Lost and Delayed

October 5, 2016

I hate who I’ve become on days like this. Anger seethes barely under my skin and I bark, forgetting the words I am responding to belong to another person with feelings.

She whimpers with tears welling below her lids and I feel like a monster. My mother is sick and fragile in body and spirit, and I am harsh and abrupt. She is scared to call for me to momentarily emerge from my lair. “Do you like who you are?” she asks. My eyes burst, followed by my heart…lastly by my brain. But I have already erupted. It is hard to breathe during the pain I feel and what I inflict on the one who loves me most in the world. So I cry alone and sleep.

When I snap, I immediately regret my words and actions. Even more, I regret how they hurt the one who grieves from them. I’ve been lost in a personal hell…living with my parents in a state I hate; where I have no friends; where I have no future; where I am trapped and will continue to be trapped. Life is a burden most days. I’ve stopped crying every day, not quite complacent with the life I’ve been forced to accept. A life where oxygen is always five steps away and new york is on the other side of the world—a world in which I simply exist and do not know how to live anymore.

When I drank too much, I slept like a baby. My mother doesn’t understand it. She’s never asked why. I needed to fall asleep—to fall away from the world and dream I was 28 again. When I lived alone in a studio apartment in Midtown, had hope for my future, and had someone I loved beyond comprehension—people aren’t supposed to love someone who is not a blood relative this much. I felt destined to be lonely when he showed up one day. Suddenly, my life turned on the “life” switch.

It was an adventure—cliché, but true. I was young and vibrant and he helped me realize I was worth being wined and dined once or twice a week. He was my best friend. He was loved more than life. He broke up with me twice. It crushed my soul. I refused to respect myself after that. Suddenly I knew he’d figured out I was a fraud…pretending to be this special person while I was just a giant mess of immaturity and emotional baggage. He woke up one day, and knew…and it took him a few months to gather the courage to do it. When I think of him, I feel dead inside and my throat closes. I stop breathing.

Being sick is stupid hard. I never feel even close to decent. It leaves me exhausted with a glass of wine, writing a confessional at the airport. So here I am. I am in a cubicle workstation, mascara running down my cheeks, nose dripping, waiting to escape the country for a week. I can be someone else for a few days. I am someone amazing and alive.

Wednesday, 9AM

When I compare moving to a death of sorts, way too many people are offended.  I refuse to become defensive because unless one has spent his/her formative years in a constant state of upheaval, the concept of personifying a location will seem bonkers.  In this respect–I’m bat sh*t crazy.

This is an indisputable and eternal fact: New York is the love of my life…so boys, get in line.  I rented a storage locker the other day to fill with my packed belongings and I am semi-terrified I will lock myself inside on moving day and cross my fingers no one checks it out for awhile.

I want to roll around on the uptown “6” platform in Union Square and climb atop the boulders in Central Park where my Multicultural Literature professor recited Reinaldo Arenas so beautifully, tourists would pause to listen.  I want to create performance art at midnight in Madison Square Park and run through Bryant Park on my birthday.  I want a security guard at the Met to yell at me for not having a metal clip with “M” attached to my sweater.  I want to share a cab with a stranger and for him to pull over to get my number before he drives off.  I want to bring my dog into every store I frequent.

I’m not very good with making and keeping friends…the ones I am able to grab ahold of for awhile are treasures.  Because of this, my city has become part of my identity.  I hope to be back in a year…there is no certainty, however–I expect only the unexpected.  But I can dream.

Why I’m Leaving, What I’ll Be Doing

Rheumy visit

Rheumy visit

As a victim of autoimmune slavery, I am living a life I did not want, subject to the whims and sway of a tyrant.  After my last blog, I received emails, texts, and social media messages asking my reason for leaving New York–plain and simple: Rheumatoid Arthritis.  

I do not intend to diminish the atrocity of human slavery by comparing it with my own condition–my intent is to clarify that my life is now dictated by a body plagued with a rogue immune system.  Unfortunately, my immune system is nearly as talented as myself and refuses to let up and allow me even a brief remission.  Because my condition only continues to worsen, it appears I have a progressive form of the disease…however, this could change one day if I find the right treatment.  Still, I wouldn’t wish this on anyone.

Yes, I talk about RA nonstop on social media and occasionally on this blog, but I write about my life and what is on my mind.  Arthritis is the only thing I think about 24/7–excruciating pain is difficult to ignore.  The stress keeps me up all night; packing/moving is torture; someone telling me to meditate more is asking for a toothbrush shank to the face.  Unless you have experienced years of chronic pain, you cannot dismiss it as “just arthritis” without being an ignorant d*ck.

Luckily, I have amazingly supportive parents (as they should be considering this is a hereditary condition) who want me to see a million specialists this coming year…I will embrace the plan in store because I’m tired of feeling like sh*t.  Hello nutritionist, I will eat as many beets as you prescribe.

hello peace

hello peace

Trainer, bring it!  Physical therapist…we will see.  Rheumy, please don’t give me methotrexate.  Acupuncturist, nothing new. Dad, thanks for the bicycle…I just need a basket for Delilah.  Mom…I will try not to fall through the ceiling again…especially if my brother-in-law isn’t there to save me.

I will be leaving in sixteen days (sobbing).  I will take pictures of the mountains and people falling off their treadmills at the gym…because that’s just hilarious.  I will take my niece and nephew trick or treating, participate in my beloved Jingle Bell 5K for Arthritis in Memphis with my sister and mom, and binge watch the cable shows I have not had access to for so long.

Even with the thought of rest and healing, I can’t help but die a little inside knowing I will miss my favorite time of the year in my favorite city in the world.  Fingers crossed I return healthy to enjoy Fall/Winter 2016.

LEAVING NYC…THE ONE THING I SWORE I WOULD NEVER DO

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Spring 2014 with Alan Cumming as the MC!

In about 2 ½ weeks I will be leaving the only city and state I have ever considered home: my beloved New York.  Due to corporate moves on my father’s part, I lived in seven states by the time I was nineteen, so I never felt like I belonged anywhere.  Making new friends was extremely difficult for me to begin with and I could not blend in if I let me do me. New York was number seven and I have been here for over eleven years. It is the love of my life.  New York taught me what bagels and pizza should taste like, ingrained in me an understanding of which corner I am on when I get off the subway, that you arrive at your destination faster if you ask your cab driver about his/her day and life story…

So, the highlights of the last decade+ and why I thank New York:

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Hidden West Village alley

I didn’t really start to get a sense of who I was/am until I was twenty-eight and the man I fell in love with encouraged me to express my opinions and embrace my brand of crazy.  He didn’t judge my quirks, spontaneity, dreams, ideas…he loved me more for them.  It took me twenty-eight years to trust someone with every piece of my life…my secrets…my heart.  It took twenty-eight years, but the first time I felt beautiful was the first time he looked me in the eyes.  New York gave me 2 ½ years with someone who encouraged me to break down nearly three decades of walls and let my rambling, loud, neurotic inner ribbon dancer shine (and still fit in because New Yorkers are crazy!!!)…

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NYU Hospital: my second home

I was a college dropout when I moved here, and after waiting tables became the bane of my existence, I enrolled in Hunter College as an English Literature, Criticism, and Composition major.  I cannot tell you how amazing it was to be one of the oldest students in all of my classes.  Contributing during classroom conversations (crowds in general, really) was a lifelong struggle, but because I was older, I didn’t give a sh*t about what anyone else thought because I had way more life experience.  I intimidated my classmates and had no qualms about flirting with my TA’s because they were all around my age (and I love nerds).  Hunter College also reignited my passion for writing and reading…turns out, my professors (and hot TA’s) didn’t mind my terrible grammar and constant overuse of dashes and dots.  Going to school in New York gave me a voice and rediscover a passion.

Rheumatoid Arthritis hijacked my body while living here, but one of the most rewarding experiences these past few years was sharing my story with the Arthritis Foundation and receiving a call from Bianca, the Manager of Community Development telling me I won a free massage!  The Jingle Bell Walk and Walk to Cure Arthritis were a ton of fun and raised my spirits.  Seeing so many participants at those events reminded me I’m not alone in this struggle and there are men and women without arthritis who understand how important it is to find a cure and support those afflicted.

Walk to Cure Arthritis 2015, Brooklyn Bridge

Walk to Cure Arthritis 2015, Brooklyn Bridge

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Empire State Building…my neighborhood as seen from Roosevelt Island

Living in New York granted me opportunities to attend events and experience things afforded to a fraction of the planet: NY Fashion Week after parties, the Met Costume Gala, sing for one of the most famous singers in the world while on a date with a guy in his band, participate in crazy performance art outside without receiving a single odd glance…it has, at times, been quite remarkable.

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M34 Bus

I will miss the noise, the winter beauty with twinkling lights on every tree and christmas shops set up in every park, dragging my dog along on my 4AM visits to the pharmacy, watching Delilah waddling in snow boots like a platypus, being able to walk home, cabs, public transportation, singing with Peter, INDEPENDENT THEATER!, my eclectic group of fantastic friends who accept me, falling in love with someone on the street…even if for only ten seconds.

So, GOODBYE NYC.  On to the next chapter…be back in a year (RA remission please!!!)…