I don't want to think about the end,
but I'm about to. I'd prefer to think about Stephanie's life, all the wonderful
times we had so very far from doctors and hospitals, but the memories of her
last hospitalization keep cluttering my head. It was a horror show, and to get
past it I reckon I need to talk about it. Write about it. Ghastly things need
to be said out loud, before I can slip further back to better memories, to all
the many, many years that were so much better than the last week of her life.
So, here's a disclaimer: This entry
is not going to be pleasant at all. The details might qualify as gruesome. You
have been warned.
*
* * * * * * * * *
When I see it (and I'm in no hurry),
the death certificate will say that Steph passed away in the early hours on
Saturday, September 1, 2018. I was there, holding her hand.
The cliché is that she went
peacefully, but she really didn't. It was a chaotic scene in the intensive care
unit, with a flock of doctors and nurses shouting orders and taking turns
performing cardiopulmonary resuscitation. Honestly, though, by that time I
think Stephanie had been gone for several days. To my recollection, her last
moment as Stephanie was on Tuesday evening, August 28, 2018.
She was largely lucid on Friday the
24th of August, and even more so on Saturday the 25th. We spoke for
ten or twenty minutes at a time, and then she'd sleep for ten or twenty
minutes. When she woke, she was mostly herself, but she wouldn't remember where
she was, and progressively through the day on Saturday she began remembering
more, and even remembering that she was in the hospital when she woke up. Many
doctors came into her room and had many conversations, mostly with me but more
and more with Stephanie too. By that evening, Stephanie and I agreed that she
would be talking with the doctors from then on, instead of me. That's how good
she was doing.
Color me naive, but we weren't
seriously considering that she might not make it. Of course, we knew she had
health issues, and several scary diagnoses. We knew that her life would be
shortened by her kidney disease and/or the ever-present complications. But Stephanie
had been hospitalized a dozen times or more over the past several years, and each
hospital stay had been incredibly difficult – never was it easy, but always
she'd come home.
Sometimes there was physical therapy
for weeks or months after leaving the hospital, sometimes there were nurse
visits to our apartment, and always there were follow-up trips to see assorted
specialists. There had even been hospitalizations where Steph wandered in and
out of lucidity, not much different from those first few days during this
hospitalization.
I was extremely worried, of course –
nobody does hospitals without being worried. Stephanie was awake, though, and
she was talking, she was frequently and increasingly lucid, and worst-case
scenarios seemed far, far away. I always kept detailed notes during her
hospitalizations, and a lot of my notes during her final stay at the hospital
had headings like "After discharge" and "Long-term
recuperation." It never seriously crossed my mind that this time, she
might exit the hospital via the morgue.
But on Sunday morning the 26th,
Stephanie didn't really wake up when she woke up. All day, again, she faded in
and out of sleep and in and out of lucidity, but she was "there" a
lot less than she'd been there on Saturday. The difference was stark enough
that I asked the nurse, and she urged a doctor to order a follow-up MRI of Steph’s
brain, but it looked fundamentally the same. Perhaps she was just needed more
rest, we thought.
She had fewer still moments of
lucidity on Monday the 27th and Tuesday the 28th, and I
was there with my laptop methodically Googling at every possible diagnosis that
any MD or RN suggested. I found some sources that suggested music could help
bring someone back to lucidity, especially familiar music. I ran that idea past
a nurse who agreed that it was a good idea, so I drove home and got a CD player
and her favorite album, the rock'n'roll soundtrack from the movie Crooklyn,
and started playing it in her room.
She responded almost immediately,
with a few twitches to the rhythm. By the second song — "Respect
Yourself" by the Staple Singers — she was kicking her leg in the bed,
matching the beat. She was looking at me, a smile on her lips and in her eyes.
"I love you, Steph," I said, and she kept smiling and basically
dancing, but didn't say anything.
"She's rockin' in the
bed," I said to the nurse, and he said, "Yeah, she's rockin'."
And she was. I don't remember whether I started moving my head side-to-side to
match her head movements, or whether she started moving her head to match my
movements, but my lady was rockin' in her hospital bed, smiling at me, and we
were making genuine eye contact, both of us bopping our heads to the tune. We
were having a moment, and it was good. It lasted for a few minutes, the length
of the song. She said nothing, but she was happy. I didn't know that it would
be our last contact, but it was – Tuesday, August 28, 2018.
She fell back asleep after the song,
and as I scour my memories over the next few days, there wasn't another flash
of lucidity. When I held her hand after that, it was just me holding her hand;
she wasn't holding my hand in return. Her fingers would occasionally contract,
but it happened in both of her hands at the same time; the nurse said it was
probably just a muscle twitch. Doctors kept coming in and poking her, but her
only response was a reflexive response to the pain of a pinch.
I remained optimistic because I can
be stubborn as hell, just like my stubborn wife. I told myself, and told
Stephanie, that she was coming back, and I believed it. As late as Friday
night, I was chatting at her, feeling the squeezes she was giving my hand, and
trying so hard to believe that there could be some correlation between those
squeezes and whatever I'd said a few moments earlier. But I had to acknowledge,
the squeezes came just about as often whether I said "I love you" or
whether I said nothing at all. I stayed there, talking with her, holding her
hand, scratching her back, telling her stories, kissing her cheeks, and playing
Crooklyn on an endless loop. Hoping.
Every time Stephanie has been in the
hospital, they've let me spend the night in a chair beside her bed. I've always
been there around the clock, every time. But this time she was in an intensive
care unit (ICU), and the rule was that I had to leave the room overnight. I'd
been sleeping in one of the waiting rooms, and always letting them know where
I'd be, in case of emergency. And here comes the gruesome part. The worst thing
that could happen.
At 2:45 or so in the morning, a
nurse woke me in the waiting room, and said, "She's alive but in a serious
situation." We rushed back to the ICU, and Steph's room was a nightmarish
whirlwind of activity, with 14 people huddled around her bed, one of whom was
doing CPR, all the alarms sounding, the heart monitor flatlining, all the other
monitors wildly fluctuating. Oxygen 100, then, 35, then 100 again; blood
pressure crazy high, then crazy low; a cacophony of beeps and buzzers. Someone
brought me a chair, and I watched from outside the room for several minutes.
One staffer seemed to be assigned to
stand next to me, maybe to answer questions, maybe in case I fainted. After
watching in terror and silence for several minutes, I asked her, "If I
spoke to my wife is there any chance she could hear me?"
"We don't know," was the
answer. But someone told people to step aside, and while enough nurses and
doctors stayed close to Steph to continue CPR and continue barking out orders and
status as the emergency continued, they let me close enough to take her hand.
Someone put a chair behind me, and I sat and blubbered what words I could find
through the tears for a few minutes. "I'm here, Stephanie. I'm here, and I
love you." On and on, while the team's coordinated chaos continued all
around me. I don't think she could hear me, but I had to tell her I loved her,
in case maybe she could hear me.
Meanwhile, they kept pounding her
chest, hard enough that I knew bones were breaking. I asked our nurse,
"How long can this continue before all hope is gone?"
She answered, "That's up to
you. We can go for a long time if that's what you want."
Me: "But is there any hope of
bringing her back?"
A doctor interrupted:
"Physically, yes. But mentally ... by now, after so long without a
heartbeat, even if we were able to bring her back there would be significant
brain damage."
Stephanie and I had talked about
this "What If?" scenario several times, in great and painful detail.
I knew what she'd want, without a smidgen of doubt. "Then we have to
stop."
I took a deep breath through tears
and said to Stephanie, "Thank you, my love, for everything, for being the
best friend and the best person I have ever known or ever will, and ...
goodbye."
They stopped the CPR, but our nurse
continued gently explaining what was going on. "I'm going to give her some
morphine to ensure that she leaves us without pain." And later,
"You'll see some respiratory readout and other data on the monitor, some
muscle spasms, but it's all residual."
I held Stephanie's hand until it
grew cold, talking to her, then stepped out of her room for a breath of air,
and returned, several times. The employees gave us the room, with no
interruptions, and I'm thankful for that. I spent ten or fifteen minutes alone
with her, crying and saying everything I could think to say, some immeasurably
small fraction of the "thank you" she deserved. Steph's eyes were
still open, and unlike the movies they wouldn't close with a little push, so I
finally left the room. "I'm leaving, Steph," I said, "but I will
always be with you, and you will always be with me." I couldn't stop
crying, never wanted to stop crying.
*
* * * * * * * * *
So that's what happened in the
hospital. I'm eager to forget almost all of it, and my hope is that writing it
down helps clear out my head a bit. I want to remember the way Stephanie lived;
that's so much more important than the way she died.
But when I do remember Stephanie's
last moments, I hope "Respect Yourself" comes to mind, and seeing her
dance to the rock'n'roll in a hospital bed. To me, that was Stephanie – leaving
this world the way she lived in it, with joy on her face.