It’s a good night to talk about terrifying things, right?

No. I’m not talking about creepy baby dolls or marionettes or ventriloquist’s dummies or even movies about satanic possession or evil devil children. All of those things are enough to freak me out, no doubt, but I’m talking about a different kind of terror. I’m talking about the kind of terror that hits you in hindsight when you realize important things have been happening to you because of your spinal cord made of fancy swiss cheese in the last year or so without you ever really facing them head on. I’m talking about kind of terror that haunts the days leading up to Round 2 of your MS treatment that should be happening in a couple of weeks or so as I await insurance approval for my Lemtrada infusion days to be scheduled.

Round One leveled me. I went down and never bounced back. I went from cane to rollator to wheelchair so fast I haven’t really allowed myself to focus on it for very long because it’s much easier to keep thinking of these bad days as just bad days and not BAD DAYS, if you know what I mean.

Facebook memories are helping me keep track of what this MS journey has been like for the past 12 months. A post from my Facebook memories with a picture of my cane, Stanley, from this time last year reminded me that before Lemtrada round one the week of November 5, 2018 I had been just starting to use a cane inside of my house. I was still mostly able to manage super short distances by holding on to walls, furniture and the occasional friend. I could walk around my house and feel pretty normal, somehow. I didn’t worry about making it up the stairs in time to pee. I didn’t love steps, but I didn’t hate them either. I was firmly in rollatorland in the outside world, don’t get it twisted, but I rarely even took a rollator inside of my house.

Today I had to break down and use my motorized wheelchair inside of my house.

I’m that bad on this chilly, rainy Halloween night. I have yet to brush my teeth or get out of my pajamas because I had an early-ish conference call this morning and I didn’t wake up quite early enough to accommodate my completely dysfunctional legs. It was raining when I woke up. That was the only external factor that might kind of explain my shitty legs and I didn’t have time to question it beyond that because there were cats to feed and calls to dial into. I’ve rolled to and from the first-floor facilities (aka my godforsaken dining room potty chair) a couple of times today and it hit me after the second time that this was likely to be one of those days that Facebook reminds me of next year at this time that I posted about using my wheelchair in the house today for the first time out of necessity and not for driving practice and I will be hit by the terror in my heart that hits me every time:

Was I in the good old days all of this time and I didn’t even know it? Am I going to look back on this random picture posted on this random day and realize that I was seeing the beginning of the end of another phase of my MS progression and I didn’t even realize it?

Well not if Facebook has anything to say about it. I now have a running timeline, created by me no less, to document my decline. When I reflect back on the pictures I post after the installation of my shiny new stairlifts (because you know I’ll be posting those pictures on November 6 the second the workers are gone from my house), will I be sadly looking at that picture a year from now from the comfort of my newly acquired one-floor dwelling? Jesus. I really hope not but after this past twelve months I can’t quite write that idea off as not possible, can I?

My so-called-MS-Life has proven to me in the past twelve months that things can change so much faster than I was ever led to believe they could or would.

The terrifying things that happen to me now are things I couldn’t imagine twelve months ago. I never imagined my spasticity would get so bad that I’d have to wear furry socks with no-skid bottoms on them to sleep each night to not only keep my feet from freezing but to also keep my legs from skidding straight out in front of me on my super-high-quality but rather slippery sheets so that I am unable to bend my legs again at all. The panic that ensues when this bizarre thing happens is almost impossible for me to describe. The terror of thinking you can no longer move your legs to get out of your own bed by yourself (when you actually live by yourself) is debilitating. Even if it only lasts a few minutes until you can somehow roll your dead legs to the edge of the bed and pray they will bend at the knee once you finally get there, those are the most terrifying minutes of your life.

I don’t know, friends. I don’t think I will be able to deny or act remotely surprised at this time next year. That will be extra hard to do as my home is transformed into a handi-girl version of an amusement park. Bethywood, as my sister joked to me the other night when I told her my multiple stairlift installation date was nigh, like Dollywood but for old women who need rides to get up and down the steps in their formally swanky bachelorette pads. I will see the very tasteful but undeniably THEREness of the brushed nickel grab bars that will ensure that I won’t actually get stuck on my toilet some night when I wake up 75 times to pee. It is not easy to find stylish grab bars but I did my best. When I look outside my front door I will see the ramps that keep me from getting my neighbor’s heads stuck against my behind without even a drink first. I won’t be able to deny any of this. It will be very much there for me to see without much effort at all.

If this round 2 of Lemtrada leaves me even more physically debilitated than round 1 at least I won’t have to worry about what to do when my legs stop lifting up at all when I stand in front of my stairs but that’s not going to make me feel much better about it. I know all of the doctors seem to agree that this terrifying round 2 for which I am awaiting insurance approval before I can schedule is without a doubt the right thing to do. I need to protect my pristine and beautiful brain, they tell me. I have to say that is a goddamn motivating message to say to someone like me who is more and more coming around to the idea that there are worse things in life than not being able to walk.

The most terrifying idea to me, on this night of terrifying things, is the mere notion that my brain might somehow give up the ghost and leave me unable to do the things I really love. Things like working. And writing. And writing. AND WRITING.

Anyone who knows me in real life, and many of you who don’t, can attest to the fact that I never much liked walking in the first place. In fact, I’ve mostly always hated it and I promise you I’m not just saying that to make my stupid legs feel less ornamental. Any member of my family and most if not all of my friends will back me up on this. Remind me to tell you the stories sometime about that one ex-boyfriend I had for those couple of years when I talked myself into getting outside of my comfort zone by agreeing to try new things.

I’m talking about things like hiking in the actual woods; riding on the back of a tandem mountain bike on single-track trails also in the actual woods (no bike should ever be that long! It’s against the laws of the goddamn Universe!); getting into a kayak on more than one occasion… And could we ever forget the time he convinced me I liked running?!? Like running just for fun and without being chased by authorities for stealing a Chanel backpack? The running that left me with permanent damage to my ACTUAL FACE causing me to remember this terrible time in my life every time I look in the mirror at my left eyebrow and vow to never, ever, EVER think about doing that shit ever again? (And yes, I’ll leave it to you to determine if I’m talking about being outdoorsy or dating or both.) And I still scour eBay looking for that damn Chanel backpack but that’s a different story for a different day.

Yes. The kind of running that doesn’t end with luxury accessories is the kind of running I hated. I hated that running a lot so there might be a quasi-silver lining in the form of no more permanent facial damage if I can actually never run ever again.

I don’t focus on these less terrifying aspects of acquiring a chronic, progressive disease nearly enough.