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.