Connecticut’s “Welcome” sign on 95 should just read, “FUCK YOU!”

Red lights sparkled like rubies in the asphalt as the cars lined up into infinity. 

We slithered along the Northeast corridor of I-95 like a stertorous snake. At 4 MPH, this is how Connecticut makes a sane man lose his mind. There is no rhyme or reason, there is only traffic. You sit in traffic long enough and you become friends with the pain of true torture. Terrorists know nothing about inflicting pain compared to the State of Connecticut. Hours go by and you move up then stop, wait, move up, stop, wait, wait, wait some more, then move up and repeat. There is no end in sight, no way out.

You begin to imagine the cause of the problem: an accident so mammoth it involves multiple vehicles. This is the 18-car pileup you have heard about. Utter carnage: twisted metal fragments, scorched chrome and shattered glass strewn across the highway as bodies are being tagged and bagged and the death toll rises with each subsequent news report.

As long as you have been sitting in traffic, you expect this: you want this. In fact, you are craving it and like a vampire, your thirst for blood becomes unquenchable as your mind wanders. You get jittery in the driver’s seat. Maybe someone was decapitated, you think, and you wonder if you will see the head before it is cleared away. You want to see the head -- on the road, a face scowling in agony and unrecognizable to family members -- the headless body, half in and half out of a broken windscreen -- and no amount of Christmas music will soften your resolve. There must be a staggering amount of blood splattered across the road like a first-year art student trying to emulate Jackson Pollock. The feeling overtakes you as you shift uncomfortably in your seat and crack your neck. It is overpowering and you want to scream, “THERE BETTER BE FUCKING BLOOD ALL OVER THE ROAD!”

But there won’t be any blood; no body count, no mangled hulks of Detroit’s finest, not a single shard of glass: nothing. You will realize this as you pass signs for a Construction Zone that requires a lane shift and lasts about a minute before the Zone ends. And then the cars and trucks will speed up and reach maximum warp and you will scream and yell and bitch about the hours you just spent hopelessly crawling. You will curse the Heavens and no one will hear you: the only sound to be heard will be the sound of Connecticut, its population and government collectively laughing at you.

There is no going home without suffering.

This is how we returned to Queens on Saturday.

Thanksgiving was a success, if by success, you understand it to mean “without significant event.” Ebony’s mother made collard greens and, oddly, they mixed nicely with our traditional Thanksgiving fare of turkey, stuffing, mashed potatoes, carrots, salad, gravy and dinner rolls. Oh, and wine. There was wine. I bought two bottles of Travaglini Gattinara and one bottle of Ca Montini pinot grigio. Ebony’s mother had two glasses of it and truly seemed to enjoy it. I told her that the Ca Montini has zero finish and that’s usually the best selling point about the wine, because it’s true. It is a light, refreshing wine that leaves no aftertaste or fragrance in your nose. The Travaglini was for me: a Northern Italian red which pairs well with anything from veal to potato chips, and provided you like warm Italian reds, you would love it. But I digress.

Ebony was in fine spirits while we were in Newport, but still needed the usual care. I spent the first part of our dinner standing next to her, feeding her from a plate we’d made for her. She liked the collards, and the mashed potatoes (my forte) and turkey. I offered her a sip of wine, but she waved her hand. Uncharacteristic of my beautiful darling, but I suspect she did not want to drink in front of her mother, which seems incongruous as Sun was having wine: nevertheless, I didn’t push it.

The epic first-time meeting of mothers went swimmingly and that was no surprise: Ebony’s mother is quiet, doesn’t talk much, and my mother never shuts up. And Mom didn’t embarrass me, either, as she can be socially awkward with her persnickety opinions and stubborn attitude and clumsy manner. When she first met Ebony, in her earnestness to make a connection, she told Ebony about every black person she’d ever known since the day she was born until that afternoon. Ebony just smiled. She knew. There’s nothing racist about my Mom, but she can be clumsy: she did tell Sundai about something she’d seen on television with Al Sharpton, and about something he said that she thought was poignant. She called him “Reverend Al” and got so animated telling the story that at times I thought she was about to sing “Go Tell It on the Mountain.” Sundai was cool, though and didn’t say anything and I just blanched and kinda skulked out of the room for a bit. Mom forgets that Ebony can’t stand Al Sharpton and does not call him “Reverend” and used to make fun of him – the way many New Yorkers did – for his inscrutable 80s attire circa the Tawana Brawley incident. Good, bad or otherwise, I don’t have any opinion about the man, but I do remember that he looked completely nuts talking about “justice” walking around in a baby blue track suit sporting gold chains like a roadie for Whodini.

We never did get out to see the Crazy Christmas Lights house, and I hope to remedy that over Christmas. You do what you can and as much as Ebony can tolerate. It was enough that we were there. She was happy. 

The entire trip reminded me of every time we’d gone up, but especially the first time I introduced her to clam chowder, or as they say in Rhode Island, “CHOWDUH.”

I took Ebony to the Black Pearl, a restaurant on Bowen’s Wharf in Newport, right on the water. My friend Nicole used to be a waitress there and we went and sat in her section. We ordered the chowder and after one spoonful, Ebony was hooked. She exclaimed, “This is delicious!” and that was it. I turned her into a Chowder Monster – excuse me, a CHODUH MONSTUH. Funny to most Newporters: we all make fun of clam chowder at any local joint. My friend Chris Jones, who worked in many local restaurant kitchens would say, “It’s all Snow’s!” The thing with the Pearl is that they use dill and copious amounts of butter. It is delicious and we’re all semi-snobs but when our relatives and friends come to town, we take ‘em to the Pearl.

So, forever after, Ebony would have clam chowder wherever we went. She liked the chowder at the Pearl – loved it – but also enjoyed the chowder at Flo’s. So I got chowder from the Pearl for Thanksgiving and her mother – who had never had clam chowder – ever! – loved it and I think that if I have achieved nothing in life, I have done a Chuck Woolery on Newport clam chowder for at least two people I love. So I have that going for me.

I was thinking of that first time I took her for Chowduh… I love seeing her happy, seeing her face light up, seeing her smile. That’s what I got this trip: her smile. It’s become a smirk with the advancing state of her cancer, but I love it and I’ll take it and try to make her smile any chance I can get.

Tomorrow is her mother’s birthday. This woman has given up her life to be here and I think the world of her for it. She might be as quiet and low-key as a houseplant, but that is only my perception. She is a warrior: quiet, perhaps stoic, in her execution but nevertheless a badass for hanging in there in spite of the dire circumstances. I ordered flowers online and tomorrow, after I return the Santa Fe to Enterprise, I am going to order a full bucket of chicken and a bunch of sides from Popeye’s because she mentioned that she liked it and ever since Ebony turned me on to it, I can’t wait. It really is pretty great, Popeye’s. I don’t care about any stereotypes about black people and fried chicken: there is no denying that what is good is good and if you like it, well Fuck Everybody, we’re doin’ it. I love Popeye’s and would never have known this if Ebony had not turned me on to it and that in and of itself it why I am doing what I do for her. I just want to make her happy.

I don’t know how much time we have – the doctor says “Five years, maybe” and I will take that. Some days I think we’ll be lucky to get five months, but I keep trying because Ebony is so special to me. It’s all in the eyes and the way she looks at me telegraphs so much. We were just starting to talk seriously about wedding plans when she was diagnosed with cancer and I will forever regret that we never followed through, but what the Hell is marriage anyway? A piece of paper? Evidence of someone affirming what you already know? I love Ebony and if getting Popeye’s or clam chowder isn’t evidence of that, then I don’t know what love is any more than Lou Gramm.

I got Ebony’s Christmas present already. One of them, anyway. I have been looking for this goddamn thing on eBay for a few years now and I finally found one in her size. Ebony went to Buffalo State -- The State University College at Buffalo – and she has spoken so fondly of her time there that I have wanted to celebrate that. Since she’s such a metal chick -- a really, really metal chick – I got her a vintage Buffalo Sabres hockey jersey. Red, with the crossed sabres on the front and, appropriately, number 81, the Slovakian bastard, Miroslav Šatan. His surname is pronounced, “SHA-tan” but it reads SATAN. Pretty rad. Her mother is going to hate it, but it will make Ebony happy and isn’t that what it’s all about?

She got into hockey because I got back into hockey through a friend of mine, Alan, who used to play and then coached a local NY prep school team. He has since become the program director and is totally blasé about it – the only thing typical about him, he has this blasé attitude about everything, especially his achievements -- so Italian – but he reinvigorated my love of the sport. I can’t stand football, am indifferent to baseball and care nothing for basketball, but hockey… I love it. If you’ve skated and played it, that helps. But it’s a fast game that takes skill – you have to be able skate, for starters -- and PS: most venues play rock/metal between setups. So when a bunch of guys fly around chasing a piece of vulcanized rubber moving at 180 MPH, it is riveting and Ebony got into it which only made it better for me. We watched the Bruins (my first team before the Rangers and Islanders, Devils and Sabres) destroy the Vancouver Canucks in June, 2011 in Game 7 at Flo’s and Ebony was as into as I was, yelling, “Go Krejci, you motherfucker!” Chris was bartending that night and will never forget him giving us shots – everyone at the bar – when the Bruins won for the first time in almost 40 years. I will never forget that night because Ebony was having a great time doing something that I was into and I’m selfish that way I guess.

So I got her a jersey – not a Bruins jersey – but one that suits her.

Given her condition now, it’s hard to know what to get her. The jersey is frivolous, of course, but I think it will make her smile. And that’s about all I can do right now is make her smile and to that end, I will work my ass off. I don’t know what else to do or how to be.

I, Pagliacci.

In the meantime, there has been an early Chistmas present, just for me. It inspires me for that reason alone: I am lucky and have to try harder. One of my favorite bands – probably my favorite band since Type O Negative is “on hiatus” – The 69 Eyes, this goth n’roll band from Finland -- has actually released a Christmas song, “Christmas In New York City” and I could not be happier, under the circumstances. I played it for Ebony and she smirked. She likes it. 

You have to be grateful for the things you have and not bitter about what you do not have. At the moment, I am grateful for The 69 Eyes.

Right? It is Christmas after all.

And I am still doin' it for Ebony. It's going to take a lot more than traffic in Connecticut to break me. 

The Against All Odds Thanksgiving

Ebony arrived in Newport Tuesday night, shortly after 9 p.m., greeted by a red fire engine, with its cherries popped, and three firemen standing in the middle of Gibbs Avenue, talking to my mother.

And this is how we began our Thanksgiving week in Rhode Island.

I got in Tuesday morning, following my Monday night shift, around 4. I was up for a little while then turned in. I got up at 9 a.m. Sun was already up, her mother that is, and sitting with Ebony, feeding her a little breakfast, some fruit, I think.

I was starving so I made myself a garbage plate of leftovers. A little ground beef, Kielbasa, diced red and white onions and an egg, fried in butter on a medium-high heat and served over toasted rye bread topped with cole slaw, pickles and mayonnaise: a deconstructed hamburger. It was so good: just hot, yummy and filling and just what I needed. For a few moments, everything was fine and it was going to be a great day.

And then the world turned black.

In Ebony’s current condition, her right leg is unresponsive and does not function. Where before the lumbar puncture, she could balance on the balls of her feet, like a ballerina and support herself on that side when standing up. Only weeks before that she was shuffling around with the walker, gliding along effortlessly like a figure skater.

Now, what I have learned is that she needs to be fully awake and alert in order to stand on her right leg. Coming out of a sound sleep, Ebony is bleary-eyed, groggy and nods off frequently. Trying to lift her only has her body slipping down in my arms and I desperately try to swing her to the wheelchair only to fail several times in row, after which I am sweating and need to sit myself.

This was one of those days. After some time and a few moments where I wished I had not eaten, I had managed to clean her up and get the pull-up adult diapers over her ankles and pull them up. I really hate calling them diapers, she is too genteel for that. I prefer the French, which is on the packaging for some reason. Her aunts have been participating from North Carolina, throughout this ordeal, shipping us things like this and I guess they order them from Amazon Canada. Instead of diapers, Ebony wears Les sous-vêtements pour incontinence, absorption maximale. Or, simply: French underwear.

Pulling her French underwear on while she’s laying down seems like it should be a piece of cake; but Ebony is gifted in a way that Nicki Minaj is gifted and as she is unable to prop herself up on her own, this turns the simplest-looking task into a conundrum better faced by Hillary Farr’s contractor on Love It or List It. It takes time and it also involves rolling Ebony forward, then back, and a lot of pulling and general disbelief. Just pulling on a pair of loose-fitting sweats is equally challenging and time-consuming.

Cleaned, dressed and still nodding off, her mother and I manage to get Ebony vertical and then seated snugly in her wheelchair. This has a lot to do with the fact that Ebony woke up briefly to the pulling and such, and managed to support herself on her left leg long enough for us to get her sorted out.

So, mission accomplished, and at now 1 p.m., I walked down to the car rental place.

We live way out in Queens, just off the Van Wyck, in an area that is filled with car dealerships and auto-body shops, near Lee’s Toyota. And near Lee’s Toyota is Enterprise car rental. I can walk there in 15 minutes. The problem was, since it is “a holiday week,” a lot of the cars were not ready on time, or coming from one place to another. The car I reserved was coming from the airport. I’m not entirely sure which airport, but it might as well have been Logan. My plan to get us on the road by Noon, 2 at the latest, was quickly dissolving.

I finally got the car, a 2018 Hyundai Santa Fe, which is a stylish SUV with all mod cons and plenty of room for three people including one with extra long legs, a wheelchair, a walker, a bunch of stuff and my bag of laundry that I have been neglecting that, when I carry it over my shoulder, probably makes me look like I’m shipping out to… well, Newport. Newport, Rhode Island was one of four Navy boot camps where enlisted men were sent during World War II. How appropriate.

I have never driven an SUV but quickly adjusted. I knew I wouldn’t find parking so I just drove up on the patio in front of the building and parked and hit the flashers. Went upstairs and started packing and when it was time to bring Ebony down, Taddeus, our tall Polish super, offered to help. At least I think he did because I have a lot of trouble understanding him. He loves Ebony, though, ever since she moved in. “Jet Blue! Jet Blue!”

We wheeled Ebony up to the front passenger side and on the count of 3, tried to lift her, then pivot her into the front seat. This did not go well and Ebony immediately went down on her legs, slipping from my arms until her ass was resting on the runner. Taddeus jumped in the back seat and helped pull her back up and after about ten or fifteen minutes of pulling and lifting and trying to maneuver her, we got her into the front seat, and I buckled her in.

Taddeus kept saying, “Oh my God. Oh my God.” He didn’t realize how much she’d declined since this began and I think he was truly sad. I was just wiped and relieved he was there and kept thinking about what might have happened if he had not been.

Soon, shortly before four o’clock, we were on the road. Everything I dreaded about driving North-bound along I-95 came true. All I wanted to do was beat the traffic but instead we schlepped along like an old dog all the way up to New Haven. It was excruciating. The only good thing was that we listened to the Coleman Hawkins birthday broadcast on WKCR, a marathon of the great jazz tenor sax player hosted by Phil Schapp, which kept my blood pressure down. Ebony woke up once we hit Connecticut and was in and out the rest of the way but I think she enjoyed the excitement.

After we got to New Haven I decided to test the powers of the Santa Fe and punched it to make up for lost time. We lost the KCR signal and soon were listening to Christmas music, courtesy of the syndicated John Tesh, on Lite Rock 105, Providence.

Ebony has suffered for 10 years of my adoration of the seasonal all-Christmas radio format and whenever we’re in RI for Thanksgiving and Christmas, it’s on. They play all the usual things and feature new music – Pentatonix – but over the years have also included music that would not be considered traditional Christmas music and this irritates me, because it’s all really, really depressing. Joni Mitchell’s “River,” Dan Fogelberg’s “Same Old Lang Syne” and the fucking “Christmas Shoes.” They won’t play Billy Squier’s “Christmas Is” or anything remotely heavy… also, they never play the good Johnny Mathis like “Calypso Noel,” but nevertheless, I tune in and Ebony tolerates it. She likes Nat King Cole and Dean Martin, though, so she hangs in there. Either way, we were playing Christmas music when we rolled in and saw the flashing red lights…

Mom decided that, since we do not have a wheelchair ramp, and Ebony needs assistance to walk, MY idea of calling in friends (and in one instance, a good friend said her father – an awesome guy to be certain – would come over and help), was insufficient and therefore called the Newport Fire Department. So, Peter Boyani and two of his best men were on hand to lift Ebony out of the Santa Fe and into her wheelchair, then lift the chair into the house and then still, lift her out of the chair and onto the couch. I couldn’t thank them enough and started choking up doing so.

It’s not perfect but I cannot bear the thought of putting her in some home or acute care facility and this is evidence of it. It is difficult, it is scary and not without event, but when she woke up Wednesday morning, I was right there at her side and she touched my hair and put her hand on my face and smiled.

She was pretty good Wednesday and I don’t know if it’s because she’s here and my Mom is doting on her while blithely challenging her cholesterol intake (“Do you want something to eat? I can make you a bacon butty with some potato chips on the side if you want? How about a Coke?) but she is livelier than she’s been in a while. I went out and ran errands – I got ham hocks and collard greens for Sundai who is making collard greens – and stopped at the Black Pearl to get clam chowder and I made three trips to two different Stop & Shops plus one to my arch-nemesis, Shaw’s; and finally one brief stop at Vicker’s Liquors because I am weak and terrible human being with an affinity for Italian wine and am going to have a glass for the first time since early September. 

I cannot say that I am relaxed but I can say that Ebony is surrounded by people that love her, entertain her and are spoiling her. It’s not an ideal situation but what is? I have promised myself I am going to focus on the positive and keep everyone’s spirits up as best as I can. I keep thinking of all of the amazing times I have shared with Ebony, many of them in Newport, and I could not be happier to be here.

With any luck, I am going to try to get Ebony out for a little bit tomorrow. We live around the corner from the crazy guy who has the insanely spectacular Christmas display in front of his house near Braga Park  so I think it might be nice for her to see as we’ve always stopped by to stare in utter bafflement and take pictures.

As with everything else, we’ll see.

Happy Thanksgiving~!

  

Slipping the mooring

“I HOPE YOU GET STUCK IN TRAFFIC AND HAVE A HEART ATTACK YOU FUCKING YUPPIE TWAT! YOUR MOTHER SHOULD HAVE SWALLOWED!”

…so, that was my Friday.

It’s Sunday night now, early Monday morning really, and I’m home from work. Charles Manson is dead, every actor and politician has his own personal sexual harassment scandal and I don’t feel anything. I’m numb. It distracts me for a while, being at work, and I cherish that, but once I walk outside I am back to the reality and self-pitying sadness that haunts me.

I’m so frustrated and scared because I’ve never felt so helpless: like a boat that’s slipped it’s mooring and just drifting.

Sometime over the past two weeks, Ebony has lost control of her right side. Her arm is weak and she struggles to raise it. She instinctively reaches up to scratch her nose and has to lean forward to meet her hand. I say, “Let me, let me,” and reach to help her but she wants to do it herself. But she can only do so much.

Her right leg is a problem for her. She cannot summon it to carry her forward or put weight on it. I thought, perhaps foolishly, that she would regain use of it but I’m not seeing progress and concerned about the coming days, the future. She used to be able to put her weight on it, and with the walker, could get around. Now, she cannot stand without me supporting her. This makes it difficult to do any number of things like getting her out of bed and into the bathroom, cleaned, dressed, into the wheelchair… it is a struggle.

I was up at 6:30 on Friday and we had an appointment for her first Avastin treatment at the hospital. A drug given to her through an IV. So, I have to get her up. I have to clean her up and get her dressed. It’s not pretty. But I am there for her. Thing is: it is harder when she cannot stand and I am terrified of her falling.

Ebony cannot communicate verbally. Not well, and it depends on how awake and alert she is. She shares with me certain glances, and now and then, when she is up to it, a hand gesture. These glances and gestures, I live for.

Nevertheless, I can see the pain in her eyes, the bafflement as to why she has to be afflicted this way, the embarrassment and concern over the loss of her independence, her dignity, her mystery… her je ne sais quoi.

I am powerless to fight what is ailing her and this wells up in me like a cresting wave. I am gentle with her when I have to lift her: I kiss her on the cheek, on the mouth, on her forehead and tell her I love her over and over. I brush my hand across her hair, I caress her arms, I have to take her through the rituals of basic hygiene and have to remember everything. Clean her up in the shower, dry her off, get her to brush her teeth or do it for her when she is weak. I make sure to keep her lips from chapping and her face and skin properly black-girl-moisturized in what is sometimes a challenge but always a pleasure. I am trying to let her know she is loved and in some small way, let her hold on to her dignity and her I-don’t-know-what. I have to remember to put her deodorant on, clip her nails, clean her ears. I think it should all be rote but every day brings a new challenge and we slip off the mooring.

We have to get her to the hospital and to do this I use Lyft. She had gotten me the app in the first place – she didn’t want to use Uber because of all the incidents where women were attacked by their drivers – so I use this app but there’s no filter for “good for wheelchairs.” I got this one on Friday, it was like a Nissan Rogue and getting her in, now that her leg is not working properly and she starts slipping down. I’m holding on with all my might but her legs are going. The driver comes around and he’s trying to help but he pushing my back and I don’t know what he’s trying to achieve. Her mother is trying to lift her but no one is one the same page about how to get her up and after much pushing and lifting, we get her into the car seat. I strap her in and the driver packs the wheelchair and off we go.

And I am already a wreck. Ebony, after 20 minutes or so, starts looking out the window as we drive and I think the experience stimulates her. She’s looking, she’s taking it all in. I just want to go back to bed, but you know.

We get to the hospital and got her in and out of the car without incident. We go up to the Infusion center where everyone goes for chemo and other goodies and check in. Surprisingly, we are not only on time but five minutes early.

Ebony had her first Avastin drip. 90 minutes; but before that, they spent 35 minutes pricking her arm trying to get a blood sample. I told the RN it was not going to be easy and why. For two and a half years she has given blood to these vampires and her veins are so constricted from this and the various treatments, it takes them forever and a series of stabs to find a vein they can use. This girl – my beloved – is being treated like a fucking pin cushion and it makes my blood boil. So this RN, this guy, was predictably cocky. “You came to the right place!”

So almost 40 minutes later, he gets a vein and preps her arm for the drip. I’m kinda looking at him, like, “See?” but there’s nothing to gloat about when Ebony is getting stabbed to death by vampires and this is considered quality health care.

So, with all the waiting to do one thing, and then the next and then waiting for elevators, we left the hospital around 3:30 going on 4.

Out front, in the pickup/dropoff area, the have these special taxis that come by. These taxis are designated specifically for people in wheelchairs: an SUV thing exclusively made for picking up wheelchairs with a drop back ramp that is unpacked to allow the person in the chair to simply roll up, lock the wheels, get tethered in and, once the back hatch is closed, ride on through the night. These taxis actually have a symbol of a person in a wheelchair on the side of the vehicle. They are designated as such for this reason.

I’m at the front entrance of the hospital, 525 East 68^th Street, and I see one of the special cabs. I start walking towards it and there’s no wheelchairs in sight. I start waving at the driver to get his attention and wave him over and out of nowhere this guy comes fast-walking past me, carrying a newspaper and a briefcase and goes right to that tax and jumps in.

I yell, “Hey! What’s the story?” I’m looking at the driver and at the passenger side and he won’t roll down his window, shaking his head. So I go around. I went up to the driver’s side and I actually walked in front of him when the cabbie was trying to get in gear, so he was going nowhere.

I said to him, “What’s the story, man? This is a wheelchair accessible taxi for people in wheelchairs. Whaddya takin’ this guy for?”

And the guy in the back, this bargain basement Ed Begley, Jr., looks at me, looks at the driver in his rear-view and says, “I got the cab. Let’s go.” And he made this gesture with his hand, waving like some king dismissing the lute player.

So I lost it… I’m a hothead. Anyway, fuck that guy. I started to walk away and one of the security guys came over, flashy reflective vest guy, and told me that if I call 311, I can request a taxi specifically for this reason. How would I know that? How would anyone? A wheelchair taxi: not more or less expensive, just a taxi that handles wheelchairs in this manner that is equally expensive. So, progress. I guess.

I called 311.

When the requested taxi comes and it’s Borat’s dad and he’s all about America and helping people in wheelchairs. He played classical on the radio the entire time – a mix he made for his ride – and it included the Four Seasons and this thing called “Hungarian Dance No. 5” by David Garrett. It was all very relaxing. I kept looking back to make sure Ebony was okay and I watched her looking out the window. She would see me looking and smile at me and that just made me so happy. I could see she was enjoying being the cab, riding through the streets, over the 59^th Street Bridge, through Queens in Friday rush-hour traffic. She loved it.

Took us well over an hour to get home and I had been up since 6:30 a.m. and in spite of how long the ride home was, Ebony was definitely intrigued by the experience.

When we got home, she was up for maybe 40 minutes and then we put her to bed. It was a long day for her – for all of us, especially her poor Mother, who has to put up with an Irish hothead who does not suffer fools gladly – and so we made her as comfortable as we could and each called it a night.

I fell asleep for a couple of hours and then was up for a while. I looked around for a movie to watch and ended up watching “John Wick.” But I had forgotten to put the volume back up so I could hear my alarms and good, bad or otherwise, slept until almost 4 in the afternoon.

I felt terrible but it worked itself out. Ebony’s supervisor from jetBlue came over and spent the afternoon. She brought all this food and crazy snacks and she and Ebony’s mom looked after Ebbs. I got some coffee and apologized but apparently she’d been a caregiver for a family member and understood what we’re going through. That somebody truly understands what you’re going through, and share that with you, it’s as if they’re absolving you of your sins.

It gave me such relief. At least for one night, but it helped.

After she left and we put Ebony to bed, I returned to my inner sanctum and watched “The Trip to Spain” and got lost in two hours of British comedy and gorgeous Spain. I love Steve Coogan and Rob Brydon and this was the third installment of their excellent series combining food, travel and masterful impressions (the others being “The Trip” and “The Trip to Italy”) and this was just wonderful. It just took me away for a couple of hours before I went to sleep and it was needed.

Sunday morning I got up and maybe it was all just too much excitement for Ebony but she wasn’t doing well today. We didn’t push her and before I knew it the sun was setting and I had to go back to work. So much for my time off.

Tuesday, we go up to Newport to spend a few days with my Mom. I am looking forward to this and dreading it a little. We need to get a ramp of some kind for the front steps because it’s clear Ebony won’t be able to walk.

I often wonder if I’m doing the right thing, or if there’s a better way to care for her. Certainly if I had money, that would help; but I don’t know what else to do other than make her comfortable and let her know she’s loved. I think the trip will be worth it, but I worry about this and everything else when I’m awake because each day brings a new challenge.

I worry because I love her.

Bring on the fucking Holidays!

Recently, a friend suggested I should prepare to let Ebony go.

I think I know what they meant but I’m not ready to face that. Truly, I know that Ebony’s time is limited. When she was first diagnosed, her doctor said that, once treated, she could have at least 20 years. This summer that changed. Ebony kept this from me, from her mother and her friends, but she told my mother that her doctor had told her she was now looking at five. I asked him if this was true and he confirmed it. I’ll take five; but the way things have been lately, I honestly wonder if we’ll have that long.

Ebony has given me the best 10 years of my life. I think of all the incredible experiences we’ve shared and all the times I’ve spent with other women before I met her, incredible as they might be, put together, cannot compare. I was enchanted with her from the day I met her, the moment I saw her: I have witnesses and there is a picture of the two of us from that night that I cherish.

I have been thinking about that night a lot.

I remember our first date. I remember the night I first kissed her. She kissed like the world was on fire.

She still does. Just, you know, we’re not all tongues or even “Church tongue,” but just nice simple kisses that are okay in front of her mother or that no one would be grossed out by or shout, “Get a room!”

I remember everything.

I remember one night when we were in Newport, staying at my Mom’s. I was sick as a dog and taking every over-the-counter pill, remedy and elixir available at CVS. We were up in my bedroom and it was late afternoon and I was just out. She had put me to bed and I remember her telling me she was going downstairs to get something to eat and then come back up and read her book. At some point I woke up to this… loud, crunching sound. KRRRAAARRRKKK… chomp, chomp, chomp… silence; then: KRRRAAARRRKKK… chomp, chomp, chomp…

I turn my head and opened my eyes, and there was Ebony, sitting in bed next to me, reading her book and eating potato chips out of the bag. And the second we locked eyes, she was putting a chip in her mouth. She looked startled, like she’d been caught stealing and I just started laughing. It was funny to me about the chips – she loves chips – but she stayed with me, right next to me. That was really the thing. She could have sat in the comfy chair or on the couch in the front room where her chipping fiendery would have gone unnoticed: but she stayed with me.

I cannot, and will not, give up on her. I can’t, I just can’t. I won’t throw in the towel. I don’t want to prepare for the inevitable because if I do -- to me -- it’s as if I gave up. Like a stupid Boston Bruins fan when they’re down two and there’s, like, five minutes left in the third period. That’s me: I am a stupid Boston Bruins fan who is not going to stop hoping against hope that fucking Zdeno Chara is going to score twice in five minutes and force the game into overtime.

My friend wasn’t wrong or out of line to suggest this to me. They were right to do so and a good friend for having the guts to say as much. But they also need to know that I am in my late 40s and still bite my nails. I am a nervous wreck all the time and this has only exacerbated things. Clearly, if I was a relaxed, sensible, blasé kind of person, I would not bite my nails and I could prepare for the inevitable. But I’m not. I’m a hot-headed, Anglo/Irish-American Boston Bruins fan who listens to extreme metal and like, Fatoumata Diawara and wants the Bruins to win.

If you asked me, “What are you?” I wouldn’t know how to answer. I am this guy. I’m not that guy or the other guy, I’m this guy. And this guy will get up every morning and take care of the woman I love even that means I have to wipe her ass, help her brush her teeth, put that special secret black girls’ lotion all over her skin from head to toe, clean her ears, dress her, cook for her, feed her, make her take her pills when she doesn’t want to and do it all over again. Because if I don’t do that, then I’m that fucking guy. That fucking guy is the guy who walks in and people lean in to whisper to their friend and gently point, “That’s the fucking guy I was telling you about.” Nope. Not doing it. Not now, not ever. Not me. Like the line in the Motorhead song, “Stagefright/Crash & Burn” – “Not me, not me, not me!” In for a penny, in for a pound. And if this is what I get, then this is what I get.

This girl, the love of my life, dressed up in my handmade Adam Ant Hussar jacket to see Adam Ant with me on his first US tour in almost twenty years, even though she only knew “Goody Two-Shoes” and “Stand and Deliver” and would much rather have been seeing Judas Priest or Carpathian Forest or the Suicidal Tendencies. This girl, the love of my life, sat next to me eating chips when I was sick – from the fucking flu – because she didn’t want me to be alone… this girl, who stood by me and held my hand when I was out of work and managed to scrounge some money and take her to dinner and a show at the Comedy Cellar the night Chris Rock showed up and excoriated me in front of a full house for not having money and wanting to marry a black woman… this girl, who is not a sports fan, who sat with me upstairs at Flo’s in 2011, the night the Bruins won the Stanley Cup in Game Seven, for the first time in 39 years, and cheered them on the entire time like she loved Bobby Orr…this girl who loves INXS and hung on every word when I told her about the two times I’d seen them live… this girl who took me to New Orleans when I’d never been and said I would love it… this girl, who walked next to me in Jamaica when I wanted to leave the designated cruise ship “safe” area and found the awesome jerk chicken place… this girl who read The New Yorker and The Atlantic of her own volition, when all I read was Vanity Fair…

I don’t have a lot of friends, especially ones that would kiss me, but I don’t fucking walk away from that. And I’m not ready to sign off on Ebbs.

Ebony is resting now and will be resting all weekend. Doctor’s orders. I managed to change her on while she was laying down, which was a first. I prefer to get her up, get her into the bathroom, get her cleaned up in there, showered and changed; but even though it’s “a minimally invasive procedure,” yesterday was still a long day for her – for all of us – and I’ve seen them do the change at the hospital, so I gave it a try.

I had the Rangers game on, Rangers v. Edmonton, and she stayed awake long enough to see Nash put it in on a power play but she’s been out most of the day. Her mother and I sat her up for a bit to eat – I ordered pizza for her –and then to give the meds she doesn’t want to take and then put her to bed.

I have been saying to people, and to myself, that I should not focus on what I do not have but learn to be grateful for what I have. I have Ebony and she is here and this is how she is. So I’m coping with that. It’s not easy. There’s no days off and I rarely get to sleep in. I’m not perfect. I am certain that I am a failure and a fraud and there are far better men than me. And God and Satan both know I could use a drink. But here I am.

One thing I figured out: since the recovery from her lumbar puncture (Spinal Tap) I have decided to move Heaven and Earth and bring Ebony home to Newport for Thanksgiving. Her mother, Sundai, is still here, and since our Moms have never met, this is going to be historic. I have to rent a car, figure out some shit about packing for the drive up, as it pertains to Ebony and her needs; then, ah… I have no idea. I am going to ask my bosses if I can have Tuesday off so we can beat the traffic and drive up that that day, which will give us three days in Newport if we come back on Saturday (I work Sunday nights). If that is cool – and believe me, ABC has been fucking cool so this will really test the waters -- that’ll give me Wednesday to run errands. So if you see me in Newport, running around, the day before Thanksgiving, well… I have a lot going on. Her mother has NEVER had Clam Chowder, by the way. The first time I brought Ebbs home, it was the same thing. She had never had clam chowder before and once she tried it… well, I turned her into a Chowdah Monstah. I hope her Mom enjoys it as much. No time to take her to The Black Pearl, but I will have to get down there and get some chowdah for the occasion. I mean, right?

On Friday, the day after Thanksgiving, while others are out shopping, Mom and I usually put up the tree and out, all of her crazy Christmas decorations. The tree, the ten thousand Christoper Radko ornaments she’s been buying on QVC since 199-something, the ten million ready-to-march nutcrackers. The Spode Christmas Tree collection dinnerware. All the shit. So that’ll be fun. Mom will have all the weird holiday nuts out, the port wine cheddar ball, Goldfish… I’ll put a fire on and blast Christmas tunes by old-timey crooners and with any luck it’ll be a fucking Hallmark Christmas movie in 2018 starring Christian Slater and Brandy Norwood.  

Never a day off, but I don’t care. But you know what? IDC. On Thanksgiving I will get to have wine.

So yay. Bring on the fucking holidays!

Reflections on dark days

Daylight Savings Time could not have occurred at a more frightening time in our lives: I fear there are dark days ahead. 

When Ebony was being discharged, I was enthusiastic because the attending physician said the she was responding well and had been talking. When we got her home, I expected her to be tired from another hospital ordeal, and she was, but I fear I am not seeing any improvement. If anything, she seems worse.

Maybe I am overreacting because I know her so well, so intimately; but you would have to be blind not to see the changes in her are more pronounced.

It took almost two hours to wake her up this morning, and I started trying at 8 a.m. I finally managed to get her up and into the wheelchair and wheel her to the bathroom. When I tried to get her to lean forward in the chair, so I can wrap my arms around her waist and pull her up, she simply would not budge. Defiantly so, she sat in the chair looking at me with her eyes wide open, as if she was searching for a reason I would put her through all of this. It took time to work through this as she resisted quite a bit.

When I finally got her up, I could see how weak her right arm is. She cannot raise it above her shoulder without help, and then she winces. Her right leg was bad, as well. She doesn’t want to put her weight on it so she keeps her foot extended like a ballerina and is afraid of moving it.

After I cleaned her up, got her dressed and returned her to the chair, I made breakfast. She ate, but needed help. She fell asleep in the chair for most of the afternoon and I was reluctant to wake her. She’s going through so much and barely communicating and it breaks my heart to watch her struggle. 

When I ask her the basic cognitive questions the doctors do, she is unresponsive and just looks at me. She doesn’t seem to know the month, date or year, but knows she is home. She did not know or say my name. I ask her these questions daily, and I live in foolish hope that one morning I will ask her to say my name and she will smirk and say, “You’re Heisenberg.” So far, it has not happened.

Tonight I made dinner: sautéed chicken breasts with artichoke hearts and asparagus tips in lemon and butter. I cut up her chicken into thin slices so it would be easy for her to eat. I heated up some mashed potatoes and made corn with lots of butter, the way she likes and her mother brought her to the table. She could not lift the fork and kept leaning forward in the chair. I had to feed her but she would only eat a few small bites and then sat back and closed her eyes.

I try to engage her and talk to her, joke with her, tell her I love her and usually she responds. A glance, a smirk, a squeeze of my hand. Tonight, nothing. She was somewhere else.

At five o’clock I tried to get her to take her pills and this is only getting worse. She could never take pills well, but now it is more challenging than ever. I feed her the small pills and put the larger ones in apple sauce. In either case, she holds them in her mouth for a long time and ten, fifteen minutes later she’s leaning back and nodding off and I don’t know if she’s swallowed the pill or not. Then I have to wake her up as gently as possible and we go through this again and again. Each time I wake her she becomes more resentful, scowling at me the way cat does if you pull its tail. She might as well have hissed at me. I have to keep fighting for her but what do you do when the person you’re fighting for becomes your opponent?

At 6:30, she was out and her mother helped me get her out of the chair and into bed. I kissed her goodbye but she was already out. I hate leaving her like that: when she has bad days like this, it rips me apart because I worry that I will come home and when I wake up, she’ll be gone.

I don’t know what to do to make her life better and not just an existence. Times like this I think she’s slipping away and I want to protect her, hold her hand, soothe her and make it better.

I told her mother, “Well, we’ll try again tomorrow.” Trying to be encouraging but feeling all the worse for wear and part of me dreads what tomorrow will bring. 

Hope springs

We have been here since 3 or 4 I think. Her condition really declined over the last two days but especially this morning. She was unable to stand, even with the walker. She’s been non-communicative and physically weak, but some days are good, some bad: how can we be certain if the situation is dire or merely exhaustion?

The speech therapist had come for her appointment and after a little while told me that she needed to call the doctor. She did, then put me on.

He said, “I am concerned that she may have had a stroke, or a seizure or possible bleeding on the brain. You have to bring her in.”

Today marked my third ride on the back of an ambulance in New York.

It is now after 3 a.m. we have been waiting and waiting. Ebony has had a CT scan and chest X-ray, but has been been waiting for an MRI for quite a while. This is partly because she has done so much bloodletting in the past year, coupled with her recent radiation treatment, her veins are difficult to find. This has been ongoing, but tonight the nurse had no luck so he got a resident. The resident tried, failed and returned with a portable Sonogram machine. That yielded nothing so they got a doctor. It took her FOUR tries with the Sonogram on both arms before Ebony was fixed for an IV. They told me to keep her arm with the IV steady, and I asked if they could put a splint on, Because I know Ebony.

The Doctor said, “That’s not a bad idea.” So they did. I wanted to say, “I’ll send you a bill.” but I thought that would make me sound like a dorky-trying-to-be-funny-Dad, so I didn’t. But I thought it.
But, I mean: shouldn’t THEY have thought of it? Yeesh. Ebbs now has a splint on her arm to prevent her from bending and disrupting the IV lock and I stood  there for an hour holding her arm steady while she slept.

So now we are waiting at her bedside. They took her BP (low) and want to give her a couple hours rest before bringing her to Imaging. After that, they are going to admit her to Neurology. We still do not know if Ebony has suffered any damage because of a stroke or a seizure or what.

It seems we are in for another all-nighter and back to Square One. Only two days ago I was talking with her about trying to go up to Newport for Thanksgiving and have our Moms meet at last. She smiled and said she wants to go.

Hope springs eternal.