Before recent years, I would have told you transformations are my jam.

I mean, one look at pictures of me through the years and my hair proves my point. I can never stay the same for very long. I get bored. I crave change. I’m not sure why, but I’ve always been like this. Whenever I’d eventually get what I thought I wanted, I’d realize it wasn’t that thing at all but something different and off I’d go chasing after the new thing. Transformations are my jam.

Until they take too long.

This whole MS experience is a study in things happening way too fast and not even remotely fast enough. My downhill slide seemed to begin the minute I’d started my first treatment (Tysabri, for those just catching up). The speed at which I was slowing down was a bit dizzying. Turns out that transformation is my jam and so is irony.

The fast slide to slow has been going on for two and a half years now. Nothing seems to slow it down. I remember when I first met The Great Scott way back on December 29, 2015 he told me I’d probably  be 70 before I even needed a cane and treatments had come so far that there was no reason not to be optimistic. I liked what I was hearing. I liked it a lot.

Here I am a little over two years later and let’s just say those words haunt me a little. I’ve done canes, trekking poles and now rollators. Yes, plural. I’m considering some kind of motorized chair or scooter or something to help me do more – mainly as it relates to my work because not being able to walk more than 100 feet or so tends to make one less than useful out there in the real world.

And once again I feel myself hurtling toward a slow life full of mobility aids at the speed of light. Hurtling toward slow. Flying toward standing still. Zipping down the path to inching forward, back and all around.

I have to tell you, I’m struggling with this. As if you didn’t already know that.

It’s not about the issue of the appearance of disability anymore. It might have been about that at the beginning but what I see when I look in the mirror these days is nothing like anything I used to see so I’m pretty much over it. I don’t even care what I look like anymore. I don’t care what you think I look like, either. My life-long appearance obsession went POOF over the course of too many bouts with high-dose steroids and too much sitting on my ass because I was too weak to move around much.

It’s more about feeling like I’m somehow not suited to do the things I’m expected to do. The things I expect myself to do. The things I used to do without even trying. These days? I do literally nothing without trying very, very hard. I’m trying when I’m trying not to. I’m fighting this even when I tell myself I’m not.

I’m halfway through my 30 sessions of PT and I’m definitely improving. Melissa, my physical therapist, gleefully recounts my gains week to week. “You couldn’t do that when we started,” she chirps. “You’re doing so great!”

As I stumble back to my mom’s car at the end of my session, wheeling Nitro my rollator ahead of me like an old pro, I don’t feel like I’m doing so great. I feel like this is taking way too fucking long for the amount of work I’m doing. It feels like an exercise in futility to work so hard to gain a hundredth of a second on my time, or a few more bars on the balance machine. I know this is not the way to look at this. I know this is terribly negative and all of the progress I’m making is meaningful and worthwhile and what I need to be doing. I won’t stop doing it. You know I won’t.

But I’d be a liar if I didn’t admit that I’m pissed the hell off that my path to some kind of better is so much slower than my luge ride down the path to disability. It seems so…wrong. It makes me feel delusional. I feel delusional for allowing myself to believe that I could still live my old life with a few tweaks and just enough determination if I just tried hard enough. If I just worked hard enough, it would be OK. Things would be OK.

I guess things are generally OK but I feel like I’m that mosquito frozen in amber that they made the dinosaurs out of in Jurassic Park. Frozen in time, while time keeps speeding up all around me. Our way of life, we Americans, is not about going slow. Our way of life is about how much, how fast, how big you can go – moving forward, never looking back, always gaining more never slowing down.

I’ve slowed down. I’ve slowed down a lot. The world, as you might expect, has not.

Melissa and I did a walking test at one of my last sessions where I walked as far as I could for six to ten minutes. I had Nitro, so it wasn’t deadly, I could sit down anywhere along the way. But it was something I’d not done much of in the last couple of years, walking any further than a few dozen feet. Endurance walking through the halls of the rehabilitation hospital filled me with dread. The hallway felt like it kept getting longer and my legs kept getting weaker. When we made it back to the outpatient PT room, Melissa could see how tired I was. “Take a seat. You need a rest. That was 569 feet. That’s amazing.”

“It doesn’t feel amazing,” I scowl. “It feels pathetic. But I’m gonna take your word for it.” Melissa laughs at my jokes even when they’re not funny. She’s a master motivator. Nothing will get that girl down. No way, no how. No matter how hard I try. And you better believe I try.

My exercises are getting easier and my muscles are getting stronger but this isn’t translating yet into my real life in any real meaningful way and I’m just feeling some kind of way about it.

Life is running out of patience. Things are changing in my real life, the one with work and stress and money making and career growth. They’re starting to change again. This never bothered me before. Hell, I chose a career where the only thing that is constant is change. I help companies transform. I fix big problems. I help people get better. I do all of those things while standing on one leg and spinning plates over my head and being delightful. Change is what I do. Transformation is my jam.

Until it isn’t headed in a direction that pleases me. When that happens, transformation becomes my enemy. I’m not sure I like what I’m turning into.

I almost slept through my pedicure this afternoon. I nearly perished while attempting to change the sheets on my bed. I am so tired from doing these small things that I’m already dreading tomorrow when I have to do that thing that is most grueling…and yes. I’m talking about taking a damn shower. Sweet Jesus. Who’s life is this?

There have been other times in my life when things changed so fast, so violently and with such extreme consequences that it left my head spinning. I remember those times vividly. I wrote about them to myself, daily, so I wouldn’t forget. I told myself I would never forget that most basic lesson of life. Nothing lasts forever and every day is a gift. Don’t squander any of it! It might not be there tomorrow or in a few hours or in the next ten minutes.

My broken brain is taxed by going so fast, and so painfully slow, all at the same time.

OK so this can’t be where this post ends. So I will share a few amazing things that have happened recently. First, I had my life changed by an electric razor. Mind blowing, right? Part of why showering is so hard and so stressful is that it’s not just about getting clean. So procuring myself this relatively banal appliance is quite literally life changing.

Nitro, as much as I bitch about her, is quickly becoming one of my favorite things. So much so that I am getting another rollator that is smaller and lighter and much more suitable for running around with. Running around! Ha! I’m also still funny! My new rollator is on her way here all the way from Denmark. I’m so fancy.

I had myself convinced that I was going to go to the dealer to throw myself at the mercy of the financing gods and attempt to negotiate myself out of my lease on my fancy new convertible with the world’s smallest trunk. Then I changed my mind. Then I changed it again. Currently, I’m in the camp of keeping my car and not letting this disease steal one more little sliver of my ever-decreasing joy. I’m sure by tomorrow I will change my mind again.

Maybe when I come out of this latest cocoon I won’t hate what I’ve turned into. Maybe I will learn that my legs aren’t what make me me. My brain still does amazing things. I’m still having an impact on the life Old Me built for myself, even when I try to convince myself I’m not.

I feel like the Universe is trying to teach me a lesson. I’m sure it’s a lesson about what’s really important and how life isn’t about achievement or the next promotion or the cool presentation I put together for the latest new client or how many feet I can walk before my legs stop walking at all. It’s not about any of that.

Something as simple as an electric razor can bring you peace. Something as basic as clean sheets can make your whole damn day seem worthwhile! There are worse things than going slow. I imagine not going at all would be one of them.

Transformations are cool because they mean you’re still living. You’re still growing. You’re still learning and changing. Maybe that’s why transformations are my jam. Still.