Monday, November 20, 2017

Slipping the mooring


…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.