/ Multiple Sclerosis

A Survivor

Three years ago I walked into my garage with a swagger in my step. I keep my punching bag "Evie" in the garage, and I planned to have one heck of a kickboxing session. I can clearly remember how cocky I felt. A few days before I'd gone in for my yearly MRI, routine business when you have MS like I do, and with no news yet, I assumed life was business as usual. My husband had been telling me for weeks that there was something off about me. Hence the cockiness and swagger. For once, I was right.

At least, that's what I thought.

I pulled out my phone and shot a picture of "Evie" looking all slender and challenging in the morning light. I had every intention of archiving this moment in time where I was right and he was wrong. I wrote the words "Some days I walk into the garage like, 'hey baby, what's up?'". I specifically wrote those words because it irks my husband when I say it to him. Being me, that makes me do it way too often, and it felt like a victory chant in my arrogant moment. As I started to type in appropriate hashtags, my phone rang. It read Kaiser Permanente, so I knew it was my doctor. Likely with my good news of a clean MRI. I answered with a quick "Hi, this is Nellie."

My neurologist wasted no time. "Nellie, you're in full relapse. I'm setting you up with steroid infusions tomorrow. If I could get you in today, I would."

I must have been quiet. Funny how those words could not only take all the wind out of my sails, but crack a hole in my boat to boot. I remember I said something like, "But I feel fine." Ironic, I know, since that's one of the number one phrase I hate hearing from people when I tell them I have MS. "But you look fine."

That's the thing about this disease, you can't always see it. My neurologist explained that most of the damage had occurred in my frontal cortex. It explained my personality shifts, my inability to make decisions, the constant disconnect from reality that made me feel like I was living in a fishbowl. I'd assumed depression. But no, the monster had gotten loose, and my brain became his playground. My Instagram post ended on entirely different note that day.

April 1 marks day 1 of CampNanoWriMo. 50,00 words in 30 days. And in 2016, I wasn't about to let some infusions slow me down from my writing goal. My first infusion of Solu-mederol took 2 hours. I used that time to hand write all my necessary words for CampNano.

Day 2 they put the IV in my right hand. Writing became a left handed project that day, but I didn't stop. Day 3 I was shaky. I had a bad reaction near the end on day 2 with my pulse getting erratic. I told the nurse on day 3, and she decided to get me out as soon as possible.

That was a bad idea.

I finished the steroids, but ended up tachycardia and bradycardia (High blood pressure and low pulse) at the same time. The doctor who came rushing into the room had never seen it before and couldn't explain it.

I'm all kinds of special I guess.

But I got my words in before the episode, so even while the steroid tried its level best to kill me, I stayed up on my word count.

"I was a warrior. I had always been a warrior, but with all the marks that proved my survival, I actually felt it." 

I transcribed all the pages later, 19 in total, though only 2 were from the day I wrote with my left hand. I remember looking at the pages in my hand and feeling some pride that the monster hadn't been able to stop me. Cracked hull in my boat, but somehow I still floated along, albeit it a much humbler boat... I considered keeping the pages, but once transcribed they had no practical purpose. I tossed them in the trash and moved on.

"Moving on" was trying to keep my heart beating. Doctors still don't believe me that the steroids messed up my heart, but it was fine before the nurse double timed my meds, and somewhat broken after so... but I digress.

I tried running and fell after two steps. Walking became my only option, and even that was slow.

MS can steal everything in the blink of an eye. You can go from running 8 miles to hardly stumbling through 1 in less than a week. It's an awful reality I try my best to ignore, but time and time again it rears up in my face.

One day while I was out wishing I could run, and doing my zombie walk at a glacial pace instead, the trash man drove by. I made room because let's face it, he's bigger and faster, and I waited for him to pass. As he drove by, the back hinge was still closing. A few papers freed themselves and fluttered down to the street. I'm not a huge environmentalist, but I hate littering. I've been known to come back from a jog with my pockets stuffed full of trash I've picked up on the side of the road. I zombie shuffled my way over there. The first piece was just a potato chip bag. Then there was a candy wrapper. But the last piece of trash wasn't trash at all. It was the left-handed-writing-notebook-page from my time during infusions.

Now I'd love to have some "oh my gosh it must have been stuck there for weeks until angels jarred it lose and it floated down in front of me at just the right moment" kind of epiphany.

And it might have been.

I'm not ruling it out.

But, it's just as plausible that my husband had tossed my office trash that morning instead of weeks before. Either way, it still felt miraculous that I happened to be there at just that time to grab it.

I stared at the messy, hard to read, not legible to anyone else, writing all the way through my 1 mile walk around the block. I tossed the wrappers, but kept the left handed sheet.

Now it may sound dumb, but that sheet was proof that I survived. I don't think I could ever explain to people what that month had felt like. Starting at that cocky I feel so good nothing can touch me, and then to free fall to the depths of the nights after steroid infusions where I literally prayed that I could  make it until morning.

I sat in my daughter's room one night just to touch her cheek one more time because I wasn't sure I was going to be alive when the sun rose.

I fought hard.

I prayed harder.

I was reduced to what felt like nothing-a breath of who I'd once been.

That relapse left scars, scars no one can see but me, like the way rock holds the secrets of the eons in its layers. But through it all, I didn't stop writing. I didn't stop fighting. I didn't give up. Maybe it's silly, but that's what I see when I look at this paper.

This past year has been a year of self doubt. Wondering why I do this crazy job. Why do I write? Why do I open up my heart, just to be hurt? So far, my only answer has been that I can't seem to stop writing. It fills my veins like my blood. Then I found this sheet of paper the other day and stared at it, remembering how far I've come in two and a half years. Even the paper had survived quite a bit. A few trips to the hospital. A garbage can. A garbage truck. Two moves and the endless abyss of my filing cabinet...

And I had an idea.

A note to myself. Like a whisper from my past

If even a relapse couldn't stop you, why give up now?

What is it that you love? What keeps you moving?

My family is number one in my life. My faith is right there with them. But my writing is deep and ingrained in my heart. I don't write for the accolades (good thing because I don't really get those...) I write because I am a writer and nothing will ever change that. I have stories to tell and I plan to keep telling them.

You'll feel it when you read Sparrows & Sacrifice. You know I can't say much more than that, but because of the state I was in when I wrote it, my soul bled all over the pages. Open wounds are like that. It might be why it's my favorite out of the series. I can't wait to put it out there.

Thanks for listening.

Thanks for reading.

Thanks for being here.



My gallery wall is coming together quite nicely.
A Survivor
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