So, on Saturday afternoon I got hit by a van. I would have been actively
engaging about it but there was no WiFi once I got into Emergency.
I was discharged from Queens General at 5 a.m. The whole
ordeal was nightmarish.
Ebony’s friend Kim was in town and wanted to visit so when
Kim came over, I went out to do some errands because I wanted to cook for Ebony
and her mother and invited Kim to join us. I leave the apartment and I’m
talking to my Mom on my cell with the hands-free headphones and crossing with
the light across Queens Blvd to go to the ATM. I wanted to stop at the
drug-front vegetable store and then go to the bakery and was considering a
bottle of wine. It had been snowing all day and it was cold out so I was
bundled up and had my hoodie up over my hat. I was telling my Mom that the
morning was explosive – a lot of noise outside with garbage trucks and
snowplows and the usual yelling – and that’s when I got hit. The truck hit me
in the back, on my right side and I went a couple of feet forward, sort of on
my right shoulder and hands forward, which helped break my fall. The earphones
flew out of my ears but I didn’t hit my head. I turned and saw these two Latin guys
running towards me, and more people coming from across the street. I couldn’t
breathe – the impact knocked the wind out of me – but the whole time I was
self-assessing: I can see, I can hear, I can think, I can feel my toes.
So I start to turn around and people start yelling at me to stay down, don’t
move. I’m like, “Are you fucking kidding me? It’s freezing out and I’m laying
in the middle of a wet road. Cars are now starting to just drive around me –
because the Queens motto is “Go fuck yourself!” – and I don’t want to get hit
again. So I tell these two black guys, who ran over to help, that I think I can
stand and ask their help. So I’m standing up in the middle of Queens Boulevard just
watching cars go around me and there’s like 8 people standing there with me,
including the two of them who hit me. So I point to the median and we all walk
over and then the cops came and then the firemen and then the EMTs. I called
Ebony’s mother to tell her what happened and would call her later.
So the police get my info, they start grilling the drivers,
the crowd leaves and the EMTs check me out. My knees were banged up but I could
stand, everything seemed fine, except I had a little pain in my lower right
back. These two EMTs were from Queens General – Maggie and I forget the guy’s
name – were super nice and encouraged me to go with them but also understood
when I told them what Ebony is going through and I just didn’t want to spend my
one night off at the hospital. Maggie told me that I might be having an
adrenaline high and if there is pain later, to go in.
So that was it. The police took a report and left, and the
EMTs helped me out of the ambulance and I just got on with my errands. I called
my Mom back, who of course started freaking out and badgering me to go to the
hospital but I was like, “It’s fine. I only got hit by a van, Mom, it’s no big
deal. I got shit to do.”
I did buy two Lottery tickets because it occurred to me that
maybe this was my lucky day: after all, the van hit me but didn’t kill me. I
guess we’ll see what happens. If I win millions of dollars I’m buying a
three-bedroom condo in a doorman building on the UWS and getting Ebony
long-term care and we will spend our days and nights together. I will cook and
we will drink fine wine and watch movies on one of those 90-inch flat screens.
And everyone can come over and visit and stay in the guest room.
Anyway, I get home but am moving slowly. My back is starting
to bother me a little and I immediately started thinking about Stiv Bator, the
singer of the Dead Boys and Lords of the New Church. He was hit by a car in
Paris and walked away from the accident, not going to the hospital. He died
later from internal injuries or internal bleeding. So this is on my mind when I
Sundai already guessed I wouldn’t be cooking and made
dinner; Kim had left and I missed her by about 5 minutes, so I decided to take
a nice hot shower, change and pop some Advil, which I picked up at the pharmacy.
I do this but am not feeling any relief an hour or so later and Mom calls and
is driving me nuts and I tell her I’ll go in the morning. I called my Chris, my
boss, who is himself a caregiver and has been extremely supportive and helpful
throughout Ebony’s condition in the last five months, and he covered me for
Sunday night. So yay. I’ll sleep in, take it easy and see how it goes.
Except that when I went to sit down with Ebony, I had this
excruciating shooting pain in my back and I finally had to admit to myself that
maybe going to the hospital is a good idea. After we put Ebony to bed, I kissed
her goodnight and headed out.
So I was there for hours. I had no internet but was able to
text and Meg McCoy reached out to me and texted with me for I think a couple of
hours, just so I wouldn’t be lonely, which considering it was Saturday night in
the Emergency Department of a Queens hospital filled with crazies, it was a
They were thorough with me, though.They took my vitals, took
X-Rays and took blood, gave me a heprin lock and finally, I got a CT scan. The
X-rays came back and there were no fractures; vitals and blood work were good;
and the CT scan – they shoot this junk into you and you feel it move through
your body, as it works its way into your system and down to your toes. It is a
weird feeling. Took the scan and then waited for the results. Bottom line: nothing
broken, no organs pierced or damaged, no internal bleeding, nada. Just a lot of
The doctor – his name is Dr. Shwanner and he was
unbelievably awesome – came back with a note for work and scripts for Percocet
and Valium. Fucking Valium! I can’t even believe they still make that. I don’t
like taking pills – they offered me Percocet in Emergency, but I opted for the
lower impact Tylenol. But of course I am going to take the Valium because it’s
just so crazy and 70s! I’m already thinking I’ll take one and listen to Dan
Fogelberg. But basically, I will have to take them because the pain is pretty
intense and Dr. Shwanner said it will get worse over the next two days before
it tapers off.
This guy, Shwanner, by the way: after I was finished with the
CT scan, he happened to be down there – it’s like three corridors away from the
Emergency Department – he wheeled me back to my spot in the ED. A DOCTOR did
this. The doctors at Weill Cornell are great and great to Ebony, but, and I
have seen this, would not hand you a Kleenex if your nose was running. They’d
wait for a nurse’s aid to do it. This guy – I heard him talking to every
patient and I was blown away.
Anyway, it seems that it’s going to take more than getting
hit by a moving vehicle to keep me down. I’ll be off my feet for a couple of
days, but I gotta stay strong for Ebony, and, you know: I got shit to do.
I really hope I win the Lottery, though. Fingers crossed.
Some days are bad; in fact, some days are so bad, I worry
that I will get home, go to sleep and get up and she will be gone.
And I will hate myself for having been away from her.
Lately, this is all I think about. Because there are more
bad days than good.
Ebony can no longer communicate verbally; she cannot
initiate her needs; she cannot stand without assistance; her right side, leg
and arm, are impaired – lame, if you prefer – and she cannot feed herself. She
is incontinent and needs to be cleaned, changed and dressed. Every day she
needs to be cleaned, bathed, dressed, fed and later, put to bed. It is
physically and mentally -- and emotionally – taxing. In five months her
condition has deteriorated and this is where we are. Nevertheless…
All of these things are inconsequential to me: I will do whatever
I have to do to make her comfortable and take care of her. Sometimes I just say
it or write it because this is my battle cry. I just have to say it out loud so
I can keep on keeping on. It is not easy; in fact: it is difficult. Regardless,
I keep on. Ebony is here and she is surrounded by love. Her mother does what she can and we keep on keepin’ on. Ebony is here, in the apartment. There are no roommates, no
one screaming in the middle of the night (well, Queens, but no one, you know,
in her room) and there are no strangers peeking in and poking around if she
wakes up. It’s us and just us and this is how we do. I will go down in a hail
of bullets before I put her into some fucking facility.
Doesn’t make me any less frightened, just defiant.
And it doesn’t make it any easier: not for me, not for her
Mother. Not for Ebony.
And yet, here we are. I promised her I would not put her
into one of those places a long time ago. We never really discussed it but that
is where we’re at. I have kept my promise. It is not easy,
But I keep trying. I keep trying. I keep trying and it is
overwhelming at times. Today was one of those days.
Nothing good to report, just more whining and whinging on my
Trying to stay strong -- for Ebony – but sometimes I fail.
Tomorrow, I try again.
What else can I do?
ETA (Edited to Add): I heard a great joke tonight -- How many Irishmen does it take to change a lightbulb?
Red lights sparkled like rubies in the asphalt as the cars lined up into
We slithered along the Northeast corridor of I-95 like a stertorous snake. At 4
MPH, this is how Connecticut makes a sane man lose his mind. There is no rhyme
or reason, there is only traffic. You sit in traffic long enough and you become
friends with the pain of true torture. Terrorists know nothing about inflicting
pain compared to the State of Connecticut. Hours go by and you move up then
stop, wait, move up, stop, wait, wait, wait some more, then move up and repeat.
There is no end in sight, no way out.
You begin to imagine the cause of the problem: an accident
so mammoth it involves multiple vehicles. This is the 18-car pileup you have
heard about. Utter carnage: twisted metal fragments, scorched chrome and
shattered glass strewn across the highway as bodies are being tagged and bagged
and the death toll rises with each subsequent news report.
As long as you have been sitting in traffic, you expect
this: you want this. In fact, you are craving it and like a vampire, your
thirst for blood becomes unquenchable as your mind wanders. You get jittery in
the driver’s seat. Maybe someone was decapitated, you think, and you wonder if
you will see the head before it is cleared away. You want to see the head -- on
the road, a face scowling in agony and unrecognizable to family members -- the headless
body, half in and half out of a broken windscreen -- and no amount of Christmas
music will soften your resolve. There must be a staggering amount of blood
splattered across the road like a first-year art student trying to emulate
Jackson Pollock. The feeling overtakes you as you shift uncomfortably in your
seat and crack your neck. It is overpowering and you want to scream, “THERE
BETTER BE FUCKING BLOOD ALL OVER THE ROAD!”
But there won’t be any blood; no body count, no mangled
hulks of Detroit’s finest, not a single shard of glass: nothing. You will
realize this as you pass signs for a Construction Zone that requires a lane
shift and lasts about a minute before the Zone ends. And then the cars and
trucks will speed up and reach maximum warp and you will scream and yell and
bitch about the hours you just spent hopelessly crawling. You will curse the
Heavens and no one will hear you: the only sound to be heard will be the sound
of Connecticut, its population and government collectively laughing at you.
There is no going home without suffering.
This is how we returned to Queens on Saturday.
Thanksgiving was a success, if by success, you understand it
to mean “without significant event.” Ebony’s mother made collard greens and,
oddly, they mixed nicely with our traditional Thanksgiving fare of turkey,
stuffing, mashed potatoes, carrots, salad, gravy and dinner rolls. Oh, and
wine. There was wine. I bought two bottles of Travaglini Gattinara and one
bottle of Ca Montini pinot grigio. Ebony’s mother had two glasses of it and
truly seemed to enjoy it. I told her that the Ca Montini has zero finish and that’s
usually the best selling point about the wine, because it’s true. It is a
light, refreshing wine that leaves no aftertaste or fragrance in your nose. The
Travaglini was for me: a Northern Italian red which pairs well with anything
from veal to potato chips, and provided you like warm Italian reds, you would
love it. But I digress.
Ebony was in fine spirits while we were in Newport, but
still needed the usual care. I spent the first part of our dinner standing next
to her, feeding her from a plate we’d made for her. She liked the collards, and
the mashed potatoes (my forte) and turkey. I offered her a sip of wine, but she
waved her hand. Uncharacteristic of my beautiful darling, but I suspect she did
not want to drink in front of her mother, which seems incongruous as Sun was
having wine: nevertheless, I didn’t push it.
The epic first-time meeting of mothers went swimmingly and that was no
surprise: Ebony’s mother is quiet, doesn’t talk much, and my mother never shuts
up. And Mom didn’t embarrass me, either, as she can be socially awkward with
her persnickety opinions and stubborn attitude and clumsy manner. When she
first met Ebony, in her earnestness to make a connection, she told Ebony about
every black person she’d ever known since the day she was born until that
afternoon. Ebony just smiled. She knew. There’s nothing racist about my Mom,
but she can be clumsy: she did tell Sundai about something she’d seen on
television with Al Sharpton, and about something he said that she thought was
poignant. She called him “Reverend Al” and got so animated telling the story
that at times I thought she was about to sing “Go Tell It on the Mountain.”
Sundai was cool, though and didn’t say anything and I just blanched and kinda
skulked out of the room for a bit. Mom forgets that Ebony can’t stand Al
Sharpton and does not call him “Reverend” and used to make fun of him – the way
many New Yorkers did – for his inscrutable 80s attire circa the Tawana Brawley
incident. Good, bad or otherwise, I don’t have any opinion about the man, but I
do remember that he looked completely nuts talking about “justice” walking
around in a baby blue track suit sporting gold chains like a roadie for
We never did get out to see the Crazy
Christmas Lights house, and I hope to remedy that over Christmas. You do what
you can and as much as Ebony can tolerate. It was enough that we were there. She was happy.
The entire trip reminded me of every time we’d gone up, but
especially the first time I introduced her to clam chowder, or as they say in
Rhode Island, “CHOWDUH.”
I took Ebony to the Black Pearl, a restaurant on Bowen’s
Wharf in Newport, right on the water. My friend Nicole used to be a waitress
there and we went and sat in her section. We ordered the chowder and after one spoonful, Ebony was
hooked. She exclaimed, “This is delicious!” and that was it. I turned her into
a Chowder Monster – excuse me, a CHODUH MONSTUH. Funny to most Newporters: we
all make fun of clam chowder at any local joint. My friend Chris Jones, who
worked in many local restaurant kitchens would say, “It’s all Snow’s!” The
thing with the Pearl is that they use dill and copious amounts of butter. It is
delicious and we’re all semi-snobs but when our relatives and friends come to
town, we take ‘em to the Pearl.
So, forever after, Ebony would have clam chowder wherever we
went. She liked the chowder at the Pearl – loved it – but also enjoyed the
chowder at Flo’s. So I got chowder from the Pearl for Thanksgiving and her
mother – who had never had clam chowder – ever! – loved it and I think that if
I have achieved nothing in life, I have done a Chuck Woolery on Newport clam
chowder for at least two people I love. So I have that going for me.
I was thinking of that first time I took her for Chowduh… I
love seeing her happy, seeing her face light up, seeing her smile. That’s what
I got this trip: her smile. It’s become a smirk with the advancing state of her
cancer, but I love it and I’ll take it and try to make her smile any chance I
Tomorrow is her mother’s birthday. This woman has given up
her life to be here and I think the world of her for it. She might be as quiet
and low-key as a houseplant, but that is only my perception. She is a warrior:
quiet, perhaps stoic, in her execution but nevertheless a badass for hanging in
there in spite of the dire circumstances. I ordered flowers online and
tomorrow, after I return the Santa Fe to Enterprise, I am going to order a full
bucket of chicken and a bunch of sides from Popeye’s because she mentioned that
she liked it and ever since Ebony turned me on to it, I can’t wait. It really is
pretty great, Popeye’s. I don’t care about any stereotypes about black people
and fried chicken: there is no denying that what is good is good and if you
like it, well Fuck Everybody, we’re doin’ it. I love Popeye’s and would never
have known this if Ebony had not turned me on to it and that in and of itself
it why I am doing what I do for her. I just want to make her happy.
I don’t know how much time we have – the doctor says “Five
years, maybe” and I will take that. Some days I think we’ll be lucky to get
five months, but I keep trying because Ebony is so special to me. It’s all in
the eyes and the way she looks at me telegraphs so much. We were just starting
to talk seriously about wedding plans when she was diagnosed with cancer and I
will forever regret that we never followed through, but what the Hell is
marriage anyway? A piece of paper? Evidence of someone affirming what you
already know? I love Ebony and if getting Popeye’s or clam chowder isn’t
evidence of that, then I don’t know what love is any more than Lou Gramm.
I got Ebony’s Christmas present already. One of them,
anyway. I have been looking for this goddamn thing on eBay for a few years now
and I finally found one in her size. Ebony went to Buffalo State -- The State
University College at Buffalo – and she has spoken so fondly of her time there
that I have wanted to celebrate that. Since she’s such a metal chick -- a
really, really metal chick – I got her a vintage Buffalo Sabres hockey jersey.
Red, with the crossed sabres on the front and, appropriately, number 81, the
Slovakian bastard, Miroslav Šatan. His surname is pronounced, “SHA-tan” but it
reads SATAN. Pretty rad. Her mother is going to hate it, but it will make Ebony
happy and isn’t that what it’s all about?
She got into hockey because I got back into hockey through a
friend of mine, Alan, who used to play and then coached a local NY prep school
team. He has since become the program director and is totally blasé about it –
the only thing typical about him, he has this blasé attitude about everything,
especially his achievements -- so Italian – but he reinvigorated my love of the
sport. I can’t stand football, am indifferent to baseball and care nothing for
basketball, but hockey… I love it. If you’ve skated and played it, that helps.
But it’s a fast game that takes skill – you have to be able skate, for starters
-- and PS: most venues play rock/metal between setups. So when a bunch of guys
fly around chasing a piece of vulcanized rubber moving at 180 MPH, it is riveting and Ebony got into it which
only made it better for me. We watched the Bruins (my first team before the
Rangers and Islanders, Devils and Sabres) destroy the Vancouver Canucks in
June, 2011 in Game 7 at Flo’s and Ebony was as into as I was, yelling, “Go Krejci,
you motherfucker!” Chris was bartending that night and will never forget him
giving us shots – everyone at the bar – when the Bruins won for the first time
in almost 40 years. I will never forget that night because Ebony was having a
great time doing something that I was into and I’m selfish that way I guess.
So I got her a jersey – not a Bruins jersey – but one that suits her.
Given her condition now, it’s hard to know what to get her.
The jersey is frivolous, of course, but I think it will make her smile. And
that’s about all I can do right now is make her smile and to that end, I will
work my ass off. I don’t know what else to do or how to be.
In the meantime, there has been an early Chistmas present,
just for me. It inspires me for that reason alone: I am lucky and have to try
harder. One of my favorite bands – probably my favorite band since Type O
Negative is “on hiatus” – The 69 Eyes, this goth n’roll band from Finland -- has
actually released a Christmas song, “Christmas In New York City” and I could
not be happier, under the circumstances. I played it for Ebony and she smirked. She likes it.
You have to be grateful for the things you have and not
bitter about what you do not have. At the moment, I am grateful for The 69 Eyes.
Right? It is Christmas after all.
And I am still doin' it for Ebony. It's going to take a lot more than traffic in Connecticut to break me.
Ebony arrived in Newport Tuesday night, shortly after 9
p.m., greeted by a red fire engine, with its cherries popped, and three firemen
standing in the middle of Gibbs Avenue, talking to my mother.
And this is how we began our Thanksgiving week in Rhode Island.
I got in Tuesday morning, following my Monday night shift,
around 4. I was up for a little while then turned in. I got up at 9 a.m. Sun
was already up, her mother that is, and sitting with Ebony, feeding her a
little breakfast, some fruit, I think.
I was starving so I made myself a garbage plate of leftovers. A little ground
beef, Kielbasa, diced red and white onions and an egg, fried in butter on a
medium-high heat and served over toasted rye bread topped with cole slaw,
pickles and mayonnaise: a deconstructed hamburger. It was so good: just hot,
yummy and filling and just what I needed. For a few moments, everything was
fine and it was going to be a great day.
And then the world turned black.
In Ebony’s current condition, her right leg is unresponsive
and does not function. Where before the lumbar puncture, she could balance on
the balls of her feet, like a ballerina and support herself on that side when
standing up. Only weeks before that she was shuffling around with the walker,
gliding along effortlessly like a figure skater.
Now, what I have learned is that she needs to be fully awake
and alert in order to stand on her right leg. Coming out of a sound sleep,
Ebony is bleary-eyed, groggy and nods off frequently. Trying to lift her only
has her body slipping down in my arms and I desperately try to swing her to the
wheelchair only to fail several times in row, after which I am sweating and
need to sit myself.
This was one of those days. After some time and a few
moments where I wished I had not eaten, I had managed to clean her up and get
the pull-up adult diapers over her ankles and pull them up. I really hate
calling them diapers, she is too genteel for that. I prefer the French, which
is on the packaging for some reason. Her aunts have been participating from
North Carolina, throughout this ordeal, shipping us things like this and I
guess they order them from Amazon Canada. Instead of diapers, Ebony wears Les sous-vêtements pour incontinence, absorption
maximale. Or, simply: French underwear.
Pulling her French underwear on while she’s laying down seems like it should be
a piece of cake; but Ebony is gifted in a way that Nicki Minaj is gifted and as
she is unable to prop herself up on her own, this turns the simplest-looking
task into a conundrum better faced by Hillary Farr’s contractor on Love It or List It. It takes time and it
also involves rolling Ebony forward, then back, and a lot of pulling and general
disbelief. Just pulling on a pair of loose-fitting sweats is equally challenging
Cleaned, dressed and still nodding off, her mother and I
manage to get Ebony vertical and then seated snugly in her wheelchair. This has
a lot to do with the fact that Ebony woke up briefly to the pulling and such,
and managed to support herself on her left leg long enough for us to get her
So, mission accomplished, and at now 1 p.m., I walked down
to the car rental place.
We live way out in Queens, just off the Van Wyck, in an area
that is filled with care dealerships and auto-body shops, near Lee’s Toyota.
And near Lee’s Toyota is Enterprise car rental. I can walk there in 15 minutes.
The problem was, since it is “a holiday week,” a lot of the cars were not ready
on time, or coming from one place to another. The car I reserved was coming
from the airport. I’m not entirely sure which airport, but it might as well
have been Logan. My plan to get us on the road by Noon, 2 at the latest, was
I finally got the car, a 2018 Hyundai Santa Fe, which is a
stylish SUV with all mod cons and plenty of room for three people including one
with extra long legs, a wheelchair, a walker, a bunch of stuff and my bag of
laundry that I have been neglecting that, when I carry it over my shoulder,
probably makes me look like I’m shipping out to… well, Newport. Newport, Rhode
Island was one of four Navy boot camps where enlisted men were sent during
World War II. How appropriate.
I have never driven an SUV but quickly adjusted. I knew I wouldn’t find parking
so I just drove up on the patio in front of the building and parked and hit the
flashers. Went upstairs and started packing and when it was time to bring Ebony
down, Taddeus, our tall Polish super, offered to help. At least I think he did
because I have a lot of trouble understanding him. He loves Ebony, though, ever
since she moved in. “Jet Blue! Jet Blue!”
We wheeled Ebony up to the front passenger side and on the
count of 3, tried to lift her, then pivot her into the front seat. This did not
go well and Ebony immediately went down on her legs, slipping from my arms
until her ass was resting on the runner. Taddeus jumped in the back seat and
helped pull her back up and after about ten or fifteen minutes of pulling and
lifting and trying to maneuver her, we got her into the front seat, and I
buckled her in.
Taddeus kept saying, “Oh my God. Oh my God.” He didn’t
realize how much she’d declined since this began and I think he was truly sad.
I was just wiped and relieved he was there and kept thinking about what might have
happened if he had not been.
Soon, shortly before four o’clock, we were on the road.
Everything I dreaded about driving North-bound along I-95 came true. All I
wanted to do was beat the traffic but instead we schlepped along like an old
dog all the way up to New Haven. It was excruciating. The only good thing was
that we listened to the Coleman Hawkins birthday broadcast on WKCR, a marathon
of the great jazz tenor sax player hosted by Phil Schapp, which kept my blood
pressure down. Ebony woke up once we hit Connecticut and was in and out the
rest of the way but I think she enjoyed the excitement.
After we got to New Haven I decided to test the powers of
the Santa Fe and punched it to make up for lost time. We lost the KCR signal
and soon were listening to Christmas music, courtesy of the syndicated John
Tesh, on Lite Rock 105, Providence.
Ebony has suffered for 10 years of my adoration of the
seasonal all-Christmas radio format and whenever we’re in RI for Thanksgiving
and Christmas, it’s on. They play all the usual things and feature new music –
Pentatonix – but over the years have also included music that would not be
considered traditional Christmas music and this irritates me, because it’s all really,
really depressing. Joni Mitchell’s “River,” Dan Fogelberg’s “Same Old Lang
Syne” and the fucking “Christmas Shoes.” They won’t play Billy Squier’s
“Christmas Is” or anything remotely heavy… also, they never play the good
Johnny Mathis like “Calypso Noel,” but nevertheless, I tune in and Ebony
tolerates it. She likes Nat King Cole and Dean Martin, though, so she hangs in
there. Either way, we were playing Christmas music when we rolled in and saw
the flashing red lights…
Mom decided that, since we do not have a wheelchair ramp,
and Ebony needs assistance to walk, MY idea of calling in friends (and in one
instance, a good friend said her father – an awesome guy to be certain – would
come over and help), was insufficient and therefore called the Newport Fire
Department. So, Peter Boyani and two of his best men were on hand to lift Ebony
out of the Santa Fe and into her wheelchair, then lift the chair into the house
and then still, lift her out of the chair and onto the couch. I couldn’t thank
them enough and started choking up doing so.
It’s not perfect but I cannot bear the thought of putting
her in some home or acute care facility and this is evidence of it. It is
difficult, it is scary and not without event, but when she woke up Wednesday
morning, I was right there at her side and she touched my hair and put her hand
on my face and smiled.
She was pretty good Wednesday and I don’t know if it’s
because she’s here and my Mom is doting on her while blithely challenging her
cholesterol intake (“Do you want something to eat? I can make you a bacon butty
with some potato chips on the side if you want? How about a Coke?) but she is
livelier than she’s been in a while. I went out and ran errands – I got ham
hocks and collard greens for Sundai who is making collard greens – and stopped
at the Pearl to get chowder and I made three trips to two different Stop &
Shops plus one to my arch-nemesis, Shaw’s; and finally one brief stop at
Vicker’s because I am weak and terrible human being with an affinity for
Italian wine and am going to have a glass for the first time since early September.
I cannot say that I am relaxed but I can say that Ebony is surrounded
by people that love her, entertain her and are spoiling her. It’s not an ideal
situation but what is? I have promised myself I am going to focus on the
positive and keep everyone’s spirits up as best as I can. I keep thinking of
all of the amazing times I have shared with Ebony, many of them in Newport, and
I could not be happier to be here.
With any luck, I am going to try to get Ebony out for a
little bit tomorrow. We live around the corner from the crazy guy who has the
insanely spectacular Christmas display, so I think it might be nice for her to see as we’ve always
stopped by to stare in utter bafflement and take pictures.
“I HOPE YOU GET STUCK
IN TRAFFIC AND HAVE A HEART ATTACK YOU FUCKING YUPPIE TWAT! YOUR MOTHER SHOULD
…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
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
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
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
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
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
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
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
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
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.
Recently, a friend suggested I should prepare to let Ebony
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
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
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.