CHRISTMAS 2018

It seems like only yesterday that Ebony was here. I feel that way all the time. Ever since she passed, friends who have lost loved ones have told me, have cautioned me, that the first year is the hardest. “Everything is going to be ‘The First…’ something and it is going to be difficult. They were right. But ‘difficult’ is a word they use in generosity: it flat-out fucking sucks.

I have been reliving every day since she needed 24-hour care as if I was living my own personal version of “Groundhog Day” directed by Ingmar Bergman. I loved her so much and miss her so terribly there are some days I cannot get out of bed. Even when I have to pee… I can just pee in an empty bottle of Powerade and slump back into the covers, because who gives a fuck? What’s the point?

Some days are okay. I have a mandate to work one day a week at my friend’s restaurant, tending bar. Not that I want to talk to anyone, but mercifully it’s so busy I don’t have to. But I don’t want to go out, I don’t want to engage with anyone, and yet, doing so distracts me enough that I don’t flame out and everything kinda works out. But when I’m back home, alone, thinking about Ebony, I am miserable. Completely fucking miserable.

When I lost Ebony, I didn’t just lose my lover. I lost my best friend; my champion, my confessor, my life coach and my partner-in-crime. I lost everything when I lost her and I have zero coping skills. I’ve never lost anyone.

People say, “Ebony would not want you to suffer this way…” but it’s meaningless. The pain of her absence does not subside and I figured and wished by now it would. But it hasn’t.

The many beautiful distractions of the summer, seeing bands, going to concerts, is gone and I find myself alone and miserable. I’m not a good person to bring to parties: I only have one thing to talk about and who wants to hear all that shit?

When I wake up tomorrow, on Christmas Day -- because it is never tomorrow until I wake up -- all I will be able to think about is everything I’ve been thinking about: the last few weeks we were together. Harrowing goddamn stuff.

When it became apparent that Ebony needed 24-hour care, I vowed to do anything and everything to give her a life and not just an existence. I just loved her so goddamn much I didn't want her to have to suffer like that. I wanted her to be at home, surrounded by love and people that loved her.

This time last year, I asked all of our friends to make a little video, anything, just wishing her a Merry Christmas. I knew. Oh, I knew. I hoped against hope that things would change, but I knew. She never let anyone in on this, and that included her mother. So that was a whole thing. I knew, her Mother didn’t. Fun. Nevertheless, we persisted.

This time last year, all of you, most of you, participated in ways that I can never repay in a million lifetimes. I couldn’t bring Ebony to you, but those little videos and all of your efforts brought you to Ebony. It was, in a manner of speaking, a small miracle. A Christmas Miracle. If I was a screenwriter, it would be one of those crazy, awful LifeTime Christmas movies that run incessantly from Thanksgiving to New Year’s. “A Cancer Christmas in Newport” or some god-awful nonsense. Nevertheless, it would have been beautiful. Starring the chick from “That’s So Raven” and some washed-up 80s rockstar. 90 minutes of grief and a lot of poinsettias.

I obsess about this because whenever I wake up, a lot of times anyway, I think Ebony is there. In the next room or in the shower and I need a few minutes to gather my thoughts and get it together and realize I was dreaming. And then I realize I’m back, alone hugging my pillow and missing her terribly.

I constantly feel like a failure. Like Liam Neeson at the end of “Schindler’s List.” I could have done more. What could I have done to make things better, beyond whatever it was that I had done? This haunts me. In her last days, when she could no longer swallow and had to have... ahh… this thing, this stomach thing called a “percutaneous endoscopic gastrostomy” it was so devastating. Not just to me, but to her. No more pizza, no more anything ingested through her mouth. I was heartbroken and I know she knew. This haunts me daily.

I claw through the veils of darkness and try to find some comfort, some sanctuary. But it does not exist. I cry for her, alone, and have no way, short of writing about it, to find any comfort. It was awful and now I am here to contemplate it all and, in the end, I am miserable and alone.

I cherish silly things in her absence. There is a bottle of Diet Coke, from when they were promoting “Share a Coke with friends” or whatever. We have a 16-ounce bottle of Diet Coke in the fridge, with her name, Ebony, on the label. I won’t let my Mother throw it out. It has to stay there. It was hers, one that she found on I-95 on one of our last drives up. It will stay there until I am gone; at least as far as I’m concerned. I cherish things like that.

So I have been thinking a lot about this time last year, when everyone came to us to show their love for her. I have been crying like a girl who just lost her puppy. I keep doing this and keep trying to snap out of it. But I will never forget the amazing outpouring of support that she was shown and I cherish it so.

Of all the amazing, beautiful, selfless efforts, there was one that stood out. So many, many videos stood out -- Richard Patrick, Johnny Kelly -- but there was this one… Not a person I solicited, but a person who gave of himself that neither Ebony nor I had any contact with. A man who so influenced rock and roll and heavy metal that his legacy is infallible. A man who inspired so many. A man who battled many demons. A man who consorted with Muppets. His name is Alice Cooper. And while we all sit back and consider this time of selflessness and charity, here is a man who gave of himself to baffle and entertain a beautiful girl he did not know, because he is just that amazing. And I want to share that with everyone, once again – and thanks to Katherine Turman – because, at least for me, this is denotative of the true meaning of Christmas.

AT SOME POINT later today or whenever – on Christmas – we are going to have “chowdah” from the Black Pearl (Ebony loved clam chowder after I brought her up here and turned her into a “Chowdah Monstah”) and then I will open up some red wine and toast her magnificence. Not sure what 2019 will bring or if it will ever be better, but I will continue on, trying to be better and trying to navigate my way through this fog.

I am reminded of those of you who knew her and those of you who came through for us and I thank you from the bottom of my black heart. In those last days at the hospital, which haunt me, I remember that my friends – our friends – Angus McIndoe, Kerry DiGiovanni and Leslie Silva – all came by to support us and lift us up. I may still be down, but I would be far worse off without all of you. And Lez, who is far more spiritual than I will ever be, I thank you for being there when you did. And Deeg… Deeg... thank you for everything.

So now. Trying to get it together here. I hope you are all having a Merry Christmas and I wish you all a Wonderful New Year! I know Ebony would feel the same.

And one last thing. About this video. I had no idea this was coming and when I showed it to Ebony, she leaned in and then turned her head toward me. She couldn't speak at that point. My mother, her mother and I laughed. I said, "Yeah. Fucking Alice Cooper. You got friends in low places." And she just shook her head. And I replayed this thing about a hundred times and she just kept looking in disbelief. It made her happy. So happy. Me too. Because -- Jesus Fucking Christ -- how in Holy Hell did Alice Fucking Cooper get involved? Well... we're all still baffled to this day and it doesn't matter. His effort made Ebony happy. So who cares? And what else is there to know? That's it. This made her happy.

So. Merry Christmas. And Good Lookin’ Out~!
And you should all listen to more reggae.
And Alice Fucking Cooper.
I love you all.

-- Mick

A Black Hair Thing

Ebony, 2015. She used to do her own braids. It was a three-day process. We would go to the hair store on Jamaica Avenue , and buy all these sleeves of hair. Then we’d stop at the liquor store to buy wine (red), and when we got home she would start taking her braids out. We would watch movies, Key & Peele, SNL, whatever... and that would be Day One. Day Two, when she took out all of her braids, she would do some fancy magic black girl thing when she washed her hair, and come out like this. Goddamn, she was beautiful. So that was a day of rest. And more wine and movies, and, you know. Day Three was twisting that shit back up and — with no mirror — braided her hair. Sick braids, too: she was so fucking metal. And I would sit next to her, amazed. I used to tease her and say, about her hair like this, “Is that called ‘The Fern’?” And she would squint at me and say, “It’s not called THE FERN! It’s natural! I will fucking kill you and so will every black woman in America!” While she would be doing her hair, I would occasionally touch her ankle or caress her leg and she would say, “Baby, not now. This shit ain’t going to take of itself.” And I would pour her a glass of wine and we would watch more movies. And it was one of my favorite times because it was so intimate and special, for her to share that with me. I had ten years of that and it will never be enough. I have shared this with other black women and they were shocked: “She did her own braids?” Yup. She was a fucking badass. I miss her so terribly. I love you, baby. #ebonyandmarktla

I wanna share something. 

A lot of my friends -- and I am blessed and so lucky to have so, so many friends – who don’t know Newport or live in L.A. or wherever, don’t know the story of my time at Puerini’s. And I would like to share that with you. 

Some of you who know me know that back ’99 I dated a stripper. She was an exotic dancer, an adult entertainer whose claim to fame was a 50-inch bust. Yeah, I was into that. I moved from NYC to Florida to be with her and was with her for two years. Fun time. But like a Hemingway novel, our fun time ended gradually, then suddenly. 

Having given up my apartment in NYC, I moved back home to Newport (Rhode Island). This was 2001. I was broke, had no direction and was broken-hearted. I felt like a failure and had nowhere to turn. 

Chris Jones, a dynamite old friend from way back – also the singer of the semi-legnedary local hardcore band Verbal Assault -- at the time, was working for Dan Puerini at his eponymous Newport restaurant, Puerini’s as a sous-chef. It was one of the two great Italian restaurants in Newport (Mama Luisa’s is the other; Saradella’s sucks ass and all of their sauces come out of cans. Total fucking garbage but they had a full bar, so you figure it out) and had been around for years. Dan started it when he was out of high school and was only selling meatball sandwiches and calzones, as I recall. Nicole Ziloumis worked there as a bus girl when I was in high school and Nicole was beautiful and has this amazing ass. So of course I went there, but not for the food. But the food was equally amazing. 

Dan built the place up from a BYOB joint to a full service, semi-fancy Italian restaurant with veal dishes and recipes from “the old country.” It was magnificent. Ultimately, he hired a lot of young, local teachers who were still working their way up to tenure and that sweet, sweet gig of getting paid year-round and having summers off. Most of the staff was well-educated and cosmopolitan, even world-weary; but all were female. 

Jones knew I was back in town and looking for a gig. So, at the time, Puerini’s only had girls on the floor and the kitchen was all men. Kinda old school and cool. I showed up one day, nervous as HELL and Dan came out in his white checks (pants that cooks wear). He could smell the smoke on me. He said, “Listen. Jones says you’re great. So, I’m going to give you a chance. We really haven’t had a man working the floor in years, so your real test is going to be getting approved by the girls. Also, there’s no smoking one hour before your shift and no smoking during service.”

I was so desperate and grateful, I said, “I’ll quit today.” Dan laughed. 

I did though. I really did. I quit smoking, I quit drinking and I started training, trailing, at Puerini’s. 

Amazingly, and as you might have guessed, I was accepted by the ever-so-slightly judgmental staff. Back then, Dan did not believe in air conditioning. For real. This guy ran a restaurant in Newport that was packed all summer and in the middle of the hottest months, had no AC. He felt it detracted from the eating experience. Or something, who the Hell knows now? But running around all summer, sweating my ass off, spending my days at the beach and working at night, I lost a bunch of weight and felt better about myself. 

It was an unforgettable, glorious experience. There’s more, but that’s the context of Puerini’s. I ended up coming back to work summers in ’02, ’06, ’07, ’08, ’09, ’10 and ’11. I would sublet my apartment in Washington Heights and come back and stay at my Mom’s. Beach all day, working with pretty girls all night serving amazing food and got paid for it. Banked the money, went back to Manhattan and hustled writing gigs. Pretty sweet. 

When Ebony and I met, I dragged her back here and showed her my hometown. It was an easy sell and she fell in love with it. I turned her into a Chowdah Monstah – she had never had clam chowder before and became an aficionado. (Her faves: The Black Pearl and Flo's) All the people at Puerini’s embraced her. Dan, Joe Flowers, Joey Piotti, Meg McCoy – whom I have known since she was 15 – Nicole Santaniello, Kerry DiGiovanni, Shelly Pinto, Jamie Socci, Stef Christman, Erin Kenny, Anthea Lewis, MaryEllen Fitzpatrick, Cara Lee Willi, Jean Pinhero Puerini and Jennie Gehringer Puerini. Jen Marton, who only met Ebony once, embraced her. And people who were part of Dan’s family: Karen Puerini Razza and Peter Razza, Anthea’s mom, Beverly, and the Olympia Dukakis if she was Italian and the matriarch of the FAM, Marie Puerini (God rest her soul). 

Ebony once asked me, “Are all your friends Italian? What are you, in the Mafia?”

I replied, “There’s no such thing as the Mafia. But if there was, and by some freak accident, I was… you would be my goo-mah.” 

When she finally saw “The Sopranos,” (every season on HBO GO) after countless times trying to get her to watch, she said, “Oh, I get it now. And I am not your fucking goo-mah! If you ever say that again, I will have you whacked!”

Damn, she was awesome. 

So when Ebony needed 24-hour care, I was in New York, in Queens and working as an Entertainment Writer and Producer for ABC News Radio. I wrote for them and sometimes for the dot com. It was a sensational gig and I loved it and I loved the people. But things went south for us and Ebony needed me. I managed to get her up to Newport for Thanksgiving and Christmas, but my Mother – who has a host of health issues and is now approaching 75 – had to go to the hospital a couple of times. Times that I could not return to help because Ebony was my priority. All those people I mentioned a couple of paragraphs back… all of them – ALL OF THEM – found ways to help. They visited, they sent Care packages to us, looked after my Mom and fucking rallied for a fucking no-good Irish shitbag like me. They brought food, went shopping (Jen Marton) and fed the stray cat my Mom took in. 

Flash forward: Ebony passed on March 20. I turned 50 on March 30. I like to joke that Ebony decided to check out before she had to see me grow old. But I came back to Newport to drink my face off on my birthday – we were supposed to be in Italy – and I was surrounded by all these amazing people -- Louise Ruggeri, Michelle and Ian Estpahn-Owen. People I am proud to call my friends. Maybe I haven’t been the friend to them that they’ve been to me, and that haunts me; but they were fucking here for me, even if I was drunk and ridiculously self-indulgent about it. Chris Jones’ sister, Sarah – whom I have adored since high school and who was probably was the fulcrum for me as far as having a, um… “black girl thing.” She and her magnificent boyfriend took me out, knowing that I needed to keen like an Irish widow. All these people just fucking rallied. I will never and can never forget that. 

So, flash forward: here I am. It’s September. I have spent the summer crying and going to concerts. It’s what Ebony and I would be doing otherwise (except the crying). And Dan Puerini asked me to help him. How the FUCK could I say no? What kind of person would I be? It wasn’t easy for me – I need my friends but I am a right crying mess of a person – but I did it. Three “guest bartending” shifts: no problem, right? Last week he told me that if I wanted it, and I was up to it, he would like me to work one shift a week. Thursdays. You know what? I didn’t hesitate. 

And tonight, I felt good for the first time in a long time. I lost myself in the work and the anxiety wasn’t there. I was just working. Watching this amazing food go out and banging out drinks (I don’t like to make “pussy drinks” and thankfully he doesn’t have Alize or Midori) and making people happy. It was good for me. The money doesn’t suck, either. But, to be honest, I would do it if there was no money. Because you know what? After everything I’ve been through, I really don’t give a fuck. At all. The most important thing in life, as I have learned, is family and friends. Without that, you got nuthin’. Nuthin’. 

And I have family and friends and I could not be more proud and honored. My happiness and sanity may always be at risk, and the depths of my depression over losing Ebony can only be measured in fathoms. But I have this one night, among true friends, and I can tell you that there is no better feeling. I wish Ebony was here for it. But she knew and she loved these people as much as they loved her. And I am lucky to have them in my life. Not because of how they treat me, but because of how they treated my mother and how they treated Ebbs. 

So: I am working (if you can call it that) every Thursday at Ida’s, Dan’s “new” restaurant, which features some items from Puerini’s and some of Joey’s unique creations (short rib sliders? OMG~!). And I’m okay with that, and after tonight, I can tell you that I’m a little bit happy for a change. 

So if you wanna stop by and sit at the bar and make fun of my hair (I have to pull it up in a pony), please join me. There is so much fucking heart here, it's like the cardio wing of your local hospital. And it tastes SO good. Which is something Ebony would have loved. So there.

She Sells Sanctuary b/w World Coming Down

I have been home for a little over a month now. I am miserable.

I have visited with friends, here and there: coffee. People love to have coffee and I am one of them. Over coffee, you talk, you observe the rest of the world as it is coming and going and you kibitz. It’s good: it helps. But nothing changes.

My transition, such that it is, has been awkward. But nothing has changed.

Not yet.

I am not adjusting the way I thought, or hoped I might. It’s difficult for me to be around people. One of my best friends, his mother passed around the time I was still taking care of Ebony. I was gutted. I guess everyone knew it was coming for his Mom, inevitable: but no less upsetting. She was great and she was great to Ebony. There was a memorial, up here in Newport, recently, around the time I returned. Of course I attended; but I was so overwhelmed by the sheer amount of people I knew – people who knew my story but had not interacted with me until that day – and ever since I’ve been shying away from social contact. I have been trying, but…

It’s difficult. I can’t explain it. One-one-one is easy, or easier; among people, two or three or more… not so much.

Every day, every waking moment is about Ebony. That is all I think about. I am surrounded by her. My mother worries that I making my life -- this house -- into an Ebony shrine: her presence is overpowering: her absence is shattering.

With people, one-on-one, I find I am “pretty okay.” But mostly I am wishing to return to my bedroom, to my Queen-sized bed, to a collection of pillows I have assembled that looks like – in my head -- a Martha Stewart photo-spread covering an Ian Schrager hotel bedroom. There are too many pillows. Every day in the morning and every day at night, I shower them with her perfume and clutch one of the pillows when I am trying to sleep… desperately trying to recall holding her, back when things were good.

Last week, the son of one of our neighbors, my mother’s contemporaries, stopped me and asked how I was doing. He knew about what was going on, but I hadn’t seen him since Thanksgiving. I had to run down the whole thing and that kinda set me off. It’s just hard being around people at all. Harder still to relive everything – all the bad things and the reasons why.

I spend a lot of time trying to think about the good things – and there are SO many – but something as simple as that -- explaining the eight months of Ebony’s decline thanks to a fucking malignant brain tumor – I find it overwhelming and retreat to my ersatz Newport boudoir, a place where Ebony and I spent much time. I am now long out of our apartment in Queens, but we spent a lot of time in Newport and I cannot escape the time spent here.

So, yeah. It’s just not that easy. One-on-one, okay; but around people is awkward and weird and I always want to leave. I simply don’t want to constantly relive the last eight months, which were horrifying. It’s not you: it’s me. Truly.

I say this because I am still trying to figure out, I don’t know, “things.” Where I’m at; where I’m going; what I’m going to do. I have no idea.

I am vexed with myself, troubled and confused. I think sometimes, “Hey, I’m feeling better!” And then later – days, hours, minutes, sometimes moments later – I am a mess.

It’s not that I don’t want to be among my friends or be positive and hang out and bitch about whatever… it’s just that anything can affect me.

When Ebony was first diagnosed with brain cancer, we were encouraged to seek out “grief counselors.” At Ebony’s insistence, I did meet with a… whatever. I don’t know. Psychiatrist. Counselor. Bearded dude much younger than I am. I took to it as if I was Tony Soprano. I was against it at first but I went for Ebony, and later… later, it was okay. But it didn’t change what was happening to Ebony and that didn’t change how I thought. When things got bad, I stopped going. I simply could not afford it but mostly wanted to be with Ebony. Because what the fuck?

Ebony was a huge part of me. Ebony got inside my head, long before we even slept together: more than anyone ever did and more than I can explain right now. We were not merely lovers -- engaged, betrothed -- we were best friends. BEST FRIENDS. I’ve never had the kind of intimacy I had with Ebony in any other relationship. I told her all my secrets and she told me hers. Can you say that about your love? Losing her was not just losing a partner: I lost everything.

Now, here I am, three months later, and nothing feels right. I feel like I am going through motions. I oblige everyone who reaches out to me as much as I can, but sometimes I can’t return a text or a DM or voice mail for days. I also don’t want to be a bad friend, so it is especially difficult to meet people. I don’t have much to say about the world in general – and who cares? – because all I have is this awful, aching pain. “Oh, hey, how’s it going?” – “Well, I am miserable…”

Ebony’s presence in my life is overwhelming: her absence is shattering.

I think a lot of people were worried -- maybe rightly so, maybe not – that I might kill myself. After Kate Spade and Anthony Bourdain – whose food I am proud to say I have consumed back in my Joe Allen days when he was at Les Halles and I was at Joe -- I understand the flood of messages. Let me say this clearly: I am not going to kill myself. I AM NOT GOING TO KILL MYSELF. I might delight in the idea after a couple of glasses of wine, but I have ZERO intent of ever doing such a thing. Not after what I have been through with Ebony. ZERO. Okay? She would not approve and I need to live. For her. But living right now… not so easy.

This is where I’m at and I don’t mean it to be alienating but at the same time, I crave and need and am comforted by my solitude. Sometimes, I just HAVE to be alone. I am an only child. Ebony and I were both only children raised by single-parent mothers. We knew each other before we ever met. Some nights, we would sit at opposite ends of the couch and not speak for – I don’t know -- hours: because we needed that time. That was our thing that we each understood. And that’s nothing against anyone. So if you don’t hear from me for a while… that’s why.

I find myself answering people, in their texts and DMs, that, when I am asked how I’m doing, I say, “it depends on what day it is.”

Yeah, I know, that my world is coming down. And the world, and the world, yeah: the world drags me down.

Angel on my Shoulder

My Raphael sketch of an angel, the first tattoo I ever got, now 30 years old, re-inked and electrified for the 21st Century, for Ebony. Artwork courtesy of Darren Rosa at Rising Dragon Tattoo on 14th Street (the same artist who did my dragon). I know she would love it — especially the purple. It is a small gesture but one that I will cherish for the rest of my life.

Darkness Over Europe

There are four bottles of Jack Daniels on the kitchen counter. They are empty. At this point there is more Tennessee in me than New England. When I piss the scent is so fragrant it smells like someone baked a cake.

I miss Ebony so desperately. I have resisted all human contact but I have craved it so intensely. The touch of a lover. Ebony’s touch. In my grief, no less than seven women have offered themselves to me, in the kindest ways possible. They will forever remain anonymous. They are all beautiful, too. One is married, two are black – which, yeah, I guess that’s my thing now (“Once you go…”) -- and one, I am uncertain of what the current politically correct vernacular is, so, let’s say in a Jerry Lewis way, “a lady-type person of the lesbian persuasion.” She told me, “I want to take your pain away.” I don’t know if that’s ever, ever going to be possible. I am truly, deeply flattered and humbled. Somewhat baffled, but definitely humbled. Geographically it doesn’t even make sense – most of them are not on the East Coast or in the United States and none of them knew Ebony. (Hello!) But it’s kinda weird. I didn’t know that was a thing, but apparently when you lose someone, people want to sleep with you. I’m not judging – and I’m certainly not against it – but I don’t think it’s time for that. If it ever will be, I don’t know: but definitely not right now. Also, I have stuff to do.

So I have not taken any of them up on their magnificent offers. Instead, I wander around from the bedroom to the living room, watch The Kennedys documentary on CNN and SNL reruns On Demand and try not to stare too intensely at all of the things that remind me of Ebony before I black out. There is a picture of her that I had blown up and it sits across from the couch. It is of her posing against a jet turbine in her FA outfit and she’s smiling. It makes me smile and it makes me cry. My heart races and my face gets hot and my head is banging from the Jack and the tears run hot down my cheeks and I sit there and stare at it. This apartment is a shrine to six and a half years of our ten years together. I have to leave but I kinda don’t want to. It was our home. I’m supposed to be packing, but I am overwhelmed.

For six and a half months, I took care of Ebony here, in the apartment, because I would not put her in a home or fucking facility. Her mother, a saint, came up at the end of September and stayed with us on the couch – fully thinking this was temporary – and was here until March. Our story, Ebony’s story, is one about love. And now I wake up and realize that there is no one who loves me.

I remember a time in college, my freshman year, when a bunch of us pretentious English majors were sitting around trying to outshine each other with our knowledge of “important” writers. A lot of these guys were quoting philosophers and a couple of them talked about Nietzsche. You know those guys: they have the forward-flip preppie haircut, buzzed in the back and wearing LL Bean snowflake sweaters. Those guys, quoting Nietzsche. The only thing I ever got from that guy, that I ever related to, was this quote that, I don’t even remember where it came from, but he said, and I think I am paraphrasing, “Become who you are.”

I am now 50 years old. I am, and have always tried to be, happy-go-lucky. But I am miserable. I look like a washed-up 80s rock star and I am fine with that mostly because that is what I looked like when I met Ebony. She liked that. But I look in the mirror and try to see what she saw and I cannot. I am a phantom, a specter, a shadow of myself. I am not who I am or should be.

When I first met Ebony I was in a dark place. I listened to The Sisters of Mercy and Ministry a lot. Ebony saw me and reached through the veils of darkness, pulled me out and showed me the stars. And she said, “I love you.” I. Love. You. This crazy, beautiful, amazing person, this amazing soul. Loved. Me. This giant, magnificent obsidian beauty who smelled like the beach, picked ME. Me –of all people -- a total fucking Irish moron. And now here I am, alone, in a dark place again.

I listen to Bobby Darin and Motorhead, and Dinah Washington and Judas Priest; Filter and Nine Inch Nails; Ministry, The Cult, Type O and The Sisters and The 69 Eyes and I think about Ebony and just hug my pillow. The neighborhood is filled with noises and the guy downstairs keeps weird hours and I can hear the muffled conversation he has with his friends or maybe playing video games and I wonder if he can hear me playing music and crying.

I taste the Jack and remember the first time Ebony and I kissed. That is a special thing, between lovers, when you first connect. It is unforgettable. Ebony and I were sitting in her car, a maroon Ford Taurus hand-me-down from her Mom’s boyfriend. We were parked outside my old apartment in Washington Heights, on Riverside Drive at the bottom of West 157th. It was that time when everything is awkward and you’ve been out and now you’re getting ready to say goodnight and you’re both so attracted to each other that you don’t even know what to do with yourselves. I was fidgeting, nervous, sitting in the passenger seat trying to look cool, but Ebony was totally focused. She was a big girl – tall – and had what I later referred to as “an enormous wingspan.” She reached over and brushed the hair away from my face, then moved her hand behind my head – her hand covered the back of my head – and she pulled me towards her. As we got closer she whispered, “I want to taste the whiskey on your breath.” And then she kissed me.

I suppose that is part of why I have been boozing so hard. I want to have whiskey-breath and remember that day. Of all of our days, that was the most special, because it’s the day that I fell in love. I should have married her the day I met her. Shame on me.

We had so many awesome, crazy experiences and I was privileged to be with her. She was freaking gorgeous – beautiful face, dynamite eyes, amazing smile, tall, legs for days, a huge ass and she loved metal – really extreme stuff, too – but she loved rock and New Wave and “Kick” by INXS was one of her favorite albums. I never made a lot of money but one thing that I was able to do was take her to shows. And we both loved music and going to shows was our thing. Two times, I was able to get Ebony a photo pass to see Iron Maiden at Madison Square Garden. When you get a photo pass to shoot a show, you get to stand right in front of the stage – even closer than front row – and she shot Maiden -- twice. There are so many of those kinda stories thanks to the amazing people that I have had the pleasure to know and work with. One day I will share the story about the time we hung out with Ian Astbury at SxSW on St. Patrick’s Day in 2012. Astbury actually said to me, “Wow, she is gorgeous.” I will never forget that.

Ebony was so totally amazing all I can do is think of her and then try to distract myself any way possible so I don’t dwell on it and want to kill myself. I just loved her and wanted to spend all my time with her. Even if we were just sitting on the couch, each of us at one end looking at our phones. I just wanted to be around her.

There is a low-rent drug dealer in our building. He comes to visit his grandmother every other week and stays for a weekend. He saw Ebony and I together and one day I was outside and he chatted me up.

“You like that black shit, huh?”

I said something like, “I don’t know man. She’s hot. I just love her.”

And he was like, “Okay, okay. Cool. Cool. I feel you.”

He would always say hello and I remember once he helped Ebony carry in her bags when she was back from a flight.

That was it. No big deal. Later on, I was at the deli and he was buying beer and his card wasn’t working – and you would think this guy had cash, but whatever -- so I just said, “I’ll take care of it.” It was a six-pack. Like, so what? What’s a six of Bud? You’d think I’d pulled a thorn out of his paw.

From then on, he would always come up and fist-bump me and used the N-word to say hello – I don’t use the N-word -- and wanted to give me drugs. Marijuana, mostly, but he would offer me other stuff if I wanted it. I never did. But it was nice to know I could if I wanted to. He saw me with Ebony when she was in a wheelchair and a couple of times in the ambulance and knew that her mother was staying with us. He was always respectful and kind.

I ran into him the other day and he was with a couple of his pals – I don’t want to say “thugs” but, um, thugs– and he grabbed me and hugged me. He introduced me to his pals and told them a 30-second version of what Ebony and I had and went through and I started crying. That makes people uncomfortable and they were clearly uncomfortable but each one of them started sharing a story about personal loss – to cancer.

After, he asked me, “How you getting’ on? You doing okay?”

I’m not. But I said something like, “Hanging in there.” Then I came upstairs and watched “Sportscenter” and passed out.

Cancer touches everyone and no matter what the situation, everyone grieves in his or her own way. It’s something inescapable. Right now I cannot escape and that’s all I want to do.

I go to the window in the bedroom and throw it open to smoke. I am afraid I might fall out but I brace myself and stare up at the sky while I inhale American Spirit tobacco. It is vast and beautiful and lonely. And I think to myself…

“Out of my mind’s eye, out of my memory… black world, out of my mind.”

That’s where I’m at. Black Planet, black world…

(Official) Letter of Resignation

On Friday, April 6, I submitted my official letter of resignation to ABC. I loved working there, but I have a lot of work ahead of me and need more time to grieve than would be allowed for a leave of absence.  It was difficult to write but needed to be done for my sake, and theirs. Below is a copy of that letter.

I have spent the better part of the day trying to craft this letter. I am bereft of the proper language to express my gratitude and haplessly keep returning to an online thesaurus, which has proved to be of no help.

It was with great pride that I took the position at ABC. The hours were odd, but as David Muir would leave, I would enter and after some time, learned about “the Diane Sawyer break room” and would start my nights, as I liked to put, “drinking David Muir’s coffee.”

Two years is not a very long time but it was a sensational time as, after years of freelancing for Esquire, The Hollywood Reporter, Rolling Stone, et al., I finally had a desk job my mother could brag about.

In that time, Ebony and I were living with her cancer diagnosis. She had an anaplastic astrocytoma, a brain tumor that has no cure and even after surgery to resect the mass, it was guaranteed to recur. An astrocytoma is a mass that has splinters; you resect the mass and the splinters go off and become their own tumor. It’s like a goddamn alien weed.

Ebony had brain surgery and aggressive radiation and chemotherapy in 2015 and in 2016, they – “they,” the doctors – said there was “no recurrence.” With this cancer, they don’t say, “you’re in remission,” because they know the tumor will come back, so they say “there’s no recurrence.” Until there is.

And like Ernest Hemingway wrote in “The Sun Also Rises,” when the guy talks about how he lost his money, we were blithely living with her cancer and she went from being fine to not being fine, “gradually, then suddenly.”

The last six and a half months were beautiful and terrible. I would go to work, take the train home – the MTA is the worst, by the way – and I would get home between 3 and 5 depending (we live out in Jamaica)  and then I would get up at 8:30 and make coffee. Ebony’s mother came to live with us in our one-bedroom apartment, so she and I would sit and have coffee and then we would get Ebony up (she was usually up to the smell of the coffee) and clean her, change her, bathe her and feed her breakfast. I swore that I would never put her in a fucking facility and I worked hard to give her a life and not an existence. But I had to work and after breakfast her mother would take over and I would go back to bed for three or four hours. Then I would get up and deal with all the shit: bills, Medicaid application, her insurance, Visiting Nurse Services (who are terrible) and pay bills and order a bunch of stuff from Amazon (diapers, Shea Butter wipes, mattress liners, etc.) and then around 4 I’d start dinner and then after we fed her, would change her and put her to bed.

Every other day I played her favorite music and whenever we could, would take her out in her wheelchair to the park over by Archbishop Malloy. On her birthday, I moved Heaven and Earth and took her to Nobu and fed her sushi and sashimi. I ordered a ridiculously expensive glass of red wine and let her sip some. She loved red wine and the movie “Sideways” and I was not going to let her miss out.

My entire existence was for her and like the first thirty minutes of “Saving Private Ryan.”

When she passed, I was holding her hand. I could not bear the sound of the monitors and all the beeping and the noises in the hospital, so I put on “Legend” by Bob Marley & The Wailers, and put my phone on her shoulder. She was still warm when people were coming in the room. I wouldn’t leave her. Finally, they told us we had to leave and I wouldn’t go until Winnie, this nurse from the Grenadines, came in and sat with her because I didn’t want my last memory of Ebony to be leaving her in a room alone. She looked so peaceful, like she was sleeping.

To say that I have been grief-stricken and inconsolable is an abuse of vocabulary. Ebony was my rock. She was my salvation and she was a total badass and she was hotter than Hell. She was glorious and while it comforts her family to say “she is with God now,” I can assure you that Ebony is, in fact, drinking with Motorhead.

It has been a little over two weeks since she went to see Motorhead and I have singlehandedly bumped the second quarter earnings of whoever manufactures Kleenex. I still have to go through all of Ebony’s things, return medical equipment, donate all the “stuff” and then leave the apartment. Right now I have a lot on my plate. To add to my American melodrama, my mother – I am her only living relative – blacked out one night at the end of February and hit her head on the vanity in the bathroom. She has been recovering from a concussion and needs my help.

Oh, and by the way: I turned 50 on March 30. Me, and my arch nemesis, Celine Dion (we share the same birthday/month/year) are both candidates for AARP.

I am overwhelmed.

There is nothing I would prefer better than to set the clock back and return to bitching about Arie Luyendyk Jr., but I know that I cannot. I want to drink David Muir’s coffee and I want to find Kickers and I want to listen to Nick Legasse yell about sports…. But I cannot. I want Ebony back. I want to hold her again, I want to text her and tell her stories… but I cannot.

As such, I find that I cannot return. I am going to move home, take care of my mother and keen like an Irish widow. (It’s in my blood, I kinda have to.)

I will truly miss working for ABC because it is and will always be a highlight of my life. The courtesy and kindness that you have shown me during my struggle, you showed to Ebony as well and I will never forget that. If I get my shit together and you want me to come back, I’ll come back. If you ever need someone murdered, I’ll do that, too. Of course, I’ll have to invoice you, but whatever you need: I’m in.

I don’t know how to write a letter of resignation and I hope that this is sufficient. I really don’t know what else to say or write, but you made my life better and I hope someday I can return the favor.

In the meantime, I am going to be going to some dark places, I think, before I find the light. I guess you can find me on Facebook or Twitter and I hope that you do.

I just want to say thank you. I loved the job but more, I was supremely grateful to be a part of something so special, made all the more so by the special people that you are.

Thank you.

With the highest regards,

Mark Andrew “Mick Stingley” Mullaney

Bring on the Night

It has been a week since Ebony passed. Numerous phone calls, emails and texts messages have come through and I ignored most of them. I didn’t want to see people but I didn’t want to be alone. Not much has changed.

It has been an inauspicious week of self-destruction and self-flagellation but mostly just crying. Ebony’s Mother’s husband came up to get her and I left on Wednesday so they could have some time. I think they left on Friday. I stayed away because I didn’t want to return to an empty apartment.

On Sunday I came back and wasn’t here five minutes before I started to fall apart. Ebony and I were together for 10 years, lived together for six and I spent the last six months taking care of her. To come back and not have her here… it was all so overwhelming. Everything reminds me of her and everything makes me ache.

Mediplus, the medical products rental company, came and picked up the bed yesterday and today I am waiting for the cremation services company to return Ebony’s ashes to me. I am present but not at all ready.

I have been playing music but find it difficult to choose anything that doesn’t make me cry. Today it’s a lot of reggae and dub: Prince Far I, Black Uhuru, Steel Pulse, Shaggy; Bob Marley hurts the most.

Last Monday night, after I had been at the hospital for 3 days straight, Sundai, her Mother, decided to stay with Ebony. I needed to go home. Shortly after 2 in the morning, Sunday called and I knew. She was crying and handed the phone to the RN, Kayla. She told me that Ebony’s oxygen was dropping and I should get there.

I got dressed in a flash and punched up a Lyft. Downstairs in 3 minutes, I was outside and climbing into a white four-door SUV. I told the guy, Ralph, I had to be there. He must have broken every law on the books to get me there. The ride receipt says he picked me up at 2:37 a.m. and dropped me at Weill Cornell at 3:04 a.m. 

Ebony’s breathing has slowed but she was asleep when I arrived. Sundai let me take the chair next to the bed and I held her hand and told her I was there. I told her I loved her and kissed her and kept telling her I loved her and that she was not alone.

About ten or fifteen minutes later I could no longer stand the incessant beeping and outside noise of the Neurology wing. I wanted to play music for Ebony. With her Mother there, I couldn’t very well put on Judas Priest or Motorhead, so I put on “Legend,” by Bob Marley and the Wailers. A greatest hits collection, it consists of many, many beautiful love songs and is, without a doubt, a truly magnificent album and one she really enjoyed. So I pulled it up on my phone and set the phone on the bed near her shoulder. And then I just sat there and held her hand.

I was still holding her hand when she passed. Her mother noticed the monitor had stopped. Ebony looked so peaceful. Eyes closed and head turned to the side. Her mouth was open ever so slightly. That’s how she used to sleep. Like she didn’t have a care in the world.

The nurse came in and checked her vitals and then, I think for the next three hours, people just kept fucking coming in the room. Nurses wanting to hug us, the Hospice RN who looks like Christine Baranski and who is one of those… I don’t know. She put both of her hands on my cheeks and kissed my forehead. You know, that person who tells you about the universe and how Ebony’s soul is traveling? That lady. I just wanted to sit there with Ebony. Her hand was still warm and these fucking people kept coming in. I know they all mean well but I’m crying and I can’t breathe and I just wanted to hold Ebony’s hand and fucking social workers are coming in to talk about “arrangements” and some aide came to change the trash bin liner – there was no trash in, they had just changed it the night before and it’s not like it was being attacked by seagulls. Honestly.

Then one of the social workers said, oh, by the way, you have to leave. “You will have vacate the room at 11.” What? Like seriously, what the fucking fuck? Turns out it has something to do with how the human body, I don’t know, transitions. But also, they need the fucking room. Get out, bitches. We were all nice before, but now it’s fuck you, you have to leave.

Sundai had pulled it together but I was a crying mess of just snot and tears and I didn’t want to go. I didn’t want to leave her. Sundai said we have to go and I refused. I didn’t want to leave without someone staying with her. So Sundai got Winnie, this nurse from the Caribbean (all the nurses that weren’t named Kayla or Nicole were from the Caribbean it seemed) to come in. She could see I was a wreck and she spoke softly when she touched my hand and said, “You have to go, love.”

I don’t even remember the ride home and the last seven days were very F. Scott Bukowski. I started going through some of her things in the bedroom and I have keep coming out because I cannot stop crying. At some point I turned into Liam Neeson in “Love, Actually.” I am heartbroken and grief-stricken and I cannot talk about Ebony without falling apart. I loved her so much

So I’m here waiting for the crematory to return her ashes and I’ve been up all morning and sitting here all day and it’s driving me nuts but I kinda don’t want them to come: I just don’t want to face it. Her cousin said she would help me plan a Memorial and I think we’ll have to do that for the family and work and close friends but I also want to figure out something to do at Duff’s, for her friends and fellow metalheads. Because I know she’d want that. Duff’s is where we met – old Duff’s in Williamsburg on Kent and North 3^rd – so it makes total sense. Maybe something in Newport, too. 

It was Ebony’s wish to be cremated and have her ashes scattered across the water – along the Fjords of Norway. I am not fucking kidding. What a badass. She always talked about going to Norway and it was one of those things we were supposed to do but time, money and everything else got in our way. We should have gone and I regret it terribly. She loved all those Scando bands but she was especially intrigued by the country of Norway because of the landscape and the long periods of darkness. She was such a creature of the night. 

I will keep my promise somehow and Mister Bear and I will take her to Norway. 

Going to Brazil...

The Love of my life is off to see Motorhead.

We will have to catch up with her after the show.

Ebony “Evelyn” Caprice Duncan

Fiancée, friend and total badass

January 12, 1976 — March 20, 2018

The Darkest Hour is Upon Is

In the past few hours Ebony’s breathing has become labored as her lungs are filling with fluid. They are going to get the respiratory team to see her and try suction to alleviate the buildup.

Dr Navi, who only a couple of days ago said it would be a matter of weeks, just told me he doesn’t believe she will make it out of the hospital. Weeks have become days.

Ebony’s Mother apparently consented to the DNR/DNI but neglected to tell me. I’m not going to split hairs over it. They are going to give her a bunch of drugs to make sure she isn’t in pain and will keep her comfortable.

Dispatches from the Front

(Saturday evening, March 17)

Ebony has pneumonia.

I stayed over last night and just sat with Ebony, holding her hand. They had given her some pretty heavy painkillers so she slept straight through. Even when the sun was coming up and light was slowly illuminating the courtyard outside of her window — and even when shift change was starting — she was sleeping peacefully. We could have flown her to Helsinki, with stops in Oslo and Stockholm, and she would not have woken up until  we arrived and were greeted by glamorous, well-educated reindeer with slightly low self-esteem and a taste for rock n’roll.

I got to the hospital around 4:30, navigating my way through a sea of green and puke puddles — High Tide for the “Irish” on the UES — and grabbed a coffee from Au Bon Pain.

I ran into Ebony’s Mom in the hall and she told me news. Ebony has pneumonia and is being treated with some antibiotics I have never heard of and pretty heavy painkillers that are allowing her to sleep right through anything.

The day nurse — a nice guy named Taylor — gave her something to break up her congestion — Albuterol and Ipratropium bromide — and by the time I got here, Ebony’s breathing had improved substantially. Not enough to take her off the facemask, but when she wakes up I will tell her that she looks like a sexy pilot in a jet fighter plane.

Vitaly is here, giving her a ultrasound to examine her liver, kidneys, stomach/abdomen and lungs. The room is silent but for Ebony’s breathing as her Mother and I watch the images on the screen.

The silence is broken when he has finished and her her roommate — name unknown — gets a visitor. They are old-school New Yorkers and sound like they would have been burglary victims on Barney Miller.

He is a bit loud and he makes calls to her friends and to each one he says, “Guess who I’ve got sitting next to me?” like he’s about to announce the celebrities on “Dancing with the Stars.” Then she gets on the phone and gives her pain history for 10 minutes then complains about the hospital food. Ebony gets to sleep through this.

Her mother just told me that her aunts, having been out visiting other relatives would not be able to stay overnight tonight. I’m a little disappointed because I could use a proper night’s sleep but they’re leaving tomorrow and I don’t have to go to work for 15 weeks so I am loathe to complain. Plus, if Ebony wakes up, I’ll be here and if anyone neglects her, I will raise Holy Hell because all this hospital stuff in the last 3 1/2 years has made me that super-annoying Patient Advocate prick and I am sure my mother would be disappointed in me but when it comes to Ebony, I do not suffer fools gladly, or quietly.

Mostly everyone here is really good and I am so tremendously grateful for the care she is receiving and the good people who look after the patients as if they were family. There are some real doozies, though. Last night one of the Neuro team residents stopped by — she’s a Millennial who ends her definitive sentences with an inflection that makes them sound like questions. She came by to tell me what Dr Navi has already told us and when I brought up the incident about Ebony bleeding after Aziza had swabbed her nose (checking for MURSA, apparently), she began to argue and moved the focus away from her breathing and I felt like she was trying to distract me from the problem at hand. This was made worse by her rebuttals ending with inflections until I lost it and asked her if she knew what defenestration is.

Thankfully, the people on today — Taylor, Marique—  we’re great. I am waiting to see who comes on in the next half hour.

Ebony is still sleeping and is expected to sleep through the night. Her roommate is watching a marathon of “Family Feud” right now and I may have to ask for some painkillers for myself. One of the questions was, “One hundred people surveyed, top eight answers are on the board. Name a word that rhymes with Jump.”

It is amazing how I can be at one of the best health care facilities in North America yet feel like it is actively making me ill.

Once again, I reaffirm my position: all hospitals should have a bar.

Ass end of a Dog Day

I am sitting in Ebony’s room and listening to her breathe, which sounds a bit like snoring. I went out to get some dinner around 9 and came back at 9:45 and found her nose bleeding and gurgling because blood had seeped into her mouth. She had bled over the oxygen line in her nose. I ran to the nurse’s station to get her nurse, Aziza, who came back and quickly began to clean Ebony up. After wiping her nose and mouth, she used suction — similar instrument to a dentist — and drew out much of the blood and mucus from her mouth. She mentioned that she had swabbed Ebony’s nose for culture and thinks that triggered the bleed.

Ebony returned to breathing but with a slight gurgle , as if there was still liquid in her mouth. I asked the nurse about it and she started quizzing me about being there, saying that I would have to leave. When I explained that Patient Services had sorted this out on my behalf and assured me that I could stay overnight and there would be no further problems, she wanted the name of the person I talked to and had me then spell my name. She never cleaned the blood and went back to the desk.

Later, another nurse — charge nurse I think — came to inform me that I would likely have to leave but “Gilda” would be coming to speak to me.

As yet, Gilda has not arrived and I have since and told Aziza that Ebony’s breathing concerned me. I stopped out of the room so that she could help Ebony and perhaps suction the remaining fluid in her mouth, and hopefully clean up the blood.

I took video of Ebony in this condition for posterity, though I am reluctant to share it in order to protect her dignity. But I emailed it to myself and am holding on to it.

After all we have been through today, it’s only fitting that the day should end as badly as it began.

In the Hour of Chaos

This morning the doctors came to us with more devastating news: complications with Ebony’s liver and kidneys indicate that her body is beginning to shut down. The lead attending MD said that it is now a matter of weeks and we need to seriously consider Hospice. Presently, she may have an infection which could be in her lungs or sinuses but is causing labored breathing.

I am taking a Leave of Absence from ABC. Not sure if I will be able to draw any income but that they are giving me this time is greatly appreciated.

When/if she is able, we will be bringing her home and initiating Hospice, where she will be surrounded by love and as much metal as she can stand.

Meditations from the Rim of Hell

Ebony’s Mother is pissed at me and tomorrow Ebony’s two aunts and grandmother arrive from North Carolina.

Had the meeting with Ebony’s doctors this afternoon. Her Neuro-Oncologist, one of the surgeons, a Neuro Resident, the lead attending physician for The Neurology wing and the social worker who arranged the meeting.

The Lead Attending explained that Ebony has a pulmonary embolism, or blood clot, in her lung and needs to be put on blood thinners to treat it but was now at risk for a number of things including stroke and bleeding on the brain. That she is stabilized is good because it lessens the risk somewhat. Her wound is healing nicely and they would likely take her off oxygen soon and switch her blood thinner IV to something milder and if she responds well to it, could be home this weekend.

The horrible news was an extended remix of the news we got Wednesday, delivered again by her Neuro-Oncologist: she cannot return to her Cancer treatment while on blood thinners, which means the tumor will continue to progress, which in turn means that there will be more incidents like last week as it continues. At this point he is recommending we do not continue treatment and consider hospice.

He and the social worker asked me if I knew Ebony’s wishes. I said that I know she doesn’t want to be on machines. The doctor made a point to tell me that I didn’t have to decide anything today and advised me that I should think about it, take some time and let them know.

The doctors left and I sat across from Ebony’s mother, who had turned sideways in her chair. The social worker asked me if I have considered Hospice and if I understood what it offers.

Her Mom got up in a huff and started walking out. I asked to stay became this is about Ebony. She said, "You're gonna do what you want, anyway," and left.

What sucks is that she is mad at me and I haven't made any decisions in or against Ebony’s favor. Clearly I have been distracted. I have been asking questions of the doctors and trying to get as much info before I make a decision. Problem is: the doctors, the social workers tell me, "You don't have to decide right now." And then ask you repeatedly if you have come to a decision.

Sundai seems to think I have made a decision to murder her daughter. I don’t know how she could think that, I just love Ebony so much. She's just so special. I held her hand for most of the afternoon and when I would take it away for a second to wipe the sweat from my palms or shake off the pins and needles, she would hold her hand up and look at me -- you ever a video of a cat pawing its owner to pet it? It was like that and it was heartbreaking and awesome.

But no decisions have been made and there is no rush for me to do so, so I’m not doing anything right now. Right now, the plan is: there is no plan.

Sundai went home, I am staying overnight with Ebony. The cast and crew of the North Carolina production of "Guess Who's Coming To Dinner " — Ebony’s two aunts and grandmother — arrive tomorrow. So I have that going for me.

I’m sure it’ll be fine.

The Night Nurse is here to check Ebony’s vitals so I am going back down to Au Bon Pain to shore up their Forth Quarter profits as Inhabe been doing for the last ten days.

As I stare into the abyss I am starting to wonder if there is an Au Bon Pain in Hell and of so, is it possible that I am already there?

Sophie’s Choice

I left work early tonight. Ebony’s mother called and told me to I needed to speak with Susannah, a Physician’s Assistant. So I called, and after listening to her, made the decision to leave and go to the hospital.

Ebony has a blood clot on her lower right lung that is impairing her breathing. The clot was not there previously. The way they treat blood clots is to administer blood thinners. However, this is dangerous as Ebony is recovering from surgery. Moreover, blood thinners are dangerous given her condition as they could cause her tumor to bleed, bleeding in the brain or swelling of the brain. All of which could prove fatal. If she does not receive blood thinners, the clot will most likely continue to restrict her breathing and she could pass in a matter of days. Another possibility is that more clots could form and lead to a heart attack or stroke.

I had to make the decision. A Sophie’s Choice if there ever was one.

Healing, and her comfort, were my biggest concerns. I made the decision to take a chance and allowed blood thinners. I think we have to take the chance on getting rid of the clot I asked if they had some kind of pain medication they can administer and Susannah said she would most likely get an IV of something to combat any pain.

Susannah said she would contact the team and get back to us. It could take until morning.

I don’t know if I will be able to sit up all night: I am exhausted. But I will be right here by Ebony’s side.

Robert Frost poems

Ebony is out of surgery, back in her room and recovering nicely, thanks to Dilaudid. She is now fitted with a Gastric Tube and as soon as tomorrow will begin receiving nutrients through the valve. The nurse was just here demonstrating the valve with Ebony’s meds.

My heart was in my mouth the entire time because the surgical team showed up before they brought her up to the OR “to say Hi!” And what better time to meet the the sociopathic Anesthesiologist? He wanted to let me know all the bad things that can happen during surgery and what that might mean. Like a tracheotomy or need for a breathing tube. And what better time to tell me than right before you take her in, huh? Thanks, Doc. I’m coming to your house for Halloween, I bet you thought “The Verdict” was a depressing movie where the bad guys won.

I walked up to the OR ahead of Ebony and before they took her in, I asked for a moment with her. I held her hand and leaned in and started tearing up, telling her how much I love her and that I will be there when she gets out and I’ll play her the new Judas Priest album which came out today. Ebony released her hand from mine and put it on my cheek, which is kinda our thing since this all began. It only made me cry harder but let me know she’s still in there, she’ll still fighting.

When she got out, her mother and I went to recovery to see her. Ebony came through just fine but was maybe in a little pain so they have some Fentanyl. Her mother said she would meet us in the room and I played some of the new Priest album — “Firepower” — for her. She seemed to really enjoy it, but the painkillers kicked in and she was out after three songs.

So after a great deal of anxiety and stress, Ebony is stable and will be getting Astronaut meals in what will become our new normal.

We have managed to get through this but we are not out of the woods yet: we will eventually be at that point where two roads will diverge. But I have promises to keep, and miles to go before I sleep.

Hope, memories and distraction

The last two days have been the hardest days of my life. Looking back, I can recall the worst of times: getting mugged was pretty bad. Getting hit by a van wasn’t great, either; but Ebony’s Cancer diagnosis was the worst.

I have been comparatively fortunate otherwise. Lucky? Blessed? Privileged? Honored? All of those things at times. What’s a typical bad day for me? The escalator is out at ABC and I have to take the stairs to the mezzanine to get the elevator to the newsroom? “What the Fuck, man? This place sucks!”

(I am joking, of course, Ha,ha. Kidding! I have to be careful of what I say: I don’t want to piss of the wrong people or in seven days Kerry Washington will crawl out of my television and kill me.)

Ebony has surgery today. The doctors are implanting a valve called a Gastric Tube into her stomach. As she can no longer swallow properly, and a Nasogastric feeding tube, inserted through her nose, is only meant to be temporary — and causes her pain and discomfort. — the doctors say that this is the best way for her to ingest nutrients. The device can be removed should she regain her ability to swallow.

Last night one of the members of the surgical team stopped by to explain the procedure to me and have me sign the release form.

The process of placing a Gastric tube involves inserting a camera with a light at the tip through the mouth into the stomach. They use this device to press the stomach against the abdomen and make the incision where they will insert the valve and after doing so, sew her up.

The valve is secured internally and externally, essentially, by washers. During the healing process, collagen forms naturally, adhering the stomach against the interior of the abdomen.

Because Ebony has been on steroids for over six months, her procedure will be different. Steroids inhibit collagen from forming so they will need to attach Ebony’s stomach to the inside of her abdomen with stitches in order to prevent Septic Peritonitis, which would occur if the valve separates from the stomach and the contents leak into her body, causing infection and abdominal pain.

The recovery from surgery will take two to four weeks depending how quickly the surgical wound heals. Because she has been having her Cancer treated with infusions of Avastin, they have to watch her closely as one of the side-effects of Avastin is that it inhibits wounds from healing.

When she pulls through this, and I am confident that she will, what we must face is that she may not be able to swallow conventional food again. Ebony was hardly a “foodie,” but she loves great wine and chocolate; cheese, olives and cherry peppers stuffed with prosciutto and provolone. She loves sushi, seafood, particularly shellfish; pizza amd pasta and more than anything, potato chips. She also loves burgers from White Castle (“It’s a Queens thing,” she would tell me.), McDonald’s French fries and Popeye’s fried chicken (spicy), which she introduced me to. Over the ten years we have been together, I unknowingly turned her into a Chowdah Monstah, and watched her indulge in clam chowder everywhere we went in Newport and Eastern New England. She loves the chowder at The Black Pearl but was also quite fond of the chowder at Flo’s. Oh, and she loves chocolate. Did I mention?

Unfortunately, those days are over, at least for now.

Wednesday afternoon, when all this was laid out by her primary MD, we were also presented with the grim question of whether we wanted to sign a DNR/DNI. This is a form which stipulates that in the event of arrest, the doctors will not resuscitate and neither will they intubate or hook her up to a ventilator.

As her Health Care Proxy and Power of Attorney, her fiancé, lover and partner of 10 years, I went to honor Ebony’s wishes. I know what she wants, what she has expressed to me in thee past before this happened, but I am horribly conflicted. Ebony is the Love of my Life and I would trade places with her in a second. She doesn’t deserve what has befallen her and it is agonizing to watch. I have called out of work the past two nights because I am overwhelmed and a crying mess.

I know where this is going. At this point, we all do. How long it takes and how we get there is how we honor Ebony and celebrate her life.

For six months I have lived on hope, memories and distraction. Yesterday, they moved Ebony from a quad to a double and she got a window with a view of the front entrance of the hospital. I think it’s important, to keep looking out, looking forward.

I just hope I can face whatever lies ahead with courage, for Ebony.

By your side

Ebony needs to be fitted with a Gastric Peg, a small valve inserted into her stomach, which will be less invasive than a nasogastric tube. This way she will be able to receive nutrients through an IV line without much fuss. 

They removed the feeding tube earlier and placed her on another IV solution to keep her hydrated and get her what she needs — this time I think it’s magnesium. 

Later, around 9 p.m., a 30ish PA showed up to inform me that she was there to reinsert the nasogastric tube because the doctors don’t think they will be able to take her for surgery until Friday. I explained to the young lady that she needs to be extremely careful and before I finished my sentence highlighting WHY, she cut me off and said, “I do this all the time.”

Well, I thought, “That is the kind of mondaine arrogance that makes for an excellent doctor: she must be good. Soon, she’ll be dining in the cafeteria and leaving her tray on the table when she’s finished with her Thai salad, checking her phone as she sashays away.”

I clutched Ebony’s band tightly, holding it to my chest through the four attempts by Little Miss Can’t-Be-Wrong, glaring at her. Ebony winced as she slid the tube through her nostril and tried to feed it in, meeting with resistance again and again as Ebony’s sore passageway gave rise to gasps. 

Finally she stopped and said, “I think we’ll have to try again in a few hours and let her rest. I’ll let the team know.” 

And then she left without so much as a courtesy “goodnight.”

Later, sometime after 11, the attending nurse came to tell me that “visiting hours are over.”

This has happened twice before and I tweeted about it, writing, “@nyphospital This new visitation policy is awful. Since when do you keep family from being with loved ones who are cancer patients? Because I work odd hours shouldn’t be held against me or prevent me from sitting quietly with my fiancée. It wasn’t a problem before. @staceysager7”*

*(Stacey Sager is a Channel 7 reporter I tagged, who has beaten Cancer twice. )

The next day Patient Services got back to me around 8 a.m. and apologized. I pointed out that this had not been a problem before and the NYP website states plainly that it has “open visiting hours...with no set times.”

Later, when I was leaving the hospital to go to work, two reps met me to tell me it was a misunderstanding and there would be no problems going forward.

Now, here I was again. But I didn’t fly off the handle, I just calmly whispered and explained what happened and asked her to check with her supervisor to see if there might be a note from Patient Services.

Another woman returned to give the same speech and I repeated myself, calmly. She went away and did not return.

Later, the first girl returned and told me she needed to reposition Ebony and asked if could help her. We removed a pillow from underneath Her right side and placed it under her left side. Movement and repositioning helps prevent bed sores. But when we rolled her she made a face and she had tears rolling down her cheeks. I started choking up. “Isn’t there anything you can give her?”

Ebony has only been on painkillers during and after surgery. So first girl said she would call the doctor. When she returned, she brought something for Ebony and at  1:45, gave her 1mg of Morphine. So, “Yay!” first girl! 

That was two hours ago and Ebony is resting peacefully. Meanwhile, I have been here for 24 hours and awake for maybe 36? Hard to keep track. I need to sleep, but I am still here, by Ebony’s side. 

Respect The Bear!

I have a photograph of Ebony that I took early Monday morning while she was sleeping. She was holding Mister Bear and facing the left side of her hospital bed where I was sitting. She has the feeding tube installed and just behind her is an array of medical equipment. The way the camera in my phone captured her face, you cannot tell if she is sleeping or squinting at me. It is a jarring picture of you have not followed her progress, such that it is, but I took it because, to me, she looks peaceful and I have been in the habit of trying to accumulate pictures of her as I try to hold on to my sanity and our precious time together while Cancer ruthlessly tries to tighten its hold on her daily. 

I was at the hospital Monday from 3 a.m. until Noon, when her mother arrived. The overnight RNs would not let me stay longer than one minute with her in the room and when I asked why, I got a curt, “That’s the rules. You can come back in the morning.” 

I started to argue that I have done it before and, more importantly, the website plainly states that, “New York Presbyterian has open visiting hours.” I was received poorly and told to come back at 7. It wasn’t worth getting into a tizzy and disturbing other patients but it was galling.

After I visited with Sleeping Beauty for a minute — kisses on the cheek and a quiet “Hello, I love you!” — I went downstairs and got a coffee. Actually, it was a coffee and a chocolate croissant because I was mad and eating my feelings. 

As I sipped my coffee,I swiped through pictures on my phone and came across a picture of Dr Josue (Ho Sway) from NY Presbyterian Queens, holding up Mister Bear three and a half hours after rescuing him from a laundry bin the day a careless aide gathered Ebony’s bedding and tossed it in the laundry chute with poor Mister Bear inside. 

I was careful and have always been careful when in the hospital, to tell everyone who comes to look after Ebony that Mister Bear is part of the family. Here at Weill Cornell there’s so many people in and out that its almost impossible to connect with all of them, like King Canute trying to hold back the tides.

When I returned to her room later, Mister Bear was face down on a chair and not with her. I was pissed.

I thought maybe if I left a note above her bed, it might help but that might not get read. This is when I thought about the photograph I took. If I could make it into a poster, with instructions, people might take note of it, however silly, and be careful with Mister Bear. There really wasn’t time to ask any of my talented artist friends so, with a little pluck, I found a site that generates Memes, made one and then sent it to FedEx Kinko’s for a quick turnaround.

I picked up the poster at Kinko’s before I visited Ebony on my way in to work. The cashier/attendant asked me about it. He was curious, he said, because he thought Ebony might be a boxer and recovering from a match. “Doesn’t she look like a fighter?” he asked a colleague as he held it up for inspection. The guy asked me about her weight class and I got the biggest kick out of it because they were serious. But more than that, I saw that picture in a brand new light. It’s not jarring at all — it shows her for whom she truly is: a fighter.

Also, I looked it up: in Women’s Boxing, given her height and weight, Ebony would be a Super Middleweight or Light Heavyweight like Laila Ali. 

Or as I already knew: a total badass. 

When I stopped in before work I was only able to spend a few minutes. She was awake and immediately touched my cheek. This makes me so happy but is absolutely heartbreaking knowing what she is going through and 1., not being able to help her, and 2., having so little time as I have to work. There is simply never enough time, but I lingered longer than I should have because she kept touching my face and I just love her so much and those moments are so special and intimate for us, I cherish them. Now that she can no longer speak, I suspect that she does, too.

Getting a poster made may seem frivolous but is is what I can do to protect her. She loves that bear and when I am not here or her Mother is not here, Mister Bear is. If she wakes up, with a picc line (Peripherally inserted central catheter), a urinary catheter and a nasogastric feeding tube all running into her while she lies prone in a strange place listening to New Age, she will look down and see Mister Bear, feel him in her hand and know that as awful as things are, she is not alone. 

It’s after 6:00 a.m. and I have been here since 3 and seen a bunch of new RNs. “You must be Mark/her fiancé...” They have all seen the poster. “We’re taking good care of Ebony and Mister Bear!” They smile and smirk, but I don’t care: that bear is right where he should be against her chest and I could cry it makes me so happy. 

Ebony would not be happy to know that I am sharing a picture of her when she is so vulnerable and not looking her best but I want to celebrate her for the fighter that she is. In six months, Cancer has robbed her of her ability to speak, walk or care for herself without assistance but she is punching back hard and she is still here

Even in the state she’s in, she is stronger than I am.