I was in the room where it happens

A montage of my most enjoyable NYC moments

Who doesn’t want to see Hamilton? I want to meet that person because I’ve been obsessed with the idea of seeing this show on Broadway the second I popped the soundtrack into the CD player in my car. I’ve been singing the songs, reading the books, educating myself on the historical backstory and did I mention singing the songs? Because I’ve been singing some songs! If you’ve had the opportunity to drive with me in my car any distance at all, you heard me sing those songs, too.

I’m especially good on Eliza’s parts, just saying.

A lot of people ask me how we got the tickets. My niece has seen Hamilton three times now (I know. Hello? Spoiled much? The kid is my hero.) After one of her first times, she went online and was one of the first 5,000 people to sign up for the Hamilton mailing list and as a result she got early email alerts when new blocks of tickets went on sale before the general public. One night, about a year ago, I was at my sister’s house having Sunday family dinner when Lani got one of those email alerts and we pounced. It was almost a year ago. The dates for the tickets seemed so far off! Like the show would never come.

I was early in my diagnosis, then. I had very little experience with life with MS. I also was early on in my treatment, and I think it’s safe to say, a lot more optimistic about what my life would be like a year into the future. I remember thinking to myself, “Well, by then my treatment will have kicked in! I’ll be in remission. I will be feeling better and more up for traveling. It will be awesome to have something amazing to look forward to after all of this time feeling like such ass.” So I told Lani to pounce. I was in.

Fast forward to a year later, January 2017 and Hamilton was looming.

I was super excited but also a more than a little bit worried. Those thoughts I had about feeling better and being in remission and all of that happy horse shit felt like the optimistic ramblings of a goddamn unicorn wrangler to me now. I was forced, again, to evaluate the year since my diagnosis and face the fact that things have gone pretty steadily downhill. There’s just no denying it.

I have trouble walking any farther than a block, maybe two. Depending on the day, I might even have trouble walking that far. I am perennially exhausted to the point where I can barely stay awake long enough to get myself to work during the week. You could say my social life has taken somewhat of a turn. I don’t go out much. I drive everywhere. I make strategic plans on the level of what I imagine CIA operatives do for major missions, but for me it’s just to get my through a regular day.

I calculate how to walk as few steps as possible and still somehow get where I need to go. I’ve limited my travel to only the most necessary trips (and with my job, that is a challenge). I have to plan every day around places where I will be faced with unavoidable steps, how close I will be to a bathroom (I pee a whole lot), where I will be too hot (or too cold), where I can have an easy place to sit down when my legs feel like they might give out (you’d be surprised how complicated this can be), not to mention whether or not there will be railings or something for me to hold on to when I feel unsteady. Surprisingly often, there just aren’t.

New York is one of my favorite places in the world. I used to dream about living there when I was younger and job opportunities came up every now and then to head to the big city. For one reason or another, I never took any of those jobs and I stayed in Pittsburgh. Home was always the right place for me but I got to travel to the city for work quite a bit and I fell in love with the energy of Manhattan.

But let’s be honest, here. Manhattan is a walking city. It’s the best way to have the New York experience. For those of us plagued by motion sickness, it can be the only way to have the New York experience. Cabs and Ubers are awesome, except for when a short ride makes you sick as a dog and ruins the whole day. So you walk, you explore, you find yourself in places you didn’t know you wanted to go but are (mostly) glad you did. You walk around and pretend to live in that coolest of cool cities. You soak it in.

I knew I wasn’t going to be able to do that on this trip. I considered renting or buying a transport chair because I was so worried about potentially not being able to walk far enough to get to Hamilton, but after thinking about this more and bringing it up in the infusion room for some opinions from people more experienced than me with this disease, a transport chair didn’t feel all that practical for the crowded, fast-paced streets of Manhattan. Instead, we found a hotel that was four blocks from Hamilton and two blocks from Cats. It wasn’t cheap – but I knew it was the best option for me to make sure I could see the shows. So we booked it.

I gave myself a pretty stern talking to.

Just get to the shows, I told myself. You don’t have to run around the city sight seeing or shopping. You’ve been to New York so many times! And god knows you don’t need to buy a single solitary thing. Just get to both shows and the trip is a win. Anything beyond plopping my ass in two theater seats in two different theaters would be gravy. My sister and my niece would be with me and we were driving to the city, so I wouldn’t have the airport exhaustion to deal with. They would have each other to have fun with during the days when I assumed I’d have to rest in order to be show ready. It could work. It could be fun. It would just be different.

And it was both fun AND different. Some summary thoughts…

  • I did make it to both shows. Walking to Hamilton on the first night was kind of a drag. My sister noted that I was moving my legs from my hips like my knees wouldn’t bend. I never realized that’s what Frankenlegs is a result of! But it is. Too bad knowing that doesn’t fix it.
  • I didn’t go out that much otherwise. On night one, my sister had to steal contraband take out from a NYC eatery where a server unceremoniously informed her they do not “do take out.” Well. She did take out for me. She smuggled me some amazing pork buns in her purse wrapped in cloth napkins. They were amazing! (Picture above…does not do them justice.) People should probably learn that telling my sister she can’t do something is pretty much a guarantee that she will do said thing. Lucky for me!
  • On day two I pretty much slept all day. Who knew sitting in a car for 6 hours made a girl so tired? But I was so tired, so I slept. When I woke up a few times, I thought about taking a short walk outside the hotel to get food. But the thing that sucks about unreliable legs and being alone is that your legs are, well, unreliable. I didn’t want to rely on the kindness of strangers! I didn’t think walking even a short distance alone was a good idea. That sucks because I really like to be alone. I like to explore alone. I had to admit it wasn’t a good idea – so I didn’t do it. But I did eat delicious NY bagels right from my room.
  • On night two, I rallied and went to dinner with my sister and Lani before Cats at an amazing restaurant called Upland. It was far enough away that I could easily Uber there and back to the show. Lani gets terrible motion sickness (much like me) so she and my sister walked to the restaurant and met me there. I had a short wait alone at the bar where I enjoyed eavesdropping on several super unsavory dates that made me really happy that I don’t do that sort of thing. It was an amazing meal.
  • I also Uber-ed to Cats, got there a little early and had a really nice usher show me directly to the handi-bathroom on the theater floor that also happened to be right next to our Orchestra seats. Winning!
  • Cats was…interesting. I love cats. I really do. I mean I really, really love actual felines AND musical theater! But…whoah. At several points during the performance, my sister and I got into crazy laughing fits like we used to get during weekly mass while in Catholic grade school. I cried more than once – but in a very good way. I’m not sorry I saw Cats. But guys. It’s a weird show.
  • Postmates is a MS-girl’s best friend. Particularly in NYC. God bless the Postmates for bringing me an amazing whole milk ricotta bagel sandwich from Black Seed on Friday morning before we left. I also got a dozen bagels which I am still eating, and damn! There is nothing like a NYC bagel.
  • If you have any chance, ever, any way possible, to go see Hamilton…GO. Go if you have to crawl to the theater on your hands and knees, go. It was that good. And also the perfect antidote to certain political realities that have made my soul sick as of late. It was an amazing display of talent, diversity and joy. I will go again if ever given the chance.

This weekend, post-trip, has been a blur of sleeping, sleeping and more sleeping – the usual MS recovery experience compounded by the fact that I have some kind of viral illness that hit me a few days before we left for New York (because of course I got sick right before this trip). I read somewhere that getting any ordinary sickness when you have MS is always worse than it would be if you didn’t have MS and I have to tell you, that is irrefutably true! I am hacking like a pack-a-day smoker, I have no voice at all and there’s no end in sight.

But it was worth it. I got to be in the room where it happened.

This trip gave me more things to think about. More things to ponder and consider and figure out related to how I’m going to live any kind of life at all while having this disease at the same time. Doing things like this force you to accept that there is no denying how far reaching the tentacles of multiple sclerosis reach into your life – so much deeper and further than you ever think they will when you first get diagnosed.

I am forced to admit that I am afraid to do things alone that I would have given no thought to pre-disease. I have to figure that part out because I really love to be alone. I love it a lot but I can’t always love it from my living room. I have to find a way to work that part out.

My sister reminded me on this trip that I never loved walking for miles and miles and miles. I used to get annoyed when she would expect me to spend the entire day walking and walking with no end in sight. I just didn’t think that was so much fun. I like to walk to a place – relax and enjoy that place, and then maybe walk back or maybe even hop a cab! I’m notoriously lazy. Always have been. I’m not even remotely ashamed of that.

It wasn’t that I couldn’t walk around with them all day, on this trip that bothered me. I wouldn’t have even wanted to do that. That is their thing, not mine. It was that I was too unsure to walk anywhere alone that really got to me. I have to figure that part out. Or figure out more cities to explore where I can mostly drive and only walk a little bit.

It’s funny how all it takes to make a girl want to do things she’s never wanted to do before is to have that girl realize that now, she couldn’t even if she wanted to.

There’s the rub.

I saw both shows. I had a great dinner. I laughed until I cried more than one time. I’m chalking this up as a major victory regardless of how much money I spent on Postmates deliveries.


One thought on “I was in the room where it happens”

  1. Just got to this post as I finished watching the senate hearing on Jeff Sessions. It left me so angry ? Completely partisan ~ Dems NO ~ Reps YES
    THE CAST of HAMILTON needs to do a few numbers on the Senate floor and drive some points home about how to run a country.
    The framers are turning over in their graves! And I don’t want to leave my bed!
    But ~ I’m so glad you got your NYC experience ~ & those great bagels (Murrays in Chelsea are legendary!) Ame

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