I’ve told you this so many times I can’t really even count them. I could go back through past posts and notate specifically how many times I’ve explained how much I don’t care what other people think of me. How I’ve left my self-absorbed, appearance-obsessed vainglorious Old Me in the past because, really, what choice did I have not to? There is no way Old Me can even pretend to still exist so why bother fighting this reality?

The thing is, consciously speaking, even I believe me when I say this.

I truly believe deep down in my soul that I am telling you (and by extension New Me) the truth about how I really feel. My conscious mind doesn’t care what this disease has done to me and the way I present myself to the world. Whoever wants to judge my drunkish, slow walking, make-up free, schleppy outfit wearing ways can go eff themselves because quite simply they don’t know my life. Like Missy Elliot raps on one of my favorite tunes:

Y’all don’t really know my life
Y’all don’t really know my struggles and how much liquor I guzzle (Yes!)
Y’all don’t really know my fears
And how many years to get here but I’m ready to rumble*
Ok. I no longer guzzle liquor because, hell, that can’t make anything better on the stability scale, and I am doubtful of the positive outcome of any rumble I might find myself participating in, but you get what I’m trying to say. Consciously, I don’t care what anyone thinks of this new situation I find myself in.
If I am stumble walking or stutter-stepping or Frankenwalking through the outside world and you happen to cross my path, I’m gonna tell you that I don’t care what anyone thinks of me. I’m just doing what I have to do to get through a goddamn day in this newly fucked up vessel and screw anyone who thinks I look pathetic or sad or less than stylish and graceful and ever-so-confident and in charge of me because those people do not matter to me. Not even a little bit.
I don’t care. I’m doing what I have to do. Period. Except for one small thing. My Sub-Conscious.
That bitch that’s been living in this mortal form for about 51 years now, she is calling me on my own BS. She is telling me to look in the mirror of reality and stop smoking my own dope. Here’s how I know she’s doing this. Because she isn’t one bit subtle.
I can be ambling along, leaning on my trekking poles to steady my monstrous gait, and I will happen to see people in the distance. They could be people in the hallways of the rehabilitation hospital. Or people in my office who happen to be gathered in the center of activity that we call The Hive that stands between my office and the ladies room.  They can be complete strangers up ahead on the sidewalk or similar strangers breathing down my neck when I’m dragging my legs so slowly across pavement that I can hear their heavy steps boom, boom, booming behind me…My eyes and ears register these people, my conscious mind says,”Fuck ’em let them wait.” But my subconscious mind? She is not having it.
She sends some crazy ass on the down low secret sub-conscious messages to my brain who sends some broken ass signals down my spinal cord that then shoots some static filled mess to my limbs that cause them to start working even less well than they were working just a few seconds ago. I begin to shake. I have a buzzing in my ears that I can’t quite put my finger on. My brain starts shooting orders at me, “Don’t look up. Don’t look to the side. Don’t look anywhere just KEEP MOVING WAIT STOP WAIT KEEP GOING WAIT YOU’RE DIZZY OMG JUST FUCKING GET THERE ALREADY WAIT…ARE YOU EVEN LISTENING TO ME?
By the time she’s done, my raving bitch of a subconscious mind, I am exhausted and shaking and I can’t keep two coherent thoughts together. I spend the rest of the day cursing my stupid self for even trying to pass myself off as one of you. I feel crushed by the reality that my days of moving through life with nary a concern for HOW I would make my body move in the world of the able were absolutely and forever over.
My standards seem to be twisted in the way that they can (and do) accept you exactly as you are, imperfectly perfect and glorious in every detail but they don’t allow me to do that for myself even when I’m screaming at myself to just do it already. This is a true conundrum. When you can’t control your own programming to overcome the thing that is becoming your undoing it truly is a right damn pickle. I’m not used to not being able to control my own reality. I’m not used to this at all.
I’d like to think that merely acknowledging that this hot mess exists inside my very own self would take the power away from my twisted subconscious mind. I’d like to tell you that the mere act of knowing how wrong she is would make her have less an effect on my reality and the operation of my limbs and my brain. I cannot tell you either of those things. This stymies me more than I can tell you. I might think I’m ignoring expectations for how I should be but they won’t be ignored and my body’s reactions are proof of that reality. Huh. Not cool. Not cool at all.
So later this week I will be allowing myself to be wheeled into yet another meeting where I will be the ringmaster from a seated position. I will put on a show and I will pretend that I believe it. I will do this so well that every other person by my side and in that room will buy what I am selling. I am an extraordinary actress, it’s one of my favorite talents. The only person who is unlikely to buy what I’m selling is my Subconscious Self. She will call bullshit on me almost from the beginning of the whole charade. She will do this so effectively that my body will likely be rendered pretty much useless for the two and a half days that it will take for the entire charade to play out.
This meeting is happening 4 hours away in Washington DC. The entire team from my office will be driving to this meeting because I can’t figure out how to get there on an airplane while also getting my various mobility devices to my location along with me. I am toting a transport chair (because I haven’t yet figured out which portable motorized wheel chair model will work best for me and my independent woman lifestyle wherein I will have to lift this device into and out of various other vehicles when traveling). I am toting my trekking poles and maybe even a rollator along with my overnight bag because in this state of in between I may need one or all of those things to help me get around. It’s really anyone’s guess how my body will behave at any point in time during this adventure.
We’re all driving to Washington DC because I need to be driven and once it all gets underway I didn’t trust myself to be the driver, too. I did what I do now. I sucked it up and asked for help from people more than willing to help me. I’m not crazy about this idea but conscious me knows it was the only way this time. Conscious me is very realistic.
Once I get this mobility device hijinks figured out, it might not be this complicated to get myself from city to city when work requires it. I’m sure once I am in possession of the appropriate mobility aid line up, all of this will be far less complicated. But, geez, I just accepted the fact that I need more than one mode of transporting myself around like a week ago and I’m still in the research mode of that journey. I haven’t acquired my full array of devices yet! I’m looking at my living room and trying to find a corner that I can designate the parking/storage area for my line up of “what if” mobility tools. I feel like I may need to build myself a tiny garage for all of my various portable mobility devices required to get myself around in the outside world full of the Ables.
Because that’s another thing I was wrong about. The mobility aid progression used to look very linear to me. It was a sequential path. You started out not needing anything, like me circa early 2016. I might not have been super steady on my feet but I got around pretty much ok I just kept myself in situations where I didn’t have to go all that far, held on to a lot of walls and random strangers when necessary, and things were generally good. Then I gave in and got Stanley, my cane. Stanley was sleek and discreet. He was my first step down the path to the wheelchair I was told I’d probably never need.
The path to the wheelchair that I thought I was on looked like this: First the Cane, then the Trekking Poles, next the Walker, on to the Rollator after which I would “end up” in a Wheelchair. One “ends up” in a wheelchair, one doesn’t start there. Except for sometimes one does when one can’t walk far enough to actually perform one’s duties in life. Sometimes if you can’t walk say more than 50 feet, maybe a hundred but not much more, you need a wheelchair even though you CAN walk!
That’s another thing I think I believed to be true that turns out not to be true at all. That is the reality that most people who use wheelchairs actually can walk. I didn’t know that! I thought wheelchairs were reserved for those of us who cannot use their legs at all! Why did I think this insane thing? I cannot tell you. Maybe that, too, was embedded into my subconscious mind such a long time ago that I can’t remember it! Jesus. It kind of scares me to death to think what else might be lurking in there.
I’m sure before this whole acceptance thing is over I will almost certainly be finding out. All of the things we ignore, the silly ideas that lurk way down deep, they’re still there even if we refuse to acknowledge their existence, even if we think we’ve left them behind years and years ago.
Once I procure my portable motorized mobility chair, there is no guarantee that I won’t go back to using Stanley – or Laurel and Hardy (my trekking poles) or Nitro (my current rollator) or Clara (my new and yet to be delivered slimmed down, lighter European-designed rollator that should be here on Monday. She’s Danish so she needed a Danish name).
Depending on the life situation I find myself in and depending on the state my body happens to be in as well – which can vary based on factors so random and unpredictable like the weather and goddamn barometric pressure and what I ate for breakfast that morning or any, all or none of those things.
The state of my body is in constant flux without rhyme or reason. I am coming to see that that is the one thing I will be able to count on in this, my so-called MS life.
And so it goes. Got wheels. Will travel. Or something like that?
* All credit to Missy Misdemeanor Elliot and her awesome song “My Struggles,” lyrics © EMI Music Publishing