Saturday, March 1, 2014

Brave

Sometimes you have to trickle down through a whole lot of messy to make it to brave. And sometimes that's a very slow and scary process--not knowing where the messy's going or how it's going to play out. Sometimes it seems like it would be a whole lot easier if it was the other way around; starting off brave enough to deal with the things that follow. But life isn't like that. So, I guess all you can do is wait for the brave.

Wednesday, February 12, 2014

Going it Alone

The other day I registered for the Run MS race. Seeing as I've done lots of races in the last two years--wow, that sounds really weird--it should have seemed like just one more. But as I filled in the registration it didn't.

I got to the section that asked me to indicate whether I was forming a team, was part of a team, or running as an individual. I thought about it for a second, and then marked the box for individual. It was the first time I'd checked that box since I started this whole running adventure. It wasn't because I didn't want to run with any of my partners-in-crime. They are the best part of my running. No, it was about something bigger than that.

One of the things about MS that has always bothered me is the fact that it often makes me rely on other people. I don't like that. I'm independent--always have been. I don't want to admit that I can't do something. I don't want to ask for help. Some would say I'm a bullhead.

So this race in particular is about proving something to myself. A kind of big up yours to this disease. It was me and MS. Head to head. Mano a mano. So you are all welcome to come cheer me on, but this time I'll be out there alone. This time it's personal.

Friday, January 31, 2014

A Letter to My Newly Diagnosed Self

It's been almost 13 years since my world turned upside down with one phone call. Looking back, there are so many things I wish I would have known then. So this many years later, I wish I could go back and share what I've learned on this journey. If I could, this is what I would say:

Dear Me,

I'm so sorry. I know you're world has been rocked and, if I'm being honest, I have to say it will never again be the same. I don't mean that to scare you, but the reality is that you are now different. You will forever see yourself through the prism of your MS. It will be your constant companion. You will wonder at some point every day when and if this unpredictable disease will rear it's ugly head. You will stress over being confined to a wheelchair. And yes, you will at one point or another think about whether or not you will die from this. STOP. Those things are not a done deal, and stressing over what may be will use up a lot of energy that you don't have to spare.

Speaking of energy, get ready for fatigue like you've never imagined before. And I'm not talking normal fatigue. It's "I can't get up and walk to the other side of the room" fatigue. It's "I just slept 12 hours and feel like I didn't sleep at all" fatigue. It's "who put 20 pounds ankle weights on me when I wasn't looking" fatigue. People will say they understand. They don't, they won't, they can't. Just nod your head and smile. There's no way to put what you'll feel into words. You will mourn the energy you once had. Again, I'm sorry. I wish I knew what to say, but I still don't have any good answers.

You will become very familiar with the MRI machine. Try asking them to put something over your eyes before you go in. It helps with the claustrophobia. Trust me on this one. Oh, and don't bother with the headphones. You won't be able to hear anything other than the banging and buzzing anyway.

Most importantly, ask questions. Ask for explanations. Research. Seek out help. It's all out there ready for the taking. Don't be afraid to use it.

Wow, there are so many other things I could tell you, but I don't want overwhelm you. You'll figure it all out in your own time.

NOW, having said all that, listen very closely because this is the important part. You've got this. You will discover that you are way stronger than you ever imagined. You will learn to embrace the freaky MRI pictures of your brains. You will get to a point where sticking a needle in your stomach, thighs, hips or arms no longer makes you flinch. You will learn to fall and not get hurt. You will learn to laugh about all of this. You will do things you never thought you could--even before your diagnosis. You will be awesome. Hang in there. It's going to be OK.