Two years ago(-ish), I wrote a piece for my Author Blog at the time. After keeping my head down for years, I had a confession to make. I was ready to admit to the world that I had Multiple Sclerosis. Looking back on that moment, I can still taste the fear acidic in my mouth. The fear didn't stem from other people knowing, well no, let me ammend that, it didn't just stem from that. Admitting it outloud made it all real for me. But I'm glad I did, because it gave my the opportunity to pick up my sword and fight with the rest of the warriors.
First printed on 3/9/16 on nellieknevesauthor.blogspot.com
So, what is the secret part of the Secret Life of a Renegade Gypsy Cowgirl? Well, here it is.
My name is Nellie. I am a 32-year-old Christian who has been married nearly 13 years. My secret is I have multiple sclerosis.
Nearly four years later, I still hate saying it out loud. It's not as if not saying I have MS changes the diagnosis, but I hate it. Only those who are closest to me were informed, until one of my fellow MS'ers "outed" me from the church pulpit; boy, that was awkward. I admit I was mad at first, but I came to see the gift he gave me that day, not letting me remain hidden in the shadows while I had people who loved me and could support me.
There are so many different aspects that play into why I don't normally tell people about my diagnosis. I could give you examples from my life, but who wants to wallow in all that? Suffice it to say, I have seen expressions ranging from pity all the way to the opposite side of, “Get over yourself; you don’t look that bad.”
I guess I don’t look that bad. I stay active—kickboxing, jogging when my legs cooperate, and some major booty-shaking with some dance aerobics DVD’s (I make sure I’m alone for that embarrassment)—so I guess it can be hard to see the struggle. But it’s still there. Do you ever feel that way, hidden in plain sight? It reminds me of the poem "Not Waving But Drowning" by Stevie Smith which depicts a man who fell overboard but no one rescues him because he looks as though he’s having a grand ol’ time waving from the surf, but whoops, he died.
Don’t worry, on most days I’m still waving, not drowning. MS hasn’t beaten me yet. Sure, it’s knocked me down a few times, left me fatigued and disoriented as well, but I’m still keeping my head above water.
So why have I kept it all to myself for the most part? The real reason is simple: I don't like to say it out loud. I don't want to hear it. I don't want to admit to myself that this is a part of my life and it probably always will be. I don't like to acknowledge the monster in me, even though I can feel his claws and smell his awful breath. If I say it out loud, it feels real, and I'm never sure that I am strong enough for this to be real. I am ashamed of the weakness that MS brings me.
But I realize how flawed this logic is. Not admitting it does nothing to help me and everything to hurt me. Fear of a title is silly: it does not change my reality to hide away the truth, and leaves me alone in the dark rather than motivating me to help the others who are just as terrified as I am.
Where is my faith? Where is my strength? Something only has power over us if we are willing to give it that power. When we stand in the light, the darkness must flee. So why don't I tell people? Because these are my weakest parts. I feel exposed, vulnerable, and naked where everyone can see the seams that pull and strain under the load. I hate feeling that way, but doesn't everyone?
I am very blessed to have people in my life who don't focus on the monster inside me. They know it's there, but they know that while it is a part of me, it does not define me. These are the people who see me when I fall apart, but instead of reminding me of everything I should have been doing so that it never happened, they pick up the slack without a word and make my life worth living again. These people see Nellie. I am forever grateful to the people who forget that I have MS and never stop wanting to be there because I do.
So why now? Why so much honesty now?
I started writing Caskets & Conspiracies as a private investigator story, but as I thought about characters and their flaws, I saw an opportunity to shed some light on MS. Most people have no idea what MS is, or how it feels. They assume people with MS are in wheelchairs or on arm crutches, and they don't realize how many of us are out living our normal lives, diseased in secret. As I started doing research, I could see the whole spectrum of the MS world—different symptoms, different outlooks, so many different lives—and I wanted my main character, Lindy, to take a sampling from all of them. I wanted her to take the two sides of our world: the darkness of the fear and the light of our hope.
The dedication in the book is to Mary and for those without a voice in the darkness. As I wrote, I started to realize that it's not just MS without a voice. Monsters come in different shapes and sizes—addiction, depression, chronic pain, chronic fatigue, heartache, and so many others—and they can be just as hidden, just as hard and awkward to explain to people, but just as real. The people that fight them deserve to have a voice as well. Those warriors deserve to be lifted up and empowered just as much as anyone else.
The Lindy Johnson series is about a woman that is far from perfect—proud, a little rude, selfish, and isolating. She has a good heart and she wants to help, but she is scared.
Scared of life.
Scared of love.
Scared to lose.
Scared to die.
How many of us can relate to that? I couldn't count how many times I lie awake in the dark and wonder if I'll wake up tomorrow. For me, it's a trial of faith, and I am grateful for my Christian beliefs, especially my faith in Christ, whose grace carries me most days.
It is my hope that someone will find strength in the Lindy Johnson series and stand up and fight just a little bit harder against the monsters. I've spent too much time hiding, and not enough time lifting the others around me. That ends now. I won't hide in the darkness anymore.
I guess my thought is that if I can help someone else like me, still scared of monsters and the dark, then honesty and some raw vulnerability is worth it. No one should have to be alone in the dark.
My name is Nellie. I am an author. I have multiple sclerosis. I will not be ashamed anymore.