That Which Can
Dedicated to my
family and friends, those who have come before,
those with me now,
and those still to come.
It’s a wonderful life, and I am living
it to it’s fullest.
Copyright 2003, all
Charles Landau and
Wethersfield, CT 06109
The pain flashed it’s warning shot
across my breastbone, and both my stomach and my guts contracted. It hit
me again, full force, and I felt it squeeze the air out of my lungs as
well. I wavered for a moment, looking for some less obvious and dire
explanation. Perhaps food poisoning, a reaction to eating too much
Chinese Take-Out, or…
left arm went numb. I knew these symptoms and took three steps towards
the basement stairs to call for Catherine when the lower half of my body
collapsed under me. The kitchen floor was cold against my hot forehead.
I tried to tear off my shirt, the top of my chest was on fire, my legs
ice cold. I crawled the last few feet to the stairs and heard her moving
me! I tried to scream. But no sound came out, there was no air to
propel my plea. My vision began to blur, the stairs became a long white
tunnel, fluttering angel wings surrounding a darkening spiral downwards.
There was a soda bottle on the top stair. I pushed it
over, and it fell down to the basement with an irregular thump. It was a
counterpoint to the sound of my own heartbeat. In the distance, I heard
her call my name. Then the hurried sound of feet on the stairs echoed
the pulse in my ears, and her face appeared in the center of my tunnel,
rushing towards me as the white closed in, and overtook me.
Red and Black. The
white tunnel was opening and closing with each heartbeat, revealing red
and black. The cold March night revived me, cooling my face. I was
shivering with the cold that emanated from within, and was only
confirmed by the New England night air.
being carried, my arms strapped to my sides. I recognized voices in the
background. The worried faces of two young girls, bundled against the
cold. Catherine, worried but rising to the occasion, giving calm
instructions. The red pulsing light became unbearably bright. I was slid
into the ambulance. Someone I didn’t know was speaking to me kindly,
asking questions for which I had no answers. He slipped an oxygen mask
over my face. It didn’t ease the pain in my chest, but I didn’t have to
fight as hard to breathe. We flew through the night.
ceiling in motion. The bustle of people, doors swinging open on both
sides as we rushed through. My face was becoming flushed again, needles
in my arms. Everything was a chaotic swirl of white, voices and pain.
Questions. “On a
scale of one to ten, how great is the pain?”
Answer. “I think
I’m going to throw up”. My insides explode out my mouth, covering the
The room full of
people laugh. Catherine sighs, and visibly relaxes. “I guess it was the
Chinese Take-Out. I’ll call the kids and let them know he’s going to be
But as she moves
to leave the room, the doctor stops her. Watching the monitors, he
cautions, “He’s still having a heart attack. We have to get him upstairs
Her face went gray
at the news. She hurried down the hall to call my parents and the girls
with the news. Then the doctor turned towards me and said, “I’m afraid I
have some bad news.”
“Wait”, I replied
softly, “ I’m in the middle of a major heart attack, I’ve just thrown up
all over your wall, and you’re rushing me upstairs for an operation. You
say you have BAD news?”
“We have to
catherize you and there is no time for an anesthetic. If we wait long
enough for anesthetic to take effect, you’ll be dead before we can
“Do what you have
to do”, I whispered.
It was going to be a long night.
I wasn’t sure if I would see the dawn. And I was afraid.
is not the absence of fear. Courage is meeting your fear, wrestling with
it, and doing what needs to be done despite fear.
The Endless Night
Catherine’s vision was blurred with tears when Chuck’s
parents, Jack and Leona, found her outside the operating room. When she
hugged them, her shoulders slumped and she could feel herself dissolve.
Leona began to cry as well. Confronted with their pain, and the tension
of the situation, Jack’s professional manner reasserted itself.
he’ll be okay”, he said softly. “You got him here in plenty of time”.
Years of saving lives, years spent watching the life and death drama of
heart attacks and recovery added authority to his words. As a
Cardiologist himself, he had seen the advances of medicine provide hope
where once the only question had been “How long?”.
settled in to wait, feeling helpless to affect the outcome in the next
room. More to soothe himself than anything else, Jack explained the
procedures his son was undergoing in the operating room. Compared to the
pain of the heart attack, the procedure would be a relief. Just a tube
into the artery of the groin, snaking up the body’s major pathways to
the blockage in the heart. Perhaps it could be resolved by expanding a
balloon through the tube to enlarge the artery and let the clot pass. If
not, a little drill could be used through the same tube to clear a
passage for life saving blood. If the artery refused to cooperate, a
small tube would be inserted to keep it open. Step by step, he
explained, as the minutes ticked by.
And by. And by. It was taking too long, much too long. He
began to pace, until his wife caught his arm and sat him down in the
chair next to her. She turned to look in Catherine’s eyes, and tears
welled up again. She softly told stories from the past. Happy times, sad
times, and the love resounded in her words. The waiting settled heavily
Chuck Health Update
On Saturday night
Chuck had another heart attack. I don’t want to get into lots of details
here, but it was very bad, worse than the first one. They had a very
difficult time and almost lost him during the angioplasty. Then he had a
bad setback yesterday afternoon when he developed pulmonary edema and
congestive heart failure. But he’s managed to pull through both events.
afternoon he has made steady progress. His color is good and his vital
signs are improving steadily, but he has a balloon pump in his aorta to
assist his heart with the pumping. He finally has some relief from pain
and slept a lot today. The blockages have been dealt with, now we have
to see how much of the heart muscle comes back. They will try to wean
him off the balloon starting tomorrow and in a few days we will have a
better sense of what the long term prognosis is.
He is in Cardiac ICU
and cannot have phone calls or visitors yet. We expect him to be there
at least several more days and if all goes well with removing the
balloon he can be moved to a regular room. He is awake and alert, he’s
trying to eat a little but again, moving slowly with that. He did not
have a cardiac arrest and was in surgery within 2 hours of the onset of
the attack. All these things help to minimize the muscle damage.
The girls are coping
well and were able to see him a little yesterday afternoon when the news
was more grim. We will take them up again tomorrow. Please send energy
and prayers - he is progressing well, but is not out of the woods yet. I
will post updates as we know more, but for the moment, no news is good
news. - Catherine
The Dawning of
The light fought with
the pain for my attention when I woke up. My chest was no longer on
fire, and breath moved it up and down in a comforting rhythm. But the
pain also throbbed in time with my breathing. There was background music
too, a gurgling, a beeping, some soft voices. It wouldn’t go away, so I
opened my eyes.
Catherine’s face swam
into view. She had been crying. She had never looked more beautiful. As
my eyelids fluttered, she broke into a relieved smile. She was inches
from my eyes, the rest of the room was a blur of white without my
glasses. A large hand appeared on her shoulder. I knew that hand.
Another familiar face resolved, and I knew Big Joe was with her. I tried
to speak, but my throat was sore and dry. Nothing came out but a rasping
sound. The was a flurry of activity, and Catherine was carefully
spooning a little ice into my mouth. I became more an more aware of the
rhythmic pain in my groin. I tried to move my leg, but it didn’t move.
The sheet covered it, and when I tried to pull it away, she held my arm.
“You can’t move”, she
said. “You keep trying to, so they had to tape your leg to the bed”. I
struggled, and felt Big Joe’s tender but firm grasp on my calf and
“Shush, my friend.
Rest, you’ll tear out the tubes”, he murmured.
“Tubes?”, I asked.
She bent forward, her
cheek wet against mine. “There’s a machine attached through your groin.
It’s keeping your heart beating. Don’t struggle.”
“So I guess it didn’t
go well, huh?”
“Joe just went to get
your parents. Your Dad can explain better than I can. “ She looked so
And then I passed out
Chuck Health Update
As of this evening
Chuck is making steady progress... His color is good, his vital signs
are where the doctors think they should be. He still has the balloon
pump but starting sometime tomorrow they will begin to wean him from
that and then we will have a better idea what’s what. The balloon pump
is only a temporary solution, to give his heart a chance to begin
beating on it’s own again. If they can remove the balloon pump and he
remains stable they will be able to take him out of the ICU.
I was there most of this afternoon and he was sleeping most of
the time. They have allowed him to eat but he’s getting nauseous so
we’ll take that slowly.
It means a lot to us
both that there are so many of you supporting us through this difficult
time. I’ve told him about all the phone calls,
cards and emails from all
over the globe. It’s amazing the number of people who have sent their
best wishes, including some he hasn’t seen in years. We are blessed to
have so many friends.
All your energy and
prayers are greatly appreciated - Catherine
irrelevant in the white room. The symphony of machines varied, but never
stopped. When voices were added, it became a melancholy opera, and I
opened my eyes.
This time my parents
were by my side. My Mom was holding my hand gingerly, and there were
tubes in the wrist and behind the knuckles. I was reminded of all the
times I had awoken from childhood fevers and stitches, to find her in
this same position. I wanted to laugh at Time, but my throat was dry
again. My nose was painfully dry, and a plastic tube rubbed against it.
The light was too bright, until my father leaned forward and eclipsed
it, his face etched with concern.
How many years have
they cared for me, I found myself wondering. In almost half a century of
joys, fears and boo boos, they had been the constants. I squeezed her
hand, and found my fingers wouldn’t close completely.
“How are you feeling,
son”, my Dad asked. “You had us scared there.”
“You’ve got to stop
doing this, I’m going to go prematurely gray,” Mom added with a smile.
It was a little in-joke, as none of us could remember the original color
of her hair. She got up to get the girls from the waiting room, so I
could ask my father the details.
“You’re going to be
alright”, he assured me.
going to be on this machine for the rest of my life, am I? I don’t think
I could live like that,”, my voice was rising and shaking.
“No, no, it won’t be
like that. This is just temporary, to give your heart a chance to
recover. You’ll see, it will come out in a few days, and they’ll move
you out of Intensive Care and on to a regular floor for a while’
“When can I go home?”
Only his eyes
changed. “I’m sure you’ll be better soon.”
Okay. I blinked. When
my father gave short answers to medical questions, it was because he
wanted to avoid the details. I looked into his careworn eyes, and
decided to let him.
Then we were both
overwhelmed with GIRL energy, as my daughters spilled into the room. The
noise level jumped, and I began to feel better already.
Eva and her Mom had
driven up from New Haven and stayed with Catherine until they could
visit. I’m very fortunate that wife and my ex-wife get along, and their
daughters both enjoy having part time sisters. Family is very important
to all of us, and having this extended family like that feels very
special. When I hear the horror stories of other divorces, I truly count
Less time had passed
than I thought, but the wait must have seemed eternal for them. Lily had
been entertaining them with her drawings and cartoons. With the optimism
of youth, the girls never doubted I would pull through.
Big Joe crowded in
behind them, half babysitter, half playmate. The teasing and joking rose
in pitch until the head nurse came and threatened to enforce the two
visitor rule! It helped me forget my pain, listening to their chatter.
While Eva edged my
father out and sat on my bedside, Lily and Big Joe made up stories about
her cartoon characters. My wife and mother retired to the waiting room
to catch a moment’s respite, and Dad settled down in a chair and closed
his eyes. Eva entertained me with stories of how they were all coping
with this crisis, and her Mom added humorous commentary and quotes from
Monty Python. I found myself laughing at her wry observations, despite
the pain in my chest that followed.
The parade of nurses, doctors and
technicians never stopped. As one came in to draw a blood sample, Big
Joe began to usher the visitors out. But Lily looked me straight in the
face, and asked if it hurt. I admitted that it did, and she took my
“You go, guys.
I’ll stay here and hold his hand”.
never flinched, even when I did.
The Trick is Not
When Eva arrived at the
hospital room, a nurse was taking her father’s blood with a small needle
from the back of his hand. His sleeves were rolled up, showing purple
bruises up and down each arm. She stood at the door and observed her
father chatting away, as the nurse changed the tubes attached to the
needle and began to fill up another vial. Several filled tubes, neatly
labeled, already sat on a nearby table. Her father was chattering away,
asking questions about a house the male nurse was renovating, and she
marveled at the easy way he switched from topic to topic. He did not
seem to notice, or at least did not complain, about the draining of his
She was afraid of
needles, and hated to get shots. “How does he do it”, she wondered.
Doesn’t he feel pain? Is he just used to it? And those bruises, clearly
the staff had to draw blood from both his arms on a regular basis during
this long stay, and had run out of conventional spots. Absently, she
rubbed the back of her own hands and shuddered.
Perhaps it was her
discomfort at the thought, but her father abruptly looked up to her at
the doorway. “Come in, come in, if you’re not too squeamish. This is
Ishmael, he is one of the best at what he does, even if what he does
Ishmael looked up as
well. He was Puerto Rican, and his dark face split into a huge grin at
the sight of her obvious discomfort. “Your father is a trooper. His
bruises are his badges of honor. Come in, do not be afraid.” He looked
back down and withdrew the needle, pressing a square of gauze over the
puncture mark. “Tape”? He inquired. His patient shook his head, and
began pressing the gauze tightly, raising the arm above his head.
Eva moved into the
room as Ishmael left with a polite salute. “Doesn’t that hurt”? She
“There’s pain and
then there’s pain. This is pain with a purpose. The doctors need to know
what’s going on inside me, and I want them to know. So it’s easier to
bear than purposeless pain, or the self induced pain of confusion and
despair. We are defined by our fears, and how we respond to them. Some
pain makes you stronger, while...”
She settled into her
chair, preparing for another long “life lesson”, but he noticed her
expression, stopped abruptly.
There was an awkward
silence. Then she asked “So what have you been thinking about, to pass
“Old times. Mostly
when you were young, the friends I’ve made, the two bookstores we
“Mom often talks
about the store, and I’ve seen the pictures of me swinging in the
display window, and crawling down the isles, knocking down books!”
“Good, Do you
remember any of it?”
“No, I remember the
second store, with the little table in ‘Eva’s Corner’ and all the
children’s books. I remember camping out in the back room with sleeping
bags, and eating donuts for breakfast”.
“Hmm”, he mused. “Do
you realize we did that because I was too poor to have an apartment at
that time? I had to live in the back of the store to save money and put
whatever I made into the rent and the stock. It was a wonderful time,
and a terrible time, but life is like that. It depends on which part you
“And what part do you
“Why I remember it
all, child. But I only recall the good, and I’m still friends with many
of the people I met thru that store.”
At that point another
nurse, this one a young girl Eva’s age, came in to take the old man’s
vital signs. As they began to converse, Eva glanced at her watch and
made her excuses. Even though she knew better intellectually, it always
seemed to her that her father was flirting when he spoke with young
women. He got along with most people well, and always found topics of
common interest, but... it made her uncomfortable.
Update # 3
wanted to take a minute before I get
into bed to let you know where Chuck is at. We wound up having to wait
till Thursday to transfer him out of the Intensive Care Unit. His blood
pressure continues to be very low, but the doctors did remove the
balloon pump. They are trying to work out the balance of medications but
haven’t quite figured out what will work for him. For now he is on the
telemetry unit and will eventually be discharged from there.
Despite his low
pressure he continues to get stronger. He is out of bed and taking short
walks in the hall. Most of the gadgets have been removed but he does
have to wears a portable monitor. His spirits are good and he REALLY
appreciates all the cards and well wishes that have poured in. He feels
so loved by you all and your words have really given him strength and
There is no word yet
on when he might be released. Perhaps Tuesday or Wednesday. We will have
to continue to watch his blood pressure of course, but for now he is
reclaiming his battered body and getting lots of rest. He has felt well
enough to complain about being bored... and that is very encouraging. I
have a list of things he wants me to bring from home to entertain
Thank you again for all your support
and prayers. I’ll continue to let you know how he does. For now, I am
going to heave a big sigh and collapse into sleep.
Life Goes ON
Once I was transferred
out of Intensive Care, all I could think about was how I wanted to go
home. Catherine continued to visit several times a day, sometimes with
Big Joe in tow, sometimes leaving him at home with a list of chores that
needed to be done to free her up to visit.
To pass the time
in between medical tests and blood draws, we all played cribbage. It was
a wonderful escape from the realities of the hospital, and focusing on
who was ahead as our pegs raced around the board gave us a much needed
break. Although the tubes in my hands inhibited shuffling, my mind was
clearing and I could compete equally in this artificial realm, where
strength and mobility were not important.
The balloon pump
had been removed, but I still needed to lay on my back all the time, and
the pain from it stiffening up became a problem. Catherine would roll me
over carefully, and Big Joe would massage my aching muscles. He has a
healing touch, and they would work carefully together to bring me some
relief without dislodging any of the monitors and tubes attached to my
chest and arms.
Catherine ignored my invitations
for more intimate massages, but I saw a slight smile in her face. Big
Joe offered to divert the nurses, but she still was not intrigued. I was
beginning to feel more like my old self, and anxious to go home.
In My Own Voice
Update # 4
Thanks for all the
wonderful cards and well wishes. I just woke up from my afternoon nap,
and am feeling pretty good right now. It’s wonderful to be home! My
condition varies by the hour, but I am definitely making progress. It’s
two steps forward, then a little slide back, but my eyes are always
On Thursday I will
see my new cardiologist. We expect him to do some tests to try and
determine how much damage my heart sustained during this latest
incident. I know from the last time, whatever the numbers, they will
likely get better over time. Rumor has it he will order me hooked up to
a “halter monitor” for at least 24 hours. That involved putting a series
of wires on my chest (via plugs) which run to a portable computer to
record my vital signs over time, looking for irregularities. I am hoping
we can adjust my medication as well.
The main issue right
now is, in order to give me a blood pressure strong enough to sit up and
stand, they’ve had to raise my heart beat. A lot. Or it may just be
something called reflective tachacardia, but whatever it is, my old
pulse rate was 70, and my new one runs between 95 and 115. That’s a lot
of extra beats per minute, especially on this old ticker, and tiring. It
affects my breathing as well, so I never seem to pull a full breath.
Even with this compromise, my blood pressure averages 80/60 instead of
my usual 110/80. This makes it difficult to sleep, except through
exhaustion. I guess I’m lucky to get exhausted so frequently. I
sometimes sleep for 4 hours, then am conscious for six, then the cycle
The incisions in my groin are
practically healed, so my walking is improving. I can even walk for
short distances without a cane, and look forward to walking outside,
maybe as early as next week! It may take a while to get back to the 3
mile power walks Catherine and I were doing before, but it’s a start. My
hand - eye coordination is improving, but my hands are imprecise, making
me feel clumsy. If you thought my handwriting was bad before...well,
luckily I can still hunt and peck at the computer keyboard. All in all,
wisdom is that being on the heart assist machine (as I was for several
days) makes recovery more difficult, or perhaps just indicates that
recovery will be more difficult due to the severity of the injury. My
progress seems more rapid than the last heart attack, so why?
I attribute it to
having passed this way before. Each landmark I pass is familiar (sitting
up, walking without a cane, etc) and I know that just 3 weeks ago I was
feeling great. In THE MYTH OF SISYPHUS, Camus suggests that the
greatest despair comes from wasted effort. The main character is doomed
in Hell to push a large rock up a mountain, only to have it tumble down
from the summit when he reaches his goal. Then he begins again.
I feel like I am
pushing the rock of my recovery up the mountain. But each step forward,
I see familiar signs, and remember the ones that will follow. More
importantly, I can see that summit. I know what is possible. I had just
danced on that summit, regularly power walking 3 miles with my wonderful
wife, throwing friends twice my size at Aikido, and working with the
full steam ahead attitude I like to bring to my projects. When I look
up, I can almost see myself there again. All I have to do is climb.
I guess I was too
optimistic. I was hoping to get a sense of how much damage I sustained
in this latest heart attack, but we have not yet stabilized my heart
rate and blood pressure enough to even make an estimate. Instead, I have
a 24 hour a day mini-monitor strapped to my body (with enough tape to
anchor a ship) that will record my every heart beat. Shhh, it’s
listening even now!
It’s not the most attractive look
I’ve ever sported. I look like a suicide bomber!
We are trying still
another approach to the medications to tame the hummingbird trapped in
my chest. My doctor said it is conceivable that my heart will just have
to beat that fast from now on in order to function. I hope not, but...
we will see. It’s at least another 3 weeks before we can try another
assessment. In the meantime, I’m getting better at taking conscious
control over my breath. The natural tendency is to breathe short and
shallow, 3 times to every one breath Catherine takes. I can force myself
to take slower, deeper ones, except when I sleep. I knew all that
meditation would pay off. Another complication is the possibility of
fluid in my lungs. That may be behind the breathing issue. If it is
congestive heart failure fluid, I may have to go on another (unpleasant)
medical regimen. Right now it’s watch (or listen) and wait.
Patience was never my
strong suit, but I guess I will be learning it again. I thought I could
go into Cardiac Rehab soon and push the healing process. I envisioned a
Club Med for oldsters, doing jumping jacks in a pool, supervised time on
the treadmill, sort of Baywatch IV. But all that is on hold until I’m
stabilized. And then it has several phases, so it’s a longer process
than I realized.
While I’m home, I
do make regular visits back to the hospital and doctor’s office. I can’t
climb the stairs to our bedroom, so Catherine has made up a bedroom of
our den and I am confined to the first floor. . Best of all, no one
wakes me up at 4 AM to take my blood!
Update # 5
Sorry haven’t been
able to connect with you. It’s been a rough week. If we thought our
troubles would be over once we escaped the hospital, we were sorely
We had to go back
to the doctor on Friday because Chuck had an incident last night. Fluid
built up in his lungs over a 3 or 4 hour period and he had a lot of
trouble breathing. He had terrible coughing spasms and was so short of
breath he had to sit up in his chair till 3 am. For most of it I sat on
the floor next to him with my hand over his heart. Its been very hard
that we can’t even sleep together at night. I sleep on the couch and we
set up a twin size bed in the den. It was a long night and so hard when
eventually I had to go lay on the couch because I couldn’t hold myself
up anymore. It was even harder to let myself fall into sleep because I
wanted to know he was breathing.
The doctor put him on
a diuretic. It will take a while to see if it helps and they’ve adjusted
his meds 3 times since he left the hospital. The real problem is that he
seems to have all the symptoms of congestive heart failure, which can be
treated, but is a chronic condition.
That’s not good and he may not be
able to work for a long time. And his quality of life is going to be
severely limited which will be the real challenge. He’s already
impatient with himself, though his spirits are good for the most part.
But yesterday was a hard day. When we were sitting in the waiting room
at the doctors, the tears just started rolling down my face. I wasn’t
hysterical, but I was sad and afraid.
I keep having these
glimpses of the future, being alone. I can’t tell you the feeling...
it’s really awful. But it is a very possible reality. I think he’ll be
with us a while longer, but not as long as we had hoped.
So each day
becomes more precious. Rabbi Shapiro says “May those whose lives are
gripped in the palm of suffering open, even now, to the wonder of
Life.” Some days that’s easier to do but I am trying not to lose that
wonder and appreciation for the time we have now. Even now we say to
each other “It’s a wonderful life” and it’s still true. Despite
everything, it IS a wonderful life. Scary but very precious. - Catherine
The hospital room was ghostly pale when she entered, as dark as such
rooms ever seem to get. The soft hum of machines pumping and dripping
drew attention to the central piece of furniture, draped in white
sheets, and the shape it concealed. Various tubes and wires lead to the
figure beneath, and she wondered… Is he awake?
come in, I hear you.” The shape shifted, and her father’s head emerged
from the white sea of linen, a swatch of slight color among the
otherwise undifferentiated swirl of sheets. “I’m not asleep, just
turned on the small light by the bed, illuminating his face. Her
father’s head was shaved, his small beard gray and white. Even though
the bed was narrow, he seemed smaller still, lost in its coverings. He
had been losing weight steadily since reentering the hospital. Her
unspoken fear was that he would continue to shrink until he disappeared
entirely. With a start, she realized that was a poetic allegory for her
true fear that he was fading from her life day by day.
she put down her packages. “Daddy, did you forget I was coming? It’s
Tuesday, you know.” She kissed the top of his head, carefully navigating
the IVs and wires stuck to the various parts of his arms and chest.
“No, no, I knew you were coming, I was just resting up
for your visit”. He seemed wide-awake, and more alert than on her last
visit. But just as his body seemed to be shrinking, his voice was
softer, his presence somehow reduced by the long hospital stay.
what have you been doing?” she asked.
at her quizzically. “ Doing? Nothing, of course. Lying here as they
drain me of blood twice a day, flirting with the nurses, sleeping. Oh, I
cooperate when they need to examine me… breath deeply, breath normally,
roll over, but it’s not complicated. I had them turn the TV off, the
news was too depressing. Now I just watch the clouds.
sometimes when you’re down, it’s reassuring to watch something that
floats.” He readjusted himself in the bed.
do you remember?’
“My memory may not be so good. You know, we are all the
main character in our own novel, and memory tends toward exaggeration. “
“ Do you
remember the heart attack? The Emergency Room? This isn’t the first time
you’ve been back in the hospital.” she prompted.
it’s true that while nothing that can be remembered is completely true,
nothing that can be imagined is completely false. Truth is distorted by
our role in the story, but it’s supplanted by imagination based on
things that almost were. I’m not sure what really happened.“
He blinked rapidly,
as images rolled rapidly before his eyes. Then they closed.
she kissed his forehead, and left as the squawk box announced the end of
only 8:00, and sleep was hours away. He fingered the tube protruding
from his swollen hand several times, and then retreated into his
thoughts. In the dark, he frowned and tried to piece together the
memories of the last month.
With Big Gnarly
Update # 6
As many of you know,
I’ve been confined to the first floor of my house or the hospital since
my heart attack. Stairs are difficult, tiring, and not a good place to
fall down, so... I sleep, eat and live downstairs for now.
This evening Catherine went out, and
was gone longer than expected. As dinnertime had passed, I went into the
kitchen to hunt up something to eat, when I heard noises from down in
the basement! I remembered that the kids had come in through the
hatchway door a few days ago during a rainstorm, and became concerned
that it had not been latched, and someone had broken in. Because we have
kids, my guns are locked up...upstairs... and I didn’t think I could do
both flights in the same night. So I grabbed my boken (wooden Aikido
sword) in one hand, the banister in the other,
and slowly crept down the
basement stairs, carefully controlling my breathing with each step so I
wouldn’t get out of breath or give away my position. Slowly I stepped,
inch by inch, step by step (oh, wrong shtick, sorry).. to discover...
Lily’s bunny rabbit
had somehow escaped his cage and was running amuck! I chased him back,
locked the cage door behind him, and was breathing a sigh of relief
when... the phone rang! Foolishly, I dashed up the stairs to answer it,
and was totally breathless when it turned out to be Catherine calling to
say she was running late. It was mostly a one sided conversation, but
when she realized I had been RUNNING THE STAIRS she flew home as fast as
I survived the burglar, the bunny
and the stairs. But Catherine’s scolding… THAT was painful!
Who says an infirm
life has to be dull? - Chuck
Living Day to Day
In the back of my
mind an old Blues refrain plays, ‘Dying is easy, it’s living that’s
hard’. And the back of my mind is pretty much all I have left now.
My strength is
ebbing, day after day. Each breath is a painful reminder of all I’ve
lost. At night the Cough Demon takes me into his suffocating embrace.
Catherine’s eyes are my mirror, and I see myself shrinking a little bit
each day. I can barely stand up, and getting up from a chair requires a
feat of engineering.
Perhaps the most
difficult thing is watching her suffer as I deteriorate. While I
concentrate on one breath at a time, she has to juggle our world.
Taking care of me is a full time job, but she also has to handle the
house, our finances, the insurance paperwork and her daughter. She
sleeps fitfully, when she sleeps at all.
She has become my
nurse, my mother, my caregiver. My troubles are her troubles, but she
keeps her fears to herself. I worry about her, as she worries about me.
And I feel guilty as the source of those fears. It’s becoming harder and
harder to face the challenge of the new day.
One of the most
difficult things I’ve had to get used to is being so dependent. I can’t
put on my own shoes, or sit up long enough to cook, or even get up off
the couch to get myself a drink of water without help. When I shower, I
can’t stand up, and if I take a bath, I can’t get out of the tub.
And it’s affected our
relationship. I’ve become her patient first, her husband second.
Naturally optimistic, I tend to do more than my body will allow, and she
alternates between cautioning and scolding me. When I overdo it, she has
to half carry me, and hovers anxiously to see if we need an ambulance.
continues to discourage my sexual advances, afraid the jolt of
adrenaline will cause another hospitalization. Most of the things we
used to do to enjoy ourselves are now gone, and our main satisfaction is
surviving a day without an emergency.
She has dropped
her hours at work to part time, and is using up every sick day, personal
day and her vacation to take care of me. Even then, it’s not enough, and
she works at home while I sleep to keep up. Her boss has been very
understanding, and she continues to do her share of the work from a
distance, sending in her research and projects as email attachments.
I’ve applied for Disability, as
there is a six month waiting period from the time of my injury. Even
with my accrued sick time and such, I’ll be without an income for at
least two months. Catherine assures me we will survive, but juggling our
finances are taking it’s toll and decimating our savings. My job
provides excellent health and prescription benefits, and I carry some
private insurance as well, but there are all sort of extra expenses that
drain our resources. She doesn’t want me to worry, but I can’t help
feeling guilty because I’m not pulling my weight financially. And as my
breathing and strength get worse, it’s harder to feel like a real
person, a real adult.
My days are filled
with medical appointments. Besides the doctor visits and hospital
tests, I’ve begun to go to the Congestive Heart Failure Clinic and
Cardiac Rehab several times a week. In many ways, these appointments are
the highlights of my week.
The CHF Clinic
nurses are wonderfully reassuring. They screen the symptoms, listen to
my problems, and then adjust my medications after consulting the doctor.
Having seen so many cases, they bring years of experience to my
situation, and increase my confidence that I will survive.
Unfortunately, they also end up admitting me into the hospital for IV
“tune-ups” sometimes. But when I’m released, I do breath easier and
generally have a new medicine regime to try out. Each new discharge from
the hospital is a small victory.
The nurses and physical
therapists at Cardiac Rehab combine the best elements of cheerleaders
and slave drivers! On my first few visits, Catherine pushed my into the
gym in a wheelchair. My blood pressure was so low I couldn’t stand up,
and the doctor had ordered that my blood pressure had to be at least 80
systolic in order for me to exercise. But, despite drinking several
bottles of water to increase my blood volume, my pressure was so low and
soft that it was impossible to measure. The staff had to take turns
passing me from person to person until someone thought they heard a beat
at 80 so I could exercise. Being unable to stand, I did only sitting
down exercises like the bicycle and the Nu- Step machines.
By going three
times a week, I began to build up my strength and muscle tone after
months of laying in a hospital bed. The wonderful staff alternated
between urging me forward and slowing me down, based on the monitor
readouts. Even though the adhesive from the monitors caused rashes, I
needed that feedback to find the proper pace for safety and strength.
A large part of the Rehab routine
involved learning to live differently. Most people there had bypasses or
heart attacks, and were trying to learn more about their medications and
alter their lifestyle. We all had to learn a new way of eating. For the
majority, it was a low cholesterol diet. My issue was different. I had
to learn to eat a low salt diet, so I wouldn’t retain extra fluid which
would collect in my lungs and drown me. While there was a lot of books
and materials on a low cholesterol diet, there was much less suited to
my situation. So I began gathering what there was, and collected it into
a recipe book for both Catherine and my mother. Divided into sections by
both the type of meals and main ingredients, it became our culinary
adventure. Some of the food was surprisingly tasty, and other family
members just added salt at the table to make the others more palatable.
After approving some meals and dropping others, we copied the recipe
book for both Cardiac Rehab and the Congestive Heart Failure Clinic.
But the hardest
change for many patients was to give up smoking. It wasn’t an issue for
me, but I saw the struggle in others, and was grateful I didn’t have to
face that challenge. I was shocked when I occasionally saw other
patients, just out of their hospital bed, huddling outside in the cold
puffing away at their cigarettes. Knowing the dangers it entailed for
someone with a healthy heart, I could only turn away and pretend not to
Cardiac Rehab became our social
life. It was filled with triumphs and tragedies, as fellow patients
graduated or got ill. And occasionally, one would get a new heart.
Eva rushed into the hospital room
in a panic. It was filled with new machines, and a nurse was just
finishing up drawing blood. The usual hum of the equipment was alive
with new clicks and beeping.
“What happened?” she
demanded. “I came as soon as I got the call!”
The nurse took her
arm and began to lead her out to the hall, but her father spoke up from
the darkness at the center of the mechanized chaos. “It’s okay, I’ll
tell her myself”.
The nurse shrugged
sympathetically, and let go of her arm. She slipped out and closed the
door behind her as Eva approached the bed, searching for some path
through the tubes and wires by which she might hug her father. “What
he said bluntly. “ The staff here is very good, but someone got sloppy
with one of the injections or something, and I got a mysterious hospital
based infection. Fever followed, then it got worse and my blood pressure
dropped through the floor. All the alarms went off, and people began
scurrying around and whispering like mad. It was crazy. I really want to
go home, I’m sick of it!”
“I know Daddy,
but… this is the best place for you to be right now. They know how to
handle these emergencies. They can keep track of all the medication
changes, watch the levels in your blood, fluctuations in your pressure…”
“I know all that!”
he was practically shouting. “ But I’m tired of being a patient! I’m
tired of being awaken at 4 AM so they can draw blood! I’m tired of all
the bullshit, tired of this bed, the tubes and wires… I’m just so
tired!” He was practically in tears.
She cried for him.
For a while her sobs were the only human sounds in the room, filled with
machines. They both waited until her eyes were dry.
“I’m sorry I
yelled” the old man said simply. “It’s not your fault, it’s no one’s
fault. I always said I was the luckiest man alive, what a surprise that
not all that luck could be good.”
“It’s no one’s
fault,” She repeated. “ You know Catherine and I would take care of you
at home if we could. The whole family would help. But you’re still too
sick. You need this level of care, you need the machines, and you need
to be patient.”
“I guess I’m not a patient
patient,” he mused. “I’m sorry I yelled.
Her eyes focused on his pale
face amid the paler sheets. “You’re going to get through this, Daddy. I
know you are. You’ve survived so much, don’t give up now”.
But he had fallen
asleep. Eyes red, she quietly left the room to search out the doctor.
You Gotta Have
When I first
decompensated and went back to St. F. Hospital, I thought they would
adjust my medications, dry out my lungs, and send me home after a few
days with different meds. That was the plan, until the day before I
expected to be discharged, when the doctor told me he had run through
all his tricks and, while I was clear now, if he followed that plan, he
expected I would be back with the same problem in two weeks. And I could
only expect it to get worse. So he was lateralling my case to “the big
boys” at H. Hospital (where he didn’t have privileges and never went)
for evaluation for more radical solutions, including a full heart
transplant workup. Catherine and I cried, because we didn’t realize how
sick I really was until that moment. Also, instead of going home, I
would face 2 weeks (it turned into 3 because someone didn’t follow
sterile procedure) of extremely invasive testing without even the
comfort of a familiar hospital and a doctor I knew and trusted. And this
(very smart) doctor had run out of ideas on how to return me home.
Our first impressions
of H. Hospital were that it was a dump. The room I was moved into had a
view of a bird-shit stained wall, and the bathroom was filthy. Unlike
St. F., there were no pictures on the walls and the public intercom was
loud and located right over the bed. I felt like I had been shuffled off
to the slums, because I wasn’t likely to be a success statistic.
But the staff turned
out to be great, much better than St. F., and very responsive. They did
more with less. Jobs that were specialized at St. F. were done very well
by the nurses at HH, despite limited resources. And as I met the doctors
of the Transplant Group, I was impressed by their expertise and
intellect. Things got better when the room across the hall opened up and
a nurse asked if I’d like to move to a room with a view.
At first, every test
I took came back with one answer...give this boy a new heart, as quickly
as possible. Reconstructive surgery was useless for me, because I didn’t
have enough live tissue to work with and, in the heart, dead is dead.
Several devices (including a
Defibrillator ) wouldn’t preserve
me for the same reason. Luckily, every OTHER part of my body was in
excellent shape, no kidney failure, lungs sound, circulation fine, brain
functioning no less normally than ever. It seemed that the only real
solution was the most radical, and I was an ideal candidate.
But transplant is
always the option of last resort for several reasons. One, hearts are
hard to come by, and matching hearts harder still. Two, transplant is
not an end to problems, but an exchange of one set of serious problems
(mostly immune suppression) for the existing problems you already know.
Third, the longer it can be put off, the better the techniques, drugs,
and perhaps even hearts themselves (like mechanical hearts or stem cells) will get, as
the field is improving every day.
But transplant, for
someone with very little live tissue, poor blood pressure and a tendency
to have plaque spontaneously explode in the heart for no reason, can be
a new lease on life. And I was moving, painful test by painful test, to
the top of the transplant list.
Until I hit the
treadmill test. Now I believe in giving 110 %, especially when providing
doctors with medical information with which they will make life and
death decisions. When it’s my life or death, I try to give 120 % !!! But
I can also be stubborn, and am an overachiever, too confident of my
own WILL to carry broken flesh through the trials and tribulations
before me. Both Big Joe and Catherine constantly have to slow me down,
so I don’t start racing around when rest might be more appropriate. I
strive for perfection, knowing I’ll never making it, but take great
satisfaction in the improvement such striving brings. And I honestly DO
want to get better, just faster than my body will allow.
But then we came to a
test called the VO2Max test, to test heart and lung function in the real
world. Normally, they put the patient on a treadmill with a heavy helmet
and snorkel to test endurance. But when the patient is too weak to walk,
or has extremely low blood pressure, they use chemicals to stimulate the
heart, and then an antidote when the test is completed. I’m told it
feels like a chemically induce a panic attack.
Now, I had an MRI
test several days earlier, and had the worst claustrophobic panic attack
of my life. Once they lowered me into the tube and it’s walls began to
close in to within 2 inches of my body, I told them I wasn’t ready yet
and they began to extract me. My heart thumped like a heart attack, I
couldn’t breath, and my mouth got so dry my throat stuck together. As I
came out I heard the nurse monitoring me in the other room screaming “
Get him out, get him out NOW!” My heart rate had hit 200! Luckily, with
some drugs, some powerful spiritual meditations and a towel over my
eyes, I was able to try again and complete the test.
The concept of
another (this time chemically induced) panic attack was too much for me.
And beside, I AM a good walker, I thought I CAN DO the treadmill even
though the statistics say otherwise. Anyway, those are just statistics,
and as my baby brother says, “for you as an individual it’s always going
to be either 0 or 100 %”. And I knew that with the right visualization
(power walking with Catherine up the Big Hill of our usual route) I
would tap in to all those associations and strength I had the last time
we walked together. I knew I could do it with her by my side... and I
did. Far beyond expectations, beating the odds, like a runner who opens
his eyes at the Finish Line and finds himself in first place!
But this test
fundamentally changed how the Transplant Group viewed me. If I could do
this, I simply was not sick enough to need immediate transplant. Sure,
there was no live flesh there in my heart, but SOMETHING must be driving
me far beyond the limitations of that flesh.
And so, I was removed
from the top of the “active” list, and put on the “watch, invasively
test every 6 months, and pray” list. Even if the perfect heart for me
shows up, they will give it away to someone sicker in Boston or NY
rather than call me in.
Now, I should have
been elated. When transplant was first suggested, I cried. This is (the
doctors assure me) wonderful news. I may have several years before I
decompensate so badly that I actually need this radical procedure. This
is what I wanted when I was in St. F., before weeks of invasive testing,
putting tubes through my jugular, groin, arms, before a hospital induced
staph infection that cost me a week of agony. Great news!
Except, it’s a
gamble, a gamble with my life and eventual future. Right now I “present”
very well. Except for my heart, I’m in great health, and would be at the
top of the transplant list. I would get the first heart that matches me.
But, on the outside, I’m at risk of several medical catastrophes that
would eliminate me from being on the transplant list at all, or drop me
so far down that being on the list is a mere formality to give hope to
Not to be too
negative, but realistically I’m at risk of kidney failure as they try to
compensate for the fluid my heart can’t pump. I’m at risk of developing
diabetes. Although I take a drug to thin out my blood, I’m at risk of
stroke, which could affect my brain and mobility. Poor circulation could
lead to amputations. And last but not least, I still have a fundamental
problem with plaque suicide bombers exploding unexpectedly and without
warning in a heart that now has so little live real estate left, I think
we can safely guess that “3 strikes and I’m out”. A very fast ambulance
ride will make the difference between life and death. That’s MY LIFE OR
DEATH I’m talking about here.
Maybe everything will
work out swell. Maybe I’ll have several years to build my strength,
enjoy my family, and create new and exciting CD ROMs and videos. Maybe
I’ll decompensate so fast they will put me back on the active list
before any of these other problems can screw me. Maybe next time I’ll
let them induce the chemical panic attack rather than walking... it’s
not cheating, just taking my WILL out of the business of evaluating my
But, while it is
understandable from the doctors’ perspective, the choice was made for
me. I did every test they asked, gave 120 %, and they decided I’d be
better off without a new heart. And that hurts.
Worse, they told me
at the height of the staph infection, just as they identified it and
began pouring an antibiotic that burnt like bleach through the (new) IVs
in the backs of my hands. They had put in a convenient “port” for
dumping drugs into my system, but it was infected and they had to remove
it. That meant getting several new semi-permanent IV sites, and direct
blood draws from my collapsing veins every day. I’m wired up like
Pinocchio, can’t even piss without help. And, as a 50’s boy, being
helpless and dependent on others for the simplest things is a fate worse
than death. I began to sink into a terrible depression. Everything
became colorless, odorless and tasteless. I couldn’t eat, couldn’t read.
The only thing “real” was Catherine’s warmth when she would lie down
beside me in that narrow hospital bed. I was drifting on “the Gray Sea”,
with only her light to guide me to shore. I was lost.
And then Catherine
made me take the anti-depressant drug they had been prescribing for me
for weeks. I had been resistant. In my youth the hero could get shot in
the arm with a 45 slug and still beat up the villain. “It’s only a flesh
wound, let me bite on this silver bullet and you can pull it out, I
don’t need no stinking pain medications!” But she was right. These
mental medications are just like heart meds. When you are sick... TAKE
That night, after she
left (she had her daughter to care for), I stood at the window of my
room, all wired up, and made some key decisions. I realized that if I
didn’t reframe the situation, I would sink into the Gray Sea and drown
in it, medications or no meds. So I started with a question I had
learned from the Self Help Guru Tony Robbins years ago... “What’s good
about this situation?” To do this you really have to commit yourself to
work through it, it’s not easy. The answer is always “Nothing, it’s just
a horrible situation”. So, then, “But if something were good about it,
what would that be? What might you look back upon and remember with a
chuckle, or a smile?” Well, it didn’t come easy, but I wouldn’t let
myself off the hook. Every time I wanted to quit, I remembered being
lost on the Gray Sea and that scared me enough to go back to the “work”.
Finally, I opened my
eyes to my surroundings, and realized “Well, this is sure a nice view of
Hartford and Wethersfield, the contrast between city and country. I miss
my own home, but you sure get a different perspective from the 10th
floor on Washington Ave.” Okay, maybe it’s grasping at straws, but what
else will a drowning man grasp at?
“And I sure have met
some nice staff here. In particular, I’m telling everyone who complains
about immigrants the story of “Industrious Ismael”. The guy is amazing,
came from Puerto Rica, learned English, enlisted in the Navel Reserves
so he could learn medicine and get his tuition paid, works 2 jobs, goes
to school and is renovating a 2nd house so he’ll have rental
property. Next time someone complains about those PRs who come to the
States for welfare and don’t learn our language, I’ll REALLY give them
“And I bet there are
lots of opportunities for me to be the giver rather than always taking,
if I look for them.” So I started a large Sunday Funnies type cartoon,
praising the staff and giving them funny nicknames... Mighty Mike,
Arlene the Watchful Angel, Peppy Patty, Terrific Toni. Catherine helped
finish the drawings, and Big Joe inked and colored it. It was a big hit
when we presented it to the staff of Center 10.
And I began to feel
One day Big Joe took
me for a walk, and we created a new holiday. Andrea, on old friend, had
come to visit me but I missed her (MRI test, I think). She had left me
some balloons. So we took the balloons and walked into people’s rooms,
saying “It’s Balloon Day, would you like a free balloon?” Some of these
people had never had a visitor other than the nurses. One guy asked
gruffly “What do I need a balloon for?” I repeated a lesson I had
learned earlier. “Sometimes when you’re down, it’s nice to look at
something that floats!”
Finally, we tied it
to the end of his bed where he could manipulate it with his toes. Like
me, he couldn’t control his situation, but he now could at least control
a balloon. It’s not much, but “You can’t always get what you want, but
if you try sometimes, you might find, you can get what you need”
(Rolling Stones circa 1965). Grasping at straws? Sure, but it brought
the first smile to his lips in days.
The best was when we stood at the
elevators and gave them to kids coming to visit the patients. “It’s
Balloon Day, want a free balloon?” We gave one each to 2 young children
with a young Dad, and asked if they thought the patient they were going
to see might want one. I figured it was a grandparent or something, but
in a quivering voice one said they were going to visit their Mom! That
was an extra balloon well spent. Finally, when all the balloons were
given away, Joe guided my gently back to my room. I mused that Hallmark
Cards spends 10 million dollars to lobby Congress to create a new
holiday (that’s why we have Grandfathers Day, Secretaries Day,
etc, to sell Hallmark Cards). We created a new holiday and got lots of
smiles in a grim place for free. Things were beginning to turn around
Finally, I was
feeling okay again. My life is on the line, the odds are even, what else
can anyone ask for? I’ll either get stronger or get a new heart... or
the gamble will fail. I can’t let it rule me, or I will be adrift on the
Gray Sea and lose no matter what!
“Wow, you’re sure
looking a lot better!” Eva exclaimed as she entered the hospital room.
Her father, sitting up in a chair, had noticeably fewer wires attached
to his chest and no tubes except oxygen. Before him lay a tray of picked
over hospital food.
“I’m feeling better”,
he replied, sipping herbal tea. The steam fogged his glasses, and he
absently removed them and cleaned the lens on his gown. She noted with
satisfaction he was wearing them again, a sign he had taken interest in
his surroundings. “You look good today. Not that you don’t always look
good, but ...are those new jeans?
Her mouth almost
dropped in surprise. He had stopped commenting on her clothes years ago,
when she went for the sex and sassy look. He WAS feeling better! “”Yes,
Grandma took me shopping, and we shopped till we dropped”.
“You take good care
of Grandma. She’s had a knee replaced, and may not have your stamina.
Make sure she sits down when you try on clothes and …“
“Da DEE! You, giving
ME advice on shopping? Come on, it’s been years since you chose your own
clothes. Catherine does all your shopping, and Thank God! You were still
wearing bell-bottoms when she met you! And those tee shirts, like the
Flash one with the arms cut off? I was SO embarrassed.”
He took another sip
of tea. “I must be feeling better, you’re teasing me again. And I like
Eva sat down on the
bed, then lay down and played with the controls. “The bed goes up, the
bed goes down. Pretty cushy deal here”.
“You don’t have to
eat the food”, he complained. “Smuggle me in some of that New Haven
pizza next time, or maybe a gyro”.
“Oh, that will get me
in good graces with the nurses! Maybe I can convince the cute one to
search me each time I come!”
“Mike? Dear, where’s
your gaydar? Here is a guy with an incredible body, sweet as they come,
makes a real income, and is in a helping profession. Of course he’s
“Daddy, you are
ruining my fantasy! So”, she said, shifting the topic from her love life
“Are they talking about letting you go home?”
“ Why yes”, he
replied casually, “ they say I’m stable, and there’s nothing more to be
done until a compatible heart becomes available. I suspect my insurance
company is also complaining like hell. Never thought I’d be so grateful
for Managed Care!”
I’ll coordinate with Catherine and come in to help you evacuate. With
all the cards, toys and crap you have accumulated during your stay, it
will take an army of us to carry it all. Do you know when?”
“They just took some
cultures this morning to get a white blood count. If it’s okay, I could
leave tomorrow” He drained the last of the tea and put the cup down. “I
can’t tell you how much I want to go home.”
Dad, I know. I’m just
glad you’re still around. There were a couple of times there that, well,
I thought you might have given up the ghost. If not medically, you
seemed…” her eyes began to well up.
“Shh, shh. It was
bad, and I fell down, I admit it. The pain, the fear, the frustration at
being so dependent… I couldn’t even piss without help. But we got
through it. I had a good team behind me, not just the doctors, but you,
Catherine, all my family and friends. I can’t tell you what it meant to
me, knowing you wouldn’t let me go. All those cards and emails, I felt a
lot of good people wanted me to stay. How could I disappoint them?”
“Oh my God, look at the time!” She
said, turning away to surreptitiously wipe at her eyes. “ I’ll call
Catherine in the morning to coordinate your exit”.
“But not too early.
She’s exhausted, and my coming home is going to add more stress in it’s
own way. I still need help getting up, and walking even a few feet is
tiring. You know she’ll hover, and always be listening for the thud of a
fall. Don’t call till 9 at least”.
“Of course”, she
replied, stooping to kiss his forehead. “Pleasant dreams of home, Dad,
I’ll see you tomorrow.”
The Ferris Wheel
Update # 7
Thanks to all of you
who wrote inquiring about my progress. I'm sorry to keep you in
suspense, but I want each of these to be meaningful, and waited until my
doctor's appointment so I had something definitive to say before
speaking. Please understand that, if I could, I would write to each of
you individually, or sit before you and hold your hand before saying
this. But I'm blessed with many people who love me, and feel the press
of time, so I may say intimate things in this forum to reach you in a
I'm struggling to be optimistic right now. My emotions are
unruly, and the future is uncertain. But I have always tried to say what
I mean and want to do so now.
Since returning from the hospital my recovery has not been
progressive. I have gotten stronger thanks to Cardiac Rehab, can walk
short distances occasionally , and stay awake for more than 4 hours at a
time. But I've developed fluid in my lungs at night and terrible
coughing fits which deprive me of oxygen and bruise my ribs. Although
not a medical man, it doesn't take a genius to recognize congestive
heart failure symptoms.
My new adaptation to circumstances
(the Cough Demon) is to plan on being awake and sitting up during His
reign, 11 PM to 3 AM so as to avoid the pooling of liquid in my lungs. I
had one night of relief, but then last night it was back to His
clutches. I will also increase my emergency dose of diuretic if He makes
an appearance. We spoke with the Doctor this morning, and he agreed to
let the new drugs take effect before discussing rehospitalizing me. I
don't want to go back to the hospital, and would rather get oxygen
service at home. Or, be better and not need it!
We've tried many
different medicines, and I have a whole slew of new ones now, which will
hopefully make a difference. If not, I may have to be hospitalized
again. Considering the nursing shortage, I feel I'd be much better off
at home, but at the hospital they would be able to feed me the drugs
intravenously and instantaneously, put me on oxygen and limit any new
damage to my heart cells due to deprivation I will do whatever it takes
to find a solution which allows me to stay home with my family, but it
may not be within my limited powers. So I'm really hoping these new
medications work, and Catherine has agreed to give them a chance and not
rush me to the Emergency Room if I start coughing again tonight. I've
survived worse, and want to let these meds have a shot at keeping me
But there are other problems as well.
Because of the inactivity in a certain part of my heart, I'm now at risk
of a stroke. I'll be taking some powerful blood thinners to prevent this
possibility. But a stroke scares me much more than another heart attack.
Other than the meds and prayer, it will be a matter of sheer blind luck.
Which by the way was my doctor's assessment of why this latest heart
attack occurred. As I've said for 4 years, we are all living on borrowed
time (so you might as well live it with interest!)
But it starts with one breath at
a time, one beat, one moment... that
leads to the next. I’m readjusting, learning to look at time in smaller
increments. I’m learning from the man who was my best student for so
many years, I’m learning to flow on “Big Joe time”. And I am grateful
for every moment, every friendly voice, every smile, every touch of my
wife’s hand, every accomplishment my daughters bring to me. It’s a
wonderful life, and I will continue to live it to it’s fullest until it
Was it happening, or
another memory? Days and nights faded into each other, he was adrift
like The Old Man And The Sea.
“What? Oh, I was
thinking of another day, my dear. I thought you were here to help
Catherine pack up my room”.
“She’ll be here as
soon as she drops Lily off at school.” Looking around, Eva frowned. “I
hope I brought enough boxes, you have accumulated a lot of shit here!”
“I’ve just been here
too long.” The old man sighed. “ It will be good to get back home”. He
stood unsteadily, and she took an involuntary step forward. “I can
stand”, he said, holding his palm up, “I just can’t walk anymore.”
There was an
uncomfortable silence. It lasted too long. “So, what happens now?” Eva
“I’m past this crisis,
but I need a new heart. I’m on the organ transplant list, but I’m a
small man and there is no telling when or if a heart my size and blood
type will come along in time. So I’m going to go home and wait. At least
I’ll be in my own home. Only half the patients on the list will get a
new heart in time. Hopefully, I’ll be one of the lucky ones. I feel
lucky, but the future is unknown and unknowable. Lets take it one day at
a time, and this day is the day I get to go home.”
And with that, they
began to pack.
Living for Today
Waiting is a difficult game, and
it became harder and harder as I got weaker and weaker. My rapid
decrease in blood pressure had affected both the tiny blood vessels in
my eyes, and the shape of my corneas. The results were a blurring of my
vision until reading became impossible. There was no longer enough blood
pressure to flow to my head and feet simultaneously, and gravity being
the powerful force it is, I could no longer stand or even hold my head
up while I sat for any length of time. And time passed very slowly as I
slipped into darkness.
I spent much of it
curled up in the fetal position on the couch, switching endlessly
between several News stations. The news doesn’t change that quickly, but
I barely noticed. For variety, I would listen to old Radio shows from
the 40s, including Vincent Price as The Saint, Sidney Greenstreet as
Nero Wolfe, Bogart and Bacall in Bold Venture, and the many vocal actors
who played The Shadow. It was almost like reading. But as my vision
dimmed, I began to see everything in monochrome, like looking through a
dirty window at the hustle and bustle of life on a far away street.
I was dying by
inches. I knew it, Catherine knew it, but we never mentioned it. When
people asked how I felt, I always replied “Medium”. It was too much to
admit the truth. It was a hard burden for us to bear, and I didn’t think
sharing it would help. As my depression deepened, I did go to speak with
a counselor, but there was only so much to say. Unless my conditioned
changed, unless a heart became available, I was going to die. There just
wasn’t much to do, but add some psychotropic medication to the already
enormous number of pills I took a day, and continue to hope.
Whether in the
hospital or at home, each day brings a new chance for life. Every time
the telephone rings, I jump with hope. It's been a very tough road, and
the way is long (and getting longer), but at least we are on the path.
Here is the plan as I
see it: Although no one can know for sure, I think the right heart will
come along in time to save me. Then there is a 3 - 4 month recovery from
the (major) operation, more Cardiac Rehab to get strong, and
immunosupression drugs for the rest of my life. I'll have to be VERY
careful about infection, especially during the healing process. So once
again, I'll ask all visitors to STAY AWAY if you are ill, especially
with repertory problems, and at first ask people to wash their hands
before we hug. But then things will get more and more normal, my energy
are, the next time you receive a Health Update it will be from
Catherine. I hope it brings you good news.
Update # 9
excuse me if I ramble, its been a roller coaster night. We got a phone
call early last evening from the Cardiac Surgeon. They had a lead on a
matching heart for Chuck. During the several hour wait by the phone, we
shaved him from the waist up and put together a bag for the hospital.
Things seemed to be going smoothly, and we came into the hospital at the
peak of excitement. As they began to hook him up to various tubes and
wires, I called his parents to alert them. This time the also put a tube
down his jugular vein, and began reversing his immune system.
It all looked good,
but there has been a glitch. As with everything we've experienced its a
very rare glitch and this is only the second time it has ever happened
since they began doing transplants here.
Chuck was fully
prepped and we were waiting to go down into surgery when the surgeon
called to say that the donor, who had been pronounced dead the 3
mandated times and had been taken to the Operating Room for the
‘harvesting”, had a change in her vital signs so that she no longer met
the criteria for death. As they moved her from her bed to the
table, her blood pressure rose for an instant, then subsided. Naturally,
they put everything on hold. After another day of observation, it was
clear that she was brain dead, and the “cardiac hiccup” had been an
abnormality. But her family was devastated, and withdrew permission for
the operation. When they took her off life support, she died.
Emotionally, Chuck is
doing surprisingly well, at least right now. We are both disappointed,
but it's the cards we've been dealt. Rather than be really upset or
angry (it was a very RARE glitch), we are encouraged to know that this
system really works, that he IS on the transplant list, and that it CAN
happen. For a while there we felt in limbo, just reading and watching
videos on this process. This has made it real.
This experience has
uplifted my spirits, and also made the pain real. This is not going to
be a fun experience, but I'm hoping to hike over a hill of pain to get
to the greener meadow on the other side. I want my life back! I want to
go to festivals, camp, take long walks, help lift furniture and pull my
weight. I know it's still in the future, even after the operation. There
is a long recovery period, but at least there's the hope of a fuller
life. For years I've used the slogan "Why walk and talk when you can
sing and dance?" I want to sing and dance again, and the last 24 hours
has confirmed that I'm on the right road, even if there are no yellow
bricks lining it.
Update # 10
flurry of emails, first Chuck:
We got the call, and it seems like we
have a very strong possibility of a new heart.
We will hit the hospital at 7
PM, but start with the drugs to suppress my immune system and thicken my
blood. The doctor plans on waiting until he has a viable heart in his
own hands before they put all the tubes in me, but we will see. If all
goes well, these procedures are often done in the middle of the night,
early Saturday morning.
I'm very nervous, but very excited as
well. I'm in the best of possible shape for this operation. I feel like
I've been training for it. I've learned to wait (like a mountain), now
I'm ready to pounce (like a tiger) on the opportunity to reclaim some of
my health, energy and life. (Okay scholars, which Yi King trigram is
it?). I hope it's the real deal, but as you all know, many obstacles can
interfere before we reach the goal.
So it's time to send
more of those good vibes this way, and hope that the next message is
from Catherine, with the good news I went through the process and am in
It’s real! I'm on my
way back to the hospital but I didn’t want you all to have to wait to
hear the news...
Our Chuck has a new
heart and it is beating on its own. He is off the heart lung machine and
in PACU (anesthesia recovery). We still have a very long road but he did
very well during the surgery and there were no complications - which is
a very good sign.
I'll keep you posted
but for now we are heaving a big sigh as we can begin to see over the
top of the mountain that had been looming so ominously before.
Thanks to you all -
and most of all to the donor. Please remember that family in your
prayers as well. They suffered a terrible tragedy, but from those depths
granted new life and hope to several patients near death and their
We are almost 30
hours post surgery and the news is all good. They are very happy with
how the heart is acquainting itself with Chuck’s body.
Early yesterday Chuck
was conscious after surgery so they could measure how he had recovered
from the anesthesia. That was difficult for him because being conscious
on a ventilator is a terrible feeling of suffocation and claustrophobia.
Anytime he was awake he was reaching for the tube trying to pull it out.
After they were sure that he was responding as they wanted after the
anesthesia they decided to sedate him more heavily. They have some
concerns about his right ventricle being a little weak but they are very
happy with his condition and feel he is progressing exactly as they
expect. All his vital signs are being controlled by medication right
now, but that is normal. For the first time in 7 months his blood
pressure was near normal - 117/67. We haven’t seen numbers like that in
a very long time!
I can’t tell you what
a glorious feeling it was to see him this morning - awake and talking.
The sense of relief we both feel to be on this side of things is
indescribable. We still have some challenges but so far, 30 hours in, we
have had no major crisis and that is very good news. We are so grateful
for this gift of life and to the donor for making it possible to have a
More later, but again
we thank you all for your tremendous support. I passed on some of the
messages that have been pouring in, though he is still too foggy for
details. But he KNOWS he is loved and that so many people are praying
for him – that’s the most important thing. More later...
First I want to thank
all of you who sent email greetings... we got an absolute FLOOD of them
today. He REALLY enjoyed reading through them all and we've posted them
on the wall so he has something to look at.
To Penny specifically
- thanks for the King cake and the mardi gras beads... we had a little
party today - he was the only one who was topless, much as he tried to
get everyone else naked. So far, no one found the baby in the cake but
the surgeon who did the transplant even took a piece. We had a wonderful
morning, sort of a mini celebration with all the emails and cake and
that was a good thing for him. It really lifted his spirits.
He is having a
problem with his oxygen stats... in the scale of things it is a
relatively minor problem but he did have lots of shortness of breath
today, which makes him tired. He's on an oxygen mask with 5 liters
instead of the nasal canula. He had to have 3 chest x-rays today which
involved some painful sitting up. He has a little fluid in his lungs and
they have things they can do to dry him out. Again, its not serious at
this point, though it would be better if this hadn’t happened. In the
afternoon they went through the laborious process of getting him into a
chair and as soon as they had him settled in someone came to put a PICC
line into his chest. Not an unpainful procedure and it meant they had to
get him back into bed. Being short of breath this took some more of the
steam out of him.
On the bright side
getting the PICC meant they could remove the peripheral line in his
groin and the Swanz catheter in his neck. They will be doing that
sometime this evening. So he has had a long day and it is not quite
The messages were the
bright spot and made him feel like he hasn’t lost his connection to you
all. He will likely be in the ICU for another couple of days. Maybe by
the weekend they will be able to move him onto the transplant floor. But
despite today he is still doing great in the grand scheme of things. He
could be having so many more serious problems...
Chuck has had a great
weekend. He's almost totally free of all the tubes and wires. Still
having a little problem with getting enough oxygen but his progress is
steadily in the right direction. He has a pleural effusion which is
fluid in the lining of his lungs. It will take a while for that to
resolve itself. If not... well, it can be handled, though it might mean
another operation. His kidneys are tired but they are still working well
enough to pump the fluid through him. Today he was able to walk up and
down the hall with his father. It was the first time on his feet in a
The first biopsy came back with zero
rejection which is a very good sign. This is another procedure which he
assures me is NO FUN. It involves the doctors putting a tube through his
jugular vein, down into the new heart, and snipping off little pieces
for tissue samples. There are a lot of new medicines... and they have
some very scary side effects. Most are immune suppression drugs, and we
will ALL have to do our part in keeping him healthy.
He has had a few
bumps since the last update but we got through them. His spirit is
strong, his color is good, and the Light has returned to his eyes. He's
even feeling good enough to show us regular glimpses of the old Chuck!
I have to fight off his advances, but I can outrun him for the moment!
The Good, the
Bad, and the Ugly
Or why I've been
thinking about Clint Eastwood
Update # 11
Everything is going very well with my
heart transplant. The change in my perception and mobility is
astounding! I'm writing to you from the beautiful lobby of the Hospital,
where I'm the envy of the laptop deprived. So as you can guess, I am not
only free to move about the room, but the entire hospital itself. I made
some cell phone calls, and impersonated a man too important to let a
mere heart transplant interrupt his busy schedule. It's a hoot,
as I actually feel like I have
all the time in the world. I've had some very boring days and nights, as
my reading has (temporarily) failed me, and I've listened to all my old
time radio shows and music several times. TV doesn't work well here and
the news is too depressing. So it's great to get back to the laptop and
write to you today!
I have an obvious confession to
make. I'm a very social person, and these emails have become as much of
a journal to share with my friends as information about my health. I've
been using them to reflect upon my philosophy as I go through these
amazing changes, and won't be insulted if you'd rather just get the gist
from the Executive Summary than plow through reams of philosophical self
indulgence! As some might criticize, blog, blog, blog, it's all about
him! So those people should stop here, knowing I am getting better,
and may even be released soon to
our beloved Treeehouse, to return several times a week to the Hospital
rather than live here!
Now about the title of this email...
you know Chuck has really "lost it" when he begins to have Clint
I never was a big fan
of the Old Tough Guy image, but for various reasons he has begun to show
up in my thoughts recently. Perhaps it's because my youngest daughter's
favorite song (by Gorillaz) is about him and never absent from the
ambient room noise when she is present. Perhaps it's because I saw part
of his latest movie BLOODWORK in which he plays a heart transplant
patient. I very much want to see the whole thing, but immune suppressed
as I am, I'll have to wait till it comes to DVD as a theatre would
likely be too filled with germs to risk it. But for whatever reasons,
this segment is named after an old Spaghetti Western I believe he
starred in years ago. I don't remember the plot (I think he may have
indulged in gun fighting) but I do remember the beautiful music and
haunting Spanish/ Mexican themes. So here we go!
It's been the best of
times, but not without it's pains and frustrations. The pains have been
easier to bear, quite frankly, because the choice is so stark. Do I want
to live or die? Very often I've been told. okay, this might hurt a bit,
or you have the right to refuse this, or we've done what we need to do,
but if you can stay with it, I'd like to do some additional procedure
right now that might give us more information. It's been easy to say,
"Yes, go for it" because I know it's in my best interest and they are on
There have been some other
frustrations that were more problematic. There have been numerous
occasions where information was not passed on correctly, I've asked
people to check on what I knew was wrong, and they haven't made any
effort to do so, making my life difficult and increasing my pain and
anxiety. This has been particularly true of the biopsy procedure, which
an incision in the jugular vein
and then REALLY goes downhill! Even today, when the procedure was done
(and so far seems to be positive) there was confusion over which of 3
people were actually doing it, the "Big Board" had not been updated, so
it started late and in the confusion there was no time to give me the
usual pain medications. I decided not to make a fuss and invoked the
spirit of Clint Eastwood rather than insist on the meds, which would
have set their whole day even further behind. But it wasn't any MORE fun
without pain meds, and the doctor did say next time we would use the
meds, as it relaxes the throat for incision. Perhaps to compensate, he
decided to bring the biopsies over to the lab personally and insist they
be done "STAT" rather than added to the usual workload. This should
speed up his receipt of the information, and lead to an earlier release.
If all this had
happened a day earlier, I would have been in tears. But the previous 24
hours had had so many ups and downs, it put my feelings in perspective.
I’ve discovered that different
departments in the hospital function differently. Now, I know there is a
nursing shortage, and I know that the post transplant floor is busy,
handling as it does all transplants including kidney. But when I was in
the Congestive Heart Failure Unit for all those visits, the equally busy
staff seemed to be able to follow through with their promises. If they
said they would get you something, they came back with it or an
explanation of why it hadn't happened. If meds were backordered from
Pharmacy, they remembered that you still needed them. This floor seems
to have more difficulty keeping up. Medication "boxes" they insisted
were vital were often days late in being prepared, quizzes on the meds
which I have to take and pass to leave the floor were not available,
despite repeated and polite requests. Asked to check on the mis-scheduled
biopsy dates, people either didn't or couldn't discover the truth. Hell,
even I knew whom to call, but they often seemed confused about the jobs
of people they work with every day.
It really came to a
head when a cold rain started (it is the beginning of Winter here in
Connecticut) and the mist seeped into my hospital room, which has no
heat. I requested another blanket from several staff people, all of whom
said they would go get one, but none ever returned. I made requests over
the intercom, which were either not answered or the promised nurse never
arrived. I was consistently polite, begging that I was so cold I was
shaking, but perhaps other problems were more urgent.
I got up and put my second flannel
shirt on, piled every available sheet and mattress pad on to the bed,
but to no avail. I shook for 3 hours, unable to use even meditation to
control my body as the cold seeped into my bones. And I still didn't
know if I was about to go into the biopsy, so I wasn't supposed to eat
or drink anything. Even getting up and making herbal tea was not an
Now, after all I've
been through, I wouldn't blame you if some think "Wimp, what's this
compared to a full heart transplant?"
And I thought that
during part of the time myself. But here is the point of this little
missive. I was being given consistently different and conflicting
information, told it was all vital (and linked to the pain of surgical
procedures and the pleasure of eventually being released) and it was
changed indiscriminately and seemingly at random. I was trying to "learn
the rules", act politely and intelligently, advocate for myself, but not
getting the promised results.
This was reminiscent
of an infamous animal experiment of the early 1970s where monkeys were
put in cages and received shocks and rewards based on colored lights.
Once learned, the Pavlovian conditions were changed almost at random.
The monkeys could adapt to changes, but the rule changes drove them
crazy! They tore themselves apart! It became a totem of early Animal
Rights groups, a song by Peter Gabriel (SHOCK THE MONKEY) and one of the
first video hits of a new (and at that time innovative) TV channel
Around 7 AM I began
to cry, shaking and shivering. Catherine found me an hour later wracked
by sobs I couldn't control, and immediately got a staffer to follow
through and warmed me with several blankets. Things still didn't go
smoothly (the biopsy was on, they are here, no that person does
something else, the doctor says it was never changed, who ordered me "NPO",
nothing by mouth, oh, make up a breakfast tray, oh, it's nothing I eat,
etc, etc, etc.) But with Catherine there as my advocate, things began to
A friend from Center
10 who we thought might die wheeled himself in for a visit and we made
tentative plans to get together for his famous Black Bean Soup. He is
facing some really tough challenges with courage (they had to remove his
toes recently, and it seems unlikely he will get a heart), and his inspiration
helped get me back on track.
Then some friends
from my old job came to visit, then my parents joined us. Catherine got
me some real food, and soon another friend stopped by with some new
music. My sense of self was returning, with the support of all these
The Physical Therapy
Coordinator came by and taught me more early stage recovery exercises,
then marched me up and down the stairwell. When she suggested it, I was
amazed. I was even more amazed when, with her steadying my arm, I could
actually DO it! I took a well-deserved nap, and the staff (having been
read the riot act) began treating me better.
There was a knock on
the door, and someone delivered a beautiful flower arrangement from my
brother's company. It filled the room with tropical smells, lifting my
mood in an unusual way. I’m not the kind of guy who gets flowers, but
with my vision impaired my sense of smell seemed unusually sharp, and it
lifted my mood considerably.
After dinner, more
visitors, and a wonderful massage from an obvious Reiki master eased my
tension and backache. I took my sleeping medication early, wrapped
myself in blankets, and slept better than I had in weeks, perhaps
Which leads us back to this morning.
Despite the mix-up and lack of pain meds, I was strong and focused. No
longer "shocked", I could handle the pain, put the biopsy mix -up into
perspective, and move on.
Email from Chuck :
We just got home, less
than 2 weeks after the main event, and I feel great. I'm very immune
suppressed, but my feelings soar on the wings of my heart. I can walk,
I can sing, and soon I'll dance again.
would not be here if it were not for the love I’ve gotten from all of
you. Catherine carried me, my family (including Big Joe) supported me,
and you let me know I had a place in the world.
There are still many hills, but the mountain has been conquered. Thank
you for sharing this journey with me.
It’s hard to believe. I
was originally due for a routine cardiologist appointment Friday,
October 25th, and was a little disappointed when it was
cancelled and rescheduled for the following Tuesday. I had been feeling
even more tired and somewhat out of breath than before, and was
anticipating Samhain at The Treehouse, as well as the neighborhood
parade of Tricker Treaters.
previous years held true, there would be a gaggle of youngsters,
including many toddlers carried by their parents to experience a major
life event of gifts and treats (and potential dental visits when they
grow teeth). I think it must be a profound experience for young kids, as
I think it was for me, to understand that you can not only dress up,
live your dreams, but even get rewarded with candy for it! Now that’s a
world worth living in!!!!
But my plans were
changed by a phone call (cue the organ) that Friday afternoon that a
heart potentially matching my needs had become available, and did I have
anything more pressing that required my attention? I did not, and we
assembled the crew, including my parents and children, and did some
serious prep work before heading to the hospital.
Our surgeon called
several times to assure us it looked like a good heart, good donor, good
It was tense, but
exciting as we waiting much of the night until we got the green light
around 1 AM Saturday morning. My family took up their watch at The
Treehouse, as I was wheeled into the OR for “The Event”. The staff was
great, and even though the room is kept very cold, kept applying heated
blankets to keep me comfortable. The surgeon was on his way, and others
of his team (one of whom had just become a Dad that morning) got me
Okay, cue the organ
(so to speak), it was lights out on Chuck 1.0 and open the chest for a
major hardware update!
I’m a little fuzzy on
this part, but rumor has it that old heart of mine was sucking vacuum,
had some of the worst numbers they’ve ever seen on something still
ticking, and if they had any idea how bad it was they never would have
let me live at home so long! Apparently the pathology report will
eventually be revealed, but I believe my cardiac output had dropped from
60 % before the heart attack, to 20 % after, to 1.5 % (that is not a
misprint of 15%, that is one and one half percent!) at the time it was
replaced. So Chuck 2.0 has AT LEAST a .5 % advantage OUT OF THE BOX
(numbers are not verifiable by benchmarking at this time, but we will
run those numbers as soon as reliable industry-wide standards are agreed
to by independent experts) (Cue the obscure computer in-jokes, please!)
Although my memories
are confused about the events of the next day, I’m very clear on the
outcome: I lived, and began to get stronger by the hour. I apparently
did and said some unusual things as I was coming back to the world.
Rumor has it I was
speculating that my donor must have been an astronomer, as I was
strongly drawn to the stars and planets. I was also trying to get a
quarter so I could use an unknown device (telescope, telephone,
television) to “make sure the Czechoslovakians were okay”. This was
either a reference to some Czech friends threatened last summer by
floods or a Golom of Prague reference, both of which make equal sense to
me and I’d have to flip the quarter to decide. Lastly, I apparently
flashed a very distinguished older male doctor when he asked about my
organ! He has assured me it was not taken as an offensive act, and
“people do strange things after transplant”.
It was not until
Sunday night that I was conscious enough to ask myself if I had actually
gone through transplant, or if it had been another “almost”. Moving my
shoulders, every muscle in my chest screamed out in agony, and then
delight, as I realized it must be true! I was through the worst of it,
and into my “new” life. I was Chuck 2.0, and my new birthday was October
I have always
understood that this was the first, baby steps in my new life. There are
many steps before me, new stumbles, new ouchies to make me cry and new
achievements to savor. Transplant is one of the last choices on the list
to maintain life, for two reasons: There are not enough hearts to go
around, and the potential consequences and rejections are almost as
dangerous as doing nothing but praying for the best. For some, living
smaller and cautious is a wiser choice. But not for me.
And indeed, there was
pain a plenty to fill the next few days New tubes and wires to be
removed, new medical procedures to be endured, new sources of pain, new
fears to meet and beat, new immunosupression information.
The reawakening of my
battered body and new medications caused some discomfort, especially the
reawakened stomach functions, kidney and mid back areas, all ached.
worse, a form of rejection that makes the power of teenage love almost
inconsequential. The rejection of the new organ as unworthy makes the
rejection of emotion seem ludicrous in scope! But at my first major
postoperative exam, a right heart catherazation and biopsy through the
jugular, there were no signs of rejection!
I spent almost two weeks after the operation in the
hospital recovering, a very short period of time. I never thought I’d be
thankful for Managed Care, but they pushed me out and home in record
time rather than continue to pay for me to take up a bed. During that
time, I experienced the best and worst of our current medical system.
Some of the nursing and administrative snafus would have caused me to
pull my hair out, if I didn’t already shave my head! Some of the nursing
care embodied all the virtues of that noble profession. Of the medical
care itself, I have only the highest praise.
Brave New World
Tears streamed from her
eyes, as she ran to her father in his garden. “Daddy, you’re standing!”
He took several
steady steps towards her, caught her up in his arms and gave her a hug
that made him gasp.
“Oh, I’m sorry, it’s
still too soon to hug you, isn’t it?”
“Thirteen days after
the heart transplant and one day at home, my chest is still broken open
and the scar is impressive, but there will never be a bad time for a
hug”, he whispered into her hair, holding her gently against him. Over
her shoulder, he saw her mother and his wife smiling on the porch
together. Once again, he thanked the Lord his ex-wife and Catherine got
along so well. There was no awkwardness in the moment, just the bliss of
a family reunited by a miracle.
“We were all so
afraid, but you’re doing great. Every day in the hospital, you looked
stronger and stronger as the tubes came out and the bandages got
smaller. But I never believed you’d come home so quickly. And look,
you’re standing! No more wheelchair, not even a cane. In a few weeks we
can take walks again”. She wiped ineffectually at her cheeks, for the
tears still welled up in her eyes at the sight of him.
Arm around her
shoulder, only partially for support, he guided her back towards his
house. The women turned and entered the back door, clearing the porch
and the two chairs that awaited. As her father slowly lowered himself
into the one with a cushion, Eva took the straight-backed chair and
reflected on his appearance. He sat up straight, and his face was a rosy
pink rather than ghostly white. He was still dressed in mismatched
flannel shirt and drawstring pants, but some things never change.
“So, what’s going on
in your life?” he asked.
“Da...dee, you are
going on! This is the most amazing transformation. I... wasn’t sure
you’d ever come home from that last hospital visit. When you got the
call that a matching heart had become available, we were afraid it was
another false alarm. And you were so sick, you couldn’t even hold your
head up anymore. I didn’t know if you could take another
He settled back
gently, and she noticed how young he looked now. She had been thinking
of him as “the old man” for so long, it startled her. He had never lost
“the voice”, but now his face was animated as well.
“ I’m having trouble
believing it myself. Not only my energy, my ability to get up and walk,
but even my perception has changed. Two weeks ago I saw everything in
monochrome, as though through dirty glass. Now every leaf in that tree”,
he gestured towards the yard, “ seems individual and alive. And my
creativity has been unleashed. I’ve already planned two photo collage
projects. One about my transformation, and one in honor of you,
Catherine and all the family and friends who have sustained me during
this ordeal. I tell you, I couldn’t have made it up this mountain
without you all. When I couldn’t walk any further, you carried me. When the
pain was too great you sustained me. And when I finally awoke from the
anesthesia and realized I would return home... I cried like a baby from
joy, not the pain”.
“After they took you
into the operating room, we all came here to wait out the night. Even
Grandma stayed over. Catherine got on the Net, and sent out the word to
all your friends. A lot of prayers, in many different languages and faiths, were said
that night. And all our prayers came true.”
“God has many faces,
and speaks many languages. I feel like I’ve seen the Face of God, but
it’s only one aspect, the one individual to me”, he mused.
“And the Gray Sea,
“It’s already fading
into a distant memory. I hope I can hold on to this new sense of wonder.
But of course, I’m ready to move beyond the dead shores of that sea, and
this wonder is too precious to let fade. What do you say we go in and
see what the girls are cooking up. I’m starving!”
She laughed. “I can’t
remember the last time you were hungry! That’s great. Can you eat
regular food again?”
“Lets go inside and
She jumped up to
offer him her arm, but he smiled and stood unaided.
and the Beginning
For years I’ve lived by the motto “Why walk
and talk when you can sing and dance?” Well, I’m dancing again, and my
story is my song.
The past and the future meet in the present. . I’m alive,
and I’ll see next year, and hopefully many years after.
This story is dedicated to Dr. David Lawrence. Rest in
Peace, may Heaven resound with your laughter.