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.

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.

#FeelingSoLindy