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. 

Between Heaven and Despair

It’s a little after 3:30 and I’m at Au Bon Pain in the main lobby. They name some of their items after places and things: the Newport Turkey sandwich, the Farmhouse omelette, Southwest Chicken soup. I think, given their location inside a hospital the size of Weill Cornell in New York City, they should name the items after moods of the people who have loved ones here to reflect their place within Health Care.

For example: right now I might be having the Despair Deluxe Vegetarian Salad, a small Panic Attack Chicken Noodle soup with some of those nice Parmesan Breadsticks for People Who Have Just Given Up. And of course I would wash that down with a lovely 16 ounce bottle of Yelling At The Top of My Lungs Because I’ve Had It with the Lousy Cell Service in This Place Sparkling Water.

Ebony is resting and looks as if she doesn’t have a care in the world, in spite of being fitted with an EEG to monitor her brain activity for evidence of possible seizures. I was informed by Katie, her nurse, that neither family nor friends may sleep in the room, so I took my overtired and disgruntled ass downstairs to consider something to eat.

I ended up having the Despair and a small Panic, but only had a bottle of Poland Spring to drink.

We admitted Ebony on Saturday because she has had increased difficulty swallowing and started to “pocket” her food, holding it in the corner of her cheek like a squirrel. More, by the end of the week she was unable to consume water and it would dribble slowly out of her the corner of her mouth when she turned her head.

The doctors in the ED — Emergency Department — said she was dehydrated and ran an IV of saline and one of potassium along with her regular drug cocktail, which, unfortunately for her, does not contain vodka. But it was deemed necessary to insert a feeding tube, something I knew nothing about. It is a medical line, similar to an IV line, that is inserted into your nostrils and fed (pushed) back and down your throat into your stomach. It is awful and if you ever want to really hurt someone —  maybe someone who cuts you off in traffic — in my opinion, threatening to “stick a feeding tube down their fucking throat” would be a more than satisfactory means of exacting revenge than merely shooting them. If you shoot someone, they’ll (probably) die. If you stick a feeding tube down their throat they will be in great agony and then continued discomfort for as long as they were made to use it.

Ebony was in pain and winced and shrieked and tears ran down her cheeks as the Attending Resident (Resident Evil) made three attempts to succeed, first with a line that was too thick, then twice more with a thin line. I held Ebony’s head still and cried with her whispering to her that it would be okay and I loved her and we needed to do this.
I hate myself.

Having finished, Resident Evil taped the line to her nose and I asked for a mouth swab, which is a sponge on a stick that you dunk in ice water and pour in an antiseptic of some kind to cleanse the mouth. I just wanted to wet her mouth a bit because the feeling of having a tube down your throat must be excruciating. It did not escape my Catholic School upbringing that I was now like the Roman sentry who taunted Christ on the Cross, giving him a wet rag at the end of a stick to wet his lips, cruelly soaked in vinegar. Here, my Beautiful Bride-to-Be, enjoy this delicious antiseptic cleanser and know how much I love you. ❤️

The resident returned to say they had to X-ray Ebony’s stomach to make sure the tube was in right and guess what? It wasn’t. So at four-thirty in the afternoon she had to remove it because it hadn’t reached her stomach, which was no more pleasant than when it went in as it was removed coated with saliva and blood.

Her mother, who has been staying with us to help take care of Ebony, joined me in asking that Ebony be allowed to wait a day before trying this again so she got a night’s reprieve and then, in her hour of need, I had to go to work so I would manage and produce the backstage audio highlights from the 90th Academy Awards.

While at work her mother texted me to say Ebony was finally brought to a room and she was going home to sleep.

I have since returned to her room to watch her for a little bit — she is sleeping like an angel — and I will stay here or outside probably until her mother returns at Noon.

I went back and talked to the nurse, Katie, who patiently listened to me explain our journey in the last five years and smirked knowingly when I groused about the bedside manner of the attending physician from Sunday morning. I realized I was talking her ear off about Ebony — how we met, her love of heavy and extreme metal, places we’d been and things we had done together. I even showed her pictures of Ebony over our ten years together. I have been doing that a lot lately, because I no longer socialize. I don’t see my friends, really except online and in the end I can only really talk about one thing: Ebony is the Love of My Life. Yet I find myself talking to everyone from cab drivers and the Asian lady at the vegetable stand I am certain is a drug front, to security guards to Sting’s publicist about her. I do it reflexively and don’t even realize that I am doing it sometimes. It has been on my mind a lot recently: Ebony and I would have been married this year. That was sort of the plan. We got engaged in 2011 and we’re enjoying a long engagement, spending time living together and really learning about each other. When we started talking, somewhat seriously about a wedding and honeymoon, around my birthday, she started having what we later learned were auras and that summer was diagnosed with brain cancer.

At some point this morning , her doctor will join the Neuro team and check in on Ebony and her EEG. And then they will have to fit her with the feeding tube but Katie seemed to think a better trained resident would be enlisted. I will still beg her doctor to consider reasonable alternatives that might be less invasive.

Of course, you will be able to read all about this in greater detail when I finish my memoir, “Doctor, Doctor Please! My life is a UFO song and other tales about being a Heavy Metal Caregiver.”

I once interviewed Ian Astbury, frontman for The Cult and one of our favorite singers, and asked him why he hadn’t written a memoir. He said, “Because the story isn’t finished yet.” Neither is my story about Ebony. I just hope it has a happy ending.

New Year's Day and Christmas memories

Happy New Year~!

We sat Ebony up today. She was pretty wiped out from Friday, her latest treatment, which happens every two weeks, and we don’t push her after she’s had treatment. The treatment itself takes an hour but getting there and getting home takes an entire day. We have to get her up, clean her up as usual, get her dressed – and get her extra special dressed with leggings and a sweater and her new coat – and then get her into her wheelchair, with gloves and hat, scarf and a blanket to keep her warm while we wait for the 311 wheelchair accessible taxi to take her to Weill Cornell/NY Presbyterian. It’s a whole thing and coming home is just as laborious. In this weather, the key is to keep her warm. And we do that, but the day takes so much out of her that the next couple of days we don’t push her and let her rest. We get her up but that’s about it. She watches Property Brothers on HGTV, which she always loved, and that’s it.

So we sat her up today and she was mostly out of it. She was awake, but nodded off a lot. Still, when she was awake, she was engaged with the Scott brothers and watched them renovate a bunch of homes and enjoyed it as much as she ever did.

I went out around 3 and ran some errands, and while I was out picked up two little bottles – splits – of champagne. Nothing fancy, a couple of seven-dollar bottles of Chandon. I put one in the fridge for Sundai, Ebony’s Mother, and I stuck one in the window of my room, between the screen and window to keep it cold. I nodded off around 10 and woke up at 1:30 a.m., kinda missed the whole New Year’s thing but opened it up and – even though it had turned to slush – sipped a little for the New Year. I don’t have any silly resolutions, just the same thing I’ve had for some time now: I resolve and have resolved to make Ebony’s life a little better and keep her comfortable and try to make her happy.

I thought a lot about what song I should listen to, the first song of the New Year and really wrestled with it. I chose Fear Factory’s “Cars,” featuring Gary Numan. I don’t know why, exactly, but I have been thinking about Gary Numan’s “Cars” lately because I have been listening to a retro-futura New Wave band called Timecop1983 and their entire oeuvre is about trying to sound like a movie soundtrack from… 1983. This one album, “Journeys,” came out a few years ago but it is one of the albums I have been listening to. All these writers have their “My 10 Best whatever This Year” and I wish I could join them but I’ve been kinda busy and the shit that I have discovered on my own is… a few years old. None of it is from 2017. Not really… one or two but mostly it’s older stuff.

So the shit that I have been listening to this year, to put it in a Top 10 List, is the following, in no particular order:

The Skints, “FM”
Timecop1083, “Journeys”
Motorhead, “Heroes”
Powerman 5000, “Cult Leader”
Roosevelt, “S/T” (The debut album)
Seventh Void, “Heaven Is Gone”
Filter, “Nothing In My Hands”
Oceans of Slumber, “The Decay of Diseregard”
The Cult, “Greatest of All Time (G.O.A.T.)”
The 69 Eyes, “Christmas In New York City”

I highly recommend The Skints album. It’s kind of a concept album: it sounds like you’re listing to a radio station in England, specifically East London. It is reggae infused with ska, toasting, dub and a little punk/pop. Their cover of Black Flag’s “My War” – a tour I saw – is worth the price of admission. You have to like reggae, though.

The Powerman 5000 tune is… alarming, it is that good. Not metal, not punk, I would call it punk n’ roll… just a goddamn catchy tune. Good luck getting that out of your head once you’ve heard it.

The same goes for Filter’s, “Nothing In My Hands,” which is about the Tamir Rice shooting. I think Filter was the only band – the only white rock band -- that had anything to say about the Ferguson riots, the Tamir Rice shooting and the Dylan Roof shooting… I know this because Richard Patrick, who is Filter, talked to Ebony about this and actually sent us the roughs of the songs he had written because he wanted Ebony to weigh in on them. Ebony loved the ruffs – she actually loved them better than the finished tracks – and gave her approval. The media went to sleep on that album, “Crazy Eyes,” but Ebony and I know for a fact that it was the best, or one of the best albums Filter ever produced. And certainly one of the best albums of 2016/2017.

Oceans of Slumber… is like Type O with a chick singer. That she’s a black chick only makes it more rad.

Meantime, if there is an authority on the best music of 2017, I would refer you to seek out Nic Franco, who is a metal maniac and keeps up with this while I fail miserably and hand on to outdated tunes.

It is officially New Year’s Day, January 1, 2018. All I want for this year is for Ebony to be comfortable and happy. With some luck, we will accomplish this effortlessly. That is my hope.

In the meantime… Happy New Year~!

... ... ... 

Christmas, 3 a.m.

Newport, Rhode Island is beautiful at Christmas. Historic homes and mansions, colonials and Victorians and traditional houses of all styles are illuminated by electric candles in the windows and decorated with lush wreaths on the front doors. Christmas trees light up the interiors and as you pass by you can see families in their element: making dinner, socializing, partying, watching television or just spending time together. The entire town is decorated and a festive energy crackles from Easton’s Beach to Newport Harbor. Every year for as long as I can remember, “Christmas In Newport” commemorates the holiday with a month-long celebration that kicks off with a tree lighting, caroling, an open-air skating rink right on the harbor and recently, a Christmas stroll through the town. Although it can be a zoo all summer long, come Thanksgiving the city of Newport becomes a Currier & Ives print without the horses.

We, of course, have not partaken of any of this. Once Ebony was spirited into the house, my Mother, now having a captive audience of three, began to regale us with gossip and local news. Once she has caught us up on the doings of the practicing alcoholics in town, Mom sounds off on various categories in her favorite game: Neurotic Self-Absorbed Jeopardy. For this visit, the categories were: Things I Saw In A Catalogue; People Who Just Died; That Guy From That TV Show; Items I Need Mark to Bring Upstairs; and Things In The House That Are Broken.

I could blow out all these categories in minutes but the truth is that in the end, I will pay for all of it.

In spite of my complaining, there is a lot of love here. Ebony has been surprisingly spry on this trip and it’s so nice to see her happy and engaged. It might have to do with the accommodations. Mom, with some help from a great friend of hers, Joanne Reynolds, was able to procure an electric hospital bed and a brand new Hoyer Lift. She ponied up for a folding wheelchair ramp and the entire experience of getting Ebony into the house and out of the chair and into bed has been on the high side of pleasant. The Hoyer Lift is key: it is similar to a cherry picker, which you would use to remove an engine from a car. The lift employs a nylon net as a cradle, which hooks to the boom (the Hoyer Lift combines auto mechanic technology with sailing nomenclature) and then raises or lowers the patient. It is produced in the United States but was clearly forged in Shangri-la. Before we used it the first time, I showed Ebony a video demonstration on YouTube so she wouldn’t be weirded-out and she took to it right away. The short time we have been here, lifts and transfers have been painless.

The hospital bed is electric, maybe not as stylish as what you would find in a hospital today -- if you can call hospital accommodations stylish -- but it is comfortable, functional and safe. My mother managed to find a way to make it a part of the den so it fits seamlessly with the rest of the furniture. It is a necessary component of home care and I am so grateful to my Mother and her friend for arranging it because it has reduced stress for both Ebony’s Mother and me by at least a third.

The thing that is galling about this is that my mother and her friend were able to arrange for the bed and lift in a week, while back in the “Greatest City in the World,” it’s coming up on four months and still no lift or bed thanks to the sloths at her insurance company and the dum-dums at the Visiting Nurse Services. I don’t know how people can take such pride in being functionless morons. After spending an afternoon “talking” to these people to no avail, I wonder what it must be like to work in an environment that appears to reward stupidity. Is there a woman from HR who comes down once a month to post photocopies of company spreadsheets around the office celebrating the complete lack of achievement? I imagine holiday parties every year at this time where the employees drink spiked egg nog and tear up the office carpet to the 70s disco while Valentina, Meredith and LaDonna gather in the conference room to gossip about Linda, their boss, who doesn’t make them do anything because the entire company is ineffectual, but is somehow still a bitch.

Our arrangement at the apartment is less than ideal but we have made it work; nevertheless, it pales in comparison to what my Mother has achieved and I really wish we could stay here. If you live in New York City long enough, eventually you will have a period where you’re just sick of all the bullshit and want to leave. I think I’m currently in that frame of mind. I imagine we could, except I would have to give up my job at ABC, give up the apartment, move and then try to find work here in Rhode Island, or return to freelancing or both. I don’t know how Ebony’s mother would fare, though. She is an incredible woman who has sacrificed so much to take care of Ebony and certainly I know I could not have done it without her. It must be awful for her, to see her daughter suffering, to have had to leave her home, her husband, her friends and family and the warmer climate of Charlotte, North Carolina for what must feel like the Arctic by comparison; and yet, she is so, so quiet and never complains. She seems to like it here, though – at least she has a room to call her own. I wish it were simple – I wish Ebony was not afflicted at all – I just want to do the right thing by her but there’s so many things to consider.

I always miss Newport, especially around the holidays but never more so than when things are stressful in New York. It’s easy to romanticize my hometown but a few days here mitigates my ire. We arrived late Friday afternoon but I was up early Saturday morning and out the door to the Post Office for some last minute mailing. I had made calendars from Amazon Prints, which feature a bunch of cool pix of Ebony that I thought her Aunts and our Moms would enjoy seeing. But I’ve been so busy and then got sidelined by the van incident, I didn’t get to the Post Office. So I’m standing in line at the Middletown branch, first thing in the morning, and the postman at the counter is utilizing a wooden staff that looks like an oversized pencil to tap commands on the computer screen. The customer at the counter asked him about it and he explained, loud enough for everyone to hear, “Well, I have arthritis and this helps reduce the pain in my wrist and fingers when I’m at work all day.” 

The customer answered, noting, “I have myasthenia gravis and now it’s in my left eye.”

The postman replied, “Oh yeah, I’m unable to move my hand some days. It just seizes up like a claw.”

“My eyelid is drooping.”

After these two are finished, I move up and mail the calendars. As I am leaving, the woman next in line moves up — she has one of those walkers with a basket — and says to the postman, Arthritis? Let me tell you about my sciatica.”

I can’t even. I keep trying but I cannot deal with this… and I worry that I am becoming like these people. I easily could have joined in, “Oh yeah? My fiancée has a malignant brain tumor. We were just starting to talk about our wedding and honeymoon plans when she was diagnosed, and now instead of going to Italy, we spend our free time going to the hospital.”

Maybe we should move up here.

... ... ...

It is three hours into the holiday and I should be sleeping but I am wide awake watching movies while Ebony sleeps the sleep of angels. I don’t have much free time anymore and whenever I have time, I try to lose myself in cinematic distraction. Early Christmas morning so far is Love, Actually and Die Hard. I have seen these movies countless times and own them in iTunes but watching on a big screen, with the Christmas tree to the side, somehow makes it more enjoyable. There is a Star Trek movie marathon coming and I may indulge in that if I am still up.

And here I am, alone and looking after Ebony and hoping I’m doing everything I should be doing. It is a thankless job but it is one I welcome and accept wholeheartedly.

She gave me the best 10 years of my life: what else can I do?

Mister Bear is missing.

For as long as I have known her and for longer still, I think as far back as her childhood, Ebony has had a teddy bear. She told me about him, perhaps concerned I might tease her, but I first became aware of him when I moved in with Ebony.

On nights when we were apart – if I was in Newport visiting Mom on one of those weekends that she was flying – she would come home and snuggle up on the couch with Mister Bear and watch television. When I returned, Mister Bear would hang out on the sofa watching over Ebony and keeping an eye on me.

Whenever she was sick, maybe with the flu or just run down and tired from work, she would take her medicine, cradle Mister Bear in her arms and go to sleep.

I have heard from her best friend, Mariska Hargitay, that Mister Bear was popular with her pit bull Q, and often ended up in the Q’s kennel being licked to death. Then Mister Bear would get the full Whirlpool treatment in the washer and dryer. He has been through so much over so many years that whatever features he was once adorned with have faded and now the best way to describe him would be “beige.”

Nevertheless, Mister Bear is a member of the family and since Ebony’s illness, has been with her almost constantly. When we tuck her in at night we make certain that Mister Bear is with her. Ebony reaches out instinctively for him and hugs him to her chest where he remains until morning.

When we traveled to Newport for Thanksgiving, Mister Bear rode with us, sat in traffic with us and hung out at my Mother’s with us. He’s been there before: when Ebony first started at jetBlue, she was being trained out of Boston and Ebony came up to stay and brought Mister Bear. So he knows Newport.

This time around, for Christmas, Mister Bear made the trip with us; and Ebony kept him close even when she was in her wheelchair. She seemed to want him near and if she wasn’t holding him, sat him next to her while we watched “Love Actually,” “Die Hard” “Donnie Brasco” and “Star Trek II: The Wrath of Khan.” Mister Bear was also present for my non-credit lecture series: Why “Die Hard” is a Christmas movie; Al Pacino should play Columbo; and the next Star Trek series should be not about a starship and crew, but about Khan and his crew from when they are first exiled until STII.

On December 27, the day we left Newport, Mister Bear was with Ebony while I was packing the car. However, my Mother put Mister Bear on the couch while she and Ebony’s Mother Sundai, put on her coat, hat and scarf. It was only when we got back to the apartment that we realized Mister Bear was still in Newport.

I called my Mother the next morning and she went to the Post Office to send Mister Bear overnight. She sent him Priority Express and told us he’d arrive by Noon on Friday. Mister Bear would be taking an unscheduled trip but certainly it would be an adventure he could share with Ebony when they’re alone.

The thing is, Ebony had her cancer treatment on Friday and we were out of the apartment all day. Naturally, we expected to come back and find Mister Bear in his new box, waiting for us. But that was not to be: the United States Post Office does not leave Priority Express packages in New York City. So we returned to a little notice advising us how to schedule a redelivery. So I did.

Today, Saturday, we waited all day for Mister Bear to arrive. I told Ebony he would be coming today and she lit up and even gave me a Billy Idol smirk.

But Mister Bear never arrived. Sundai worked for the Post Office for 30 years and told me it’s unlikely that they’ll deliver on Sunday, New Year’s Eve and that we may not see Mister Bear until Tuesday.

Ebony seemed to take this in her stride, perhaps knowing that Mister Bear was on a adventure worthy of a children’s book, but I was pissed. I feel like Liam Neeson in “Taken” and want to call the Post Office and say, “I can tell you I don't have money. But what I do have are a very particular set of skills; skills I have acquired over a very long career. Skills that make me a nightmare for people like you. If you let Mister Bear go now, that’ll be the end of it.”

I doubt anyone there would care. But if I find out Mister Bear is in Paris, I’m going.

Meantime, Ebony is sleeping peacefully and we are patiently awaiting the safe return of Mister Bear.

An Explosive Day

So, on Saturday afternoon I got hit by a van. I would have been actively engaging about it but there was no WiFi once I got into Emergency.

I was discharged from Queens General at 5 a.m. The whole ordeal was nightmarish.

Ebony’s friend Kim was in town and wanted to visit so when Kim came over, I went out to do some errands because I wanted to cook for Ebony and her mother and invited Kim to join us. I leave the apartment and I’m talking to my Mom on my cell with the hands-free headphones and crossing with the light across Queens Blvd to go to the ATM. I wanted to stop at the drug-front vegetable store and then go to the bakery and was considering a bottle of wine. It had been snowing all day and it was cold out so I was bundled up and had my hoodie up over my hat. I was telling my Mom that the morning was explosive – a lot of noise outside with garbage trucks and snowplows and the usual yelling – and that’s when I got hit. The truck hit me in the back, on my right side and I went a couple of feet forward, sort of on my right shoulder and hands forward, which helped break my fall. The earphones flew out of my ears but I didn’t hit my head. I turned and saw these two Latin guys running towards me, and more people coming from across the street. I couldn’t breathe – the impact knocked the wind out of me – but the whole time I was self-assessing: I can see, I can hear, I can think, I can feel my toes.

So I start to turn around and people start yelling at me to stay down, don’t move. I’m like, “Are you fucking kidding me? It’s freezing out and I’m laying in the middle of a wet road. Cars are now starting to just drive around me – because the Queens motto is “Go fuck yourself!” – and I don’t want to get hit again. So I tell these two black guys, who ran over to help, that I think I can stand and ask their help. So I’m standing up in the middle of Queens Boulevard just watching cars go around me and there’s like 8 people standing there with me, including the two of them who hit me. So I point to the median and we all walk over and then the cops came and then the firemen and then the EMTs. I called Ebony’s mother to tell her what happened and would call her later.

So the police get my info, they start grilling the drivers, the crowd leaves and the EMTs check me out. My knees were banged up but I could stand, everything seemed fine, except I had a little pain in my lower right back. These two EMTs were from Queens General – Maggie and I forget the guy’s name – were super nice and encouraged me to go with them but also understood when I told them what Ebony is going through and I just didn’t want to spend my one night off at the hospital. Maggie told me that I might be having an adrenaline high and if there is pain later, to go in.

So that was it. The police took a report and left, and the EMTs helped me out of the ambulance and I just got on with my errands. I called my Mom back, who of course started freaking out and badgering me to go to the hospital but I was like, “It’s fine. I only got hit by a van, Mom, it’s no big deal. I got shit to do.”

I did buy two Lottery tickets because it occurred to me that maybe this was my lucky day: after all, the van hit me but didn’t kill me. I guess we’ll see what happens. If I win millions of dollars I’m buying a three-bedroom condo in a doorman building on the UWS and getting Ebony long-term care and we will spend our days and nights together. I will cook and we will drink fine wine and watch movies on one of those 90-inch flat screens. And everyone can come over and visit and stay in the guest room.

Anyway, I get home but am moving slowly. My back is starting to bother me a little and I immediately started thinking about Stiv Bator, the singer of the Dead Boys and Lords of the New Church. He was hit by a car in Paris and walked away from the accident, not going to the hospital. He died later from internal injuries or internal bleeding. So this is on my mind when I get back.

Sundai already guessed I wouldn’t be cooking and made dinner; Kim had left and I missed her by about 5 minutes, so I decided to take a nice hot shower, change and pop some Advil, which I picked up at the pharmacy. I do this but am not feeling any relief an hour or so later and Mom calls and is driving me nuts and I tell her I’ll go in the morning. I called Chris, my boss, who is himself a caregiver and has been extremely supportive and helpful throughout Ebony’s condition in the last five months, and he covered me for Sunday night. So yay. I’ll sleep in, take it easy and see how it goes.

Except that when I went to sit down with Ebony, I had this excruciating shooting pain in my back and I finally had to admit to myself that maybe going to the hospital is a good idea. After we put Ebony to bed, I kissed her goodnight and headed out.

So I was there for hours. I had no internet but was able to text and Meg McCoy reached out to me and texted with me for I think a couple of hours, just so I wouldn’t be lonely, which considering it was Saturday night in the Emergency Department of a Queens hospital filled with crazies, it was a little lonely.

They were thorough with me, though.They took my vitals, took X-Rays and took blood, gave me a heprin lock and finally, I got a CT scan. The X-rays came back and there were no fractures; vitals and blood work were good; and the CT scan – they shoot this junk into you and you feel it move through your body, as it works its way into your system and down to your toes. It is a weird feeling. Took the scan and then waited for the results. Bottom line: nothing broken, no organs pierced or damaged, no internal bleeding, nada. Just a lot of bruising.

The doctor – his name is Dr. Shwanner and he was unbelievably awesome – came back with a note for work and scripts for Percocet and Valium. Fucking Valium! I can’t even believe they still make that. I don’t like taking pills – they offered me Percocet in Emergency, but I opted for the lower impact Tylenol. But of course I am going to take the Valium because it’s just so crazy and 70s! I’m already thinking I’ll take one and listen to Dan Fogelberg. But basically, I will have to take them because the pain is pretty intense and Dr. Shwanner said it will get worse over the next two days before it tapers off.

This guy, Shwanner, by the way: after I was finished with the CT scan, he happened to be down there – it’s like three corridors away from the Emergency Department – he wheeled me back to my spot in the ED. A DOCTOR did this. The doctors at Weill Cornell are great and great to Ebony, but, and I have seen this, would not hand you a Kleenex if your nose was running. They’d wait for a nurse’s aid to do it. This guy – I heard him talking to every patient and I was blown away.

Anyway, it seems that it’s going to take more than getting hit by a moving vehicle to keep me down. I’ll be off my feet for a couple of days, but I gotta stay strong for Ebony, and, you know: I got shit to do.

I really hope I win the Lottery, though. Fingers crossed.

Some days

Some days are good. I always hope for those days.

Some days are bad; in fact, some days are so bad, I worry that I will get home, go to sleep and get up and she will be gone.

And I will hate myself for having been away from her.

Lately, this is all I think about. Because there are more bad days than good.

Ebony can no longer communicate verbally; she cannot initiate her needs; she cannot stand without assistance; her right side, leg and arm, are impaired – lame, if you prefer – and she cannot feed herself. She is incontinent and needs to be cleaned, changed and dressed. Every day she needs to be cleaned, bathed, dressed, fed and later, put to bed. It is physically and mentally -- and emotionally – taxing. In five months her condition has deteriorated and this is where we are. Nevertheless…

All of these things are inconsequential to me: I will do whatever I have to do to make her comfortable and take care of her. Sometimes I just say it or write it because this is my battle cry. I just have to say it out loud so I can keep on keeping on. It is not easy; in fact: it is difficult. Regardless, I keep on. Ebony is here and she is surrounded by love. Her mother does what she can and we keep on keepin’ on. Ebony is here, in the apartment. There are no roommates, no one screaming in the middle of the night (well, Queens, but no one, you know, in her room) and there are no strangers peeking in and poking around if she wakes up. It’s us and just us and this is how we do. I will go down in a hail of bullets before I put her into some fucking facility.

Doesn’t make me any less frightened, just defiant.

And it doesn’t make it any easier: not for me, not for her Mother. Not for Ebony.

And yet, here we are. I promised her I would not put her into one of those places a long time ago. We never really discussed it but that is where we’re at. I have kept my promise. It is not easy, 

But I keep trying. I keep trying. I keep trying and it is overwhelming at times. Today was one of those days.

Nothing good to report, just more whining and whinging on my part.

Trying to stay strong -- for Ebony – but sometimes I fail.

Tomorrow, I try again.

What else can I do?

ETA (Edited to Add): I heard a great joke tonight -- How many Irishmen does it take to change a lightbulb?

Go fuck yourself.

Ha.

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~!