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.

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

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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

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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.

My Depression Is Not Taboo

I’ve never been “normal”—literally, never.  So many people have struggled with depression at one point or another for who knows what reason.  It feels uppity to claim my story is worse than any other story reported in history…but just functioning is a IMG_1581struggle for me.  Thirty-one years of sobering/stoned horror can be relived in my journals and notes from countless therapists and psychiatrists.  Time does not heal all hurt, however, and I can admit from the depths of my soul:

Depression has been the biggest struggle of my life.

For thirty-one years, my mental health has been a total lie.  My quiet “perfect” persona was completely manufactured—a handful of people have ever seen who I am with no barricades, cautionary signs, etc.

 I have been asked what thirty-one years of chronic depression feels like, and the only response that does not offend the general public is: excruciating. Existing day-to-day is almost numbing—I have learned to disassociate from my body. This is how I live.

In no way do I expect anyone (outside my medical team) to understand my physical/mental/emotional issues, but I do expect tolerance and an open dialogue when confusion surfaces.  I cannot count the number of times doctors would view my chart, see a list of antidepressants and antipsychotics, look me in the eyes and say, “but you’re so pretty.”  I’m sorry, I will come back next time my face looks jacked.

My writing about pain tends to come across as cold and factual—it is this way for a reason: I can only expose my weakness if writing from a distance because it makes others more comfortable. I will work on that.

The Most Familiar/Dreaded Sight In My World

and all i see are bare walls

white clouds blind me

white clouds blind me 10/12/15

only bare walls, once again, all i see

industrial

shiny

white

a blank canvas comes to light as i spin all alone

no beginning

no end

always white shrieking–

lacking fulfillment

a soul always shrieking–

low-lit empty hollows

always, i am shrieking–

starting over again?

again?!?!

my industrial heart cannot be painted anew

he tries anyway

whitewashing my life with the salt from my tears

he still tries

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!!!)…