Sunday, March 11, 2018

I'm That Moose

     A Tale of Short Term Memory and Multiple Sclerosis   

    Are you familiar with the book by Laura Numeroff titled, if you give a moose a muffin? If you aren’t, do yourself a favor and read it. Yeah, I know it’s a kid’s book. Trust me, it’s worth it.The book is about a moose and a little boy. The little boy gives the moose a muffin, but then the moose needs jam. The jam triggers another thought and another, and before you know it they are waist deep in puppetry and the house is a disaster, I mean, a whirlwind of fun.

      I’m that moose. 

      And I bet on some days you’re that moose as well.

      I’m that moose because I start my day with the big plans, but more often than not I come up short, and with a mess to show for it. I’m that moose because when my sweet husband arrives home at the end of a day, he often finds a trail of good intentions all leading to an exhausted woman who has tucked herself into bed while dinner is half prepared on the kitchen counter.

Let me just walk you through a  day with this moose that is me.

       I wake up, manage to hold it all together in order to get my daughter to school. When I get home, I see a bag of potting soil in the breezeway. It’s a nice day and I think, hey I have those sunflower seeds in my drawer. I should plant them. I walk inside, kick off my flip flops and notice the carpet is pretty dirty. I pull the vacuum into the hall, but the thought is gone, or at least morphed, and I really should get all those spider webs that are catching soot in the living room.  Like a boss, I suck up all those nasty buggers, until there’s one web that I just can’t reach.

I need a chair.
    Makes sense to finish this now, so I go to grab a chair from the kitchen and notice the bench that needs to be sanded and stained. My sweet husband built the table and benches from scratch and all I had to do was sand and stain them. Guilt overwhelms me and despite the fact that they weigh more than I should carry, I start dragging one out the door.

     Geez, look at that laundry. Does it multiply when left alone? Is it like gremlins? Is someone feeding it after midnight? Knowing it won’t take that long to fold it, I carry a basket into my bedroom, passing the bench and the abandoned vacuum on the way and sort of remember I was doing something, but don’t worry guys, I’ll be back.

   I dump the basket on the bed and return for the second basket, the one that is actually two baskets worth because I don’t want to make a third trip. But I notice a smell coming from the washing machine and when was the last time I cleaned that thing?

Front loaders, am I right?

    Baking soda reminds me that I haven’t made cookies, even though I promised my daughter I would as she dashed off to class.
   Once more guilt takes precedence and I start baking some chocolate chip cookies, because they’re fast. I cream the butter, add the sugar, baking powder, baking soda, vanilla, eggs, oh my gosh, the chickens! I haven’t filled up their waters. Obviously living creatures need my attention before baked goods. I add the flour, glob twelve cookies on the tray and put them in the oven.

I’ll be back in ten minutes.

               See, best of intentions…
    Of course I find a few more chores along the way-
      Rocks clouding the path. 

     Discarded watermelon rinds

     How did this cup get out here?

     Maybe I should let the chickens out to free range today. The sky is clear, I don’t see any hawks. They’ll just swoop down and take off with a chicken, by the way. We lost one earlier this year and I buried her under the new peach tree. 
   I haven’t checked on that peach tree lately, I really should. 

   At least I get the waters filled and the chickens out before I venture into the orchard. The tree looks good, new leaves, and new growth. Thanks Bellatrix, the chicken, RIP.
   I walk back to the house, but my boots are muddy from the orchard, so I go in the back way, through the laundry room. Oh, there’s the bench halfway through the door. Don’t worry bench, I’m coming. 

         Why is there so much smoke? Oh shoot, the cookies. I pull a blackened tray out and set it on the cook top. Sigh. What time is it anyway? 1:30. Why is that an issue? School is out at 2. My phone rings and it’s the school. Minimum day. Oh shoot, I’m half an hour late.

I run out the door, drive as fast as legally able, and apologize a thousand times to the office staff. I’ll make them cookies later. Oh shoot, the cookies. My daughter wants something special for dinner and of course we don’t have the ingredients, but she got an award for math today, so I really want to make it special. Hello mom guilt. What’s a thirty minute drive out of the country to the store in the suburbs?

Or two hours. We bought a pizza for dinner because she’s got soccer, then activities at church. Thank goodness my sweet husband is working late and I’ll still beat him home. Around 8 I pack up my girl and we trek back out to the house. \

I walk passed the potting soil, oops.

Then the front door carpet that needs vacuuming, darn it. 

Followed by the bench, the burned cookies and the abandoned vacuum.

The spiders have taken the vacuum as their own. She’s gone now. 

But at least I have a pizza, right?

It’s this moment that my sweet husband usually comes home and gingerly picks his way through the ruins of my best intentions. He takes the pizza, preheats the oven, and keeps my life in order. 

What would I do without him

Now, you may think, I’ve been there. And maybe you have. Maybe you’re super busy and juggling fourteen balls at once. I wish that was my case. 

I have Multiple Sclerosis. It’s a degenerative disease of the nervous system. Symptoms range from numbness, to eye problems, to motor issues and more. Since it’s a snowflake disease no two cases are the same. We’re all fancy snowflakes with our own set of super fun problems.

Sarcasm is my number one medication.

I was diagnosed 5 years ago, and my short term memory has taken a severe hit during that time. Some days, I don’t have that much of a problem, but other days I’m that moose.  The second I leave a room I can’t remember not only what I was doing, but that I was ever doing it at all.

Yes, it can be frustrating. At one point in my life I was a Super woman and moose is a big transition from that. It’s an inter-species change, people. But, I’ve learned some tricks that help.

Lists. I make a lot of lists. I also lose a lot of lists, so be ready for that.

I make the same list in a couple different places, on my phone, on a note pad and on a chalkboard in my kitchen. I have an enormous chalkboard calendar that keeps track of upcoming appointments, and that coupled with my phone gives me a fighting chance.

 I stop myself before I start something new. As much as I tell myself I’ll totally remember. I won’t. Or I start a project when my sweet husband is home because somehow he keeps me grounded.

I practice self care. Ugh. Why is this one so hard? My short term memory is worse when I’m stressed out, and I have found that is not only frustrating, but it’s not safe either. Know your limits and slow down when needed.

I’m only five years in, and every day is an adventure with MS. I am still learning and growing, but I’m also not giving up. I never said I didn’t like being a moose. I mean come on, who doesn’t love a moose?

What do you do to keep your short term memory in check? Let me know in the comments.

Wednesday, April 20, 2016


        I've been tagging some of my photos and posts on Instagram and Facebook with this hashtag for nearly a year now. I get the question all the time- what does that mean?

       I thought I would explain it real quick.

       Lindy Johnson is the main character in my new series. Her debut book, Caskets & Conspiracies, introduced her ( and her many flaws) to the world. Lindy lives with the chronic disease, multiple sclerosis. She hides it away where others can't see it, and very few people know her struggle. No one would ever guess that Lindy, a successful private investigator, has issues with sight, sensation, and vertigo, just to name a few. While she is often selfish and short sighted, she is also strong and determined. Lindy is the most real and human character I believe I have ever written. She's far from perfect, and she makes no apologies for it.

      There are moments in my life, and maybe you have them too, where I feel overwhelmed and lost. The desire to give up and give in is strong but I dig deep and I try harder (sometimes after a good cry and chocolate which is always permitted in my world) and I push through the frustration and pain.

      That is #FeelingSoLindy

      Sometimes I feel a little rebellious. I don't like the social norm. I don't like being told that I can't do this or that's just not practical. I fight the system. I have little acts of rebellion, sometimes in secret, often times very open. I fight for change and equality. I refuse to be silent.

    That is #FeelingSoLindy

    There are people without a voice. People that are too afraid to speak, too ashamed to speak, or just smothered to the point that they cannot speak. I try to speak for them. I try to bring them into the light. I help where I can and sacrifice my blessings to aid them, even if no one ever sees me do it.

    That is #FeelingSoLindy

    I did not base Lindy's character profile off my own personality.We wouldn't see eye to eye on many topics, least of which being love, but there are moments when I can feel her influence. Those are the moments where I am feeling so Lindy;

    What are your #FeelingSoLindy moments? The next time you're feeling strong, or determined, overwhelmed or rebellious, borrow the tag. It feels good to be #FeelingSoLindy

Wednesday, March 9, 2016

My Confession

            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.

Friday, January 29, 2016

Forget me Not Remember me Always

I've been wanting to write this post for quite some time but between the books being edited, the books being written, the horse needing to be fed and the family who I love to spend time with, I'm only making the time now. 

While I was writing Caskets & Conspiracies it became necessary to research memory implantation and false memories. While I was doing that research, I came across this article. It is found at and it deals with two scientists that have successfully implanted a memory in a mouse. 

 "The observation culminated more than two years of a long-shot research effort and supported an extraordinary hypothesis: Not only was it possible to identify brain cells involved in the encoding of a single memory, but those specific cells could be manipulated to create a whole new “memory” of an event that never happened."

Now the psychology lover in me is really excited by this information. Really Excited. Yes, it is just a mouse, but let me tell you that's where it all starts. The idea that we could actually pinpoint a memory and rewrite it is almost God-like in its application. 

That's where the non-scientific side of me becomes more than a little nervous. We could rewrite memories. 

Think about that for a second. 
We could rewrite memories. 

Yes, there are situations where this could be more than practical. There are certain events in a person's life that have the ability to break them. Could we undo a psychotic break if the memory of whatever event triggered it was erased? What about young children that live through horrible abuse? Could we overwrite those memories with new ones that could potentially shape a happier future? 

But- What about the other side. We are our memories. History is just a collection of memories. If someone had the power to rewrite new memories in the masses, what would stop them from rewriting history? 

I know. It would make a good book right? But this is real. All of this could eventually become very real in the future. It all starts with that little white mouse and curiosity.

The article points out, "Though the work so far has been done on lab mice, the duo’s discoveries open a deeper line of thought into human nature. If memories can be manipulated at will, what does it mean to have a past? If we can erase a bad memory, or create a good one, how do we develop a true sense of self? “Memory is identity,” the British author Julian Barnes writes in his memoir Nothing to Be Frightened Of. “You are what you have done; what you have done is in your memory; what you remember defines who you are.”

As a writer, the idea opened a world for me and I ran with it. I am excited to share Lindy Johnson's first adventure "Caskets & Conspiracies" with the world in the very new future. 

But first I want to hear from you. I asked this question on my Facebook Page, but I want to ask it here as well. 

If you had the ability to erase and rewrite a memory, would you do it?

Most people said no they would not. 

Then I asked my second question.

If your child endured a traumatizing event, one that would change the course of their life, would erase and rewrite their memory?

That was where the answers differed. But what do you think?

Wednesday, November 25, 2015

What type of reader are you?

Hello to you all! It is a busy time of the year, but I've had this idea bouncing around in my mind for a week or so now, and I've really wanted to put it out there. I am in full swing trying to get Lindy Johnson out in the world for folks to read. I'm about two months behind what I had wanted originally, but hey, I adapt, right? I sent out the manuscript to my original beta readers, and received very mixed reviews. I put a lot of this on the fact that it is a totally different voice from my other books, and my beta readers have read far more than just Nightwatch, bless their hearts. Lindy is not a suspenseful book, therefore is is not solid action all the way through. It definitely has some drama mixed in with the mystery and romance. Lindy's voice is also a *bit* sarcastic, and she's not always kind. Imagine Han Solo as a female private detective, self serving, loyal to the highest bidder, and a little broken. Some of the beta readers adore her, and others are not as bonded...

Beyond all this, I have noticed something else. Nightwatch is a very fun, easy, not a lot of weigh-you-down-content sort of book. It is a great escape into another world filled with intrigue, spies, and double cross. I love it. Lindy Johnson's book series will follow the life of a private investigator that also happens to have multiple sclerosis. It studies out the idea of weak and strong, and where the line is, and what it means to be strong. Lindy is meant to enlighten, and lift; to give power to those who may not have a voice. It is meant to shed light on those people I call "diseased in disguise". They look normal to the naked eye, but you don't necessarily see the struggle of every day and every moment.

The reaction I have received from my beta readers has been mixed, I think, because there are at least two types of readers, the escapist, and the deep thinker. The escapist wants a book to do exactly that, escape, transport them to another world where none of their present worries or cares exist. It needs to be fast paced, never a dull moment, and succinctly told in a fashion that they can pick it up and never want to set it down. These readers love Nightwatch, and they will adore Falcon.

The deep thinker also wants an escape, but enjoys a chance to learn something. When this reader finishes a book, they want to be different having read it in the first place. They want the book to leave an impact on their heart. These readers dream of meeting the characters they have bonded to. The ride may not be fast, they may read and set the book down, but they enjoy pondering and dwelling on the story as they are away from it. These readers will love the Lindy Johnson series and the personal journey they take with her.

I sat and thought about my own style of reading, Am I an escapist, or a deep thinker? I finally came to the conclusion that I am both. I have devoured everything Dorothy Gilman has ever written, and her books have always been a great escape for me. I feel the same about Mary Higgins Clark and Jack Weyland. They all have the ability to suck me in and let me live in another world, and I love it.

Then there are other books. The Hunger Games series left an impact on my heart, not just because I'm totally team Peeta, but the way Suzanne Collins crafted the political theme of the book opened my eyes to so much that I had not seen in my own world; ideas about privacy and rights, and our willingness to give up freedom in exchange for security. It pushed me back to my psychology training concerning our ability to follow orders and the human capacity to inflict pain on another, just like the Milgram studies showed. I love that I still think about the characters like they are old friends of mine. There are others as well, Sue Grafton's W is for Wasted opened my eyes to the world of the homeless and forgotten. U is for Undertow gave me reason to worry for our elderly and the people that care for them. And I can't forget Divergent and how it helped me to think about the balance of our own personalities, that light and darkness reside in the same being, and you cannot have the good without the bad, opposition in all things. While these may not be the most hard hitting and controversial books of all time, it is what I like to read and I love that truth and light can be gleaned from so many different genres.

As usual, I have rambled a bit, but I guess I like to help people think. I like when I hear that something I wrote touched a heart, or healed a wound. I think our world could use a little healing after all.

What kind of reader are you?

Thursday, September 17, 2015

Visiting Nightwatch

This week I have been spoiled rotten by my in-laws with our annual family retreat. It has been heaven, and the solitude and constant roar of ocean tides has been incredible for my ability to write. I finished my latest novel (The first draft anyway) Lindy Johnson & The Elderly Entanglement (working title). I wrote at least 65% of it while I was here. When I finally finished, my husband said, "Oh good, no one had seen you yet." What can I say, when I write, I'm in another world.
    I'm always looking forward though, and even with Lindy written up and my beta readers reading through it, I have a bug in my bonnet because I just want to write some more.
  As much as I always look forward. It is good to look back, and being here in the same house I was in last year, on the same stretch of sand and ocean, I can see Nightwatch and Falcon everywhere, because this is where it began.
             Now that isn't entirely true.
     I started Nightwatch 12 years ago, but then it was just called "Beth". That's right, Emiliana Woodroow was once named, "Beth". While it is a pretty name, it did not do what I wanted. In fact, the story did not go where I wanted. There was a good twelve pages of introspective watching from a window in New York City. (yes, that changed too). I wanted it to grab hold and snag the reader from the start, and so Beth got a makeover... twelve years later. I saw this house, the one I am writing this very blog post in right now, and I was inspired. So, today I thought I would share a few pictures of the setting that inspired me in writing Nightwatch.

 A view of the neighbors patio. ---Can't you just see two nosy old ladies watching Adam running the stairs while they sip their morning tea?
 I keep waiting for Adam to come tearing up these stairs..... just sayin'....Anyone else?

How about a cup of Gretchen's fancy hot chocolate?
And the beach, the bonfire, the sunsets, and the romance, of course

Imagine dragging your easel up all these stairs, just to have it crash all the way to the bottom. I think of that every time I walk up.
But then to turn around and see a white rose at the top of the landing. 

But then what would this be without the painting that inspired Emma's? Breaking through the waves, breathing air for the first time in years.

It feels incredible to be here, and it feels even more incredible to announce that Nightwatch will have a sequel! Tentatively coming in February 2016, I can't wait to let you all read, Falcon. It will pick up only a couple months from where Nightwatch ended. I want to tell you more, BUT, just hang in there, It will be another wild ride.
 Love to you all,
Nellie K. Neves

Saturday, September 12, 2015

Planning for the End

I had this English teacher, Mr. Sanchez, and he taught us that when we write anything, novels, essays, a love letter even, you plan for the end. Where do you want to end up? I've tried to make this a part of my life, meaning, I've always wanted to have an end goal in mind, that way I know how to direct my path. The question I've been getting most from people in my life is, are you going to write another book? The answer is, yes, of course! But many are surprised that while that isn't the issue, what to release next is the real question.
    See, I have the end in mind. I know what I want, but I can't see the exact road for getting there and it is frustrating. I was happy with Nightwatch as a first step, but my second step has been more tentative. Originally, I had planned to release Bind my Wandering Heart next, but lately I have had my doubts. While I love Bind my Wandering Heart, and I am very proud of it, I hesitate because it is an entirely different genre. It worries me that it might not be the right step just yet. I mean, imagine walking down a path and finding yourself at a river. There are stones, each numbered 1-9. You step on stone number 1 and it is solid. It feels good. Do you then try to reach and step on stone number 8, you know, the one on the other side of the river? No, that's crazy, you'll fall in trying to pull a stunt like that. Why not reach for the stone that is right in front of you, the stone that makes sense and feel right.
     Okay, so maybe not the best visual, but you get the idea. You never want to force a decision when it doesn't feel right. when Bind my Wandering Heart  came  back from my beta readers, the facts were simple. It wasn't as strong as Nightwatch.
     So where does that leave me? Well, like I said, there are more books to be read. If you follow me on Facebook, you know that I have been posting small peeks from my newest novel Caskets & Confessions. Even in a first draft Lindy is stronger than Bind. It is also a suspenseful romance, even leaning more toward a suspenseful mystery with a hint of romance. It will be a part of a series, so brace yourself for a few pieces that will carry over between books, but I promise to solve the main conflicts. I have fallen in love with Lindy, and I can't wait for you to meet her as well.
    I am bursting with one more bit of news, but I will save it until next time.
Read on, dear friends!
Love Always,
Nellie K. Neves