My second road trip for business in two weeks. It’s been rather non-stop on the work front for weeks now. Earlier in the week I had to cancel my PT session on Wednesday morning to work on the presentation for Friday. I had to shower. I mean, who has to plan for a shower to prep for a business meeting? I do, that’s who.

This time, my destination was middle-of-nowhere Ohio for a 10AM meeting about two hours from where I live. This meant picking up my boss at his hotel at 7AM in downtown Pittsburgh (that’s him up there with his face covered because he didn’t consent to being part of this story and I’m respectful of his privacy but how could I resist that setting?). Making this 7AM pick up meant a 5AM wake up call.

Yes, you read that right. I managed to be out of my house, in clothing with makeup on and completely prepared for my day of meeting with high-powered executives about very important things.

My car was pre-packed the day before, rollator and trekking poles in the back seat in order to leave the world’s tiniest trunk open for the boss’s luggage. My transport chair was being carried in a second vehicle along with the rest of our team because there was no room for it in my car. Planning. I may need to learn every lesson the hard way but I do learn them eventually.

The meeting location was a very large corporate campus. There was no way I’d be able to walk once we got there. I was fully prepared to be pushed into this meeting. I made my peace with it well in advance of the actual day. There’s no way, right now anyway, to avoid this reality so I’ve decided to not fight it. I had to be able to perform. I didn’t have the energy to perform AND walk. The chair it would be. At least I had that fateful trip to Satan’s Armpit (aka Washington D.C. in August) just the week before to help me mentally prepare.

I also had to plan other very important details. Like not drinking coffee in the morning or too much water, my usual hydration habits not being terribly conducive to road trips with very important people. I felt parched all day but I didn’t have to stop overly frequently or walk to the bathroom too many times. Imagine asking your co-worker to wheel you to the bathroom after a meeting. I didn’t have to imagine it. I just did it. Desperate times and all. Have I mentioned lately how amazing my co-workers are?

I will never get used to looking up at people. I will never get used to not being able to control my location or where my body is facing or how fast I am moving or any of that. You feel, quite literally, small. Once I got in the room where the meeting would be held, I transferred myself to a regular conference room chair and I immediately felt more normal. I could look at people on the level. As is usually the case, once the director says “action” I’m ready to do my thing – but it feels much better to do that when everyone else is sitting down too.

Getting to that meeting room, however, was an entirely different situation.

There were ramps and people to open doors and as already mentioned people to actually push me but as I’m only beginning to learn, accessibility is really not something we, the handi, can ever take for granted. Even on a giant corporate campus of a very large company.

Once we got to the building where the meeting was to be held, we hit the first few stairs without a ramp. OK. I could handle 4 or 5 steps to get to the lobby. After two hours in the car and a crazy early morning and a long week prior preparing for this meeting, my body was basically non-functional. I had to swing my legs around to the outside to get them up on each step because they wouldn’t lift up like regular legs should. But I dragged my legs up those steps while people helped me and it was OK. I told myself it was OK. I needed help but nobody minded helping me. It was OK.

As usual, the meeting itself went well. I never really worry about that part very much. I guess I have to figure out how to believe in something so I choose to believe that I can still bring it when it matters in a conference room. I just choose to believe it. But that was before I saw the “out of order” signs on the elevators in the lobby of the building where the meeting was scheduled. In that lobby was a giant open air staircase to get to the second floor where the meeting room was located.

This is where I went into autopilot. “Just get through it,” I thought to myself. It’s just some steps, in public, to a glass room where people were already seated and waiting, more than able to see my ridiculous assent. My boss went up ahead of me and was there with a hand when I needed it, which was a lot. The rest of the team was behind me making sure I didn’t tumble down backwards. And carrying the transport chair, of course, because once I got myself up to the second floor I was about ready to collapse.

I had to gather myself, greet friends and colleagues (some with hugs), say hello to some new faces and get myself seated and ready to go. I don’t really remember the details. I think I go into protection mode in situations like this. I try to forget the ghastly thing that just happened and get on with it. The human brain does some amazing things to protect you from your own sometimes ridiculous circumstances. Even a broken human brain, as it turns out, because mine kicks in to save my ass even when I don’t believe it will.

We had a great meeting. It went well. It was OK. Everything was OK and things were looking up because there was a nice man in a company-logo polo shirt waiting for me outside of the glass conference room who had been assigned to get me from the conference room to the cafeteria where we were regrouping after the meeting. Everyone at the company was super apologetic about the situation. They were obviously pulling out the stops by assigning me an official escort. He was super nice and sincerely helpful when he said, “We’re going go this way – to the freight elevator. We’ll get you down there.”

To the freight elevator.

I mean, this was truly an amazing solution because I can’t even imagine how I would have made it back down those open-air steps so beggars can’t be choosers. My mother taught me that as a child. By now it was around 12:30PM and having been up since 5AM, things were starting to hurt.

I mean, that’s a lie. Things had been hurting all day because when you’re sitting at a horseshoe-shaped table and you need to make eye contact with people on both sides, you find yourself twisting around back and forth and eventually feeling less than comfy. Sitting in a conference room with MS is not easy. Imagine that! I mean, it’s probably stress and fatigue and all of that re-routing of central nervous system signals that causes that pain, but color me informed. Needless to say, my pain “medication” had been left at home. I can’t be stoned or even moderately out of it in situations like these. I did take a handful of Advil to see if that would take the edge off but it really does nothing.

I have been experiencing a worsening of my l’hermitte’s sign these last few weeks. For those who aren’t familiar, l’hermitte’s sign is a sensation kind of like an electric current that travels down your neck and back. For me, when I turn my head and neck to look around or down, I get an electric current down my back to my legs. Sometimes it makes me shake. It doesn’t hurt as much as it just feels odd. I remember the feeling from my spinal tap, when the doctor drawing the spinal fluid would hit a nerve accidentally I’d get a similar feeling but that feeling hurt a lot. A real lot. This other feeling hurts but it’s not intolerable, just distracting. Very, very distracting. “At Moxie we approach…” zing, zing, zingy down the back of my neck while I’m speaking in a meeting while looking to my left. Sitting at waist level in the freight elevator, looking up at my colleagues, zzzzzzzinnnnnggggg. It almost starts to feel normal after a while.

We stopped on the way home at this little roadside Mexican restaurant that clearly spent their entire budget on custom-painted chairs but it was shockingly delicious. We ate, chatted, made some plans. I pulled my rollator out for this stop because the poles weren’t going to do it. The cheesy road-side Mexican restaurant was actually more accessible than the corporate HQ. Imagine! Happy surprises are around every corner.

Once I dropped my boss at the local airport after we finished our lunch I got myself back on the road. I had a short couple of hours before I’d be home. I programmed my GPS and hit the road. I’d been driving through two lane back roads, neighborhoods with lawns and kids bikes on the lawn. I had been expecting to get back on the turnpike but the GPS wasn’t telling me that. I just kept driving feeling a little more concerned the longer I drove. I called my friend who had gotten on the road ahead of me and asked her where she was. She was on the turnpike like I thought I should be. I pulled over twice to check the route. I started to think about how this was the first time I’d been on a long-ish distance trip alone in a very long time. I felt myself getting a little anxious – but I kept going, focusing on not drinking any water and not having to stop to get out of the car for any reason.

When I drove by the “for rent” sign on the house shown above, I jokingly told my friend who I’d been talking to on the phone that I might consider actually moving in there. That’s how tired I was. Apparently there had been an accident on the turnpike so this was the reroute to get me home. All good. I finally made it to the highway and I was about 22 miles from home.

I finally stopped feeling anxious and turned the music up loud. Singing in the car is one of my remaining joys. I’ve always loved driving, even before I stopped being able to walk so well. Open road, good music, singing at the top of my lungs? It’s the best feeling ever. It occurred to me when I finally reached the highway and could relax a little that I still love driving. I especially love driving alone. It’s such a feeling of freedom! For a few miles I felt really great. I knew I was almost home. I’d made it.

Until I didn’t. There was another accident on the turnpike that had traffic at a standstill. I was 20 miles from home, but it was going to take me a lot longer before I’d be pulling into the driveway. I sang my way through it. Even on the rap parts. It wasn’t horrible. I gave in to it and started to enjoy it a little. I can still drive. I can still feel happy behind the wheel. Getting out? Not so much, but behind the wheel? That’s one of my happy places. I wasn’t sure it would still be there, but it was.

I made it home. I somehow got all of my crap out of the back seat and replaced in the trunk. I got myself across the lawn to the front steps (sometimes this short stretch of grass fills me with dread because by the time I get to it, I’m usually super exhausted and on my last shreds of strength). I got into the house and up the stairs. It was 6:30PM but I was both physically spent and mentally wired. The provigil I’d taken at 6AM was still doing it’s thing. My nephew came over to help me scoop litter in the basement. I didn’t have those extra steps in me. But I didn’t fall asleep until after 11PM. I remembered this feeling so vividly! My body being finished but my brain being in overdrive. I tried to drink as much water as I could but I was only on my first liter of the day and I usually have 5 or 6 by that time.

What comes next? How would I do this? Could this get better? What is tomorrow going to feel like? How long will this take me to recover from? Did I do OK today, really? Or did I just tell myself I did OK today because that’s what I needed to feel?

My sister called me to see how my day went. I was so tired I almost couldn’t talk but I somehow managed to tell her the story of my day with the crescendo being the freight elevator part of the story. We laughed and laughed. Then she asked me when I’d be doing it again and I sighed and said I was hoping the real elevators were working when I had to go back. Maybe I’d have a motorized chair by then so I could at least drive myself to the freight elevator. At that point she said something about how it would be OK next time. She knew it would be OK. Even if they needed to (and I quote here): “Make Maribeth freight again!” How we could get hats and t-shirts made. We laughed and laughed and laughed. I really needed that laugh. She and I both share a general loathing for that…thing…that sits in the White House these days so it was a much needed moment of levity. Funny must run in our family.

When I woke up this morning to feed the cats at around 7AM, my body wouldn’t move right away. My head was pounding. It’s been a while since I was so dehydrated that it gave me a headache like that. When I tried to get out of bed, I realized I had that paralyzed feeling I get when I’ve done too much. It’s a moment of sheer terror when my legs don’t move when I think they should followed by me talking myself through it and reminding myself that we’ve been here before. It will pass and it eventually did. I dragged my dead legs down the stairs to feed the beasts and somehow made it back to bed to sleep more. Before that, I chugged another liter of water.

I stayed in bed until 1PM. I canceled a massage I had scheduled at 12;45PM because I knew I couldn’t make it there on these exhausted, useless legs. It bummed me out because that massage would have helped wake up my dead body but it was not to be. I knew I needed the sleep more. Choices! Everyone has to make them.

On the upside, my massage therapist by the name of Michael, otherwise known as my longest non-family male relationship, came by this afternoon to check out my house to see if we could schedule our appointments at home from now on instead of at the salon that can sometimes be too much for me to get to on a bad day. We figured out a space where the portable massage table would fit and where there are windows with blinds to close so my neighbors don’t see me getting my bi-weekly rub. Michael is going to do house calls for me from now on. No more canceled massages.

Things are looking up.

By tomorrow, I might even be able to walk again!  I might take a nice long drive tomorrow. I might make myself a special song mix especially for the occasion. Or I may just take a shower and revel in my cleanliness. Or not. I’ll do whatever this body will allow me to do even if it’s nothing. It will be OK. It will all be OK.