I went on a business trip. This used to be such an easy, no-brainer thing for me to do! We were able to drive to this one so how hard could it be, really?

It’s almost shocking to think about how much actual thinking was required to make this formerly no-brainer task happen. It was a quick over-nighter to Washington DC for a new business pitch. I knew I would need various mobility aids. I knew I didn’t have a way to fly there with the ones I needed (yet) so I had to ask my colleagues if they were up for a road trip. Turns out, I work with some really nice people who are willing to accommodate me in so many ways it boggles the mind. A road trip it would be!

Me, my rollator, my transport chair, my overnight bag, my big business brain and a couple of really patient friends (and co-workers) hit the road Wednesday morning around 10AM heading just slightly south and east toward our nation’s capitol.

The level of planning that went into getting myself out of the house with all of the things I need for daily survival in a place that is not my home is another thing that boggles the mind.

Medications in and of themselves were a bit daunting. Two baggies each, one for morning meds, another for night time meds, a third for the other meds I need to get through the pain of any old regular day (the ones I procured at the dispensary, I mean) because I was presuming that four hours in a car would cause a bit more pain than the usual day. I presumed correctly.

Every time we had to stop to pee (because MS, duh) it required rearranging the entire back of the SUV full of bags and boxes to get my rollator out of the car at each rest stop. Thank goodness my travel companions were patient with me and handled this all like it wasn’t a big deal. It was good to have Nitro along, as it turned out, because on my first outing into the big wide outside world of business travel I discovered some very interesting things.

First, the bathrooms in some turnpike rest stops are handily positioned right inside the entrance door. The short walk to the front door from the handicapped parking spot was brutal in the 90+ degree heat and extreme humidity so by the time I made it inside the joint, I could barely stand. The close proximity of the restrooms was critical because I had very few actual steps in my legs by the time I made it to the stall.

Then again the bathrooms in other rest stops are all the way the hell in the back of the cavernous hall full of cheap fried chicken and roast beef fast food stands, convenience stores full of delicious road food like Combos, Bugles and the occasional Dunkin’ Donuts and the various and sundry road warriors just like us, traveling the PA Turnpike to see the sights and have wholesome family fun. By the time I made it to those rest rooms that were oh-so-far away my legs were dragging like dead tree trunks.

At one rest stop in particular, I plopped myself down on Nitro’s seat because I couldn’t stand for the time required to wait for my colleagues to procure snacks and check email. As I sat there on my handy rollator trying not to make eye contact with people streaming past me into and out of the rest stop, I swear to you a few people paused near me looking for a cup to toss change in. Or a petition to sign maybe? It was weird. I felt weird but not weird enough to allow myself to collapse in a public place so I sat my ass down for a rest.

The thing with my MS is that I can’t stand for very long before my legs feel like they might give out but if I sit for too long without stretching my legs or moving around even a little bit my body stiffens up and it’s hard to move again at all when I try. Constant motion presents challenges, too, since my energy and strength are super limited. So there’s that, too. It’s a conundrum.

It’s easier to manage when I’m in my own environment where I can control every little detail.

That’s the thing that hit me like a ton of bricks on this little jaunt. The simple truth that I have to micro-manage every little detail of my life in order for it to be doable within the constraints of this godforsaken disease. For the first time in my life, routine and habit are my friends. Or they need to be my friends. I find I resent the shit out of them, but that is a giant waste of energy because every little detail of life is a lot to think about while just trying to get through your average new business pitch meeting in another city, not even that far away from home, when energy is at a premium. Can’t be wasting that shit all willy nilly and what not.

About an hour after we got on the road, the air conditioning in my colleague’s car started to die. I thought I was imagining it at first but as we got closer to DC and as the temperatures continued to rise the closer we got, I felt myself feeling weak and dopey. I could feel myself struggling to breathe correctly. Finally, it was impossible to ignore. The fucking air was busted and we had at least three more hours to go. I had work to do when we got there! I could barely keep my head up. When we finally arrived at the hotel in DC, I was almost crying with relief at the idea of getting inside an air conditioned building. I unfolded myself from the car, in front of the hotel facing about 5 steps. No problem! I had Nitro…I could roll into the hotel using the handy ramp that is about 20 feet away from the front door. Merely 20 feet! How easy is that?

Not so easy when you’ve been stranded in a car with broken air conditioning for the last couple of hours. Being handicapped means having to walk out of your way to get to a place where you can enter a building using the tools you require in order to ambulate. It doesn’t make much sense, but there you have it.

I got myself to the front desk to check in and secure my handicapped accessible room. Easy peasy.

I don’t know…do you think there was a sale on grab bars?

Right. That’s ridiculous.

Aside from the tub in my bathroom and the questionable number of grab bars inside of said tub, this room was anything but accessible. I could barely navigate the room with my rollator – the areas weren’t wide enough. There was a giant frosted glass and wood bathroom door that opened into the hallway – leaving it open meant no room to navigate around it. Closing it would make opening it in the dark a challenge. Beyond the simple reality that the accessible rooms are the furthest away from the elevators – meaning more leg dragging back to my room after finalizing our presentation for the next day in our rehearsal room on another floor.

Nothing in my room felt right. The bed was too high. The hallways not wide enough. The chair sat at a weird angle for my back, my suitcase full of all of my various necessary things was never in the right place in the room where I needed something from it. I felt off my game. Unsteady even for me. Nothing felt right.

I realized I forgot my magnifying mirror for applying my makeup so I put a full face of makeup on completely blind. I’ve done it enough in my life, how bad could it be? Let’s just say my capacity for caring what it looked like was limited at best. I got out the door with all of my belongings, in clothing and wearing makeup for my 8:30AM rehearsal meeting. That’s when the transport chair wheeling began.

My friends (and co-workers) are truly amazing. They arranged for the Ubers and got me and my menagerie of crap to the meeting where I shook hands with people I’d only met on the telephone before as they looked down at me and I gazed at their clothing around navel height for a second or two before I remembered to look up.

We had our presentation. It went shockingly well. Everyone on the team was on their game, including me or so they tell me. We got ourselves back on the road for a stuffy drive home and I made it back in the house where my friends carried all of my shit into the house, even taking my suitcase up the stairs to my room so I didn’t have to figure out how to do that after they’d gone. I mean, all in all it went really well, all things considered?

That’s a question mark because it dawned on me about 20 minutes after my room service dinner arrived when the discomfort came to a crescendo inside my room with the temperature set at 65 degrees in an attempt to drop my body temp quick that being anywhere but inside my house is always going to be like this.

I’m going to be uncomfortable, inconvenienced, unsettled and off balance  on the regular. “Accessibility” is kind of a joke in the outside world and you cannot control things like the goddamned weather even in these modern times full of modern conveniences. It’s just the way it’s going to be. And I need to start getting accustomed to that reality sooner rather than later because that’s just the way life is.

I mean, I had two friends sitting in the back seat of that hot, humid car for four hours on the way home back to Pittsburgh in the heat of the day. They don’t have MS but they had to be as uncomfortable as I was, if not more so because there was no air coming at them way back there. My one friend has a trick knee that started acting up not long into the drive. Then when we stopped for various rests, bathroom breaks or refueling they all had to jump out and move all the shit in the back of the SUV around for ME so I could have my rollator to support me out there in the big wide world. My friend who drove had to freaking drive four hours there and back home after an early morning jostling me around the nation’s capitol and then putting on a show for potential new clients. None of us were having much fun, really, but we somehow managed to make it through the days and nights helping each other out.

I guess life is uncomfortable for everyone in some way, shape or form. I’m lucky enough to be surrounded by people who are willing to put themselves into discomfort to help me do some things that aren’t all that easy for me anymore. I’m pretty freaking grateful for that, you better believe it.

We found out about mid-day through the day on Friday that we didn’t win the new client business we were in DC to pitch. They gave us reasons that I’m sure were meaningful to them, but not entirely sensible to me. I was bummed not to win, especially after all of the crap that went into making it happen. But I have to tell you, I felt nothing but proud of the work we’d done as a team for that meeting. Not winning didn’t make what we did feel any less right.  Sometimes you meet people in the process who make the whole thing worthwhile. You see people show talents you didn’t know they had. You manage to laugh a whole lot and make inappropriate jokes when you’re in a car for 8 hours out of 48 spent together. Even when you’re super uncomfortable, people can be nice to be around every now and then.

Even though the discomfort of it all is so vivid in my mind even two days later, so is the fun of being around other actual people that you really like  lot and seeing some sights as you drive by them. You might even have a few moments of actual happiness while eating two double chocolate rest stop donuts in a super hot and stuffy car!

And you might have another epiphany in the process: I need to up my mental game.

I’ve been focusing on the physical thing, because it’s so outrageously uncomfortable and painful and inconvenient to deal with day in and day out. But the mental game is what’s more important and I might be ignoring that one a little too much. I’ve created a world for myself that accommodates (as much as that’s physically possible) my ever changing limitations but the outside world will never be even remotely able to come close to that kind of security. I need to get comfortable with being uncomfortable. It’s a mental game and I need to figure out how to get better at playing it. I’m going to be physically spent, in pain, tired, aggravated and inconvenienced everywhere I go. Important parts of my life will be happening out there where nothing feels comfortable or right to me.

I need to get OK with it. Somehow. But damn. There’s no place like home.