New York State of Mind

This past weekend felt like a sort of homecoming the likes of which I haven’t experienced since my time in France. As I’ve spent the past week recovering with lots of sleep, I’ve been trying to find the words for all I experienced, all I saw, all I felt, but no words seem to do it justice. I’ve rewritten this blog post half a dozen times already, and still I don’t know if I can capture all I want to say.

But I’ll try. Because that’s what I do… And I want to preserve this feeling and these memories as best I can.

Last weekend, I traveled up to New York City to spend the weekend with a close friend who flew in from Chicago. I had wanted to do something special for my birthday—something to really celebrate this year, to remind myself that there can be joy in the midst of all the pain from this past summer, that life is waiting for me on the other side of this illness. A well-timed editing job gave me the financial means to plan something bigger, and although I thought about a day at the beach or a mini-vacation in the Poconos, I knew calm and relaxing wasn’t what I needed.

I needed vibrancy. I needed electrifying. I needed to feel like I was alive again. And if there’s one place to feel alive, it’s in the city that never sleeps.

New York is in my blood. I may have grown up in Pennsylvania, but I was born in New York, my family is from there. I’ve been to Manhattan a hundred times to visit friends or on bus trips to see a show. But this time it was different. This time I was different.

Truth be told, as excited as I was about this trip, I was also terrified. This was the first time I would be traveling and navigating transportation on my own since I became ill nearly six years ago. I had once spent a month in the south of France on my own, but that seemed like an anthill compared to the mountainous challenge that was hopping on a train and going to New York City with cognitive and physical impairments thanks to Lyme disease. To say I was nervous was an understatement, but I’ve never let my fears stop me…Ever.

So on Friday afternoon, I found myself sitting on the platform of my local train station, chatting with a good-looking guy who introduced himself and sat down beside me. Did I mention this was the first time in two years I was wearing clothes other than sweatpants/leggings and t-shirts? It made me feel good. It made me feel normal. It made me feel like people could see me as something more than this disease—that I could see myself as more than the Lyme. It felt, in a word, empowering. It was just the start to the trip I needed.

The man and I went our separate ways on the train, although we wished each other luck as he disembarked in Philadelphia and I stayed on through to New York. I tried reading, tried listening to music, but the scenery sped past, and my nerves remained on high-alert. That’s what people don’t really talk about when they talk about Lyme disease. The fact that our sympathetic nervous system breaks down, causing our fight or flight reflex to go haywire. Imagine running on adrenaline 24/7. Imagine entering a room and instead of admiring the decor or saying hello to friends and family, your eyes immediately scan the room for every possible threat to your own well-being. Imagine never feeling safe anywhere, even in your own skin. This is life with Lyme disease—we’re in survival mode every single second of every single hour of every single day, and there is no security, no break, no way to let down our guards. Which probably means I was made for New York, no? The train pulled into Penn Station, which was nothing but a blur of motion and moving bodies. I don’t remember much, except that my one goal was to get to street-level and I had no idea where I was going. My close friend and fellow author, Monica, had flown in from Chicago earlier in the day, so she texted me that she was walking down from the apartment we rented through AirB&B to meet me. I hung out in a fairly remote vestibule in Penn Station on the corner of 8th and 33rd Street while I watched travelers come and go and waited for her. Here's the logistics: our apartment was located on 56th Street in Hell’s Kitchen, close to Columbus Circle and Central Park. We were at Penn Station on 33rd Street. I had my old school backpack on my shoulders and was carrying a duffel bag full of fall-weather (ie: heavy) clothes. I was also already growing tired from the rush of adrenaline that came from navigating the train and station. There was no way I was going to make it twenty blocks—even if they were shorter city blocks at that. Hi, I’d like to introduce myself. My name is Susan, and I’m optimistic to a fault. It was unseasonably warm for the tail end of September. The sun was bright, light glinting off the skyscrapers surrounding us. People rushed by carrying their own travel bags, holding cups of coffee or dog leashes, set on getting to their destination, and I wanted to be among them, taking in the sights and sounds of the city and this freedom and sense of independence that came with it.

I wanted to walk.

I had budgeted most of my money for this trip for transportation, knowing I couldn’t push myself too much, knowing that I wouldn’t be able to handle all the walking that’s expected in a city built for foot traffic. I figured we’d go as far as I could and then hail a taxi or an Uber.

We made it all of three blocks before I had to stop to rest, and I quickly pulled Uber up on my phone, but drivers kept dropping us. Monica raised her arm to hail a cab, but they drove past without a glance, already full of passengers. It took us nearly a half an hour and walking back in the direction we came from to realize there was a taxi line in front of Penn Station. Thankfully, while my experiences traveling are often fraught with adventures, this was the only hiccup we had. “Just wait until you see the apartment,” Monica said to me.

“Why? Didn’t the pictures on the website do it justice?”

“Just wait. I want to know what you think.”

When we got to the apartment—in a building with an elevator, thank goodness—I found myself relieved to be “at home.” I set down my bags and glanced around. It was a spacious apartment with a picture window in the living room that overlooked a small courtyard. Original, framed artwork lined the walls and an electric piano was set up near the entryway. A selection of trinkets lined the window ledge, giving us a further glimpse into the apartment's owner—a sea salt lamp, various sculptures, and a smudge stick for clearing away negative energy. “He has a smudge stick!” I exclaimed. “Oh, my God,” I said to Monica when I spied his books on photography and art. “I think this guy is my soulmate.”

I was endlessly entertained by this apartment and fascinated by the person who owned it. But that was also its downfall. Monica and I lounged on the large L-shaped couch for a while before heading out for a sushi dinner. When we returned, exhausted and ready for bed, I brought my things into the bedroom and paused as I glanced at the closet full of clothes, the books on the nightstand, the phone charger laying on the ground near the bed like it had been dropped there after exerting its usefulness.

Listen, I get the whole point of AirB&B is that people are renting our their actual homes. I also get that we paid $200+/night to stay in this apartment and that it was clean and orderly and perfectly suitable for our purposes... But I just couldn’t sleep in this guy’s bed—I couldn’t do it. Especially not when his picture on his profile was that good-looking and he was nice and communicative the whole weekend. Especially not when I spied a book about the universe on his shelf. Monica and I giggled and collapsed onto opposite ends of the couch where we had a heart-to-heart talk and caught up with each other until we fell asleep.

The next day was to be my only full day in the city, and I wanted to make the most of it. We decided on bagels for breakfast, but Monica had some work for her business to finish up, so I decided to walk down to whatever bagel shop was closest by myself. I quickly changed into jeans, a blouse, and a long cardigan and headed out into the cool morning air, reveling in this feeling of independence, of freedom. This was a huge step for me. For the past five years, I’ve been almost fully dependent on others. For the past two years, I’ve been practically housebound. On the good days, my home is my refuge, my sanctuary—the only place where I can feel safe and actually let down my guard. On the bad days, when loneliness and isolation strike, it becomes its own cage.

Or maybe it’s the reverse.

But here, walking down these city blocks, I felt autonomous. I felt limitless. I felt the weight of Lyme disease lift free of me. I could think about more than the near-constant fatigue and my pain. I could be more than the limitations this illness has placed on me. I could brush off the fear that shadows me every time I leave my house because I never know if that will be the day my body gives out, if I’ll make it back home. Here, I could set all of that aside and thrive. In a city of millions, I was finding my independence again. I was letting my free spirit soar. I could be wholly me and free.

This city was vibrant and alive and so was I, so was I…

A two-minute walk on Google maps turned out to be five city blocks, which is more than I’ve walked into two years. But though my cheeks were flushed from the exertion when I returned back to the apartment, I was happy.

After breakfast, we grabbed an Uber and headed out to the Cloisters at the Met, a museum overlooking the Hudson River that specializes in medieval architecture, art, and artifacts. On what was increasingly becoming a spiritual trip for the both of us, thanks to our heart-to-hearts and where we are now in our transcendental journeys, this seemed like the perfect place to visit. We marveled at the stained glass windows and arched ceilings. We wandered along the colonnades, admiring the gardens. We took selfies (so many selfies!) and relaxed on a bench among fresh herbs that were used by healers in the Middle Ages and talked about life. To say it was a perfect afternoon would only be an understatement.

We arrived back at the apartment earlier than anticipated, so we grabbed some take-out from a nearby Cuban restaurant and relaxed in the apartment. As much as I had wanted to make the most of this trip by visiting all the places I’ve never been—the Museum of Natural History, The NY Public Library, the Met Museum of Art, indie bookstores!—I was happy to be relaxing and chatting in this apartment tucked in a corner of Mid-Town Manhattan. I don’t know how to explain it, but I felt like I was at home here. Here, in a city of millions, those walls safeguarding my heart, my very being, began to crumble. At a quarter to seven, we hailed an Uber and headed to the Broadhurst Theatre on 44th Street to see Anastasia: The Musical. I’ve been excited about this show since I first learned it was coming to Broadway, and back in the spring when it premiered, I vowed that one day I would see it. I had no idea that one day would come so soon, but my grateful little heart is glad it did.

The show was beyond my wildest expectations. I was grinning like an idiot the whole time, enthralled by the beauty of the production, my heart soaring at the revamped score, and me—erupting in giggles as I sneaked a knowing glance or two at Monica beside me whenever the actor who played Dmitry lit up the stage. I’d been entranced by the history of the Romanovs since I read Robert K. Massie’s book, Nicholas and Alexandra when I was twelve. Then the animated movie came out in 1997, and I was hooked yet again. This show removes the juvenile elements of the movie (while still keeping the much-loved characters and romantic arcs) and creates a haunting depiction of a piece of Russian history entwined with a fairytale reborn.

It was beautiful. Just unbelievably beautiful.

After the show, Monica and I stayed behind to pick up some merchandise—a program and keychain for me (as I do for every show I see) and a gorgeous sweatshirt for her. Then we hung out with the crowd at the stage door to see if we could get a glimpse (and possibly a picture) with some of the cast members. Christy Altomare, the actress who plays the titular Anastasia, was a sweetheart when she came out. The crowd sang her happy birthday. Monica pointed out that Mary Beth Piel, who played the Dowager Emperess, was the grandmother on Dawson’s Creek, which was a shot of nostalgia. Then came John Bolton, who played a delightful Vlad, and Ramin Karimloo (Gleb), whose voice I recognized immediately during the performance as playing the Phantom in the 25th Anniversary of The Phantom of the Opera at the Royal Albert Hall. Little bit smitten and definitely a fan.

The Universe had our back this weekend—I swear it was a magical weekend—because the crowd began to taper out around a quarter to twelve, which meant we could step up to the barricade. You wouldn’t know that we were two women in our thirties—oh, no. We were more like giggling schoolgirls as we waited for Derek Klena (Dmitry) to come out for pictures and autographs. It was a flurry of activity when he finally did, and Monica and I squeezed in for pictures in a burst of excitement and adrenaline, the cameras on our phones clicking at a mile a minute because we didn’t want to miss this moment. We thanked him profusely, and then I swear we floated down the street in another fit of blissful laughter.

It took us probably a good ten minutes to realize we had to call an Uber to get back home. I can’t stop smiling even as I write this. There’s magic in this world. I’d forgotten it, lost for so long, so consumed by my own pain and despair. But it’s there, infinite in its make-up, waiting for us to find it and carry it along on this ride that is life. I felt it there on the streets of Manhattan, among the lights and music that give voice to a thousand dreams. I found it there, and I didn’t let it go... The next morning—yep, still smiling—we hung around the apartment for a while before separating for a bit. Monica headed out for a walk in Central Park. I headed out in search of food that I promised to bring back home to my family. Freshly armed with a dozen bagels and some black and white cookies, I packed my bags, took one last look around the apartment, and then grabbed an Uber with Monica back to Penn Station.

Here’s the thing about Penn Station—it’s crowded, chaotic, and a bit confusing. Thanks to the lovely woman at the customer service desk, I learned that the tracks for outgoing trains aren’t announced until ten minutes prior to departure time, which means a lot of waiting around and wondering if you’ll have to dart across the station to make your train. I think my experiences in France left its mark, because I plopped my luggage down near the customer service station, sat on my bag, and occupied myself with people-watching. I had a brief reunion with Monica and her husband, who was joining her for an extended stay in New York, and then went back to waiting some more. My only goal was to get on a train. I didn’t care which one, I just wanted to get on an outbound train. Turns out, it was easier than expected, as I was sitting right near the entrance to my platform. I was one of the first onboard and quickly claimed my spot, pulled up the soundtrack to--you guessed it--Anastasia: The Musical, popped in my earbuds, and settled back for the ride home. I was happy to see my dad, who picked me up at the train station. I was happy to see my mom and my dogs, who I had missed terribly. I was happy to be home. But these past few days since being back, as I recover from the stress of travel and the joy of this trip—both which take exorbitant amounts of energy I don’t have to begin with--I’ve also felt a little brokenhearted, like I’m returning to a reality that doesn't seem to fit my life anymore. At least, not what I want out of my life. Because finally, finally—there in that place in New York, in that moment—I felt like I belonged. There are the dreamers and doers. There are the people who become. There are those who fearlessly chase their goals and all the magic that life has to offer.

There is where life seems limitless. And here I am, spending the week in bed recovering, once again struggling against limitations.

I want to be a part of that world—a world not bound by restrictions due to illness, that pushes onward in the face of self-doubt, that perseveres through rejection. For a few short days, I got a taste of this feeling—this empowerment, this strength, this vitality. I breathed it in, let it soak into my bones. I carried it home with me--not tucked in my back pocket, but on my sleeve, a piece of my heart for the world to see.

"I don't think I've ever seen you this happy," my friend said when I got home and began to recount my trip. It was true. It had been a long, long time since I allowed myself to feel this happy, since I felt this whole and independent and me. It had been a long time since I felt this alive. But I am. I'm alive. And because of that, I am free.