Life Support

When Stephan was taken off life support, my entire world collapsed   I’ve hit my head more times than I can count. I’ve had stitches and staples and am currently nursing a cranial hematoma that started out the size of a tennis ball. I feel guilty for being able to stephan playingsustain all these concussions while this person…who gave me life…fell down a flight of stairs and never woke up.

He was the most beautiful person I have ever met. I will never not miss our bar alley dances, surprise kisses, holiday living room picnics, being that “crazy chick in the audience,” shared pints of BB. I’ve been staring at my phone for hours, gathering the courage to delete his number. It has been recycled already but I just cannot press that trashcan.

Stephan died four months and five days ago. He was everything good in this world condensed into one normal human being. Every book and pamphlet I’ve read indicates I should be “normal” by now…and I am flailing. I would give my life to “beep” his nose again. I would sell my soul for one of his hugs. One cannot go back in time, but what I wouldn’t give to have gotten on that plane for my scheduled visit last December –maybe I would have been there; maybe he wouldn’t have been on that roof and fallen down those stairs. I bet he was smoking on the roof. What if he had quit smoking or never even started? So many “what if’s”….I can play that game all night long but it doesn’t change the fact that he was brain-functioning and happy on December 7th and had the plug pulled December 14th when his dad could get there from Belarus.

The idea of letting someone this important go was completely unfathomable. You do not img_1876know how you can survive pain like this until it is right there in your lap. It hurts to say his name and my heart is broken…but I’m breathing so I know I’m alive. Everyone says “It gets better”….but it doesn’t/hasn’t. Over four months later, it just hasn’t.   I only cry about once a day now except on the 7th and 14th of every month when I have a total meltdown. Grief chat rooms are totally pointless. I just gotta get through how I’m getting through. My dogs. My dog-ters give me life. I’m open to suggestions on how to process grief. Hit me up.

Advertisements

When You Leave the Party Early

It starts when your heart stops. There’s a certain moment when you are between beats and the breathing stalls…even your brain takes a break. The computer screen in black print declares your best friend is dead. On Facebook. Twice in a month. I lost my two best friends in a month—their deaths were very sudden and I discovered both tragedies on social media. With no mutual friends on either side, do I thank Facebook for letting me know why no one will ever respond to my texts and calls again? Or do I get pissed by how I was informed of their passing?  I think it would be just as hard had I been told in person–the situation just sucks all the same.

Some nights I cannot help but break down. I have survived the unimaginable: I lost the ones who held my heart together. My two best friends. My demon cat. There was a comfort with Stephan…a warm knowledge that he was always in my corner—he always had my

img_4671

Tattoo #7 For Stephan Cherkashin who lived for music 12/14/2016

back. Adam was the friend I spoke to 50 times a day. He brought up gossip when I needed a laugh; he relayed dreams he had of us living in Italy and described my designer wardrobe; he told me I was the most beautiful woman he’d ever seen—he had a way with words…to make you believe them.

They left me alone. I feel so selfish but it is all I can comprehend: I am now alone. I have a super bad day and who do I reach out to? Who can I gossip/cry/laugh/pee on the phone with? When your two best friends die within a month of one another, there is no time to begin rebuilding your friend base…you’re not even halfway through the grieving process of the first when the second is found DOA a few weeks later. No one writes a book for this…even a manual. My sister asked my mother, “What do I say to her? What can I possibly do? I’m speechless.”

In my experience this past December/January, 99% of those left to pick up the pieces avoid you because it is awkward and sad and no one likes to place him/herself in awkward-sad situations. Even my cat…my cat died in between it all.

My heart is crushed…shattered. There are no pieces to glue back together. The only positive thing regarding the terrible depression following Stephan’s passing is that I was

img_4679

Tattoo #8 for my Queen Adam Paladino. My other half. 01/17/2017

already on that level when my cat and Adam died. I was already having a difficult time sleeping and thinking and not punching things. Only, I now have no Adam to sob about Stephan and Suki to.

Pottery and memorial tattoos have been amazing crutches through this process. Pottery gets out the aggression and the energy usually spent scream-crying and the tattoos feel like I have a piece of our stories with me. Such amazing men in my life who meant everything in a world with so few friends and fewer bright moments. I’m flailing midair, grasping at anything in the wind tunnel I’m spiraling down.

I don’t know what I’m supposed to be learning here. I’m not even going to try to figure it out. All I know is it hurts like Hell and they deserved better.

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.

This Was Not Supposed to Be My Life

IMG_2920At one point I was extremely open on this blog–too open–and I hurt people I loved and still love out of hurt and what I considered “artistic expression” (aka deleted blogs).  I wrote things that belonged in a personal diary and which should never have been published publicly in a state of passion.  But my health is my own…I am dealing with issues and emotions too many people are dealing with and experiencing, themselves.  So tonight, in a fit of passion, I am angry and blabbing about it as I tend to do.

On March 19, 2014 I was diagnosed with Rheumatoid Arthritis after my second knee surgery (I know the date because it is my best girlfriend’s birthday).  Soon after, I saw a rheumatologist (joint doctor) and began a chemotherapy drug called methotrexatea medication originally used to treat pediatric leukemia.  I would ingest it Friday evening, Saturday afternoon, and Sunday morning.  This doctor-prescribed medication left me in agony for almost half of every week.  I slept in the bathroom, curled around a toilet; I lost hair on my arms and patches of my scalp.  Rotted teeth and seared organs, I went without sleep and the ability to pick myself up off the floor due to a medication which was being used to manage my RA.  As I’ve said before, the doctors were clueless as to how my symptoms were threads woven to create my actual illness.

I was told I have Ehlers-Danlos Syndrome two months ago and upon hearing this change in diagnosis, I am shocked that doctors prescribed me chemotherapy without being 100% sure I had Rheumatoid Arthritis.  So, do I have arthritis?…yes, but is it a type which would have benefited from chemo?…not sure.  Could doctors have put the pieces of my health history together and figured out a certain diagnosis to replace or add to what was assumed?…absolutely.

Drugs like methotrexate have serious side effects.  As with any chemotherapy medication, one experiences nausea and digestive pain to a degree which makes it hard to breathe…so severe one’s boyfriend has to pry him/her from the bathroom tile.  In my case, I had a fifteen-year history of severe acid reflux or GERD (gastroesophageal reflux disease), and methotrexate destroyed my already-compromised GI system.  On Tuesday, I had another Upper Endoscopy (aka gastroscopy).  It is the most recent of over a half-dozen I’ve had since I was fifteen and it was mind-blowing, yet expected: my esophagus looks like hamburger.

My doctor has been scoping me for eleven years and he did not sugarcoat my situation.  My esophagus (the pipe which attaches one’s throat to his/her stomach) has been so traumatized since I began and ended methotrexate that I have to completely alter my diet and lifestyle, have another gastroscopy performed in three months, and possibly endure surgery in order to prevent a condition called  Barrett’s Esophagus and/or esophageal cancer.

So, I was continually diagnosed with a crippling autoimmune disease which could not be proven, I pumped my system full of chemicals designed to kill one’s immune system for said disease, and now the side effects haunting me from methotrexate and other issues could potentially lead to cancer.  I don’t know who to blame other than myself for trusting a surgeon and doctors who refuse to answer the phone or forward my medical files to a new team of doctors or myself.  I  have certainly never lived on water and bread, but it is clear past prescriptions only exacerbated my issue.

And so my epic continues.  I wrote a blog about being misdiagnosed and I thought that would be the extent of the story, but I now feel completely trapped in a body I do not recognize–a body that is slowly trying to kill me.  Where does this end?  One never expects his/her health to begin failing quarter-life, or that one’s quarter-life could become midlife.  At thirty-one, I assumed I would be married and have a stable career…or any career, really.  No matter how smart you are or where you end up going to school, life will always surprise you.  No one knows whether or not they will live the life they expected… I can only hope this life becomes the life I want to live.  I am banking on it.

 

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.

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

IMG_2774

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:

IMG_6285

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!!!)…

IMG_2705

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

IMG_2394

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.

IMG_2847

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!!!)…