There are two things on my mind at any given point: my chronic illness and how ridiculously in love I am. These two are directly correlated to each other, by more than just the fact that both are simultaneously weaving through my nervous system every minute of the day.
I am in a constant state of fighting with myself when it comes to my disorder. My first instinct is to put up barriers between myself and the world, hiding my weakness because the only thing worse than showing flaws is having someone pity you. At every doctor’s visit, every family gathering when I’m asked how I am, I respond with a wrily “fine, the same”. (I then remember that I’m supposed to go into great detail with my doctors how I’m feeling because why else am I paying them a $50 co pay every time?)
At the same time, having Complex Regional Pain Syndrome (isn’t that the most fucking vague term you’ve ever heard? It might as well be called “I have no fucking idea what this is, but its all over the place and it sucks”) is something that has taken over my life and the only way I know how to deal with my life is to write about it. I’m torn between keeping this horrible thing to myself and the ever nagging need to dissect it to understand it.
CRPS, in short, is a nerve disorder that is a result of a traumatic injury. In my case, I slipped on an escalator on a rainy Friday, landing on my left wrist. When I fell, the pain signals in my brain turned on because my arm thought it was broken. But because my arm wasn’t actually broken, it never healed, thus the pain signals never turned off- and never will. There is no cure for CRPS and it will almost inevitably spread to the rest of my body during the upcoming years of my life. Actually, there’s a really good chance I’ll reach a point in my life that every bone in my body will feel broken. The statistics of people who have this disorder that commit suicide is astronomical, because there is nothing doctors can do to make this pain stop.
When it comes to my online profiles, especially Twitter, I’m all over the place with movie facts and song lyrics and ramblings but scarce in the details of my personal life. For most of you reading this, you probably have no idea that I moved back to New Jersey after living in Manhattan for a couple of years. After getting hurt in June 2013, living in the city became increasingly difficult. I had countless doctors visits and medical procedures I went to alone. I worked 11 hour shifts at a veterinary hospital. I was on a slew of narcotics whose side effects made me viciously sick on top of the physical pain from my disorder. I was also in a toxic relationship.
My doctor told me I had to see a shrink to treat my obvious depression, or else he would no longer treat me. I begrudgingly looked for someone that I wouldn’t hate and found a woman who looked just like Walter White’s wife in Breaking Bad. She was sweet and helped me deal with all the shit in my head. I had to come to terms with the anger that my nerves were fucked and that there was nothing I could do about it. I had to deal with not meeting my self-inflicted expectations of greatness. And most of all, I had to accept the fact that I had to break up with New York City.
If you have been following me on Twitter for the last couple of years (or since the beginning in 2009), you are aware that I spent years and years writing about New York. Manhattan was the love of my life. Men would come and go, but the city would forever hold my heart and I was never going to move from the Upper West Side for as long as I lived.
For months everyone tried telling me I should move back to Jersey to be with my family: doctors, lawyers, friends, my shrink. Everything else was negotiable, I tried to say, but I would never leave Manhattan. “If I moved back to New Jersey I would kill myself,” I told my shrink. “I may be miserable here, but I would be empty and feel nothing back there. I’d rather die.”
And yet, things kept getting worse. I spend all my time working and trying to sleep. I took long walks between Columbus Circle and 100th street, between Riverside Park and Central Park. I cried on the benches outside of the Museum of Natural History in the middle of the night, trying to figure out how I had let my life get to this point. Not the promenade in Central Park, not the 91st street Garden in Riverside Park, not a pumpernickel bagel from Zabar’s could save me from drowning anymore.
And so, I dropped my massive book collection off at the post office to zip code 08854, sincerely 10023. The beautiful April morning I officially moved home, I was waiting in Penn Station for my train when a huge light fell from the ceiling, nearly impaling a few college students next to me. I took it as a sign.
My parents were glad to have me back under their wing and didn’t argue when I spent weeks in bed, finally sleeping for the first time in months. I didn’t mourn the end of my relationship, it had been over for months. But I mourned losing New York and the daunting task of trying to figure out what my new dream would be.
I told myself and others that I would stay home for a few months, regroup, find another job in the city, and then move back. But I realized that I missed my family more than I thought I did. My siblings are amazing people: JonErik is 21, a senior at an arts college majoring in photography and soon to be guitar tech. Maya is 16 and has more sass and balls than I will ever have in my entire life. We stopped talking a lot when I moved to the city, which is a shame because they are spectacular people and nobody makes me laugh harder than they do. When you grow up in the same chaotic, weird as fuck environment we did, it’s hard not to have the same warped sense of humor.
Now we have nightly “family meetings” consisting of three of us sitting at the table bitching about life and have the funniest ongoing group chat. JonErik admitted that after I moved out, him and Maya didn’t talk much. I was a crucial missing piece in the family dynamic, plus I got my best friends back.
And so, life in Jersey went on and proved to not be so terrible. I still had unavoidable bouts of sadness where I felt trapped and hated living in the suburbs and missed Manhattan with my whole heart. But then something quite unexpected happened, although everything in my life was unknowingly leading me up to this point.
I read an article on how Tinder was “actually bad for women”, I downloaded Tinder, spent two days being absolutely horrified at the dating scene, deleted Tinder. Then re-downloaded Tinder while watching Jaws instead of going to see fireworks on the 4th of July and swiped right on a face that I would soon not be able to live without.
Hours of phone calls, thousands and thousands of text messages, long car rides, Starbucks runs, whispered proclamations of adoration, drunken confessions, love letters, falling asleep on FaceTime, lingering goodbyes. Simply put, I am in love. For the first time in my life, I am purely in love. I could write hundreds of pages about him, but those I will keep for myself. You’ll have to keep an eye out for my mushy tweets, Instagram pictures, and Tumblr poem reblogs to get an insight of this relationship, but oh, how in love I am.
Out of all the things this relationship made me realize about myself, the most important one was that New York was not the great love of my life I thought it was. I will forever love the excitement, the fancy hotels, the brownstone lined streets, the adventures waiting around every corner. But by god, I would give it up all over again for the Sundays I’ve spent, and all the Sundays I will spend, with him.
And so, that is what my life is these days. The bipolar combination of having this horrible pain circulating in my arm knowing it won’t ever go away, mixed with feeling blissfully happy and in love. I realized as soon as I met him that if I hadn’t gotten hurt, I never would have found this incredible guy. Even my mother brought it up the other day: my being diagnosed with this disorder was the only thing in the entire world that would have brought me back to New Jersey. Then he and I never would have met, because why would I swipe right on a guy who didn’t live in Manhattan?
I often think about how I wish I could time travel back to February of this year, to a particular night. I sat crying outside of the Museum of Natural History in the freezing cold, wondering how I could have fucked up my life this bad. How I felt so alone and scared and unloved and broken. I daydream about going to that poor girl, giving her gloves for her freezing hands and telling her, “Just hang in there. You’ll get through this. Just a couple more months. On May 20th he’ll be exactly 45 days from you. Hold onto that date. You are going to love him so much, and more importantly, he’s going to love you for exactly who you are. You are so close. You are so close. You are so close.”