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.

for this loss of mine these past 5 weeks

I’ve been avoiding writing this for a month, but just when I thought it couldn’t get worse, it did.

On December 14, 2016 one of my two best friends died. He fell down a flight of stairs and was on life support until his father could fly in from Belarus a week later. I loved this man since he was a boy. For ten years he was the kindest soul I’d ever met…still is, I guess. But he left so suddenly it hurts to breathe when I think of the accident. It was unfair but it was life. I just wish it hadn’t been his…of almost everyone I’ve ever known, he deserved to live an amazing life.

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On the 6th, my cat died. She was 12 ½ years old. I adopted her when I first moved to New York and didn’t know anyone and needed affection. She had different plans. She was wild and completely insane and scared the shit out of me. I would wake up in the middle of the night with her on my chest and her eyes staring into mine with her mouth open…leaned right over my face. Despite the issues we had, her death was torture to get through. I still cannot really talk about it.

Last Tuesday my other best friend died suddenly and unexpectedly. He got me through the other deaths. We met at summer drama camp when I was 16 and he was 17. He was gentle.  He was wonderful. He trusted me with all his secrets through the years. The world has no light anymore. He was the most talented person I ever met. His drawings and prints sold for thousands. I’m numb at this point…it feels so odd to not cry more…but it just feels normal now. I can barely accept what has happened and who I have lost.

My ex seemed to take advantage of the situation and has been kicking while I’ve been down. His behavior is vile and despicable and is a severe contrast to those I have recently lost. I think he made me love them and miss them more because I see the way other men can behave.

Do not settle for mediocre friends. Only the best deserve one’s love. Thanks for the outpouring of support. I appreciate the love.

RIP Stephan Cherkashin, Adam Paladino, and Suki. I love you.

devastation: dear Stephan…

stephan,

i want to scream out “why??????!!!!!!”  would you have skipped the roof had i visited last week?  would i have been there to stay with you during the silence? why did i turn around on the subway that day?  you were/are a better soul than i am.  i just want to hug and kiss you and say it–everything i loved you for these past 10 years and what all of this meant to me, at least.

my coworker, best friend, lover, friend again…stephan-2007-2008

i want to walk down first to catch you.  i’ve fallen flights at a time with only bruises.  i want to cradle your head and have told them to check for swelling in your skull like Rob.  i want one more night out at your work.  to flirt with your customers in front of you and for you to kiss me in the alley.  i want to get robbed on the subway coming back from brooklyn on that lonely train again.  i want to dance in the crowd while you perform.

i cannot come to terms with this loss.  i cannot believe you were on life support for a week before i was told.  i cannot believe i will never make you blush again.  i cannot believe this is forever.  are you the one keeping yourself fresh in my mind?  the hauntings?  are you forcing me to breathe during this suffocation?

i have printed pictures of us lined up on the kitchen floor.

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.

Delilah Has Cancer

IMG_1330The only person I can think about at the moment is my dog, Delilah.  Like almost everyone, I have been through my share of sh*t and relied on Delilah to snap me out of my drug, alcohol, and depressed zones.  She has dealt with more than her share of stress, and I cannot help but feel responsible for her very recent diagnosis: my sweet angel baby sent from Heaven has cancer.

The big C has been on my mind since I found the lump on her head.  The doctor originally thought it was just swelling from a potential head injury…and then it grew bigger.

People seem to think “it’s just a dog”–no, she saved me from myself.  When I got her I was an addict, a cutter, a depressive…and her love saved me.  She did what rehab, my psychiatrist, and therapists couldn’t–she gave me a reason to live.
Please, if your dog has a suspicious lump, bring him/her to the vet for a checkup.

Rape in Suburbia

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For the last fifteen years I have been in awe of a man I will call Tom.  Tom and I met as teens and I was always there to support him emotionally during the pinnacle moments of his life: coming out as gay, coming out as a victim of child molestation, coming out as a heroin addict…and, as of last week, coming out as a rape survivor.

Tom will forever be one of the loves of my life not only because of what he has endured, but because of what he has continued to endure, document, and share with the world.

Last week, my dear gay boyfriend was violently sexually assaulted by two men after consuming a single glass of wine at a party–a glass laced with a date rape drug.  After he was unable to defend himself, the men choked him to the point where his trachea was affected and his collarbone was broken.  When they finished torturing Tom, they left him completely alone to pick up the pieces–his identity was shattered and he is desperately attempting to recognize himself in the mirror.

Tom has proven to have strength beyond comprehension when he reported the incident.  Hospital staff and police expressed disbelief upon learning the neighborhood in which this event occurred as well as the fact that the victim was/is male.  Thank you Boston PD for your incredulous revictimization.

Although the events mentioned have taken a toll on my artistic, loving, beautiful friend, he is fighting to find his “normal” again.  His apologies for crying or coughing on the phone only incite my frustration with his victimizers with threats to smack him upside the head next time I see him–he has no reason to apologize.  He has no reason to succumb to society’s tendency to blame the victim regarding rape in the homosexual community.

Tom (whose name is not Tom)…you always have been and remain my hero.  I love you.

Tom has shared his story on Facebook and is struggling but gave me permission to write this.  He has a gentle soul and I feel the need to fight for him and spread the word that no neighborhood, community, or gender is safe.  Be aware of drinks you have not mixed yourself and “new friends.”

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.

On Being Bullied, Injured, and Shallow

The first time I ever felt someone truly saw my soul occurred during an acting class when my teacher told me he saw a wall holding back a tremendous amount of pain…

My pursuit of “perfection” completely steered my life when I went on a die at the age of eight–because I overheard a neighbor say that children (in general) are getting chubbier and chubbier.  I was a string bean, but I have based my worth by superficial numbers most of my life.

Self-hatred over my physicality, my inability to make friends, and  being bullied during middle and high school (emotionally and physically) …completely destroyed my life.  In middle school, my group of friends from grade school killed my trust in relationships by bullying IMG_4606me in the hallway.  In high school, heavy hard-cover hymnals (weighing over 2 lbs each) were hauled at my head…eventually it became just huge bags of M&Ms.  These boys would laugh at the fact I was crying.  Eighteen-year-old young men laughed at leaving contusions on the skull of a fourteen-year-old girl who was new to the school and state. My choir teacher ignored it until my mom talked to the dean.

We moved every few years and I always grasped wildly for a life reinvented.  Maybe they saw my desperation.  I was sick through all of the bullying…panic attacks, atypical seizures, severe depression, and horrible pain throughout my body; my mother had just been diagnosed with a form of muscular dystrophy; most of my pets died that first year from old age…I was an easy target for pretty disgusting behavior by both these young men, my choral professor who threatened to give me detention if this kept going on, and other faculty who turned a blind eye.  I considered suicide every day from ages 11 to 16.  It’s hard to write this without turning it into a pity-party, but as much as I would LOVE to proclaim I am over being hurt, I cannot.  I am human and will carry those scars for life.

Several doctors I have seen since beginning psychiatric medications, procedures, therapies, etc. have glanced at my chart and list of meds, looked me in the eyes and said: “But you’re so pretty.”–they stabbed me in the gut: I was only worth my physical appearance.

I dreamed for so many years that, as an adult, my life would have been worth the suffering because I would have turned out well-rounded with an amazing career and giant group of loyal friends who would never hurl a 2 lb hymnal at my head.  That has not been the case (I avoid churches and hymnals, alike)…I feel bad for the anger I have allowed to affect me 16 years later; to know my life will forever be inhibited by my physical disease and haunted past; for still hating myself for having to check off the “current/past issues” with “mental illness: depression, anxiety, self-harming” box at doctors’ offices.  I hate that I don’t trust anyone.

My only consolation is that I’m the nicest person I know, I only judge myself, and my dogs love me.  My suggestion: parents should keep a watchful eye as to what is going on at school, and teachers should be trained to identify students who are possibly being bullied in the home and/or at school.

 

Misdiagnosed

As many of you know, I was diagnosed with Rheumatoid Arthritis by both my surgeon and rheumatologist nearly two years ago.  Treatment included steroids, chemotherapy drugs, juicing, and physical therapy.  I was a strong advocate for the Arthritis Foundation (which I continue to support) and even moved across the country so I could focus on my “return to wellness” instead of my exorbitant Manhattan rent.  Arthritis became my nemesis and I was determined to annihilate this genetic abnormality.  A surgeon, a Harvard-trained rheumatologist, and genetics had me convinced I had found the cause of my unrelenting and, at times, debilitating joint pain.  And they were wrong.

Whether or not my arthritis is RA, psoriatic, or osteo is still up for debate, but what I am 100% sure of is that the major cause of all of my GI, neuro, vascular, skin, joint, muscular, dental, and ocular issues is the result of a condition known as Ehlers-Danlos Syndrome.

While 1% of the population suffers from Rheumatoid Arthritis (which I may or may not have), EDS is extremely rare and goes unnoticed by most physicians.  My doctors viewed me as a hypochondriac because I was dealing with so many issues throughout my body, and they never considered the possibility that my symptoms could be related–the result of a single syndrome.  As many as, 0.0067% of the population suffers from Ehlers-Danlos and most have never heard of it.

So what does one do upon learning she was mistakenly diagnosed with RA and prescribed chemotherapy?  I lost patches of my hair, my freedom (I could not work), spent nights sleeping on the bathroom tile, and learned where each of my organs is located because of the pain.  Do I blame the doctors or praise them for trying to help me as best they could?  The arthritis that was removed on March 19, 2014 hardly helped my knee (it clicks each time I straighten it), and my surgeon will not release his surgical report.  My entire body’s general pain is worse than ever.  I do not remember what it feels like to not hurt…even admitting that hurts.  Despite the misdiagnosis and horrific treatments and procedure following the surgeries, I understand the doctors and surgeon were clearly attempting to reduce my pain.  Neither RA or EDS is curable: they both have controversial treatments and could possibly be related.  It will take a few more years to confirm the RA diagnosis is working in conjunction with the certain EDS…until then, I will trust my current rheumatologist and focus on Ehlers-Danlos.

All I can offer is my advice: keep getting second, third, fourth, and fifth opinions.  I will never trust a doctor based on his or her collegiate pedigree again.

***for more information on EDS, visit: https://rarediseases.org/rare-diseases/ehlers-danlos-syndrome/