After all the tests, Danny and
April sat down with Tracy to discuss the results. The three settled in, and
there was a silent, pregnant pause as the three of them looked at each other.
About the only sound was the rhythmic puff-puff-puff of Danny’s oxygen as he
breathed. Then, Tracy spoke, and she was blunt. “You’re still too healthy to go
on the list, Danny. I know that isn’t what you want to hear, and I know it sounds
crazy, but we need to time transplants just right. If we list you too early, we
swap lungs that are still keeping you alive for the unknown of a donated set.
Then if those lungs don’t work-- and sometimes they don’t-- there is no going
back.” She paused, then said to April, “I
don’t think you were here when Danny and I discussed UNOS.”
April shook her head. “Ok, then,”
Tracy said to them both. “UNOS, the United Network for Organ Sharing, will
weigh a number of factors, such as Danny’s likely benefit,” she said and then she
shifted her focus to Danny, “Proximity to us, blood and tissue type, and then
they give you a blind ranking. That prevents celebrities or other powerful
people from jumping the line. As your need increases, you’ll move up that list.
I wish I could give you an idea of when, but I just can’t.”
Organ donation is an emotional
and fraught subject. A healthy donor is almost always someone who died suddenly
and unexpectedly. The organ procurement team needs to approach the survivors
on, certainly, the absolute worst day of their lives. The team’s number one
priority is finding a willing donor, but the other number one priority is
helping the devastated family salvage something, anything, out of such a fresh,
raw and untimely loss. Some countries such as Austria have an “opt out” policy--organ
donation is assumed unless decedent’s family says otherwise-- but most
countries, including the U.S., are “opt in.” The need remains far greater than
the supply, sadly. Seventeen people on average die each day waiting for a
transplant.
Tracy finally said, “It’s a tall
mountain and a rough road, and I’m mixing metaphors,” she said with a laugh. “There’s
a not-small amount of risk, but the huge reward is a chance at a new life. But it’s
not your time yet, Danny. Keep yourself as healthy as possible and we will list
you when the time comes. We will see you every three months so we can stay on
top of your condition. Sound good?”
“Truthfully, no. I’m
emotionally ready now, Tracy,” Danny said glumly.
“You’ll thank me later,” said
Tracy Frisch. She only hoped that was true.
1975: Faith
The
Martinis were homeless the day Danny graduated. He went off to Dean Bowman’s
for a party but his mom and sisters all scrambled to find a place to sleep. Helen
and Ann stayed with family friends and June with her best friend Cleo. Danny bunked
with Dean for a couple of weeks and then went to stay with his father,
stepmother, and stepsister Katrina and little brother David. Danny was
completely directionless and frightened of the myriad choices he faced now. One
choice he didn’t have was college. Higher education was not in the cards.
Except for mentally, emotionally, physically, and financially, Danny was one
hundred percent ready for college.
He knew he had to go to work, and
scoured the want-ads daily. Logistics were against him. Danny didn’t have his
license yet (not to mention, a car). His dad lived only about twenty minutes
from downtown by car but more like an hour away via Danny’s old friend, the bus.
After he waited twenty minutes for a bus was MIA, Danny stuck out his thumb,
walked backwards while facing the steady traffic on route 57 and tried
hitchhiking. That was a bold move for the risk-averse callow eighteen year old,
and it paid off. It helped that he was a hundred-thirty-five pounds and looked
twenty pounds lighter, so Danny didn’t
exactly exude “threat.” He usually got rides very quickly, often within
minutes. It was a different--some would say “nicer,” others “braver”--world in
1974.
Helen
suggested he go to an employment agency downtown. That was some of the best advice
she ever gave him, because it led to an interview, his very first one, for a
parts and electronics distributor on the west side of Syracuse, Motronics. Danny
was nervous and ill-at-ease, but the interviewer, Mark Longley, loosened him up,
liked what he saw and hired Danny on the spot. That was the biggest
break of his entire life. He worked at
the parts counter on Monday and went home, anxious and overwhelmed, sure he was
done, sure he wouldn’t go back for a second day. But Danny knew that’s what his
mom always did, never stuck it out. He had to be different, so he fought the
anxiety, went back and by the end of the week it had subsided.
However,
he was still an angry, self-righteous, thin-skinned, socially inept eighteen
year old wreck. He argued with everyone, even wonderful Josephine who
worked in the appliance department. Nobody argued with her. He slammed
phones, threw pens, and kicked a lot of boxes in frustration, until he almost
broke a toe after he kicked one that must have been full of cinder blocks. Ninety-nine
out of one hundred places would have told him to hit the bricks after a couple
of weeks, but his two bosses at Motronics saw something in Danny that he didn’t
see in himself, God knows what.
Ray
Ronson, Danny’s immediate boss, taught him the value of hard work, and he led
by example. When Danny was just hanging out behind the parts counter, Ray was busy
doing something because there was always something to do. Danny
soon followed Ray’s lead and began to fill time more productively. He was the
unquestioned “Syracuse Music Authority” and never lost at “Stump the DJ.” He
was an accomplished amateur magician, a fantastic storyteller, and skilled joke
teller. He made work fun.
So did Mark. He was uproariously
funny and enjoyed bantering with Danny. More importantly, he gently helped
Danny polish the rough edges off his abrasive personality. Mark was so smooth
with coworkers and customers, with anyone. He always had a kind word or deed.
Danny watched Mark show genuine interest in others, and use his self-deprecating
humor so skillfully and effectively. He was often the one to calm Danny after
one of his anxiety-driven eruptions.
Eighteen
years of dysfunction didn’t magically disappear overnight. Danny remained a
work-in-progress, but he paid attention and learned from his two mentors. Slowly,
he was molded into a fully functioning grownup, though it took years to shed
his abrasiveness and immaturity. His
brash nature was a poor match for the TV repairmen that came to buy parts at
Motronics. Most of them were part of the
Greatest Generation, and many were WW II vets who didn’t take any shit—and certainly
didn’t want any from a smart-mouthed punk like Danny.
Their names sounded like
characters from an early Springsteen album:
the Greaseman, Cheech, the Gork Brothers, the Junkman, the Rodent, and
Big Bob. Big Bob brought donuts every morning without fail and hung around for
a half hour or so and shot the breeze with the Motronics guys before he opened
his TV shop. He flirted with the office ladies who worked next door when they
came over for a goodie. Big Bob lived vicariously through Danny and his counter
mate Frank, always asking “Did you get any last night?” (The answer was almost
always “no” the answer, but it certainly wasn’t for lack of trying.)
Danny’s
next big break came courtesy of Big Bob. One morning, Ray was admonishing the
boys about getting to work on time, and
Danny told him, “Well, I take the bus so if I miss it, I’m late.”
Big Bob was surprised to hear
that. “Don’t you have a car?” he asked.
Danny laughed and said, “I
don’t even have my license, Big Bob. Before I can take my road test, I
need a car to practice on.”
Big
Bob shrugged and said, “I’ll take you driving, and for your road test.”
“Really? Oh, Big Bob, that
would be so great!” Danny exclaimed, and from then on, every Monday to Saturday
Big Bob parked his 100-foot land yacht (only a slight exaggeration) in front of
Danny’s apartment, slid over to the passenger seat, and Danny got behind the
wheel. Unexpectedly, Bob began teaching,
also. He reminded Danny, “use your turn signal when you pull out.” As they drove, Big Bob cautioned “Watch your speed,
especially in school zones. The tester looks for things like that.”
Bob Weinheimer would’ve been impressed.
Parallel
parking the behemoth was a real challenge, but eventually Danny got the hang of
it even though the rear of the car was in a different time zone. Finally, the
big day came. The DMV tester slid in to the passenger seat and said, without
emotion, “Let’s start the test, please.” Danny supplied enough emotion for both
of them. He drove like, well, like he
was taking his road test. When it came time to parallel park the beast, Danny thought
back to his high school road test fiasco and smiled. He was a much better
driver now. Danny pulled alongside another station wagon, properly signaled,
deftly used his mirrors, and backed that leviathan into place. The road test
was over. Even though he couldn’t think of anything he did wrong, Danny, being
Danny, was still sure he flunked.
Three days later, the mail
came. Danny nervously destroyed the DMV envelope and among the wreckage found--a
brand-new license. He ran screaming through the apartment, “I did it! I did
it!” He had reason to exult, even without a set of wheels. That would come soon
enough. The world got bigger and life got bigger for Danny that day.
After the Martinis spent a few
months couch surfing, Helen found a north side apartment in the spring of ’75. “Apartment”
was pushing it—just one room with a small kitchen and an unheated bathroom
out in the hall, but it was a roof. Helen, Ann, Danny, and a very pregnant June
soon reunited and they all slept on the floor on cheap mattresses. June, who was just sixteen, was seven months
pregnant. She decided to carry the baby to term and give it up for adoption.
Everyone referred to the unborn baby as “Ned,” a catch-all family nickname
based on an old goofy acquaintance, and symbolized everyone’s emotional
detachment to the baby in June’s belly.
Money was still tight. Ann was
a teletype operator at Western Union and made good money, but went out after
work every night and blew through her paycheck. She was only twenty-three,
after all. Danny made minimum wage at Motronics and neither Helen nor June
worked. Helen had what probably was shoulder bursitis but instead of seeing a doctor,
she complained about it day and night. She rotated her arm above her head like
she was trying to get the waiter’s attention, crying out “Ma… Ma!” over and
over. Helen habitually called for her mother in times of stress. There were two
problems with that; one, her mother never came through in a crisis, and two,
she had been dead for twenty years.
It was a bleak time. June was
getting bigger, and understandably crankier. In those two rooms, everyone
got on everyone else’s nerves. They were four scorpions in a bottle, and one of
them had bursitis. The only thing that
lightened the mood was music. Danny saved his meager pay until he had enough
money to buy a Radio Shack record player, and bought the first two albums in
what became a massive record collection; Elton John’s Goodbye Yellow Brick
Road, then his earlier masterpiece, Madman
Across the Water. Danny played Madman so many times everyone knew all
the songs by heart.
Another dreary night without
enough food, enough heat, and maybe not even enough sanity. Danny threw Madman
on again. “Tiny Dancer” played, and then “Levon”. After “Levon”, the next
song started, and then June slowly waddled out of the kitchen, hands on her
hips, sashaying across the tiny room. She had multiple disposable razors taped
to her face as she danced to the song “Razor Face.” June broke the tension and
gave everyone in that one sad, small room a much-needed laugh.
June awoke in the middle of the
night on June 16th, terrified. “Mom, I think my water broke! What do
I do?
Helen came through. She kept
her cool, especially considering all the kids were Caesarians, and calmed June.
“June, this is all perfectly normal, but let’s get you to the hospital”, Helen
said. She called a friend who drove a taxi. He rushed them to Crouse hospital. June
was finally having “Ned” and this whole episode would be behind her, for good. Danny somehow slept through the whole thing. When
he woke up in the morning, he got the news. Danny was relieved, for June, for
the family, and even for Ned, who turned out not to be a Ned, but a baby girl. June
surrendered her to the adoption agency without holding her, but felt curiously ambivalent.
She hoped the baby was placed in a loving home, with two eager parents that
were ready and able to give her the life she deserved. Yes, that’s what she
wanted.
Helen heard the downstairs
tenants were moving out and she convinced the landlord to let her have the
apartment. It was an entire flat, with multiple rooms, and even a heated
bathroom. A real apartment, and a pretty nice one. The Martinis took another
step towards normalcy, whatever that was. June wasn’t herself though. She
confided in her mom, “I feel empty inside.” Postpartum depression wouldn’t be officially
recognized by the medical community for another twenty years so what June had was
dismissed as the “baby blues.”
But was it something more than
that? One night, about six weeks later, Danny heard crying from June’s bedroom,
and he poked his head in. June was crying, again, and Helen had her in an
enveloping hug. “What’s going on? Why are you crying, June?” Danny asked her. Danny
was a sensitive kid, like the whole family. Not only was it his nature, but he
was also influenced by living with three women. Danny empathized with his baby
sister, whatever the reason. He asked again, “What’s wrong?”
“She wants to keep the baby,”
Helen said.
June started crying harder. She
said, through her tears, “I’m almost out of time to decide. The adoption agency
gave me six weeks to decide and then they place Faith for adoption.” Faith. June
had already named her baby girl.
Faith. What a beautiful name, so aspirational. Faith came
home that day, and it was like she was always there. Danny helped change her
diapers and really took to her. He loved peeking in on her in the morning to
see if she was awake. A baby girl to dote upon, a heated bathroom, his own room
to escape to—his life, and all their lives, had started moving in the right
direction.
Uh, not so fast.
“Daniel,” Helen said to her son
one hot July day, as she looked up from the newspaper she was reading, “There’s
an article about cystic fibrosis in here, and you have all the symptoms. You
should get tested again. I think you have it!” Danny listened to his mom with
as much patience as he could muster, which being nineteen, wasn’t much. No one
is more certain of their superior judgement and intelligence than a nineteen-year-old
boy. Unless it’s an eighteen-year-old boy.
“Mom,
if I had cystic fibrosis, I would’ve been dead years ago,” Danny told her. He
probably would have added, “Duh!,” if that was a thing in 1975. Statistically,
he was right. In 1959, a baby with
cystic fibrosis lived about six months, on average. By 1975, the CF mean
lifespan was under ten years, and that certainly was a mean number. Danny
already had demolished the actuarial tables. He just didn’t know it yet.
Danny
was always the good son, always the pleaser, always the overachiever, so he
called the CF hotline in the article and made an appointment to be tested, if
for no other reason but to make his mom happy. Danny arrived at the clinic and
was prepped for what was a painless procedure, a sweat chloride test (now a
sweat electrolyte test). A colorless,
odorless chemical was applied to Danny’s forearm. An electrode was then
attached, and a small electrical current was sent to the area to stimulate
sweating. The test took about five minutes; if it showed a higher amount of
sodium chloride in the sweat, that probably meant Danny had CF. A borderline
result would’ve indicated the need to repeat the test. Through the years, as
DNA testing improved, a gene mutation panel instead confirmed the results.
Danny’s
results were not borderline. Dr. Paul Schwartz, head of the cystic fibrosis
clinic at Upstate, sat Danny down in his office and gently but matter-of-factly
told him, “Your mom was right. You have cystic fibrosis.”
Danny
sat back, reeling. One day he read an article in the newspaper and then two
days later he was on borrowed time. “How can that be?” he said plaintively to
Dr. Schwartz. “Why aren’t I dead?”
“Well,
we are learning more and more about CF every year, and one of the biggest revelations
is how many young people there are like you. Mild cases like yours have slipped
below the radar. We think there are undiagnosed CF patients in their 40s and
even 50s, and those ages will increase as treatments get better,” the doctor
said. “You are in good health now and if you take care of yourself, who knows?”
Dr. Schwartz told Danny, “You need
to start doing chest physical therapy, or chest PT,” and went on to explain the
procedure to his still-stunned CF patient. “You clap vigorously on your chest
wall with a cupped hand for three to five minutes,” Schwartz said, while lightly
cupping Danny’s chest. “Do it harder than that, though,” he added. “That will loosen
the thick mucus that built up in the lungs. Then follow that with a vibration
motion, using a flat hand,” and again he showed Danny the technique. “That will
move the mucus into the larger airways,” he went on, then told Danny, “You need
to vigorously cough up those secretions. The chest PT isn’t complete without
the coughing,” he concluded.
“Coughing vigorously is the
easy part, doc,” Danny said with a laugh, then coughed on cue.
“Ideally, if there if someone
who can do chest PT to you, even better,” Schwartz said, “Now, that mucus
also clogs your digestive system, Danny, so I am going to prescribe a
pancreatic enzyme that replaces the natural enzymes your system doesn’t get,”
Schwartz told him. “You’ll needed to take them with every meal or snack.” Danny, who was fond of saying “I don’t cotton
to no patent medicine,” now needed to carry pills with him everywhere he went. He
was already sorry he got tested.
Agree with you, Zevon should be in. But how about a shout-out for Al Kooper, wo got in this time, long overdue and well deserved.
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