“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.
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.
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.
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.
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.
