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.
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.
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.
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.
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.