It occurred to me today that I’ve not written a post in some time. It also occurred to me that it’s the final day of MS Awareness Month and I’ve not done my part yet to bring positive attention to this disease and its affects.

I’ve been on a bit of a downward spiral, you might call it, physically speaking which has clearly led to a similar descent into bad-thoughts-land mentally speaking, and thus a complete and total lack of inspirational thoughts. A dearth of positive insight. A scarcity of actual words – a state in which I rarely find myself . Words are my thing! Where are the words?

So, in the spirit of the final day of MS Awareness Month I am offering this observation about life with multiple sclerosis and the effect it has on words, phrases, colloquialisms. Phrases that I used to take for granted but now make me feel like a liar nearly every time I open my mouth!

I need new terms, every day life terms, that replace the standard phrases that pop up in everyday conversation. Things pretty much everybody says! But now when I say them, they sound all kinds of wrong. While I’m in this particular nasty MS phase, I need to figure out new standard phrases.

So I’ve made a handy list. You’re welcome.

I have to run a few errands

The word “run” gets a lot of play in the average person’s vernacular. “I have to run a few errands” is just one of the uses I used to bandy about with reckless abandon. I have to run to the bathroom. I’ll run out and grab some champagne. I’ve been running myself ragged. I have to run! My wildly social gang of girlfriends is waiting for me to be the life of the party at our favorite bar (they’re gonna be waiting a really, really long time, but roll with me here).

The thing is, I don’t run anywhere. I could say “I have to walk to a few errands” but that isn’t entirely true in most cases. I would have to say something like, “I have to choose my walking aid, carefully get myself to my car, arrive at the dry cleaner, remember I brought the trekking poles and not Stanley, so I have to hang the bag of my dirty cashmere around my neck after putting the backpack of my other things on my back, then I will stutter step, shuffle, move-so-slowly-I-may-be-going-backwards and likely stumble a few times toward my errand.”

It doesn’t just roll off the tongue.

It’ll take me a second

Here’s the thing…Nothing takes me a second. I might ask you to give me a minute even but that wouldn’t be close to what I need. If I need time between doing Thing A and Thing B, chances are it might be more like 10 minutes. Depending on what Thing A and Thing B actually are, it might be 15 or even 20 minutes. I say “give me a sec” all day long.

I’m a damn liar. I need so much more than a sec.

I got it

I probably don’t. I’ve said this in my own home, for example, clearing up dishes from one room, taking them to the other, thinking it was a perfectly reasonable thing to say. We all know what happened next…BOOM. I didn’t have it. I really wanted to have it but my wonky body decided on another course of action.

I used to say “I got it” all of the time. Because I usually did! Now, it would probably be more accurate to say, “I might be able to get this, but don’t freak out if I end up face first on the hardwood and yes I do want to try anyway.”

Again…awkward

I’ll be there

Life requires us to make commitments. Work, in particular, usually requires things to happen in a particular order in particular places – even particular geographic locations (don’t get me started about the particular clothes). Social functions too! Being social, of course, involves more than one person being in a particular place at a particular time usually agreed upon in advance. A few minutes in advance, at the very least.

There is more than a 50% chance I won’t be there if we’re talking a social function that I really want to attend. The odds move to 75% if it was something that sounded good at the time but when I thought about it again, suddenly felt like a ton of work. If I didn’t want to go in the first place there is 100% likelihood of my absence. Of course, this happened long before I had MS but it still happens now so it counts.

There’s a 95% chance I won’t make it if we’re talking work functions that involve flying to another location and arriving in optimal shape for existing among other humans.

I prefer functions that allow me to drive up (I really love driving), score a great handicapped parking spot, and lurch-walk the shortest distance possible to make it to my destination (preferably without a damn audience). The odds improve to about 85% in favor of my being there if those things can happen.

But let’s be honest. If I wake up and the world is spinning and I can’t move and I have to call family for help and maybe eventually an ambulance to the hospital completely unplanned – I might not make it at all. This has happened on a random Wednesday, yes it has, but it hasn’t happened when I was expected at a critical work function. Yet. But it could. So while I love being the girl who everyone can rely on to be there, there is always a chance I won’t be. Always.

Maybe I should say, “I’ll WANT to be there!” It lacks enthusiasm. It feels less zingy. It feels namby pamby and wishy-washy. But it’s true.

I’m good!

I’m so not good. But I say I am all day long! What would I say otherwise?

I’m holding it together by the skin of my teeth. I’m not even sure I have underwear on. Or deodorant. I’m sure something hurts whether it’s fire in my upper back that randomly comes upon me or an ache in my lower back because I’m not standing up straight while shuffle-drag walking in the outside world. If I’m standing when in the situation where I would say these words I might feel like I’m about to fall over because my legs are weak from standing too long but I didn’t want to sit for too long because then it gets hard to get up and I look like I’m 120.

If I know you at all, and you know me at all, this statement usually evolves into, “Eh, I’m here. That’s half the battle right?” Well, it’s half the battle for me. Not entirely relatable for a good portion of the population. Relatable for some, definitely, but not everyone. It’s a conundrum in social situations.

So I’ve decided just to enthusiastically say, “I am!” Because I am. I am, there. I am in existence and I’m gonna do my best to continue being such. (This will totally not work.)

I feel MS Awareness Month has been a huge success for me because I have been 100% aware and completely entrenched in the experience of what having MS can do to a single spoonie like me. I feel aware to the core of my being. I’m so aware, I dream about my life with MS. It invades my sleep as much as it invades my daily life.

I’m hoping that in the coming months, once I see The Great and Powerful Scott (my neurologist) on April 17 and get my third Ocrevus infusion (April 23, folks! Mark your calendars!) I will happily begin to become less aware of my particular multiple sclerosis.

I’m hoping that April starts my own personal “Not-So-Aware-of-Multiple-Sclerosis Month.” I will create the hashtag. It will become a thing. I will revel in it. I know I will because you told me so and I believe you. You are very wise, not to mention smart (and pretty). I’m going to believe that my very own special “Not-So-Aware-of-Multiple-Sclerosis Month” is on the way. I’ve stated my intention to the Universe!

I’ll run a few errands in a second and I’ll know I’ve got things taken care of. I will be there and I’ll be good (and no longer a lying liar). I’ll probably get on your nerves because I’ll be so on top of life. Get ready for it. It’s gonna happen.

Or it won’t. And that will have to be OK too because it WILL happen eventually. One way or another.