Monday, November 20, 2017

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 68th 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 59th 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.

Saturday, November 11, 2017

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!





Tuesday, November 07, 2017

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. 

Friday, November 03, 2017

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.

Monday, October 30, 2017

It can't rain all the time.

While the world reels from the news of the Russia investigations, Kevin Spacey's Sunday night Twitter shocker and the Astros/Dodgers game, I don't have much to share and little time to rest before I have to get up in the morning as the OT is coming early. 
Ebony has had a couple of good days and a couple of bad days. I feel like I'm turning my Facebook page into my personal Wailing Wall, so I will try to focus on the good days, like today. She was bright today and had more energy than usual. She was even a little flirty over dinner and made eyes at me. She smirked at me when I called her on it. 
I want to thank the people who completely took me by surprise this week: thank you for your generosity and kindness to Ebony and to me. I was shocked. I laughed, I cried and we ate exceptionally well this week. And Silva, that was entirely too much and I can't thank you enough. I owe you all proper Thank You cards, I just have to remember to stop by Papyrus on the way to work this week. 
Amazingly, I'm not filled with despair right now. I guess I'm actually feeling a little upbeat and encouraged by Ebony's behavior today. Some days it's dark -- like that Kids in the Hall bit in "Brain Candy" that's clearly supposed to be Glenn Danzig -- but maybe the Gleemonex is kicking in. Who knows? Maybe it's the season. Autumn was always our favorite season, probably because we were literally brought together by Type O Negative, our favorite band. September Sun, October Rust. I've been thinking about our happier times and they all seem to involve Type O. You know, because we're both metal, but secretly goth. It can't rain all the time.

Tuesday, October 24, 2017

No rest for the wicked...

Ebony is back home. A CT scan did not reveal any trauma, so, I don't know, maybe I'm an alarmist. But what would I be if I didn't call 911 and she had a concussion or worse? Isn't it right to err on the side of caution? I'm not a doctor, I'm just a guy who yells. No regrets, we're back to working out the new normal; but there goes another day at work. I just want to go back to bed. No rest for the wicked...

On the verge of a sheer heart attack

Ebony fell. While we were waiting for the PT to arrive, I had to call her bank and went out of the room to hear them, as she was watching TV. The buzzer rang and I got off the phone and when I came into the living room, Ebony was on her feet, unsteady without the walker, and trying to make it to the hall to buzz the PT in downstairs. grabbed her and tried to steer her around to the wheelchair but she was already going. I broke her fall as I was able to get under her but she hit head on her mother’s rolling suitcase. She winced and touched her head like she was in pain then turned on her side . I was ready to call 912 and checked her and she whispered that she was fine but I let the PT in and he said I couldn’t take any chances, so of course it helped to hear, but the whole thing happened so fast all I could do was panic. Stressed out panic, not thinking. I called 911, called her mother, who was downstairs doing laundry and after the FDNY EMTs arrived, called her best friend, whom I had only just spoken with like two hours before. I don’t want to compromise her privacy but she is NYPD and a tough cookie so I will call her Mariska. Mariska went into crisis control mode on the phone, calmed me down and then had me give the phone to the EMTs and now we are at NS LIJ . I would have tried for Weill Cornell of course but as she pointed out, rush hour and maybe Ebony is not seriously injured but this place is closer and they can always order a transport to Weill Cornell if needed. So that was really helpful. Rode in a ambulance, again, and she held my hand the whole way. I would squeeze it and she would squeeze back. So far they have admitted her and she has a room, but we are waiting for a doctor. Maybe it’s a sign that they don’t think it’s serious — and that would be great — but I don’t want to take any chances. They will have to check her for head trauma. 
She looks peaceful right now, sleeping.
I’m going to have a heart attack before the week is out.

Monday, October 23, 2017

Time is such a precious commodity. If it were tangible, it would be traded on Wall Street. We are obsessed with it though I think we only regard it when there is little of it. In literature and film, from H.G. Wells to Michael J. Fox and Jean-Claude Van Damme, we are entertained by it. If we could travel within it, slow it down or stop it, the things we could accomplish could improve the world, help mankind and help each other. We could spend more time with our loved ones and cherish them for our own indulgence. Immortality, an abstract of time not ending, fascinates me. Not the immortality of vampires, necessarily; but having the gift of being able to bare witness as the events of the world unfold would be outstanding. More, to spend eternity with someone whom you hold dear, would be sublime.

I never have enough time to get everything done, it seems. Always behind the eight ball, as it were. I need time to sleep, time to spend with Ebony and time to work. This is a universal facet of being. We have had two very good days, Friday and Saturday. Friday afternoon, the occupational therapist visited to conduct her evaluation of Ebony and was immensely helpful in showing Ebony, and her mother and I, ways to make progress with her recovery, and that has made a big difference in a short period of time. If only she’d been able to visit sooner.

In the week and a half she’s been home, I’ve pushed myself as hard as I can to take care of Ebony. I’ve had to change my behavior, things I used to do, like skipping breakfast in favor of coffee, can’t happen because she can’t make breakfast for herself. So every day, I make breakfast for the three of us. Lunch, too. I try to keep her engaged as much as possible. I am also careful not to overwhelm her: too much stimulation can be a distraction and cause her to lose focus. Currently, I’m trying to get in the habit of having dinner ready by 5 so I can clean up and get her ready for bed before I leave for work, so her mother doesn’t have to do very much after I leave. This, we have learned, because Ebony doesn’t want her mother helping her, not too much. Also, her mother isn’t really cut out for all of this. There’s only so much she can do and that excludes lifting Ebony. So if I have her up early and ready for bed by 7, she might stay up for a little while, but will soon be asleep and remain that way until morning and her mother isn’t challenged.

I have gotten pretty good at the bathroom stuff. This is a private matter for anyone, and I spent my entire life in blissful denial that females use a bathroom for anything more than bathing, the application of makeup and perfume and occasional urination. My delightful delusion is that when a woman walks into a bathroom, it is transformed into the bath scene from “Cleopatra,” and she, like Elizabeth Taylor, is gently attended by handmaidens and emerges radiant and beautiful and ready to consort with Marc Antony.

I have never had to change a diaper before. I’m an only child, third in line of three only children on my mother’s side, and a child of divorce. Never had siblings or cousins, nobody was bringing the new baby around on Thanksgiving and Christmas and, since I never had kids, never faced this vexing enigma. I’ve heard stories, of course, but they are as foreign to me as tales of war.

Ebony’s tumor has caused her to be incontinent. I was hoping this might be temporary but it’s clear that it is going to be a part of our lives. The tumor has attacked the part of her brain that controls the instinct to relieve oneself, and, much like Tommy Lee in the “Behind the Music” episode featuring Motley Crue, Ebony’s excretory system is now reflexive and shrugs and says, “Why get up?”

So diapers are changed, in the morning, afternoon and early evening. I clean her up and have developed a system that we are both comfortable with. This goes for the more serious aspects as well. It is not something I ever imagined having to face, but I have found a way to service her needs that allows her to maintain her dignity. We have, over the course of several days, developed a shorthand about it and are able to manage without incident. I have also confronted my worst fears and surprised myself in doing so: I can handle this.

What I cannot handle is my work/sleep schedule. I work nights, Sunday through Thursday and leave at 6:30 and am often not home until 3 or 4 in the morning. Then, ideally, I have to be up at 9 to get Ebony up, cleaned up and dressed and start breakfast. I haven’t been able to do this successfully on a daily basis. I am used to my work hours but I’m also used to sleeping into the afternoon. It’s difficult to go to sleep right away and worse to get up. Saturday, after a week or so of pushing myself like this, I slept in.

I had ordered Chinese food and after dinner, Ebony and I watched the Islanders game, and after that I put her to bed. I retired to watch a screener of the latest Tom Cruise movie that I’d not had a chance to view since everything went haywire. I was up late and slept way past the alarm on Sunday, so I didn’t get up until 2 in the afternoon. When I rose, I was sort of thinking, “Well, her mother can handle it. I usually do everything, it’s time to let her help.” It didn’t quite go like that.

Ebony was awake and sitting up but would not get up or let her mother help her. Her mother hadn’t been able to get her up, so she didn’t make breakfast or lunch. She gave Ebony some fruit but that was it. So, I made a cup of coffee and started our morning ritual. Got her into the bathroom, did all of that stuff, got her into the shower, and then toweled her off and got her dressed. She walked, with her walker, to the wheelchair and watched Rick Steves while I started dinner. Well, I reheated the leftover but I made a salad and set the table. We all sat down and next thing I know it’s past six and I have to get ready for work.

So Ebony was still eating when I had to leave and her mother said she would be fine. So I went to work thinking that we had a great couple of days and was encouraged by that. We have the speech therapist and physical therapist coming Monday and the OT is back on Tuesday, so I think this is all very helpful and I can resume concentrating on the serious things, like money, having Ebony grant me power of attorney so I can access her records so I can get her Social Security sorted out and get a nurse in here at night so Ebony’s mother can go home.

It was about 1:15 a.m. when Ebony’s mother called. It seems she let Ebony stay up watching television and then around 11:30 Ebony said she had to go to the bathroom. So her mother got her in but then she wouldn’t leave. So I tell her to give the phone to Ebony and I try to talk her into getting up and she agrees and then I tell her mother about my process for taking care of her and say I’ll get a cab and be home as soon as possible. I had finished up my responsibilities early anyway, so my editor let me split. Jumped in a cab and after we got off the 59th Street Bridge, her mother called to say she won’t get up. I tell her not to leave her in case she falls and actually made it home in about 25 minutes. Cost me $47, but if I had taken the train, I would not have been home until 4 a.m. because the MTA is a disaster.

I got in and Ebony was still in the bathroom, on the toilet and falling asleep. I kissed her and took over from her mother, who was standing by making sure she didn’t fall off and hurt herself. She has fallen twice in her mother’s care, when we first got her home; but mostly I’ve been taking care of her, so this hasn’t happened again. But Ebony was having trouble keeping her eyes open and I gently coaxed her into waking up and cooperating with me so I could perform our ritual and after that, dressed her and got her to bed. She went right out.

My relief over this should be followed by a nice big glass of red wine and a long exhale but I’m frazzled because I was in high anxiety mode, like Ray Liotta for the last twenty minutes of “Goodfellas.” I’m stressed about leaving Ebony and the time it takes get home on the subway and the money it costs to get home in a taxi. I don’t have enough time off to spend with Ebony and live so far from work that my commute is either taking time away or costing me a fortune.

People have been asking how they can help. Good people, close friends and electronic acquaintances have suggested I start a crowd-funding page but there’s a part of me that feels like that’s panhandling and I’m ashamed for considering it. All I really need is for ABC to offer me a substantial salary with normal hours and weekends off, and a two-bedroom condo in a doorman building in Midtown or the UWS. That’s not too much, is it? I always wanted us to be one of those couples who have Sundays off and go to the little Italian bistro on Sundays for an early dinner, then go back to the apartment and finish reading The New Yorker. I need to make that happen. I’ve been looking at jobs online. I love my job but taking care of Ebony is a full-time job, so it’s like I’m already working two jobs. I never unsubscribed from Indeed after I got hired at ABC, and I’m not even sure if there’s anything out there but I keep looking just in case. I don’t have a lot of time to devote to looking, though, and the vicious circle continues.

Right now I just want to spend more time with Ebony and there’s still so much left to do.

This is the only time I have to myself, this sort of writing-as-therapy and I should be in trying to sleep, but I can’t.

There’s just not enough time in the day.



Thursday, October 19, 2017

-- American Healthcare and how to kinda cope when you’re dealing with hospital nonsense (but not really) --

I think at this point, if you’re not interested, just assume you’re going to think, “TL;DR” and move on. This is for the sexy people. …and move on, because I got something to say… (“Misfits ref… Blammo!”)

So…

I haven’t done laundry in two weeks. I am walking advertisement for Febreze.

Mercifully, like Anthony Bourdain, I have enough pairs of jeans and black tee shirts that I can rotate them so that, thanks to the fine technicians at Procter & Gamble, I don’t smell like I’ve spent my nights sleeping on the steps of some once-glorious church in semi-decline with a dwindling congregation. For a while I was using Obsession as my high-end Febreze, my cologne of choice since 1988; but I’ve run out of that and my Obsession-alternate, Givenchy PI, which is like Obsession if Calvin Klein loved cake, is still too expensive, and anyway, I’ve run out of that. With everything going on, I can’t afford to be frivolously spending money on cologne. The price of one bottle is three nights of pizza for Ebony, or my phone bill.

I had an idea, maybe not original -- maybe I saw Heloise on Donahue back in the 70s when I was a kid and it registered -- but I picked up a small empty spray bottle from the travel aisle of CVS and filled it with Brut, which I feel is not an excessive purchase. Brut’s okay. But atomized is, “actually not bad,” as my friend Alan might say. But at least when I go out I don’t stink to high heaven. At least when I go out, I smell like sweet soap.

The last two days were wrought with frustration. Ebony was in pain when she got up Tuesday and we ended up taking her to the hospital. Had to call 911 and we rode in an ambulance to Weill Cornell, Ebony, her mother and I. They were pretty cool, the paramedics, Bobby and Gina. I said, “Like the Bon Jovi song?” and they got it, though Bobby rightfully corrected me and said, “It’s Tommy.”

Shame on me. As if I don’t have enough to deal with, I am corrected about my 80s hair metal by a kid who grew up with *NSYNC as his Led Zeppelin. Jesus.

Spent ten hours at the hospital in the Emergency Department. Same place I spent two nights with Ebony before they admitted her for what turned out to be 5 weeks. She had pain in her side, lower right rib cage. But in her condition, she couldn’t articulate what was causing her pain. So her doctor’s assistant said “get her in.” I did and they ran all the tests: X-Rays, sonogram… they found nothing but took blood to send out. This is where it got insanely frustrating.

I’m very thorough about communicating with the doctors, nurses and aides. When we got in, just before 2 in the afternoon, the attending resident – cool guy, closely shaved hair, black-ish dude, maybe East Indian -- with bushy eyebrows -- was on top of everything.

“We’re going to do some imaging. Xrays and a sonogram, to make sure there’s no breakage in her ribs and no organ failure, check her gall bladder and stomach. And then we’ll take it from there. Can I get you anything?”

None of us had eaten all day and Ebony hadn’t taken her meds, which include anti-seizure pills and steroids. “They’re serving dinner right now, I’ll see if I can’t get a tray in here for her.”

So… cool.

By 6 she’d had the Xrays and sonogram. They waited on the results so “the team could assess her.” Then gave her some meds. That was before shift change, which is at 7.

Talk about night and day… I said, “TALK ABOUT NIGHT AND DAY! AMIRITE LADIES?”

Cool resident with bushy eyebrows split and was replaced by annoying Preppie, plaid shirt, pleated khakis (because he’s 5’10”ish and lanky and so he can pull it off), nice shoes – Burgundy lace ups – and ZERO COMMUNICATION SKILLS.

“So… hey. How are you? We’re waiting on the results of her imaging, just wanted to check in, say Hello. You know. Someone will be around to draw blood.”

“The other doctor mentioned…”

“He’s a resident. He left. We’re all part of the team.”

“Oh. Okay. Well, he said he was going get her some dinner. She hasn’t eaten all day and also needs her meds. Kepra and Dexamethazone, I think. The steroids.”

“I’ll look into that.”

So it’s Ebony on a crash cart (bed) in a double room with some poor Asian woman who was just OUT and looked mangled like a pretzel in her bed. No family there. Sundai (Ebony’s mother) and I were there with all the entertaining sounds of an Emergency Department after dark.

So we wait. And wait. And wait. And wait. It’s coming up on 9 and I go out to find Preppie Resident.

“Hi, I just wanted to check in and see if there was any news.”

“Yes. Her imaging came back and she hasn’t broken anything and there’s no organ damage or anything to worry about. It’s probably muscular-skeletal and she might have pulled something and is sore.”

Well, she’s been home and I’ve been lifting her up and down from the couch to the chair to the toilet to wherever. I’ve been doing it the way the PT showed me but in her condition, that made sense. I felt badly about that, but I’m so careful with her and talk her through every lift assist so I’m not hurting her… but there’s no way to guarantee that. Also, at 5’11” and whatever pounds, I have been seriously regretting not having gone to a gym all my life.

“So where are we at now?”

“Well, we’re waiting for the results of her blood work. That should be another 30 or 40 minutes.”

So I go back. An hour later, nothing from Preppie Resident and then a nurse comes in…

Now in the meantime, Ebony has slipped down on the bed. I tried to get her up but she’s in pain and doesn’t want to move. I’ve asked two passing RNs if they can help but everyone is busy. I stopped another nurse who had seen her earlier.

“I’ll need another nurse, give me five minutes.”

So, of course nothing happens and no one comes by and half an hour later another nurse comes in, and I ask and get lip service and then another and so on and so on… and now I am starting to unravel. And then yet another RN comes in.

“Are you here to help her? I can help, I just need another hand…”

“I’m here to take her blood.”

“Well, can we get her up first? I hate to see her like this and she’s uncomfortable. Her head is on her chest, she needs to sit up and I need help.”

“I’m sorry sir, I have to take her blood.”

“Well, okay, but they took her blood and they’re waiting on results. Can’t we just get her up first?”

She ignores me, leans in and starts with the Heparin lock on Ebony’s arm.

“Hey! WHAT THE FUCK?”

So, yeah. I lost it. I know that startled her because she backed away and said, “SIR…”

“ARE YOU TELLING ME THAT AS A CAREGIVER YOU CAN’T SEE THAT SHE’S IN A TERRIBLE POSTION? AND YOU’RE UNWILLING TO HELP? I’VE ASKED THREE NURSES NOW TO HELP AND IT’S BEEN HOURS. WHAT THE FUCK IS GOING ON HERE?”

“SIR. I AM GOING TO HAVE TO ASK YOU TO CALM DOWN. I HAVE TO TAKE HER BLOOD.”

“WHY? THEY TOOK HER BLOOD AND ARE WAITING FOR THE REST RESULTS. YOU’RE A BUNCH OF FUCKING VAMPIRES. SHE NEEDS TO BE HELPED UP.”

“SIR…”

“THIS IS WHAT WEILL CORNELL HOSPITAL CALLS HEALTH CARE? DO I HAVE TO BRING MY FUCKING LAWYER DOWN HERE TO SEE THIS?”

I don’t really have a lawyer. I have a couple of friends who are lawyers. My father was a lawyer. I watch a lot of “Law & Order.” Like, seriously, I love that show and will watch it over and over… but I was really frustrated.

“SIR… Sir. I have to take her blood and then we’ll get her up.”

This makes no sense at all.

“Why do you have to take her blood?”

“They told me to take her blood.”

“Why? They took her blood. They’re waiting on results, so why more blood?”

“I don’t know, sir. They didn’t tell me. Let me take her blood and I’ll come back and we’ll get her up.”

There it is. No communication, no nothing. This is your Healthcare, America.

She takes 3 vials of blood and leaves. I’m so pissed as she’s walking out I say, emphatically, “THEY WOULDN’T DO THIS IN FINLAND!”

I don’t know exactly what I meant by that when I said it, but I have been to Finland and I love it there and I know they have national healthcare. Also, they love metal there. National healthcare and they love metal. Why are we not in Finland? Sweden and Norway, too, but like I said, I’ve been to Finland. So I said that. I was just pissed but I kept thinking, “This wouldn’t happen in Helsinki.”

So now Sundai is looking at me with concern and Ebony still hasn’t been taken care of and they already sent out for blood and we have been there since 2 p.m. and it’s like 10 now and I’ve seen three or four episodes of “Fixer Upper” while we’ve been hanging around and I am fucking losing my mind.

I go see Preppie Resident and I just went off. Not pretty and not my finest hour and I wish I’d handled it differently but this just defied logic.

In the past couple of years since Ebony has been living with a malignant brain tumor and coping with treatment, and I have been working nights at ABC, I have been watching an inordinate amount of “The Sopranos” and “Law & Order” reruns when I get home from work – usually around 3 or 4 in the morning depending on the terrible subway service (F Train blues). I guess I just want to see some justice and I don’t care if it’s righteous or outside the law. My vernacular has changed a lot. I swear too much, like some low-rent goombah, and I’m sarcastic as Hell and pseudo-sanctimonious, like Lenny Briscoe or Mike Logan. Doesn’t make for strong real-world communication, but at least I’m communicating my frustration and outrage. Like Chris Matthews about anything that isn’t JFK. Just pissed like any Irish American hothead who is watching his loved one suffer. I need to work on my rage. I know, I know.  

“WHAT THE FUCK ARE YOU IDIOTS DOING OUT HERE? YOU FUCKING TOOK HER BLOOD AND YOU’RE TAKING MORE BLOOD AND YOU CAN’T WALK TWENTY PACES TO TELL ME WHY? WHAT THE FUCK? IS THIS A FUCKING MED SCHOOL OR CLOWN SCHOOL?”

Yeah, that didn’t go so well.

Anytime they say, “Sir…” I get pissed but I know they’re following some kind of legal protocol where they have to be firm but want to calm down the itinerant jerk.

“We needed to take more blood because the lab isn’t getting a sound reading.”

So now I walk over to Preppie at his workstation, staring at him looking at his computer.

“Hey! You can’t fucking tell me that, that she’s not getting a sound reading? Look, dude. I think you’re all stellar and I know you’re up against it and busy and whatever… but for all of your admirable qualities, you fucking SUCK at communicating. And she needs a bed assist and we haven’t gotten any help. And PS: where are her fucking meds and where is her fucking meal? She hasn’t taken her meds and she hasn’t eaten all day. Are you planning on starving your patients? WE HAVE BEEN HERE SINCE FUCKING TWO IN THE AFTERNOON!”

Then Burgundy lace-ups Preppie Resident got Medieval on my ass.

“Sir… we’re understaffed tonight. I am supposed to have an RN for every three or four patients and I have one-to-seven right now. I have three trauma cases I can’t get beds for and your wife at least has a room – and she’s not bleeding from her eyes.”

Here, he pointed to a woman, about sixty, with some kind of medical mask on her face, with blood clearly flowing from… I don’t know. I guess her eyes.

“You’re not the only one here concerned about a loved one.”

I just looked at him, exasperated with the whole system. “Dude, you can walk over and tell me. I’m not a doctor, I’m not medically trained, but I’m pretty sure communication is part of your training. And if it’s not, you got screwed out of an education. You can talk to me. I’m into that.”

He jus shrugged. “I’m sorry. There’s just a lot going on…”

At this point I’ve already had to call out of work. I work at ABC, in radio. I’m a writer/producer for radio and, with my colleagues, create digital content for our affiliates in North America and around the world. I am not curing cancer, but neither are these bozos and I’m losing income when I’m not at work. I’m so fucking lucky to have the job at all and luckier still that I have such understanding bosses, but we are big on communication and it is utterly baffling to me that the best and the brightest in medicine can’t take the time -- a moment -- to confer with the patients or their family/loved ones.

So I’m like ten kinds of pissed and I could have handled it better. I am a terrible, terrible person who loves a pure, beautiful woman and wants the best for her. I’m not any different from anyone anywhere in that regard. But has Led Zepplin taught us nothing? Even RATT knows the pitfalls of healthcare (yes, I am referencing “Lack of Communication” and you who judge this can fuck off right now. It’s a good song).

The upshot of all this rigmarole was that Ebony had pulled a muscle. She was discharged at midnight. They never explained why they needed additional blood and they never treated her pulled muscle. “Just give her a couple of Tylenol and she’ll be fine.”

Tylenol.

We were there ten hours and then had a 40 minute, $55 cab ride home. For fucking Tylenol.

And that was just a Tuesday. Man, I really, seriously want to move to Finland.


So… now Wednesday comes and we have to be back at 3:30 for an MRI that was already scheduled weeks ago. Another $55 ride, a Lyft into the City and then another $55 back to Queens. Ebony was so physically exhausted, I promised her pizza (she loves pizza) if she would try her hardest and stay awake and stand up when I lifted her from the chair to the car, from the car to the chair, from the chair to the crash bed for the MRI, from the crash bed into the chair and back into a car and then out into the chair and back into the apartment and then out of the chair on to the couch… well, I for that, I would get her pizza. I mean, what am I, a schmuck on wheels? So I ordered pizza, from the good place in our neighborhood, where there’s like, a yelling Italian guy manning the ovens.

Pizza came and I didn’t have any. I got everything sorted out and kissed Ebony goodnight and left for the subway to work.

The subways suck right now. SUCK. SUCK. SUCK.
I think they always sucked, but man, do they suck ass lately.

I get into the City after 45 minutes and I walk around and I’m just this crying mess because this is A FUCKING LOT to take. But I don’t care if I’m crying because I need to release and it’s New York and no one fucking cares and most people are looking at their phones anyway; and anyone who does look just pisses me off and I start to feel that Taxi Driver vibe and then I’m just pissed and scowling and they pass and it’s like no big deal that I’m walking along Central Park South and then CPW with my nose running like I just got out of the pool after inhaling by accident.

This is a pretty regular occurrence now. I deal with shit and then I hold it in because I’m trying to be strong for Ebony and when I cry in front of her, her eyes tell me she knows and feels it. She wipes my tears away like she’s swatting flies and can’t understand why I’m a mess… but I think she knows it’s because of her situation, even if she doesn’t say so.

So I cry. What the fuck is it to ya, anyway? I cry a fucking lot lately. Fuck you if you have a problem with it.

Sometimes I’ll step into the Chase on Broadway because I can be alone there. There’s a couple of places like that. I could write a list for Buzzfeed or New York Magazine: “The 10 Best Places to Cry in Public in New York City When Your Life is Falling Apart.”

Here it is (so far):
1. Chase Bank, Broadway & 61st.
2. Under the scaffolding by the Steinway building, south side of West 58th between 6th and 7th
3. CPW btwn Columbus Circle and West 66th, West side of the street while everyone – fucking tourists -- is looking at stupid Trump International Hotel or Central Park, or that building where Madonna lives but is never home.

I can’t remember the others right now.

I would try to complete the list but I’m still addled from the subway ride home. It only took me 90 minutes.

I blame the MTA for a lot, but I think this Joe Lhota and Governor Cuomo are responsible for a lot of it. It’s easy to blame them: they are the public faces of why nothing is fixed. But a few weeks ago, I contacted the Governor’s office and suggested he send flowers to Ebony for her ongoing inconvenience. He did not. Make of that what you will. We will be on our way soon enough.

All I want to do is get home so I can get a decent night’s sleep before I have to get up and start my day taking care of the woman I love. I guess that’s asking too much these days. The MTA has been “fixing” the Queens E and F lines for what seems like the entire 6/7 years I have been here. It’s the icing on a shit cake that I have been served but I cannot fathom what they are doing and when they are going to be finished doing whatever they’re doing because they don’t communicate anything to the public beyond press ops. I blame both of these guys and the entire MTA for the cost of my time going to WC/NYP over the last 3 months. Not that either of them or anyone from the MTA or NY State Gov will help. Morons.

Cue “Lack of Communication” by RATT.

Today I am going to try to sleep in a little bit. But I have to get up and do laundry, call Social Security back and see about getting some home care for Ebony, and then I have to call MET LIFE about her financial benefits, which they have “partially” denied. Called the contact on Tuesday and then again on Wednesday and she hasn’t called me back. In the meantime, I have to wait and I think I am slowly losing my mind with this beaurocratic horseshit.

But I can’t afford to lose my mind, unless I can find a way to monetize it. Also, I have to take care of the woman I love so dearly.

There’s got to be a way, no?

I refuse to come undone no matter how much I bitch. Sometimes, the bitching is therapeutic. I just need to vent my spleen and then everything will be all right and Ebony will be right as rain and then my only concern will be if I have clean towels.

Right now… I don’t. But I’m working on it. I just need a little… communication.

Don’t we all?


Tuesday, October 17, 2017

Secret Oktober: FB posts I haven't posted

“You are now leaving the City of Dreams”

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

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

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



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


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