2014: Chapter 1.1

I've been sick for over a week. Miserably knock-me-on-my-ass sick. My throat felt like I was swallowing razor blades. I couldn't sleep. No food appealed to me. And this cold sent me off into some dark places. I was completely fatigued. Razor throat has left me weak from hunger. My thoughts are not nice to me when I am in this condition. I go to dark places.

From time to time, when my son is over-tired, he tells me that he is having bad thoughts. Then we will sit and snuggle and talk about happy memories. I get bad thoughts too. But no one is usually around to guide me out of dark places.

I was done. Done with everything. I was surrendering. I was going to quit everything and stay home and binge-watch Netflix. I was giving up derby and boxing, thinking that the couch I was curled up on was the perfect place to live out my days. I hadn't been on skates for almost two weeks. I was feeling quite defeated. My thoughts were betraying me. In fact, betrayal was abound. And I was not only burdened with these feelings of loss, I was fighting the fear that I am now damaged goods. I was terribly lonely. And who in the hell would sign up for life tainted by this MS nonsense? Why would anyone want to be part of all this?

I've annihilated my immune system in the hope that it will stop attacking my brain. I'm not sure that is why my cold was so bad, but I have a hunch it didn't help. I was just downright, old fashioned blue. I had made all these goals for 2014. Two weeks into the year, and I was already failing. I was already climbing out of the pool. Abandoning the notion of ever catching the beach ball. In fact, I was plotting ways to just puncture the damn thing. Then, even if it could never look like I wanted it to look, that ball could never float away.

But this morning, I woke up feeling better.

The first thing I noticed was that I actually had to be woken up by my alarm. I don't remember the last time that happened. And when I was brushing my teeth, I noticed that I drank my cup of water with nary a flinch.

And little things happened that are starting to add up to me being in a better place. Derby girls are encouraging me to get back on the track. Sara is back from her travel adventures. I so missed her. And she has also offered to skate with me. I think I have the energy to pound on a heavy bag. I know for sure that I have the desire to punch on one. My work is feeling like I have a firmer grasp on it. Kidlet seems happy.

I'm getting things back on the rails. It was a short delay, and it's over. Onward ho! But it is a little scary because I don't know what is ahead of me a mile down the tracks. I'm the kind of person that reads the end of the book first. It actually enhances my enjoyment. I know most people don't understand that. But some of you will know what I mean.

I want to know how it's going to end. I want to read the end of my book. I can deal with whatever it reveals. I just want to know. And I can't.

A year ago, I thought I knew where I was heading. Then things started tilting for me. I had my hysterectomy, which was a much bigger ordeal than I had thought it would be. Someone I thought I would know forever moved away and is fading from my life. My eye started to spark, alerting me that all was not well. I was introduced to the claustrophobia of the MRI machine. I learned to give myself a shot. I have weekly fever chills. And there are sharps containers in my house.

This was not what I wanted. This was not where I wanted to be. But... here I am. And, I'm OK.

I'm OK that it might take me twice as long to get over a cold than a year ago. Because I was just reminded that I can get over it. I know it will take me a long time to improve my skating, but I want to. I so, so want to. And I was reminded that a lot of people want to help me succeed. It will take me a lot longer to get over the loss of a love. But, these are the losses that make it so clear who belongs in your life. And who should not get that privilege. And that is important information.

These occasional times of being off the rails are actually quite valuable. Sometimes dark places bring clarity. They give you the glimpse of what you want to grab on to. And what you need to let go of. And damn it, I want the beach ball. I deserve it. And I don't have time for anything or anyone who doesn't help me get it.

So I hereby announce a restart. The last week is just not going to count. This week, 2014 begins again for me.

Head Games

I am too in my own head lately.

For the last couple days, my hand has been bothering me. I have no better description of what is going on with it. It doesn’t hurt. It doesn’t quite tingle, and it doesn’t quite itch. It feels a little like it burns, but not really. Just kind of? Something is just off. I am way more aware of my hand than I ever remember being before.

And that is why I am in my head. I keep thinking the following thoughts, often simultaneously:

Should I call my doctor? Should she be aware of this? Is there anything she can do? Will I want to do what she recommends, which might very well be an IV infusion of steroids?

Am I coming down with a cold? Are my small aches and weird tingles the sign of an impending illness? Am I exhausted because I am coming down with something? Does my throat feel scratchy? Is it possible that I am tired because I have been running around all week without much rest?

Has my finger always had this vague sensation? Have I always scratched the backs of my hands out of habit instead of itchiness? Is there really a rogue hair attached to my finger that keeps me searching for the source of the tickle?

Do people without MS experience these things? Is this just the “normal” human condition? Have the times I have experienced this in the past been a typical and universal experience of our species? What is normal?

I so miss the days, not too long ago, when I didn’t know I had MS. I miss how things were. If my palm itched, I scratched it. If my foot fell asleep, I stood up and stomped on it to get some blood flowing. If I had trouble reading the PowerPoint presentation projected on the screen in the conference room, I put on my glasses.

My life has changed. And it will never be the same as it was before. Not only that, but this diagnosis has struck the one chord—stripped of myelin—that causes the most anxiety and angst in my life.

I’m the type of person that likes to know how things end. I read the end of the book. I look up spoilers on the Internet. Knowing the ending actually enhances the pleasure of the experience for me. I was the type of kid who, when given a Choose Your Own Adventure book, would start at the back and reverse engineer my choices to make sure I never turned the page to read “You have died.”

I know in my hole-filled brain that no one on earth gets to know the end of their story. Not really. There is the often funny, often cruel force of Chance that is active in every human life. I am not guaranteed the next 20 minutes, let alone the next 20 years.

But I thought I had a road map in front of me. A rough outline of where I was going and what I was going to do. That map has been wadded up and tossed out the window. I have to re-figure out a lot of things I thought I knew. Like if I am experiencing an itch or a relapse.  I need to figure out when to tough it out and when to call it in. I need to learn when to push through or pull up. And when to hold tight when to let loose.

But I still want to know how it ends.