie Boo I promised her for hitting her super reader goal. My hair is usually frazzled. My jeans are typically splotched with dirt from work on the ranch. I don’t wear accessories like the other moms. I don’t do scarves or cute sandals that glint in the sun. I’m here. Some days that’s all I have. But you can’t see that.
Almost four years ago, I woke up and my left arm felt as though I had slept on it wrong and it had fallen asleep. I waited for it to wake up all day long⎯nothing. I had full control over my arm; I still took my daughter to the park. I still cleaned the bathroom, washed the dishes, cooked a quick dinner, and headed for work as a fitness instructor.
Half way through class, I felt the numb sensation start to spread. I could feel its reach slowly inch over my skin, as though it was sludge or it had laced inside my veins. It was as if the left side of my face had disappeared. I looked at my class to see if there was some sense of shock or horror. Honestly, I thought I was having a stroke, and if my face had fallen they might have screamed. Nothing⎯just kept on side-lunging and working up that sweat. They didn’t stop, so I didn’t either.
By the time I returned home, I was scared. It was as if a line had been drawn down the center of my body and the entire left side was without feeling. That was the start of testing: MRI’s, sensitivity, walk the line like a sobriety check—all of it. Ideas were tossed around: aneurism, stroke, diabetes. But, finally, my neurologist landed on the answer: Relapsing Remitting Multiple Sclerosis.
One of the formats I was teaching as a fitness instructor at the time had a mixed martial arts component to it. I had always loved it; being able to visualize my opponent was a strength of mine and with a new pit of anger to draw on, my body responded with vigor. Still, I had to claw my way through every jab, every upper cut, and every squat and push up. I was determined not to let anyone see that I had changed. I hid the monster away and locked him in a cage so that no one could see his destruction, but that doesn’t mean he stopped destroying; it just meant that I faced it alone.
I still have weak days, times when my body does not respond when I ask, but I refuse to be a victim anymore. These years spent alone without anyone knowing what I was fighting against have been pointless. What good is a victory if I cannot share it? What can I learn from a defeat if it won’t benefit others? No. I will reach out and lift those that need me.
I have hard days. Days when my legs buckle and I stumble, but I will not give in to the monster. Those are the days that I fight back. It felt impossible to fight something like MS. There is no face, there are no fists to avoid, but my rage is real, my frustration and anger and helplessness are real.
I use kickboxing as a therapy to help me. Beyond the normal capacity of exercise, kickboxing helps me to find my inner strength. As I wrap my hands and prepare for battle, I can feel the monster quiver inside of me because he knows I’m still stronger than he is. He knows I refuse to sink. When my fists connect and I feel it, I know I’m in control. The pain, the excitement, the exhilaration that my completely numb leg just made an eighty-pound bag swing is therapeutic. Even in my weakness, I am still strong. Every kick I land, every punch I throw is a testament to this disease⎯I will not surrender. I may find myself on the ropes at times, it might feel like there is no way out, and I let those hits keep coming. But I know it is only a matter of time before I rally and fight back. I am stronger and I will not concede to this disease. I am not a victim. I am a warrior. A victim is attacked, but they do not fight back. A warrior is attacked, but they always retaliate. Every minute I spend fighting my monster is another brick in the walls that guard me from his rampage. I will not give in; I will not break down. I will fight until my last breath.
As an author, this is the reason that I write about strong women, women who won’t give up and won’t give in. Just like the warrior inside all of us, they have flaws, but their power runs deep. As I started my latest project, The Lindy Johnson Series, I faced a decision: I had an opportunity to give the main character the same monster I faced every day, but it meant sharing the secret parts of me in order to do it. Writing about a character with multiple sclerosis who still lives a normal life is another way I fight back. I won’t let the monster silence me in shame. As I wrote, spoke to others, and researched the emotional aspects of this disease, I felt empowered by the knowledge that I was not alone and excited that I could share that with my fellow warriors. As the reviews have come back since the release of Caskets & Conspiracies, I have been happy to hear how many say they had no idea what MS was about, but they now have a glimpse into the world of a sister, a mother, or a friend. Knowledge is power. Understanding is freedom.
The more vocal I have become about my fight, the more I have come to meet others who cower in the shadows. MS is not the only monster that lurks without a face. Depression, anxiety, chronic fatigue, heartache, addiction— the list goes on and on. All warriors that are also fighting for their lives in a body that doesn’t necessarily look sick. While I know what I do is not for everyone, I know it works for me.
I don’t look like a fighter. I may never step into the ring or deliver a knockout punch, but that doesn’t mean I don’t fight every day of my life. I’ve never fit in with other women⎯too loud for the quiet ones, too introspective for the outgoing ones. But among fighters, I feel the courage and the power surge within me. I am part of a society of strength⎯a legacy of hope and survival. I may just look like another mom on the block, but if you happen to pass by my garage late at night, you just might hear me fighting my monsters because I am a warrior.