Poverty

No, not the economic condition of lacking enough money for housing, food and other essentials.

Poverty is a cat. My nephew Ben is staying with me for awhile and he brought his three-year old black-as-the-depths-of-outer-space cat. Ben named him "Poverty" as a nod to his (Ben's) economic state. Ben (not Poverty) is working hard at his new part-time job and hopes to get a car soon.

Poverty is curious and gets into everything. He also likes to scratch the furniture. Ben got him a scratching post, to which Poverty says, "Nah."  I bought some spray that is supposed to stop the scratching, but hahaha. I've been using a spray bottle to condition him, still to no avail. Otherwise, he is a well-behaved cat, content to, like most cats, laze away most of the day, When I'm watching TV he will hop up on my lap and put his face about three millimeters away from mine, then settle in and snuggle with me. 

The three of us are still adjusting to each other, but I think things are gonna work out fine.

Song of the Day: The original--by Eddie and the Hot Rods--is supremely swell. This Flashcubes version destroys it. 

Part five of Tougher Than the Rest:

Danny drove fine. He used his mirrors, stopped with impunity at stop signs, watched his speed, and aced the three-point turn. Danny did so well he hoped Bob Weinheimer was impressed enough to say, Oh, we can skip the parallel parking, Danny. You’re obviously a skilled driver. Bob Weinheimer didn’t say that. What he did say was, “Pull up next to that car across the street from the library and park behind it.” Bob Weinheimer probably chose that particular street, Second Street, because it was about as wide as the Mississippi River. Danny pulled up next to the front car. There was about ten spaces empty behind that car before the next parked car. Piece of cake. Just stay calm.

Danny went through the checklist in his head. Ok, use your mirrors. Don’t forget to signal. Look for traffic. Turn your head and cough. No! Just turn your head. Oh God…. Danny’s calm was leaking out of him. He pulled back even with the other car’s rear bumper and turned the wheel sharply right, then when he was far enough in, he turned the other direction, continued to back in, and then straightened the car out. Perfect!

Then, Danny looked in his right mirror. He was probably three feet from the curb, not exactly within the margin of error. Danny actually thought that’s as close as I’m going to get. He looked at Bob Weinheimer, who calmly said, “Try again, Danny.”  He pulled up next to the other car and repeated the process. He didn’t even need to look in his mirror this time to know he was a mile away again.

Then, inexplicably, he didn’t pull up and try again. He melted down, out of anxiety and embarrassment, and just snaked back and forth behind the original car, like a gigantic metallic, mechanical earthworm.  The panicked Danny was at least six car lengths behind the original car when Bob Weinheimer, very calmly, asked him, “Danny, what are you doing?” Somehow, Weinheimer gave Danny the absolute minimum passing grade of 65, while also making a mental note to get off the road if he saw Danny on it.

The Orange and Blue Review, Liverpool’s school newspaper, was looking for volunteers and Danny signed up. He soon discovered he was much better at writing than parallel parking, and dove right in covering sports. Danny quickly became Page Two editor. Page One belonged to underclassman Greg Kot, who deserved it. Greg was a preternaturally gifted writer who became the Chicago Tribune’s music editor. Danny wasn’t in Kot’s league but established himself as the paper’s main humor source.

The end of the semester loomed, and with it, graduation. Most of the other kids had college plans, trekking through Europe plans, or some plans, Danny had only dread. He loved high school. He had friends, and he had the Orange and Blue Review. Most important, he had structure and stability--at home, he had neither. The fridge was usually empty,. June was running with her friends, nowhere to be found.  Helen alternated between rampages and sleep marathons. Ann slept late, worked later, and closed the bars after that. And the rent was late, as usual. The Martini family structure was crumbling, even more than normal, and Danny dreaded what came next. He actually toyed with joining the military. He loved the structure it offered; when to wake up, when to go to bed, and what to do in-between. Danny would have made a terrible soldier, though. He would have washed out quickly, and knew it.

Final exams ended the year; Danny aced them. He ended up with a 91 average, good for number 41 out of 715 graduating students, and won a New York State Regents Scholarship that completely went  to waste. On graduation day, he proudly wore his cap and gown, stood in the auditorium with his classmates, and walked up to get his diploma. Afterwards, most of his classmates were headed to parties and summer vacations and then college. Danny went to a party, at his friend Dean Bowman’s house, and then he stayed there; he no longer had a home to return to. The Martinis were evicted and vacated the apartment that day, and everyone went their separate ways.

 

 

2002: Testing

 

                Danny had more frequent and more serious infections as 2001 crawled into 2002. His friend Bill Huntley passed away in December. Danny spoke to Bill one last time on the phone as his friend lay dying, a short and fraught call that was a terrible way to say goodbye. Danny was unprepared for the emotional enormity of having, and knowing he was having, a literal last conversation with a dying person. Danny knew he would never speak to Bill again and wanted to say something soothing, and profound, and meaningful. Instead, the last thing Danny said to Bill was, “What (medicine) do they have you on?”

                Bill gasped for breath as he tried to recall, then said, “Oh, I don’t know, Danny. It’s so hard to talk now. I have to go,” and then his friend hung up the phone. And that was that. Bill was just forty-five. Just a kid, really.

                Danny came home for lunch one cold and snowy February day, spent. Simply clearing the snow from his car left him winded and coughing uncontrollably. Any excessive aerobic activity, really any aerobic activity, had that effect. A flight of stairs to Danny looked like Mount Everest.  He showed up for a dentist appointment around that time and discovered the elevators were out of order in the high-rise building. His dentist’s seventeenth floor office might as well have been Mount Everest. Danny just went back home, defeated.

On that dreary day he slowly ate his lunch and contemplated his mortality. His life had gotten smaller and smaller, and he was in rough shape. His lungs felt like a bald tire that was in danger of having a blowout and that would be that.  Danny finished his sandwich and started brushing his teeth when the phone rang. He almost let it go to the machine, but something told him to pick it up. Tracy Frisch, the pre-lung transplant coordinator at Cleveland, was on the other end. Danny hadn’t committed to going on the transplant list; like Bill, he just wanted his lungs to work. Bill’s death showed the folly of that thinking. The phone call that ensued was the most important conversation Danny ever had. Tracy Frisch saved his life that day.

 

The previous summer, Danny was in Ohio visiting Steve and his wife Diane. Diane and Danny were at the grocery store where Danny spotted a frail elderly woman, nasal cannula in her nostrils, rolling an oxygen tank behind her. That tank and the woman were like conjoined twins, essentially inseparable. Danny stole a furtive glance at the woman and then whispered to Diane, “I will never never never never use one of those! I’ll die first!” Diane stayed silent. Her opinion didn’t matter, and now wasn’t the time, anyway, because Danny wouldn’t have listened. But Diane thought about her grandfather, who lived the last five difficult years of his life tethered to oxygen. She knew that Danny  had no choice but to go on oxygen if he wanted to live long enough to get a transplant.

 And Danny secretly knew it, too. That frail elderly woman was Future Danny.

 

Tracy Frisch started talking, and there was certainty in her voice, and urgency. “Danny, it’s time to begin your screening to determine eligibility for the transplant list, and the sooner the better.” She paused.  “One more thing,” she said, “You need to start using portable oxygen.”

“No, no, no,” he started to say, but Tracy, undaunted, kept talking.

She spoke without coming up for air, in a sort of filibuster. “Your oximetry tests showed us that your oxygen concentration levels are 93% at rest and below 90% with exertion” she said, “Those levels put a strain on your whole body. Every cell, every tissue in your body, needs a constant supply of O2 to function properly. The first thing EMTs check after an accident, Danny, is ‘is the patient breathing?,’ even before checking for a pulse. Supplemental oxygen will ease the strain on your system. The rest of your organs, your heart, suffer without the proper levels. We need to keep you as healthy as possible before the transplant, Danny,” Tracy said, and added, “Assuming you want to be listed.” Here she finally paused, and then she said, “Do you?”

“Yes,” said Danny, in almost a whisper. Then, louder, “Yes, yeah, yeah, I do. I don’t want to go down without a fight.”

Danny could almost hear Tracy smile through the phone. “I’m glad, so glad to hear that, Danny. And will you commit to using oxygen? Did I get my point across well enough?” Tracy asked him.

“Yes, yes, I will. I promise. But that doesn’t mean I like it,” Danny said.

Tracy laughed, a relieved laugh. “Hell, I don’t care if you like it. I don’t care if you like me! Make those arrangements today, okay?” He promised he would, and they hung up. Tracy was drenched in sweat.

You can’t make someone do something, but you can make them want to. That was one of the central ideas espoused in Dale Carnegie’s best-selling book How to Win Friends and Influence People, which Danny read, years ago. Instead of browbeating or threatening Danny, Tracy made him want to do the one thing that would buy him some valuable time.

Danny kept his word. He called Oxicare, the medical supply company and arranged for oxygen delivery.  A couple of days later, they delivered a liquid oxygen tank that looked like a cross between a beer keg and C3PO; a large, roundish device supplied the portable device Danny carried outside the house. He soon found that unreliable, and switched to the more conventional, but heavier, portable canisters.  Each supplied a few hours of oxygen and were, at nine pounds, relatively lightweight. At first. Later, as Danny got weaker, they got heavier.

For home use, Oxicare brought a rolling compressor called a concentrator, which stood about two feet tall and weighed about 45 pounds, ran off electricity and was to be used whenever Danny was home. It took in room air, concentrated the oxygen, and delivered it via a long tube and cannula to Danny’s nose. The Oxicare delivery man told Danny, “Just plug it in next to your bed. After a few minutes you won’t even hear it,” which turned out to be hilariously bad advice. After he slept just one night with the grinding and wheezing machine, he decided a leaf blower would be quieter. Danny moved the concentrator to a spare bedroom in his house and closed the door. A fifty-foot length of tubing reached not only into his first-floor bedroom but, just barely, up the steps and to the shower. Danny was fortunate he could isolate the concentrator. He wondered what people did in more cramped conditions. Slept poorly, or went mad, he guessed.

Danny made his peace with the concentrator. Heading out into the world with the tank was Danny’s biggest problem. People would stare, he knew that. People always stared at different. Danny had no intention of breaking his promise to Tracy, but carrying the tank presented a physical, mental, and even emotional challenge. The tank was heavier than he expected, and Danny felt old and infirm. Did people pity him or was he just self-conscious? He decided to just put on a happy face when he wore the tank, hoping to give the impression it was no big deal. But it was a big deal, a huge, gigantic deal.

His coworkers at Colozzi’s initially ignored the “canister in the room,” and waited for Danny to broach the subject. “Look, I’m Lloyd Bridges from ‘Sea Hunt’!” he said, a lame joke even if it wasn’t a sixty year old reference. Customers mostly ignored the monkey (so to speak) on his back. Danny didn’t appear to scare anyone away, and he apparently got zero “pity” sales, thank God. He wanted understanding, not pity. Danny looked quite unnatural, with the tank, his cannula, and his antibiotic PIIC line. He looked and felt like Pinocchio, all tied down with strings.

Herbert Bradley was Danny’s new Oxicare visiting nurse. He came about once a week to inspect Danny’s PIIC line. Herbert was a light-skinned black guy about Danny’s height and only a little heavier, who vaguely resembled Gregory Hines.  He was a Bronx native who had shed his accent but not his big city street-smarts. He was a bright guy with an ebullient personality, on Danny’s wavelength.  Herbert regaled Danny with stories from his rough, juvenile delinquent Bronx childhood, interspersed with tales of his latest schoolboy crush (Herbert was fifty going on sixteen.) Herbert was not only a visiting nurse, he was also a visiting jukebox. He broke into song whenever the mood struck him, which was usually. When that happened, he looked Danny in the eye while he sang not one, not two, but sometimes three verses. There was nothing romantic about it, but it was unusual and unnerving. Between the stories and the serenading, and because he wasn’t a multitasker, Herbert’s half-hour nurse’s visit frequently stretched into an hour-and-a-half marathon. Danny tried to move him along with limited success. Danny liked the guy- he was so interesting and funny (and knew a lot of Bob Dylan songs). He just wished Herbert was a little less entertaining.

 

Danny and April set out for Cleveland on a blustery, cold November day. Though the calendar said “autumn,” people from Syracuse knew better. Winter unofficially started on November first and lasted until April? May?  They hit moderate lake-effect snow in Buffalo, heavier snow through Erie and well into Cleveland before they finally caught a little sun. The drive, grueling enough in the summer, was a wintertime slog.

Danny was slated for an extensive battery of tests as a precursor to being listed for a transplant. They poked him and prodded him, and he gave up what seemed like a gallon of blood. They looked for everything from hepatitis to HIV, syphilis to toxoplasmosis. Danny’s blood type, determined by the common ABO test, and tissue typing were done. Both were important. Even if the donor’s blood matched, if the tissue types were incompatible, the transplant was a no-go. Donor lungs, and all solid organs, were such a precious and rare commodity. None could be wasted.

Danny had a chest X-Ray that calculated the size and shape of his lungs. If the lungs don’t fit, you must fergit, Johnnie Cochran would say; Danny kept that one to himself, lest they mark him down as “too dopey” for a transplant.  A CT scan produced a more detailed image of his diseased lungs and showed how much damage they had suffered; answer: a lot. Danny had an EKG; an echocardiogram; and a Cardiac catheterization. During this last test, Danny asked the doctor “Is there such a thing as heart cancer?”

 The doc replied, “Yes, but it’s very rare.”

“Why is that?” Danny asked him.

“If I knew that I would win a Nobel Prize,” the doctor replied. They both laughed.

                Next, a respiratory therapist put Danny’s beat-up lungs to the test. She did pulmonary function tests which measured the capacity and general function of his lungs. Danny did those tests at Upstate for years. He was tested each visit and they kept track of any changes. Danny stood in front of the spirometer and put on nose clips, then breathed in as fully and deeply as he could, then, while cheered on by the RRT, blew out as quickly and fully as he could. The two key measurements were forced vital capacity, (FVC) the volume of air exhaled quickly and forcefully in one breath; and forced expiratory volume in one second (FEV1), the volume in the first second. Despite his best efforts, his PFTs continued their irreversible decline.

                Next was the six-minute walk, where Danny pushed himself as hard as he could for six minutes. He weaved through the transplant clinic corridor, dodging doctors, other walkers, and medical equipment in a kind of crazy obstacle course.  Danny always went full bore, and the staff appreciated it. Putting forth that kind of effort showed the transplant staff he was a fighter, one of many critical factors that helped determine when and whether he’d get listed. The exercise was done without the use of  portable oxygen, and at the end of the walk, Danny slumped in a chair, wiped out. The nurse checked Danny’s oximetry; as expected, it was low, eighty-six. A level that couldn’t be appreciated or experienced by most healthy people. His reward for his gritty effort was a big hit of sweet, life-giving oxygen from the wall supply. No drug Danny ever took in his wayward youth matched the heady feeling of those six liters of O2.   

April looked sympathetically at Danny. She saw how wiped out he was, and then revived by artificial oxygen. “What does that feel like, at the bottom? You know, how you were when you sat down. I’ve always wondered,” she asked. Healthy people like April who effortlessly fill their lungs to capacity without a thought, can’t understand it. Danny had her do a little test of her own.

“Try this,” he said, “Hold your breath for a minute, or longer, as long as you can until you don’t think you can go any further, until you feel like you have to breathe. You’ll start to feel light-headed and a little nauseated, even. Now you’re me. When I exert myself, when I finish one of these six-minute walks, or climb stairs, or even have an extended coughing fit. So hold it, hold it, hold it and when you can’t stand it anymore, breathe.”

“I used to have breath-holding contests with my sisters when we were kids,” April said. Most kids did, even Danny, who always lost. She took a big breath and held it for well over a minute, then her eyes got big as she looked at Danny. A couple of seconds later she exhaled and breathed in, deeply, a couple of times. She started laughing. “Wow! I haven’t done that since I was a little kid. I did forget what that felt like, Danny,” April said in amazement, “That first breath, wow, wonderful! What a head trip!”

“I can’t do that, ever,” Danny said, “No matter how much I try to fill my lungs I can’t get that feeling anymore. Even six liters doesn’t do it anymore.” Danny said, then waved April off when she started getting overly sympathetic. “No. I’m fine. I was just showing you why I need new lungs. I don’t want pity.”

April’s eyes blazed. “I don’t pity you, Danny. I sympathize with you, yes, but not pity.”

“Ok, ok, sorry. I guess I’m overly sensitive,” he said.

April gave him a big, reassuring hug and a kiss. “I’m sorry too, Danny.”

A Song and a Book Excerpt...

I mean, what else do you need? 

Thanks to all of you who took the time to say you liked the book so far. I appreciate it.

Song of the Day: A deep, deep cut, this one from Bruce's box set, The Promise: The Darkness on the Edge of Town Story. One day, I repeated it six or seven times in the car, the mark of a great song--or a madman. Maybe both. 

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Part Four of Tougher Than the Rest: 

Danny was in his second grade class at Elmwood School on Friday, November 22, 1963. Sometime in the early afternoon, another teacher burst into the room and frantically whispered something to the teacher, Miss Collins, who began to cry. She excused herself from the class and went out into the hallway. Danny and his classmates heard loud whispering and were understandably curious. Miss Collins came back in, eyes red, but said nothing, and the class continued on as before. School got out at two-fifteen with Danny still in the dark, his innocence about to be shattered. He walked home with his best friend Richard Alden and they approached the corner of Brighton and South Avenues.  Richie’s older brother Ronnie, stood there, a “safety patrol” on duty. Ronnie wore his white safety patrol belt and had his arms up in the “T” formation that said, “nobody crosses without my say-so!” Ronnie saw his brother and, without either lowering his arms or taking his eyes off the road, yelled, “Hey, Richie! The President got shot! We don’t have a president!”

Apparently the chain of succession wasn’t one of the questions on the safety patrol test.

The President is dead? Danny barely knew who the president was. He had seen him on TV giving boring speeches and stuff but now he was dead? Danny sprinted all the way home. He had to tell his mom. He walked in just before Ann. She came in and broke down crying hysterically in front of the television, quickly joined by Helen. The assassination coverage obliterated all normally scheduled programming and completely dominated the news, and life. It was non-stop grown-up stuff that Danny didn’t understand, really, but he still felt deeply. Hushed silence and gloom filled the apartment--and really, the world--for days. And then came another moment of shock and horror a couple of days later; accused assassin Lee Harvey Oswald was lynched, live on national TV. He lurched in pain after he was shot in the stomach by Dallas nightclub owner Jack Ruby, and died the next day.

Danny got his copy of the “Weekly Reader” the next Monday and instead of kid-friendly stories and puzzles, the cover was just a large black and white photo of JFK bordered in black. Danny stared at the young president as if seeing him for the first time, and he felt real grief. He had watched the pictures of all the people filing past the flag-draped coffin, and then the procession with the riderless horse. But what struck with him the most was little John-John, saluting as his dad’s coffin went past. Danny understood John-John’s father wasn’t coming home, ever. The whole assassination and its aftermath affected Danny profoundly.

When Danny was eight, the family moved to a beautiful flat in a house on James Street, at the edge of the village-within-a-city of Eastwood.  As opposed to the boxy, noisy apartments they lived in before, this place felt like a home. It had French doors, a chandelier, and a closed-in sunporch that looked out on the busy street. Danny spent his spare time on that porch, away from the familial din, and read, drew pictures or colored in his coloring book. And he again had his own bedroom. As usual, the kids made friends quickly, this time with the Mirabelli family around the corner. Danny and June spent many summer afternoons in their pool.

James Street was a busy east-west throughfare with steady, heavy traffic. Helen crossed Danny and June across James Street safely every morning and then they continued the rest of the way to school on their own. One morning, June was sick and stayed home from school. Helen told Danny to stay home, too. She didn’t want him crossing James alone. The kid who loved staying home from school decided, on this morning, he had to go. He said “Oh mom, I’m a big boy. I can cross by myself,” and off he went.

An hour later came a knock at the door. Helen answered it and a Catholic priest, Father Johnston, stood there. Helen had a fleeting thought-- oh, he’s probably trying to get me to go to mass. The reason was much more dire.  “Your son was hit by a Syracuse Transit city bus on his way to school, and he was rushed to the hospital. He may be dead, I’m afraid,” the priest told her. That last part was wildly speculative, and unfortunate; Helen collapsed in a puddle of grief and despair, wailing and beyond inconsolable. She was almost immediately struck with a case of psychogenic aphonia--in layman’s terms, a hysterical loss of voice. She called Frank at work, croaked out the spare details, then took a cab to the hospital, poor, sick June in tow. When she got there the news was marginally better. Danny was still alive but unconscious, with a serious concussion. He broke his nose and lost three top teeth.  His prognosis was grim. Until he woke up--if he woke up--the doctors wouldn’t know what damage the concussion had caused.

Danny’s accident happened on Tuesday morning. Finally, after two excruciating days, he came to on Thursday morning. He looked around the room and tried to get his bearings. He was obviously in a hospital, and sure felt like he should be.  But Danny’s first question wasn’t “Where am I?” or “What happened to me?” but instead “What day is it?” The nurse on duty said, “it’s Thursday,” and Danny said “Oh no! I missed Jonny Quest!” Danny had never missed an episode of the prime time kids’ animated adventure and feared his streak was broken. When the laughter subsided, the nurse, who had kids of her own, explained “No, Danny, it’s only Thursday morning. You haven’t missed it yet.” Only then did Danny get around to asking his second and third, less important questions; “Where am I? What happened?”

Danny spent about ten days in the hospital in a four-bed pediatric room. Next to him was a kid named Phil, who had a clef palate; and across, a bald kid named Mark. Mark had cancer. Danny thought about those kids for years, especially Mark. A kid with pediatric cancer in 1965? Probably long gone. Danny remembered both of them as chatty and upbeat despite their problems. They all became instant friends in that room, bonding over comic books and the Beatles and naturally, Jonny Quest. Kids can be so resilient.

Danny stayed home for another week, old hat for him. He bounced back amazingly quickly and then returned to school. He regaled the other kids with fantastic tales of his run-in with the bus, all completely made up because he didn’t remember any of it. A dentist fitted Danny with a top denture plate and Danny delighted in flipping the plate out with his tongue in front of unsuspecting kids, and a kid that can do that goes to the top of the popularity list quickly.

Helen and Frank called a necessary truce during Danny’s crisis, but once he was out of danger the battles renewed. Finally, the Martinis separated in the fall of 1965. With Frank out of the house, not only was his paycheck gone but so was the parental buffer he provided during Helen’s outbursts. Frank paid child support but thirty bucks a week, meager even for the time, wasn’t nearly enough. Helen and the kids were forced to go on welfare. She was understandably even more stressed than before and flew into a rage over little things, a rage that sometimes lasted for days before she burned herself out. Danny and his sisters constantly walked on eggshells. Their little apartment felt radioactive.

Danny’s unusually mild case of cystic fibrosis, still misdiagnosed as chronic bronchitis, didn’t overly affect him. He coughed frequently, was chronically underweight, and bathrooms everywhere were at risk, but he was a relatively normal kid; smart, inquisitive and an excellent student. Danny learned to make friends easily and so did his sisters.  Even though he inherited (nature?) or acquired (nurture?) Helen’s explosive temper and her thin skin, he still mostly got along well along with other kids.

Helen and the kids continued their nomadic life, moving from their relatively spacious apartment on James Street to a smaller flat in East Syracuse when the landlord evicted them. Helen always managed to find another place but never in the same school district. The kids were uprooted and forced to say goodbye to everything they knew, over and over. Danny was a sensitive and sentimental kid. He took the losses extremely hard. When Danny became an adult, his desire for stability meant he stayed too long in a relationship that wasn’t working, reluctant to face that pain again.

Helen didn’t drive, so finding a new place and moving was expensive, logistically difficult, and usually under tight time constraints. Unpacking and settling is stressful in the best of households and it often set off Helen’s hair-trigger temper. She flew into a rage over seemingly minor things. A recurring flashpoint was the ceremonial Hanging of the Curtains Rods, which preceded the ceremonial Hanging of the Curtains. The Martini family extensive toolbox consisted of: a butter knife. When Helen tried using that “tool” to screw into hardwood rails, it produced predictable results:

“Son of a bitch!´ Helen yelled as the butter knife slipped out of her hands to the floor. Clang! She tried again and clang! “You fucker!”  The repeated clatter of the knife to the floor would’ve made a great sitcom scene but sure wasn’t amusing in real life. It drove her into a rage and then her emotional pot boiled over. She screamed at the kids and railed at the unfairness of it all. Helen’s mood ebbed and flowed like the tide-- calm for a few minutes, then a tsunami. Sometimes Helen was so enraged and stressed she threatened to kill herself as Danny and June cowered and cried. Ann was a little more jaded. She’d heard it all one too many times.

Sometimes in this manic state Helen didn’t reach half-life for hours. The kids just waited until she wore herself out and passed out from exhaustion. She usually woke up and then reacted as if nothing had happened. No apologies for her reign of terror, no “I’m so sorry I lost my temper,” just the unspoken message of forget it and move on. When Danny grew up, after a lot of painful trial and error, he learned to admit his transgressions and apologize when he was wrong. Besides, it was so disarming. There was nothing left to argue about.

 Helen always had a big “dream” of living in a trailer--a mobile home. Her dream came true in 1970 when she discovered a ramshackle and cramped mobile home for rent in an ancient, run-down trailer park on Erie Boulevard in Dewitt, a Syracuse suburb. The trailer park was right in the middle of one of the busiest shopping districts in Central New York and wildly out of place and time. The Martinis’ new home was in a great and affluent school district, Jamesville-Dewitt, and Danny liked the new school. Ann had dropped out by then but got her G.E.D. But for June, it was murder. With her out-of-style cheap clothes and her severely bucked teeth, June struggled.

Outside of school, the kids adjusted well. They always did. Both Danny and June made lifelong friends there in the park. Danny had his first real kiss and his first adolescent crush, with all the accompanying soaring highs and crashing lows.  Ann had landed a good job as a teletype operator for Western Union, and she helped out with the bills.

In September, Danny walked into freshman year German class carrying his jacket and books, stymied by the combination of his locker. A big blonde guy who sat next to Danny in the second row, asked him, “Why aren’t you using your locker for that stuff?” Danny sheepishly admitted that the three-digit combination had bested him. Steve just said, “I’ll help you with it after class” and a great friendship was born. That was one of the great “what-if” moments in Danny’s life.  Would he and Steve have become friends otherwise?  The serendipity of that moment, considering how important Steve and Danny’s friendship would prove to be in the years that followed, was significant.

The valuable real estate the trailer park sat on was too valuable. In the spring of 1972, the owner sold the park and the adjacent motel to a developer, and both were razed. The Martinis were on the move again, this time to an apartment complex in Liverpool, a nice suburb northwest of Syracuse. Liverpool was a much larger, more diverse school district. Helen had managed to finance much-needed braces for her youngest daughter, and June fit in much better at Liverpool, though she began hanging out with the “freaks” and started smoking pot.  Danny was neither a freak nor a jock. He asked June one day what group he belonged to, and she said, “The nerds!”

Danny was nerdy. He was also painfully self-aware and knew he lacked the emotional maturity of other kids his age. Other kids drove, dated, and had part-time jobs; Danny did none of those things.  He fell further and further behind socially by the time he was a senior. Though he had a few crushes, they weren’t reciprocated, and he desperately wanted a girlfriend. Laura, a girl in his senior homeroom, showed interest. “Are you going to the dance?” she asked him one morning, practically begging him to ask her out. She couldn’t have been more direct if she wrote “Ask me out” on her forehead.  Danny just ignored the question, even though she was cute and funny, and had her own car. Danny had no money, no job, no car, and no confidence.

Danny’s first job was a two-day stint at a fast-food joint walking distance from the apartment, Carroll’s Hamburgers. The first night was easy. Danny incurred a few roughly twelfth degree burns while on French fry duty but otherwise survived. The second night, though, he had to help “close.” Cleaning grease traps and scrubbing grills was too much for his tender sensibilities, though. Danny had never worked that hard in his life. He never went back.

Nichols IGA, a grocery store a couple blocks west of Carroll’s, was his next stop. Danny carried his mother’s chip on his shoulder to work, though. He packed grocery bags lighter to make them easier to carry. He and his family had lugged plenty of heavy bags home from the store over the years.  One of the register ladies, Gladys, complained. “Hey, put more stuff in those bags!” she admonished him, “They cost three cents each!”

Danny, full of self-righteousness, pulled a quarter from his pocket and tossed it at her. “There’s eight bags,” he said, “Let me know when I run out.”

One snowy evening, some perceived slight punctured Danny’s thin skin, and in the finest Martini tradition, ran. He said, “I quit!” and walked out mid-shift, a stunt right out of his mother’s playbook. One big difference-- Helen would have neither recognized her mistake nor apologized for it. Danny did both, a small sign of growth. He received a well-deserved tongue lashing and got his job back.

For a week.

Just eight days later, Danny woke up, went to the bathroom, and was alarmed by the presence of blood in the toilet. He was terrified, and also terrified to tell Helen, but he woke her with the news. True to form, she went a little nuts. As established, she was not great in a crisis. His mom, though, admirably pulled herself together and called an ambulance. She and Danny raced to the Emergency department at Crouse Hospital in Syracuse.

Danny was triaged in the ER and put in a room. He felt fine, just nervous. A nurse entered to check on him. He began to say, “I feel fine,” when suddenly his gag reflex kicked in and he began vomiting blood-- cascading it in a stream. He painted both himself and the unlucky nurse bright red. He looked like Regan, the possessed little girl from The Exorcist-- except he needed a surgeon, not a priest. The diagnosis was a bleeding ulcer, and the doctors were puzzled. Bleeding ulcers were quite uncommon in teenagers, but Danny was an uncommon teenager. His undiagnosed CF meant he wasn’t getting the pancreatic supplements his system needed and his whole digestive system was out of whack.

In 2022, bleeding ulcers are treated with antibiotics when the bacterium H pylori (which wasn’t even discovered until 1982) is the problem. If excessive stomach acid is the issue, protein pump inhibitor medicines like Nexium help reduce its production. In 2022, gastric ulcers are an eminently treatable malady. In 2022.

In 1973, H pylori didn’t yet exist, as far as the medical community knew. It wasn’t discovered until 1982 by two Australian doctors, Barry Marshall and Robin Warren. They were studying patients with gastric ulcers and Dr. Warren noticed a similarity between the severity of inflammation and the presence of bacteria. Biopsies failed to produce the desired result until a test plate incubated three times longer, and voila, they had their man, er, bacterium. They were both awarded the Nobel prize, rather belatedly, in 2005.

The standard treatment for ulcers in 1973 was a so-called “bland diet.” Ulcers, it was believed, were caused by “spicy food.” The doctors at Crouse prescribed a small amount of skim milk every half hour or so. All the milk did was stimulate more acid production in the gut and so was counterproductive. 1973, as far as ulcers were concerned, was the Dark Ages. Danny was lucky they didn’t treat him with leeches.

Dr. Brunenschweiger was a gruff, older internist assigned to Danny’s case who decided to investigate further by performing an endoscopy. An endoscopy is a tube with a light and a tiny camera that is slid down the patient’s throat, about as much fun as it sounds like. Endoscopies in 2022 almost always involve some sort of sedation, but for some reason (see: Dark Ages, 1973) that wasn’t true in Danny’s case.  He was wide awake and terrified at what felt like a fire hose being threaded down his throat.  And, while in that terribly compromised position, Danny listened as the doctor said, in his thick German accent, “Ah, I can’t see anything. There is too much milk!”--the milk he prescribed. Brunenschweiger took the scope out and muttered, “we will have to try this again.”

 “Oh no, you’re not!” exclaimed Danny, “I don’t care if I die from this stupid ulcer! I’m not going through that again.” The bleeding had stopped by then, fortunately, and Danny was released a few days later. “Make sure you eat your stupid, unhelpful, boring bland diet and drink lots of acid-inducing milk,” the nurse didn’t exactly say. Luckily, Danny had no further bleeding issues, and once again he had escaped the Grim Reaper’s icy grasp.

He lost a couple weeks of school days, though and he missed going to class; he missed school. Eight year old Danny would’ve been aghast. He dumped Calculus and Physics when he found himself hopelessly behind after going back, and had so few classes that he said he “majored in study hall.” Danny got tired of that, though and signed up for a couple of electives. He had room for a couple of electives and Miss Frigon, his guidance counselor, suggested Personal Typing. Danny balked at that suggestion, good little chauvinist that he was. “I’m not gonna be a secretary!” he exclaimed, a sentence he still grimaced at the thought of years later. Danny took the course, learned to type, and did not become a secretary, but of all the classes he took in his life, that had the most long-term value.

He, with some prodding from his friend Steve, decided he needed to learn to drive and signed up for driver’s education. He was lucky to have a good and patient instructor, Bob Weinheimer. Danny sailed through the written part of the class, but when it was his turn to take the driver’s ed car on the road, he was the one kid nobody wanted to ride with. All the other kids he rode with already had their licenses and either had their own car or access to a car. Danny had neither. All his actual driving experience was limited to driver ed, and it showed. He was tentative and nervous and the other kids in the car understandably hated riding with him.

By the end of the semester, Danny had gained confidence and was much improved on the road. It turned out that he loved driving, which surprised him. He felt ready to pass the class road test. Three-point turns were no sweat. His Achilles heel was parallel parking, but if he stayed calm he’d be okay.  If he stayed calm. The day came for the class road test. Two other confident, almost blasé, kids aced their tests and then Danny fired up the Chevy Impala. Bob Weinheimer sat shotgun, and three fellow students sat in back. They’d been riding with Danny all semester and probably guessed they’d get a great story out of his test.

They were right. 

(Title)??

9:00 PM: Ready to write a scintillating blog post. Ready to go!

9:02: Will put some music on for inspiration.

9:02-9:09: Hit “shuffle” after unable to decide what to play.

9:10: Don’t like that song. Skip.

9:10:10: Skip.

9:10:21: Skip.

9:11: Good song. Ok, here we go.

9:11-9:12: (Taps fingers).Stares at blank screen.

9:14: Skip.

9:15: Hey, where’s my phone? Uses “Find My Phone”.

9:16: Found phone but battery is at 8%.

9:17: Locate a charger, plug in phone. Says “Software Update” available. Might as well do it now.

9:18: Stares at blank screen.

9:18:20: Skip.

9:19: Ooh, that index finger fingernail is bugging me. Get nail clippers.

9:20-9:22: Might as well trim all of them.

9:23: Maybe I’ll make some coffee.

9:24: Stares at blank screen.

9:26: Skip.

9:27: Pours a cup of coffee, then throws it in the sink. What was I thinking? It's too late for coffee.

9:29: Puts fingers on keyboard, ready to type. Ok, I just need a title!

9:30: Hear a beep. Was that the smoke alarm? Tests both alarms, all okay.

9:31: Skip.

9:32: Stares at blank screen.

9:34: Hears the beep again. Pauses the music and listens for a minute. Nothing.

9:35: Skip.

9:36: Stares at blank screen. Oh, hell, I’ll tackle this tomorrow.

9:37: Skip.

9:38: Shuts computer off.

Song of the Day: Ian Hunter will be eighty-four in June. Four years older than Joe Biden. This song features the soon to be eighty-three Ringo on drums and the relatively youthful former Heartbreaker Mike Campbell on guitar.

Part Three, Tougher Than the Rest

Growing Up

 

                Fittingly, Danny Martini’s first memory was traumatic. Three older kids tied him to the top of a playground slide at the apartment complex where he lived and left him there, crying.  He was about four years old, so the memory was dim but terrifying, as it would be for any four-year old in that situation. When Danny considered the incident as he got older, he decided that A) he was the victim of a mean prank by some cruel older kids, or B) his big mouth got him in trouble. If it was B), it might’ve been the first time, but certainly not the last.

Danny’s first real memory was probably buried deep in his subconscious--a memory of slamming doors and screaming parents. As a baby he was surely often startled by the high decibel arguments from the other room. Throughout his life, loud noises almost always made him jump, probably a conditioned reflex from all that noise. Danny reacted that way to all loud noises, really.

With apologies to the Rolling Stones, Danny was born in a crossfire hurricane to parents ill- suited for parenting. Frank, Danny’s father, was the product of a closeted and missing-in-action father and an alcoholic mother. She finally chose the bottle over the boys and put Frank and his brothers in an orphanage. Frank absorbed as much corporal punishment as he could take and, at seventeen, used a fake I.D. to enlist in the Navy at the tail end of WW II. Frank returned to Syracuse after the war and found steady work as a custom cabinet maker. Most evenings he bent elbows at the bar with brother Bob. Frank was young and quite handsome, but shy. He struggled talking to girls. Then he met Audrey, a flaming redhead and fell “ass over teakettle,” as he phrased it, for her. Audrey got away, though and when his kids were grown, he admitted she was the great love of his life.

Danny’s mother Helen came from a large, dysfunctional, and desperately poor Italian family. Her father dulled the pain from his crippling depression with homemade wine. He seldom worked. Her mother was cold and cruel to Helen. She called her brutto bastardo (ugly bastard) and once beat her with a stick for losing ten cents. Another time, Helen told the kids, she was tied to a chair in the basement (“With rats crawling around my feet,” as Helen related the story) for another forgotten offense.  As Danny and his sisters Ann and June, grew older, they found Helen to be an unreliable witness, and they viewed her stories with increased skepticism. As small children, though, they absorbed every story as the gospel truth.

One night when Frank and Bob were tying one on, a pretty and petite brunette came in with a couple of her girlfriends. Frank whispered to Bob, “Hey, she’s pretty cute, huh?”

Bob said, “Whaddya telling me for? Go talk to her if you’re interested, Frankie.”

Frank never got the chance. The pretty brunette sat down next to Frank and introduced herself. “Hi. My name is Helen. What’s yours?” She was instantly smitten by the young, handsome, and clean-cut guy on the barstool next to her, and the feeling was mutual.

“My name is Frank,” he said. He could barely believe his good luck.

They had a torrid but tumultuous romance. Frank was reserved and quiet but could be mean, if provoked. Helen could provoke. Thin-skinned and hyper-neurotic, she went from zero to a hundred in a flash. They argued a lot, though it never came to physical violence. Whenever Frank attempted to shut things down, Helen turned up the heat and set them to boiling again. “And another thing…,” she’d say. She craved the drama.

After a few months, Frank had had enough. He was ready to end things when Helen surprised him with, in Frank’s eyes, the worst kind of surprise--she was pregnant. Frank did what was the right--the only--thing back in the 1940s; he proposed, and Helen eagerly said yes. Despite all the arguing and drama, she loved Frank. They quickly planned and got married at St. Augustus before Helen’s “surprise” showed. Otherwise, a church wedding would’ve been out of the question.

One night, the new bride suddenly doubled over in pain. Frank’s car was on the fritz, again. He  called a cab which rushed them to Memorial Hospital, where the ER doc delivered the bad news. Helen’s pregnancy was ectopic; one where the fertilized egg grows outside the uterus. In her case, the egg was lodged in one of her fallopian tubes, it had grown precipitously, and Helen’s life was in danger. The surgeon was able to save Helen’s life, though she was in grave danger with two quarts of blood, as she told the story, in her stomach. The baby was lost. A year later, Frank and Helen had their first child, a daughter they named Ann. Ann was born two months prematurely, an incredibly risky birth at the time, but survived. Ann was her father’s daughter in spirit, quiet and shy, the ideal child.

Five years and five million arguments later, still battling but still together, the Martinis were expecting again. This time, the pregnancy was carried to term and delivered by Caesarian section. Helen’s doctor, Andrew Port, held the baby over her head and asked her, “What do you think you have, Helen?”HeHeHHhhH

Helen looked up at the baby Dr. Port was holding. “Oh, I don’t have a girl’s name picked out. Please let it be my Daniel!”

 Dr. Port’s eyes crinkled as he replied, “It’s your Daniel.”

Daniel Michael Martini was a robust eight pounds, six ounces and the apparent picture of health.

Nobody knew, or imagined, that he was born with cystic fibrosis. CF was a much less understood disease in 1956. Clinical dogma in the fifties condemned CF babies to a short, hard life.  Kids diagnosed with it seldom lived into their teens. Mild cases like Danny’s were largely unknown.  Kids with CF had excessive salt on their skin when they got sweaty. They had a failure to thrive and had trouble gaining and maintaining their weight due to inability to absorb food properly. That symptom led to perhaps the most telling and obvious indicator--CF kids’ poop had a half-life roughly comparable to plutonium and seemed about as lethal. Even so, nobody--Frank, Helen, or the doctors--connected the dots. Danny had all the signs, but everyone thought he was far too healthy to have cystic fibrosis. CF not only flew beneath Helen and Frank’s radar; it wasn’t even on the radar.

In the twenty-first century, prospective parents are often prescreened to see if either one is a carrier of the defective gene that causes CF. Cystic fibrosis is a recessive genetic disease; if both parents are carriers, there is a one-in-four chance their child will be born with CF. All newborns are tested, as well, for a pancreatic chemical called immunoreactive trypsinogen (IRT); if that measurement is high, CF is suspected. Some states do DNA testing, as well, and when CF is suspected, a sweat-chloride test is also done.  As previously mentioned, babies with CF have salty skin from an excess of salt (chloride) in their sweat. This comprehensive approach to CF testing means that, today, few if any babies stay undiagnosed.    

Danny was a smart, sensitive, and talkative little boy. His older sister Ann doted on him. June, two years younger, drove him crazy sometimes, as little sisters do. He loved her but preferred playing by himself. Even then, Danny had a fertile and active imagination. Like most little boys, he loved dinosaurs. Helen read him dinosaur books and by the age of four he began reading on his own.  Danny knew all the dinosaur names and even how to spell them. He could spell “Tyrannosaurus Rex” forwards and backwards, a parlor trick almost nobody asked for. Ted Mack’s Amateur Hour, a popular talent show in the Sixties, never called. Every night, before he dropped off to sleep, Danny,  inspired by the Syd Hoff book, Danny and the Dinosaur, imagined how cool it would be to ride his very own Brontosaurus to school.

 When Danny was five, Helen saw a story about cystic fibrosis in the newspaper and, as she read it, grew increasingly alarmed. Danny had all the signs. Frank came home from work and hadn’t even shut the door before she ambushed him.  “Danny has all the symptoms of cystic fibrosis!” Helen said, on the verge of hysteria.

“Oh, you think these kids have everything,” Frank told her, which was largely true.

 She implored him to read the newspaper article. Frank was at the point where, if she said something was black, he’d say it was white. But he couldn’t deny she was right to be concerned. He agreed to take her and Danny to their pediatrician, Dr. Lawrence.  He was a good doctor but, like most doctors in the early sixties, he was out of his depth regarding cystic fibrosis. The CF center would have been the right choice--if there was a CF clinic. Upstate didn’t open their clinic until 1970.

Dr. Lawrence came into the exam room and Helen did all the talking. “He has all the signs of cystic fibrosis!” she told the doctor. “He coughs all the time, and he can’t gain weight. And his poop smells!”

Danny sat on the exam table and the doctor listened to his lungs through his bony chest. They sounded fine, if a little crackly. The boy was underweight with a persistent and throaty cough. Danny had never been hospitalized, though. How could a five-year old with CF stay out of the hospital? he wondered. Lawrence told Frank and Helen, “Danny is underweight, but otherwise fine. I wouldn’t worry.”

Helen dug in, an enraged mama bear defending her cub. Her son has a terminal disease, and they won’t do anything?!  “He has all the symptoms! He is not fine!” she exclaimed. “Aren’t you going to do some tests? How can you say he’s fine without testing him?”

This wasn’t the first time Dr. Lawrence dealt with this high-strung woman. He knew he needed to walk on eggshells because Helen was legitimately concerned about her son. She thought for a moment, then pointed to Danny, who had the telltale salty skin after playing outside that morning. “Look at his forehead!” she said, adamantly. “It’s salty!”

Dr. Lawrence looked at Danny, then Helen. Then he asked her, “Are you sure he hasn’t been rubbing up against the blackboard at school?” a supremely dopey question for a lot of reasons, mostly because it was the middle of July.

Danny’s mom licked her finger and rubbed it against Danny’s forehead. She angrily thrust it at the doctor and shouted, “It’s salt! Taste it, you asshole!” Lawrence declined to take Helen up on her unusual diagnostic test, but decided to humor her and scheduled a sweat-chloride test for her little boy.  The test came back negative. Back then, many mild cases like Danny’s slipped through the cracks. Cystic fibrosis was still a largely misunderstood disease.

With CF ruled out, Danny was misdiagnosed as having “chronic bronchitis,” a tremendous blessing in disguise. Danny and the whole family would’ve been much worse off if Helen and Frank knew their little boy had cystic fibrosis. Helen would have cracked under the strain. Every time he coughed she would have had a nervous breakdown. Danny’s mild case meant he had a relatively normal childhood. He had frequent coughing jags but hung in there and played outside all day long with his pals. 

Helen constantly tried to fatten up her son, to no avail. Danny ate constantly but his weight barely budged. Sticky mucus produced by CF not only clogs the lungs, it also impedes the ability of the pancreas to provide digestive enzymes that normally break down food that reach the small intestine. Accordingly, most calories are wasted without a daily regimen of prescription enzymes.  Danny wasn’t prescribed enzymes because he didn’t have CF--or so everyone thought.

Helen babied Danny. She was far too lenient with him.  She let Danny stay home from school whenever he said, “I don’t feel good.” She never asked questions or called him on it. Danny took full advantage of that, as most six- or seven-year-olds would. One day home from school led to two, then three, and then sometimes even a week. Danny dreaded going back and making up all the work he missed. The kids called him “sickly”, but they didn’t know the half of it. Nobody did.

Danny’s older sister Ann was okay with Danny being the favorite. June, not so much. She always craved center stage. June was usually the instigator and constantly created friction. Like her mother, she had to have the last word. June’s battles with her beleaguered father were marathons. Ann and Danny tried in vain to shut her down, to no avail. “Shut up, June!” they’d hiss, but she was her mother’s daughter.

Seemingly every evening, Helen aired some gripe, complaint, or grievance to Frank, who just wanted to be left alone with his newspaper and TV. Danny remembered seeing Frank’s doodles covering every white space in the paper with stars and hearts, in a futile attempt to block out his neurotic wife and noisy kids. Life in a small apartment with three needy kids and a buzzsaw of a wife would’ve been difficult for anyone, but it was like a hornet’s nest for the introverted Frank.

Most of the time the arguments were about money. Frank’s job paid well, but he and Helen spent it faster than he made it. A hundred fifty bucks a week got gobbled up by an expensive car payment, rent, food, and three growing kids who needed clothes or shoes. Helen worked part-time at Branch’s Pharmacy downtown, but she usually blew her check right in the store on toys and candy for the kids.

As a WW II vet, Frank was eligible, via the G.I. Bill (formally known as the Servicemen’s Readjustment Act) for a low-interest mortgage, something that would have let the Martinis put down roots, but he never even applied.  Helen never stopped chiding him about that. Instead of the security and stability of a home of their own, the Martinis moved constantly, one step ahead--and often behind--the landlord. Once, they moved into a place where Danny luxuriated in his own room for three whole months, before they moved out of there and back into the previous place. Danny and his sisters changed schools at least every other year. They made friends easily and then lost them, forever, in a childhood filled with loss.

At least they had each other. Danny and June, so close in age, became best friends, although not without their moments. Once, June stuck her fingers in Danny’s bowl of Jell-O and Danny lashed out. He scratched June on her cheek and left a permanent scar. Big sister Ann and Danny bonded over music. Ann and Danny sat, enraptured, in front of the TV that Sunday in February of 1964 and watched The Beatles on the “Ed Sullivan Show.” They both loved the Beatles, Motown, and the glorious mélange of styles that was AM top-40 in the sixties. The transistor radio was on constantly. They flipped back and forth between the two Syracuse top-40 AM radio stations. If the radio wasn’t on, that’s because a stack of 45s was playing instead. Ann put a nickel on the tonearm, a familiar fix to anyone from that era, if the record skipped.

The kids had each other, and they needed each other. Helen often went on a rampage over some minor problem, but was just as often fun and playful. She unquestionably loved her children, and they knew it. She taught the kids the Golden Rule, even if she couldn’t always follow it herself. The kids learned from her to empathize with the less fortunate. But her mercurial moods put the whole apartment on edge.  It didn’t take much to set her off and when that happened, the whole family paid dearly.

There was never any physical abuse, but the emotional and mental abuse was just as bad and left emotional scars. Helen and Frank’s arguments often escalated from simmering anger to full-volume rage. They screamed vile, hurtful things at one another, things no kids should hear. Often the arguments were accompanied by thrown and broken things. Often, the place was trashed. The three kids screamed and cried as they huddled together on the stairs. One time, Frank pulled a long kitchen knife and held it to his stomach. “C’mon Helen, is that what you want? I’ll do it!” Danny never forgot the yellow handle on that knife.

Even when the kids weren’t worried about their parents killing themselves or each other, they still got looped in on Helen’s adult concerns.  She verbalized every problem instead of keeping them to herself. There was no buffer in the Martini household between kids’ worries and adult worries. If the rent was late, the utilities were due, or the cupboard was bare, the kids were acutely aware. They felt anxious and uncertain thinking about how to fix those problems. Ann, Danny, and even June couldn’t just be kids, with kid problems.

Fear and anxiety, uncertainty and instability. Constant companions.

Helen’s tantrums extended beyond her family. She often argued with the neighbors, sometimes to extreme results. Helen strutted around the apartment complex one day clad in a two-piece bathing suit. Her enormous Caesarian scar showed, probably as a badge of honor. See what I went through for my kids?! Doreen, a busybody neighbor, offered the unsolicited opinion that Helen was too old to wear a bikini. Big mistake. Helen reared back and slapped, “that bitch Doreen.” Unfortunately, That Bitch Doreen called the cops and Helen spent an hour in a cell before poor, put-upon Frank bailed her out, after first telling her, “You put yourself there! Rot in there!”

That Bitch Doreen was the name of a family cat nearly fifty years later. Danny always said that if he won the Lotto, he’d spend millions on the best thoroughbred racehorse he could find and enter it in the Kentucky Derby, just to hear the track announcer say, “And here comes That Bitch Doreen on the rail!”

Helen had many, many redeeming qualities. She was generous, often to a fault. She once heard a sob story from a woman whose boy needed a winter coat, and she gave her Danny’s--his only winter coat. She was fun; she regaled the kids with stories and songs from her childhood, along with R-rated jokes. She played cards or Monopoly or Parcheesi with them, endlessly, which helped pass the time.  Helen really loved her kids, even when the pressures of parenthood meant she made some bad decisions.

But Helen was mentally and emotionally ill. She spent two short stints in a psychiatric ward--what she called “the nuthouse—once before Danny was born and once in 1964.  In the mid-sixties, medical solutions for bipolar people were crude and mostly ineffective, and generally effective antidepressants were years away. Helen probably wouldn’t have taken them anyway. While she was checked in, Frank juggled sitters, worked his forty hours, and then had to play dad and mom to three hungry kids. He did his best but was in over his head. Danny needed sneakers for gym class, so Frank took him to the Easy Bargain Center and without any idea what he was doing, bought Danny a pair of girls’ plaid sneakers over Danny’s protestations.

Taking it to the Streets

A thousand Nashville, Tennessee high school students walked out of class last Monday, April 3rd. They marched to the State Capitol to protest the Covenant School massacre. As everyone knows by now, three nine-year old kids and three sixty-something adults were brutally murdered by a heavily armed person who was, in turn, killed by two incredibly brave officers. 

The mind-numbing details of all these mass murders run together. There is no reason to discuss them any further here, except to say that guns are the number one killer of children in the United States (5.6 per 100000, versus an average of .3 in peer countries.)

45,222 kids under eighteen died by firearms in 2020. Think about that. 45,222 little caskets. 45,222 funerals. 45,222 broken-beyond-repair families.

What can be done? Background checks. Red flag laws. Banning civilian purchase of assault rifles and bump stocks. Our representatives in Congress, and our Senators, the ones we all voted in to act, to do something, either don't have the numbers to enact meaningful legislation, or, even worse, just refuse to.

It's time for a National Day of Protest. Every high school in all fifty states, not just the blue ones, follow the example of your brothers and sisters in Nashville. Organize on social media. Pick a day (or two, or three) and walk out. Refuse to go back until you are heard. 

And we will walk with you.

Song of the Day:

 

Ok, here's part two of Tougher Than the Rest...

Danny tried hauling himself out of bed but was exhausted from the coughing. He believed illness had a specific gravity--the sicker you were, the greater the gravitational pull and it seemed to double or triple in the morning when he felt like this, as if he was on Jupiter instead of Earth. Lately he seemed to have moved there. Anyone knocked out by the flu who found it a Herculean effort to flip over in bed or even just claw for a tissue knew the feeling. He tried once, then twice, to rise but Jupiter pressed him back into the bed. He breathed heavily and contemplated this latest crisis.

 Gravity had other effects on Danny. It caused his formerly boyish face to droop into semi-Nixonian jowls. Danny still had his full, dark-brown hair though-- self-described as “luxurious”-- big, expressive dark eyes, and a literally boyish figure. The latter was not by design but was instead the result of another unfortunate symptom of CF, malnourishment. He weighed about 130 pounds on a good day but didn’t have many good days. His slight frame made him look taller than his actual five-foot nine. Despite the jowls, because of his hair, people almost always guessed he was at least ten years younger. Danny told them his immaturity kept him looking young. He had finally outgrown his youthful recklessness and heedlessness. That was a good thing because Danny Martini really needed to be a grown-up now.

April was in the kitchen during this whole sequence and so was unaware of the crisis. She came back with two cups of coffee and her smile disappeared instantly as she saw Danny’s face and sensed something was amiss. She hastily set the coffees down on her nightstand and said, “What’s wrong?" Instead of telling her he went with the “picture is worth a thousand words” approach and just held out the bloody tissue. What a bonehead. “Danny!” April shouted, but at least this time with good reason. “What happened?!”

“I coughed up blood,” he said (now he tells her). “I’m okay. It stopped.” He tried to sound reassuring but instead sounded naïve; if it happened once it would surely happen again.

“But you coughed up blood! What does it mean? Oh my God, Danny!” April said. She started crying.

“I don’t know, April. It’s never happened before but it did stop almost immediately,” he said, trying to put a good face on things. Neither he nor April bought it.  “I’m calling Sacks’ pager right now,” he said. Dr. Walter Sacks was his Upstate pulmonologist, and the best lung specialist Danny ever had. Danny trusted him completely. For all his absent-mindedness, Sacks answered his pages promptly, and he returned Danny’s call in fifteen minutes.

“It’s Dr. Sacks. Did you page me?”

Danny hesitated slightly then said “Yeah, I coughed up some blood this morning. What do I do?”

Sacks was a clinical wizard but could be clueless and inappropriate at times. This was one of those times. “Well, don’t cough up any more,” he said with an appropriately inappropriate chuckle. Danny sometimes wondered if Sacks was on the spectrum.

Danny rolled his eyes, and sighed. Fantastic time for hilarity, he thought. “Can’t make any promises, Doc.” Even though Danny was five years older than Sacks, he never called him Walter, as other adult patients did. He respected the position of authority.  “How much should I be worried?” He went into the duration of the incident and the amount.

April interjected, “Ask him if we should call 9-1-1!” she stage-whispered. Danny shot her a look. Sacks went into a monologue about weakened capillaries blah blah blah and Danny tried to listen, but all he could think about was the troubling milestone he just reached in this fucking disease. “Should we call 9-1-1?” April repeated, and Danny nearly shushed her but thought better of it. The Great and Powerful Oz would’ve exploded.

Sacks finally got around to saying something reassuring.  “It looks a lot scarier than it really is. If you want to come in for some PFTs (pulmonary function tests; breathing tests that measure the strength and capacity of lungs) you can, but they won’t tell us much, really. You should probably come in and have the conversation about being listed.” The use of “The” connoted inevitability to Danny. “Being listed” needed no explanation in the CF community. It meant being listed for a lung transplant. When a CF patient’s illness had backed them into a corner, a lung transplant was their last, really their only chance. Nonetheless, a lung transplant was a huge, complicated decision and a permanent step. Danny called back after eight-thirty, and they squeezed him in to see Sacks that afternoon.

April was quiet, a quiet nervous wreck, as the two sipped their coffee. She had a habit of looking at the worst case scenario in times of crisis. Danny, as he grew older, learned not to get ahead of himself.  He said “Don’t get ahead of yourself” quite a bit, so of course he said, “We can’t get ahead of ourselves. Sacks didn’t sound worried at all.”

“Yeah, well, how much blood did he cough up?!” she snapped, then quickly said, “I’m sorry.”

Danny reached over and enveloped her in a hug. “It’s gonna be alright, April. I promise.”

“Danny, I’ve got an important meeting at 9:30. Do you want me to cancel it?”

“No, God no. Go to your meeting. I’m fine here. If you can come to the doc’s with me later, that would be nice.”

“Yeah, yeah, sure I can. I’ll meet you here at, what, two?” She rose from her chair, grabbed her purse and put her coat on.

Danny got up and wrapped his arms around her and smiled. “Two is fine. Have a good meeting and see you later. I love you.”

“I love you too, Daniel. I’m just worried,” April said, worried.

“Aw, it ain’t no thang!” Danny said and both of them laughed at how ridiculous he sounded. She blew him a kiss and left.

Danny put another pot of coffee on and whipped himself up an omelet. Despite having an omelet for breakfast every day, and over fourteen hundred eggs a year, Danny’s cholesterol was like a marathon runner’s. Until it went up he was gonna keep on eating his omelets, and maybe even if it went up. He sat down to breakfast in the silence, listened to his stupid crackling lungs and wondered what other terrible surprises they had in store. He put the stereo on, loud, to drown them out.

While he ate breakfast, Danny thought about that dinner he had not long ago with his friend, Bill Huntley. Danny and Bill met in the CF clinic about ten years earlier and became fast friends. Both were bright, with sardonic senses of humor, and that was about all they had in common.  Danny was a high school graduate who grew up in a broken home (correction: many broken homes). Bill lived in the same house his whole life in a stable, two-parent family and graduated from law school in California. Despite his illness, Bill was a successful attorney who had just landed a big wrongful death payday. Money was the least of his concerns.

Cystic fibrosis was the most of his concerns.

Bill was a month younger than Danny but had a much more advanced case of CF. He was already using portable oxygen and had been on the lung transplant waiting list for a few months. Danny watched Bill’s health steadily plummet and knew when he looked at his friend, with his oxygen and his diabetes meter and his transplant beeper, he was looking at Future Danny.  That evening, Bill slowly slid into the restaurant booth. He was obviously shaken, which was unusual for the normally unflappable Bill Huntley.

“Geez, what’s the problem, Huntley?” asked Danny. “You ok?”

Bill looked at Danny, then away. “I got the call. They have lungs for me.” Danny started to ask a stupid and rhetorical what the hell are you doing here?  follow-up question, but thankfully Bill cut him off.

“I told them no,” Bill said, with an odd mixture of anguish and resignation. And finality.

Danny’s first instinct was to scream at Bill, to ask him what the hell was he thinking, that this was his shot, but Danny wisely held his tongue. The decision was already made and all the yelling in the world wouldn’t change things or do any good now. Instead, Danny shut up and listened.

Bill then said, in a present tense that was no longer an option, “I don’t want to go through all that. I want my lungs to work!” They both realized two things at that moment; one, Bill wasn’t going to get another call from the transplant people; and two, his lungs weren’t going to work. Four months later, Bill Huntley, Future Danny, was gone.

If Danny was ever listed, if he ever got the Call, would he hesitate, too?

Lung transplants were performed as early as 1963, but acute organ rejection by the host’s immune system was the Mount Everest that transplant teams needed to scale before they could consider the complex and risky surgery successful. The body’s immune system is always on guard and loyal to a fault; anything foreign the immune system encounters, a bacterial infection, or a transplanted organ, is considered an interloper and is attacked. Lulling the immune system into a truce wasn’t possible until the use of powerful immunosuppression drugs like cyclosporine in the late seventies.

The downsides to immunosuppressants are significant. They often cause diabetes, osteoporosis, high blood pressure, kidney disease, and even cancer. Most worrisome, by tamping down the immune response, they leave transplant patients more susceptible to infection. Living on that medical tightrope meant, on average, five-year survival rates for lung transplants hovered around fifty percent. Danny had a lot to think about, but was tantalized by the idea of even five years of good health.

 

April got to Danny’s at ten minutes to two, punctual, as always. She looked at him intently and pushed the hair out of his eyes. He needed a haircut. He always needed a haircut, it seemed. “How are you feeling?” she asked him. She was afraid to hear the answer.

“I’m fine, April. Really,” Danny said. As far as I know.

Danny drove, and he and April parked in the Upstate garage. They crossed the skyway to the registration desk. They were about fifteen minutes early--Danny was always punctual, too. Danny signed in at the clinic and because CF patients risked cross-infecting other CF patients, they isolated Danny in an exam room. April joined him. “How was your meeting?” Danny asked her.

“Fine,” she said, “Did you cough up any more blood?” Right to the point.

 “No,” Danny said, “That was it, this morning.”

“That was enough!” she said. “God, Danny, that was so scary!”

 “Let’s not get ahead of ourselves,” he said, yet again. There was a knock on the door. It was Toni George, a twenty-year veteran of the CF clinic. She and Danny were old pals. Toni took vitals (blood pressure, fine; temperature, fine; and oxygenation, or Danny’s blood oxygen percentage, 93 percent, crappy). Danny and April followed respiratory therapist Connie Van Zandt, another clinic veteran, to another room where Danny did his PFTs on a breathing machine called a spirometer. PFTs measured lung function; how much air Danny took in, how much he exhaled, and how quickly he did it.

Danny put on nose clips, stood at the spirometer, and moved the adjustable arm to a comfortable position. Then he wrapped his lips around the disposable mouthpiece, like a scuba diver, and inhaled as fully and deeply as he could, and then forcefully blew all the air out of his lungs as fast and hard as possible until he could exhale no further. That measurement was called Forced Vital Capacity, or FVC.  The amount of air forced out in the first second is called Forced Expiratory Volume 1, or FEV1. In terms of lung function evaluation, those were the two most important measurements. Regular PFTs enabled the staff to chart a patient’s improvement--or in Danny’s case, regression. Danny always blew his brains out (figuratively) as he vainly tried to outdo himself. Connie noted and appreciated it (“Danny gave his best effort.”)

Danny’s PFTs were down over ten percent. The exertion made him cough hard for a few minutes, but no more blood, at least.  After PFTs, Danny and April sat down with Dr. Sacks, who began explaining the procedure for getting on the lung transplant list. Danny listened intently, but silently. He had this conversation before, years ago. That was a memory best forgotten. April didn’t interrupt once. Normally, April tended to jump in with questions and finish sentences.  Here, the sentences were so foreign she just said nothing. Sacks began to explain the extensive screening process. “They will have to do repeated lung testing, an electrocardiogram, an echocardiogram and a heart catheterization, tissue typing to make sure your tissue and the donor’s are a match, a CT scan, a bone density test, a prostate exam, and even a colonoscopy. Oh, and a few gallons of blood,” Sacks said with a chuckle as he finally came up for air.

The ideal patient was mostly healthy except for his lungs. The screening process had to rule out compromising diseases like cancer. And no smokers need apply. “You’ll be shuttling back and forth to the transplant center for months, maybe years, until you’re ready,” Sacks told him. “You can’t, or shouldn’t, have a transplant too soon. A transplant is not a panacea. It’s a high-risk operation with its own set of problems. Timing is everything, Danny. If you’re too healthy, it’s too soon. But wait too long and you might not survive the surgery or its aftermath.” Danny and April looked at each other wordlessly. “Timing is everything,” the doctor repeated. “I recommend the University of Pittsburgh transplant center, but your insurance might steer you elsewhere.”

Sacks then dropped more bad news. “Your labs show pseudomonas (a kind of stubborn bacteria common to CF patients) and you’re going to have to do a couple weeks of home IVs,” the doctor said. Danny groaned. He knew he needed to stay as healthy as possible to be listed for some future lung transplant, but IVs, to use the highly technical medical terminology, sucked.

A nurse set up Danny’s PIIC line right in the exam room. A Peripherally Inserted Central Catheter line was inserted into a large vein in Danny’s arm. That vein carried blood to the heart. The PIIC line carried the medications Sacks prescribed.  The prescriptions arrived by courier in ice-packed syringes shortly after Danny got home. He infused, or injected into the catheter, two powerful antibiotics, one after the other, for two weeks. He used the SASH method to turn a bewildering and complicated procedure into a manageable one. SASH stood for Saline-Administration-Saline-Heparin; he flushed the PIIC line with saline solution to clear it, administered the dose over a period of minutes, flushed again with saline and then used heparin, an anticoagulant, to prevent pesky blood clots.

Danny mastered the procedure, but he hated it, hated everything about it. He got a little grumpy, especially in the morning. One morning he was working his sales job at Colozzi’s, the mom-and-pop appliance and video store where he worked off-and-on since 1984. A woman came in lugging a VCR. Even though it was a warm day, Danny wore a long-sleeve shirt to hide the PIIC line and related tape and gauze. “How can I help you?” he asked.

“This VCR doesn’t work!” she snapped.

Danny looked at her receipt. The VCR was eight months old, only eight months past the return period, he thought. “What’s wrong with it?” Danny asked.

“It just doesn't work. It’s never worked,” the lady said, helpfully. Danny felt a little bubble of annoyance threatening to make its way to the surface and pop.

He dutifully plugged it in, hooked it up, and put it through its paces. “Seems to be working okay now. Can you- “.

The lady cut him off mid-sentence. “It doesn’t work! I want a refund! It’s not fair!”

Pop!

Ah. A Victim! he thought. It’s not fair! Danny rolled up the sleeve on his left arm, the one with the PIIC line and the gauze and the tubing and the tape and even a little blood. He showed her his arm, in all its technicolor glory, then asked her “Is this fair?

The lady just gaped at him, or more accurately, his Frankenstein’s Arm. She silently gathered up her VCR and beat a hasty retreat. Adrian, one of Danny’s coworkers and a talented caricaturist, memorialized the moment with a cartoon of Danny, albeit with some editorial license, with his arm exposed, angrily yelling “Is THIS fair, you dirty bitch?!”  Danny’s CF was fair game in the rough and tumble world of Colozzi’s Appliance. Once, when Danny coughed up a tiny bit of blood, he showed it to Adrian, then threw the tissue in the trash. Adrian  promptly sketched out a “Biohazard” warning on a scrap of paper, complete with skull and crossbones, and taped it over the trash can. Danny loved it and put it in a place of honor above his home computer.

Danny put in his two weeks of IV therapy, grumpy all the way. He did follow up bloodwork and visited Dr. Sacks, who said Danny’s lungs sounded much clearer. Sacks had the IV team pull the PIIC line and Danny went home, if not exactly happy, happier. He bought himself some time. Until the next time.