Tuesday, October 17, 2017

Secret Oktober: FB posts I haven't posted

“You are now leaving the City of Dreams”

There’s a billboard on the way to the L.I.E. by some artist named Peter Tunney. I see it when I’m coming home in a cab after the 59th Street Bridge. It bothers me because I think it’s pretty insulting to anyone living outside of NYC. Maybe it’s sarcasm but I’m not feeling it tonight. 
Earlier today I was up and working on filling out Social Security forms for Ebony. Her insurance does not cover home care for more than a few hours a month, if that. I’m told that SS/Medicaid makes allowances for this but I have to fill it out as her significant other/caregiver. Not an easy task, as I have to come up with all manner of documents I have no idea how to locate. Tax returns for the last two years that Ebony is unable to recall. Possibly online, but she doesn’t know her passwords and I have to work to find alternative solutions.
One of the questions asked wrecked me. I wrote to her doctor, well his intern who is pretty good at emailing. I said that I was uncertain how to answer this question: 

Have you been diagnosed with any specific condition that is expected to end in death?
( )Yes
( )No

Ebony has been home since Wednesday afternoon. Her mother is here and we are learning how to take care of her, coping, making adjustments. The apartment is not well-equipped to handle a wheelchair, a walker and a commode but we are working it out. I want to maintain and protect Ebony’s dignity, but the tumor, since the immunotherapy began, has caused incontinence. She is blissfully unaware of it, and we’ve been given disposable adult diapers by the hospital, and a friend of her mother’s had boxes of them from a relative who no longer requires them. 
Our day begins by getting up, having coffee (her mother prefers tea) and letting Ebony wake up as naturally as possible. She sleeps like a cat so sometimes we’ll have to gently wake her and then I take her to the bathroom to get her cleaned up and changed. This takes a bit as her legs are weak and standing is difficult without help. I help her get up, get her to the wheelchair and into the bathroom. There was a time when that would have freaked me out, the thought of it, but I’m not bothered about it, not even slightly. She has given me the greatest 10 years of my life, is this really such a sacrifice or an ordeal? It isn’t. I know that sometimes she’s troubled by it, I can see it in her eyes. She doesn’t say it, but I know. I reassure her constantly that I love her and nothing can break that and I will take care of her. I tell her over and over again how much I love her and how beautiful she is. I clean her up and I’m happy to do it because I want her in my life and if this is how I get to have her, so be it. I make sure to moisturize with her special lotion and fasten the tabs of the diaper and pull on some new threads for the day and get her back to her wheelchair.
If her mother hasn’t started in the kitchen, I make breakfast. I have bought a ton of food and in the six years we’ve been in the apartment, the refrigerator has never been so full. I’m fussy about certain things and friends of mine who know me in Newport will recognize how Dan Puerini has corrupted me for the better. Everything has its place; certain items, Pelligrino, Coca Cola, have to be rotated, most recent purchases in the back. Nothing gets dropped on the floor. I’m careful as I move food and particular about storing leftovers. Well, we all are, but Dan Puerini in my head makes me try harder. The only thing I don’t do is date the leftover because they never last more than a day. 
Her mother isn’t much of a cook. I don’t fault her for this. I think it’s just that I’m a little over-the-top and want Ebony to have the best I can create for her. So far I’ve made a pretty outstanding, though basic, meatloaf. Half ground turkey, half ground beef and vertically topped with thick center cut bacon in a 13 x 9 casserole dish. Thursday I made pesto. Friday night I made chicken piccata, sub artichokes and spinach for capers. Made rotini and then put it in a bowl and spooned in pesto. Boom, a nice side. Spinach is big here and either it’s in a salad or sautéed with a little oil, garlic and lemon. Today, before I left for work, it was meatloaf (leftovers, but heated up nicely) with gravy and I made mashed potatoes. I’m very particular about them. I made 10 pounds, peeled and chopped each little potato, boiled and then drained and mixed with 4 pounds of butter, half Land o Lakes and half Kerry Irish. No milk. (Why milk when you have butter?) A little salt and pepper. I bought a loaf of panella from the bakery and warmed about a third, then sautéed spinach and tomatoes as a side. Sort of a traditional New England winter meal with a slight Italian accent. Up yours, Epicurious. 
Of course there’s no wine. I’m not sure if Ebony can have it and with her mother here, am not going to bring any into the apartment. So it’s Pelligrino but I know Ebony would like some as much as I would. 
That’s a thing, I think, for her mother. And that’s part of our disconnect. There’s a disconnect. We don’t know each other and have only spent time together when she’s visited because Ebony was in the hospital. Her mother is sweet, but very, very quiet and very timid and nothing AT ALL like Ebony. She kind of like a Ficus. Also, she’s pretty into her church. Her whole family is down in Charlotte and they’re what I would call “churchy.” Ebony never was and that’s part of her disconnect with her family. I’m not… I don’t know what I can really say. I was raised Catholic, went to Catholic school, attended my grandmother’s Episcopal church and sang in the choir there for years. I don’t know what I believe but these Southern guys in their Botany 500 suits preaching… I don’t know about that either. I was raised a certain way so, to me, if the individual discussing religion is not burdened by pretentiously austere and needlessly heavy vestments, I can’t even fake getting behind it. I feel the same way about rockstars. I want my rockstars to look like they give a damn about what they’re doing. A little style, please. Bowie. Bob Marley. David Lee Roth. Johnny Rotten. Lemmy. Prince. Michael Jackson. Adam Ant. Michael Hutchence. Al Jourgensen. Zodiac Mindwarp. Danzig. Dave Gahan. Zakk Wylde. Ian Astbury. Come to think of it, every artistic interpretation of Jesus that I’ve ever encountered, the guy has long hair. White, black, Latin, whatever: he had long hair. Never seen one guy in the Catholic church – priests, brothers, monks -- with long hair. Not one. But I digress… 
Her mother follows something I think called Kingdom Ministries. I’m reluctant to tell her the only Ministry I care about – and I can speak for Ebony here, too -- is Uncle Al. Wouldn’t go over so well, but I’m not out to offend or make enemies or alienate her from Ebony in her time of need. But today, something came up. 
While we were eating, the doorbell rang. The super or one of his guys dropped off a package for Ebony that came in the mail. I brought it to Ebony who looked at it strangely, as she does a lot of things now. She opened the package and inside was a coloring book, a pack of rather nice-looking colored pencils with a sharpener, and a book, “Praying Through Cancer.” The coloring book was something like, “Drawing with God” and featured pivotal scenes from the Bible to color in. Noah’s Ark, stuff like that. I only glanced at it. Ebony made a face and just handed it to her mother and went back to her meatloaf. Telling. 
I think her aunt sent it. There was no card, but I can guess. She texts me every day with scripture quotes or video links to gospel stuff. Black gospel stuff, not like the Mormon Tabernacle. Like, real Jesus-y stuff. I don’t know what to say and just type back, “Thank you.” But it’s not me, and it’s not Ebony. I don’t know how to tell any of them, so I kinda just let is slide, but it drives me a little nuts. The first concert I ever saw with Ebony was an extreme metal band from Greece called Rotting Christ, one of her favorites. Pretty cool band, too, but… you know. 
They’re doing it for themselves, I know. We’re all in pain right now and that’s their self-medication. But it’s a disconnect for Ebony and I and even in her current state, it’s not her thing. And I don’t know what to say. It’s such a touchy subject but I feel like they’re subjecting Ebony to this when she’s vulnerable and I don’t think that’s right. If you love someone, you love someone for who they are, not who you want them to be. Seem un-Christian-y when you think about it. When I think about it. I do know that if Jesus did show up right now, I’d tell him, “Hey, dude, fix Ebony and I’ll go to church every Sunday.” I’d also probably point to the case of Pelligrino on the floor outside the kitchen threshold and say, “Amarone, please.” (I’m probably going to Hell for that.)
The doctor’s resident finally wrote me back about the question I emailed and said, “Unfortunately the answer is yes. Please feel free to reach out with other questions or concerns.”
Other questions and concerns? I have only ONE concern. 
I couldn’t stop kissing Ebony before I left. Sometimes she’s just out of it and her eyes tell me everything but she really likes to kiss and always smiles when we do. She will kiss me back and then bow her forehead to mine and then I kiss her again and she kisses back and smiles. So I kiss her a lot. It makes me tear up and today I was a fucking mess and kept saying that I need to take my Mucinex but what I really need is a Vicodin or Zoloft or whatever the preferred contemporary mood elevator is. What I really, really need – what I want -- is more time. 
I hate leaving her and now I am so addled about doing it I start falling apart walking down the street. I keep trying to stay positive. This weekend we had fun. Her mother went out for a couple of hours: she’s found the Target in Forest Hills, so yay. While Ebony sat in her chair, I played her the latest videos on Blabbermouth: Moonspell, Beast In Black, the new Helloween. I feel like I’ve really come around to European Power Metal, something I was never crazy about. She likes a lot of it. I dig the Helloween tune, silly as it is. “Pumpkins United.” I’m not even going to explain, but I dig those crazy Germans and Ebony said, “It’s actually really good.” So there, critics. I also played her the new Powerman 5000, whom I love but she… not so much. She dug it, though. The song, “Cult Leader,” is catchy as fuck and I highly recommend to anyone needing a “jump up and down song.” Powerman 5000 is the band fronted by Spider One, younger brother of Rob Zombie, who looks like nu-metal Billy Idol. His lyrics are far superior to Rob’s. I love Rob, but after a while… I don’t know. I mean, I get it: you read Psychotronic and Fangoria and love all that shit. Spider, though: different animal. Some of his songs are such scathing indictments of American culture it’s a wonder his fans don’t throw rocks when he plays. “Miss America,” “A is for Apathy,” “This Is How To Be Human”…. Maybe I give him too much credit, but I dig it and I need to dig stuff right now because I need the distraction. More importantly, Ebony was paying attention and reacting and I want to do more of this… let’s call it “music therapy.” Thing is: hard to even play Judas Priest when Mama Church is hanging around. 
I was at work tonight recapping “Dancing with the Stars” and feeling like shit. I’m just trying to keep it together. It’s so weird, what I do. Ebony used to make fun of it, in a good way. “The most important show in television!” That was her line, not mine, but I still say it with glee. That show is like watching a glitter-filled Party City tractor-trailer careen into a Long Island wedding. I can’t stand it, and yet it’s one of ABC’s biggest properties and I have to take it seriously as it’s part of my job as an entertainment writer. They are now in their 25th season, if that makes sense. Washed-up celebs gather to hang on to some fame and keep their names out there and a second unit team chronicles their backstory so come airtime, all of their heartbreaking tales are splayed across the screen on cue for everyone to weep to. I hate it, I fucking hate it. And then I get sucked into it and I hate myself. It’s not even about the celebs, though: it’s about the judges. They reflect the yin/yang of the audience. It’s also a popularity contest in the end, because interactive online voting decides the fates of yesterday’s heroes. But the judges… it’s all about them. They bring the gravitas, if that’s not too grand to write. There’s Len Goodman, who sounds like Dudley Moore as Arthur when he's smashed and is a harsh critic; there’s Carrie Ann Inaba, the All-American Fly Girl from In Living Color, who is always breathlessly modifying her superlatives with ten more superlatives, and of course, the rockstar, Bruno Tonioli -- whom I know as a background dancer in Elton John's "I'm Still Standing" video and the choreographer for Bananarama’s “Venus” and nothing else -- is either a manic stereotype of an Italian sexual predator or used car salesman. And I'm not sure if they have used cars in Italy. But he’s incredibly entertaining and together they’re… well, in the end, I have to admit, more entertaining than not and really good at what they do. 
But I really couldn’t concentrate on any of it tonight. I’d get distracted for a bit and then think of Ebony. I used to text her but now she doesn’t look at her phone and I’m not sure she’s 100% about how to use it. It depends on how tired she is, but I miss texting her so much it aches.
Today I’m making chicken soup. Good for the soul, I hear. Plus, I can make a ton and freeze it for later. Goes well with the panella, too. I’ll try to date the stuff I freeze, because: Dan Puerini would. Will make a nice meal, not too heavy. Ebony likes my chicken soup. Could use some wine, though, but Pelligrino will do. For now. Have to keep my head clear anyway, there’s so much to do. 
Ebony has an MRI on Wednesday and then a week later, a consultation with her doctor. I’m hoping for good news, but expecting the worst and I can’t shake it. 
It hurts to think about. I don’t care, though. I’d suffer anything to spend more time with Ebony and to make her life better as much as I can for as long as I can.
That’s what love is all about, isn’t it? Am I crazy? Oui. Je suis fou. 
I have to go to bed now, I think. I need to sleep a little and dream before the jackhammers start up again (there is construction going on around my building and it started Monday morning at 7:30). In my dreams, right here in Queens, everything is going to be all right. 
Fuck Peter Tunney and his stupid sign.

Hello, darkness, my old friend… 
I haven’t felt much like socializing. It’s not that I don’t want to see my friends, it’s just difficult for me to see my friends and have to tell them all the horrible details and see that look that comes over their faces when they realize how desperate I must seem and how hopeless things are. And how many times can I say, “We’re trying to stay optimistic and keep a good thought” before I stop believing it? 
I’m on the train right now, passing through southeastern Connecticut on my way back to The City. I brought the car up after work Friday morning. Ebony won’t be driving anytime soon and I don’t want to keep it and have to move it and spend hours looking for a place to park. More importantly, Mom’s going to talk to the dealer about selling it so there will be a little financial relief, if they give her a decent price for it. I love that car, but we don’t need it and we can always get another car, right? 
Anyway, I got into Newport around 6 a.m., went to bed and got up around Noon. The other woman in my life, my Mother, has her own cognitive impairment that I have been dealing with for as long as I’ve been alive. So whatever I have to face with Ebony, I’m pretty well prepared. 
“I was talking to Sharon the other day and Aisling had her mastectomy. She was at – not the hospital Ebony is at, but it’s on the East Side. Isn’t Ebony’s hospital on the East Side? I just can’t remember the name. What are some hospitals on the East Side? It’s not Memorial Sloan Kettering, I know that. Is there a boutique hospital? Sharon said they have prime rib for dinner for the patients and it just sounds divine. But Aisling sounds like she’s doing fine, which made me so happy to hear. It’s just so sad because it seems like everyone has cancer these days. I just don’t remember a time when so many people had cancer. Maybe it’s because we’re able to diagnose it sooner. You know Will, from next door? His best friend just found out he has cancer… what’s the matter? Why are you looking at me like that?
“Mom… I asked you if you want me to take you grocery shopping.”
Needless to say, this meant a trip to Shaw’s, which my mother favors because it’s in the Aquidneck Shopping Center, where the Sears and Child World used to be, back when The Christmas Tree Shoppe was Stop & Shop and CVS was Liggett’s and I would get my hair cut at by Mr. DeCotis down in the corner where they used to put the reindeer at Christmas. (Every trip home with Mom is a nostalgia trip.) 
Shaw’s is pretty “meh” as a grocery store. They’re no Almacs and they’ll never be Clement’s. Like, good luck finding fresh rosemary. Also, they have 20 registers and check out lanes and never more than 4 or 5 open. Plus one of the guys who works there is a total ding-dong who scans one item at a time like he has developmental issues, but I think he’s just doing this out of spite and three out of four times, I end up in his lane. No matter what, going to Shaw’s is a disappointing time-suck but Mom likes it because it’s familiar and she can take “the back way” down High Street and avoid West Main Road and talk about things that used to be there but are now other things she’s not interested in. 
Earlier, while I was sleeping, Mom made a trip to Wal-Mart to buy some bulk items and the physical exertion took a toll on her. It was starting to show by the afternoon and became apparent at Shaw’s. As far as I was concerned, we were on a Walking Dead run for supplies: in, out, avoid the Walkers and we’re gone. I’m only here for 24 hours. But Mom was punchy and distracted by the pretty things. Trying to get her to focus when she’s like this is like training a Doberman. “Mom! MOM!” She’s leaning on the cart for support and huffing like she’s about to have an asthma attack and people around are looking at her with concern. Of course, they’re looking at me because long hair and tattoos in my hometown equals irresponsible derelict who should be shunned. It’s strange to me that a town which was settled and founded as a haven from religious persecution is in fact, in the 21st Century, so Puritanical. (If there is ever a movie made about my life, this is the part where to cue up XTC’s “Respectable Street.”) I try to ignore it because if you have to stare, your life can’t be that interesting anyway. 
So Mom is careening all over the aisles with her shopping cart like a cat chasing a laser beam. “What about pickles? Do you want some pickles? You love pickles. I’ll get some pickles.” 
“Not what we came for, Mom: focus.”
This goes on. Mom is dilly-dallying and finally I break. “Maybe I’ll make some pesto. I’ll make a little rotini with pesto and we can have that as a little side dish for dinner.” So off I go looking for pine nuts and walnuts (because pine nuts are fucking expensive and walnuts are a practical less-expensive, though still pricey, substitute). 
I can’t find the pine nuts. I found the walnuts. But I had to ask about the pine nuts and this is my every experience at Shaw’s:
“Can you tell me where to find pine nuts?”
“Pine nuts?”
“Pignoli… they’re the little… they come in a little bag…”
“Oh, they’re in the chips aisle.”
No they’re not. It’s only Columbus Day Weekend: why would they have anything Italian? But, hey: we got mad pumpkins, yo! 
And... scene. 
I don’t even know why I bother to share this with Mom but it’s all a moot point anyway when she informs me that the blender broke and she had to throw it out. 
Finally, when we have gotten too much and would have been already been killed by zombies at this point, it’s time to check out. There’s four lanes open on a Friday afternoon before a three day weekend and a lot pissed-off people are queued up as we approach… 
And then I see him. HIM. THAT GUY. He’s put on weight and his hair is longer -- now he’s rocking a full skullett – but he’s still working there, moving one item at a time across the scanner like he’s playing Operation. Slowly… slowly… 
There’s one cart in his lane. One cart. I’m trying to make up my mind: do I do this and make myself crazy, or get in one of the other lanes and just suck it up? 
He looks up and he sees me. AND HE SMILES AT ME, grinning like Jack Nicholson. He will check us out, he nods, one item at a time. He will chat with my mother and ask over-familiar questions and my mother will think he’s so sweet and keep talking and when he’s checked every last item there will be a problem that will require a manager and that will take even more time and he’ll keep talking and bagging things in slow motion and we will never ever get out of there and I will be forever trapped in this nightmare. 
I look back at him, and he mouths, “Welcome to Hell.” 
I get in the other lane and of course there’s a problem. The woman in front of us is hovering over the credit card reader and just randomly pushing buttons and the guy keeps having to override and telling her “you have to do it again.” It’s a credit card reader and she’s laboring over it like she’s trying to hack Langley and I WILL NEVER GET OUT OF THIS STORE.
Mom looks at Skullett, who’s glaring at us, and says, “We should have gotten into that lane.”
This is, of course, all a distraction from panic. 
We got all the bad news this week. Ebony was moved to rehab last week and has been getting physical, behaviorial and occupational therapy every day except Sunday. She’s been off her feet for a month now and she’s having difficulty walking. It’s actually hard for her to get up. Mentally… when I saw her Thursday, she couldn’t remember my name. She kissed me and squeezed my hand and I think it hurt her more than it did me, but this is part of the problem. She knows what she wants to say but has difficulty articulating it. She is going to need 24-hour care, which means I have to become a physical therapist, a speech therapist and Nurse’s Assistant in a matter of days. I already started training Thursday afternoon. They showed me how to help Ebony in and out of the tub, oh and PS – I have to buy a wheelchair, walker and tub chair/bench thing. I return for more in-home-care-training on Monday and Tuesday. 
They are going to discharge her on Wednesday. And then we have to find a Jamaican nurse (because: New York) to come in when I go to work. Her Mother is still here and frankly, I have no idea when she plans to leave, but if her medical doesn’t cover it and we have to go through an agency, they charge on average 25 buck an hour and she’ll need someone in for the roughly 8 hours I’m out and at work. Probably more if the MTA doesn’t get its shit together. But add it all up and that’s $4000. a month for home care. And people want to get rid of Obamacare? I want full socialized medicine, but good luck, Buddy. I want to go to Finland or Sweden where this would not even be an issue and I could focus on spending all my free time with Ebony and making her happy instead of stressing the fuck out. Which is pretty much where I’m at. 
I need a raise. Or a new job. Or a second job. Maybe three jobs. Or I have to win the Lottery. I need to write a bestseller, but I’m afraid no one would want to publish anything of mine and what do I have to say, anyway? Life sucks? Yeah, that’ll be a top pick on Kindle. And it’s like I hate my job, either. It just doesn’t pay me enough. I can’t write “The Devil Watches ABC” because who wants to read about someone having a cool job and nice boss who’s really understanding when it comes to my home situation? 
The though occurred to me that I would be happy as a contract killer. I don’t really know how to get into that, though. I wouldn’t want to just kill indiscriminately for money. Already I’m wrestling with morality issues on this. Like, if your spouse cheated on you, I wouldn’t take that contract because there are lawyers who can do more damage; but if someone cut you off in traffic, without using their blinker? Yeah, I’d kill that person. For a million dollars. This way, I could make money, help people and alleviate congestion on our highways and I could feel good about it and my conscience would be clean.
But in reality, I have no idea what to do next and am kinda freaking out. I just love Ebony like crazy and want her to be well: I’ll do whatever it takes to take care of her. But the thing that really scares me is that there won’t be a “return” to anything; that she’s not going to be “back to normal,” at least not anytime soon. Now it’s about going forward with this new… situation. 
I’m going to be fucking 50 next year. I guess this is my mid-life crisis? I thought I was supposed to get a Porsche or a vintage muscle car. Maybe I’ll just put drag pipes on Ebony’s wheelchair and paint flames on the side. With a bumper sticker that reads, “MY OTHER CAR IS YOUR MOM!”
They just announced New York City. Back to the hospital and back to reality..

Mick Stingley added 3 new photos.
Some encouraging news. She's not out of the woods yet -- far from it -- but Ebony has been moved into the rehab facility for physical and cognitive therapy at Weill Cornell/New York Presbyterian, on the 17th floor, no less. Apparently it has been recognized for its achievement in the "goth percentile." That should be interesting as we head into October. 
Movin' on up like George and Weezy...