Bear with me, ok? I know. You’re feeling it too. It’s this whole pandemic thing, this freaking fugue state we all find ourselves in all at the same time. But maybe it’s not that either because, well, hell! My entire last eighteen months of life could easily be described as a gnarly fugue state, so there’s that but bear with me. I’m having more random thoughts.

Remember when I got that second opinion from the fancy doctor at The Cleveland Clinic and she swiped through images of my spinal cord MRIs on her iPad and eloquently described my spinal cord as riddled with damage (which at the time I translated for myself to be a spinal cord of lacy fancy Swiss cheese, specifically the Lorraine variety that tends to be pricey because of course it’s my spinal cord so, duh). Then she told me I was a textbook case of primary progressive MS and how she couldn’t imagine how it was that I was still standing let alone walking but maybe try high dose biotin?

Anyway. This whole conversation came back to me today while I was on my living room floor re-enacting some kind of twisted Lamaze class with my two therapists (one OT, one PT in what we call a “co-treatment” session). We’ve decided that my core and my rump (props to Aaron the best PT ever for bringing that term back into my life) and yes, getting me down on the floor requires two grown ass adults. Actually that’s wrong. I can get myself down to the floor it’s the getting back up part that presents significant challenges.

Anyway. Be that as it may, I was already down there and we had core exercises to perform but my core forgets sometimes that it has an actual function so Lauren, the best OT ever, was behind me straddling me while Aaron helped to lift my legs off the floor as we desperately tried to engage my core and I was in between them grunting like Serena Williams at Wimbledon and it was just all so extra I couldn’t stop laughing.

Then I remembered the whole fancy Swiss cheese conversation and it made me wonder (for a hot minute) who I was actually kidding. “There’s nothing available to us right now to fix this kind of damage,” said Dr. Cleveland Clinic. “I’m so sorry.”

Ok. But we still had bridges to do and therabands and weights to add to the mix and once that was all done I still had to get back up off the floor. “How did we do this the last time,” I asked them because I sincerely had no idea how I was going to get up off that floor. I imagined just staying down there forever. For all time. The floors are very nice. I am comfortable down there. Fred, my cat, was very confused to find me at eye level but I think he could get used to it too.

But nah. That was not to be. That was just a happy little fairytale I dreamed up in the minutes available before the hoisting would begin.

“That was so much better than last time!” Lauren exclaimed. As she said this her hand was at my waist band tugging really hard to make sure I wasn’t going to actually get down on the floor again but this time unintentionally. It didn’t feel so much better than last time at all. It felt like my thong and my yoga pants might never disengage from my ass crack. It was the worst PT wedgie ever and I’ve just spent a month as an inpatient in a rehab unit so that is saying something. God love her! Lauren was not going to let me down. Not today. Not on her watch. I felt lucky. Even with the wedgie. But I couldn’t get images of fancy Swiss cheese out of my mind.

Am I doing all of this for nothing? If my spine looks as if it had been riddled with bullets from one of those obnoxiously huge guns some idiots feel the need to own, what were the actual chances that all of this physical work would actually make much of a difference? I mean, they tell me I’m improving and I trust them. I really do. But the improvements are so slow and small and the effort so gigantic it just gives one pause as one is lifting one’s rump off of the floor with some weights balanced where the core should be.

It’s like my life is on a loop. Therapy sessions kick my ass. I stumble to bed at 7pm and try to get myself into said bed all by myself but sometimes it requires the help of my mother (who’s 80 and waiting on me) and then a little while later I inevitably have to pee so I’m gonna have to stumble drag my exhausted legs to the bathroom and then hoist my own self back in the bed and hope that tomorrow – after I’ve repeated this little series of events at least six or seven more times before morning – tomorrow maybe my legs might operate as legs should but there’s just as much chance that they won’t.

And I’ll be puzzled as to why I’m so useless and exhausted when I’ll remember…ohhhhhhhh. It was co-treatment day! You were on the floor! Remember Lamaze class and all of that rump lifting? Right. That. Sit back down.

Anyway. I’m not giving in or up or over. I’m sticking with this therapy thing until I can use my core and my rump and my hip flexors etc etc to get my entire self out of the house and perhaps to my car to take a drive (using my newly mobile ankle joints which are demonstrating so much flection even I’m impressed) and then back again and up the steps and into the house safely just like a real girl.

Then I remember. There’s actually nowhere to go!

The entire world is on lockdown and there’s nothing to do but wait it out and hope that by the time the world is open again (assuming that actually happens) I’ll be ready for it. There’s time. Holy crap. You’d think that would make me feel better but, reader, I tell you it does not. It just makes me feel pressure. Performance anxiety even. What if the world opens up again and my rump isn’t up to outside world standards?! I have a spinal cord made of fancy Swiss cheese! Who am I even kidding?

As mind fucks go, having multiple sclerosis late in life (or any time in life actually) is fairly high up on the list. This disease makes you question your own thoughts. It tears you down and laughs at you while you try to get up. It gives you bad day after bad day after bad day and somehow forces you to cobble them together to form some twisted kind of bright side mainly because if you don’t you may lose your actual mind.

Having a chronic progressive disease is not a happy walk in the park my friends. But add a pandemic to the mix, just for shits and grins, and your mind literally reels. The whole world is now on your schedule by some horrible happenstance but somehow you still might end up behind schedule. What if your rump and your core just refuse to get it together? Even when there should be no pressure there’s pressure! How does that even happen?

Mind games. That’s how it happens. The worst symptom of MS, according to a very wise friend of mine, is fear. I’d go one further and say the worst symptom of MS is that it makes you question your very thoughts. Your ability to discern what’s what. It does this by never allowing you to get any kind of footing before the next stumble (see what I did there?).

So the real game isn’t physical at all, though we get down on the floor and we do the physical things. And as god is my witness I will keep doing those things because what other choice do I have? Well that and I don’t want to let Aaron or Lauren down. They’re way too awesome for me to consider any craziness like that.

The real game is mental and right now, for different reasons, the whole world is dealing with mind games of one kind or another. Exactly how many days can a person stay inside or remain socially distant before they lose their damn marbles? The mental challenge is real. I see it on my sweet mother’s face.

This pandemic stuff is hard. It’s a giant mind fuck. Just like having MS! But wait. That’s where I started this whole thing. Or was it?