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 see 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.
