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?