St. Mary’s RC Church in Long Island City

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ALL FOR JESUS THROUGH MARY

For 100 years, students who attended St. Mary’s School wrote the school motto, All for Jesus through Mary, atop every  paper, regardless of subject, so we would never forget the chief purposes of our lives as Catholics: (1) to give glory & honor to God through the pure, loving hands of His Blessed Mother; and, (2) to sanctify our souls in all our daily activities. The message was constantly reinforced, even in something as common & seemingly insignificant as a spelling test.

DYSAUTONOMIA: TAKE 1?

One of the strongest memories of my life took place in 1967 when I was a 3rd grader at St. Mary’s School. It was the first time I remember coming close to passing out. Every Sunday we were required to attend 9:00 Mass with our class at St. Mary’s Church, on the corner of Vernon Boulevard & 5th Street in Long Island City, NY. At that time Long Island City was a safe, shielded, stable paradise on earth. That’s how it seemed to me. I can assure you 99.99999 percent of the people who grew up there feel the same way. To this day our feelings for it border on the sacred. Perhaps there were certain ugly things that went on behind certain closed doors that caused trauma for certain people, but once the doors were flung open, it was paradise!

Everybody knew everybody & everybody had dozens of aunts, uncles, cousins, their grandparents & even great-grandparents in the neighborhood. Relatives lived upstairs & downstairs from each other in the same apartment building. Every Sunday you could smell the gravy simmering all over town (non-Italians call it “sauce” – Mama Mia what sacrilege!). The heavenly bouquet wafted down to your olfactory nerves from three flights up.

Across the East River from Manhattan, Long Island City was a small, urban factory town dotted with beautiful bars, especially Sullivan’s, with sawdust on the bar room floor & a great green awning stretching from bar front to curb. Sullivan’s was right next door to my grandparents’ house & owned by my best friend Karen’s grandparents. A three-generation relationship between our families began in the early 1930s. My Dad & Karen’s Mom grew up together. When they were young they’d go to their respective backyards & race up their respective fire escapes to see who could get to the top first. My Dad didn’t always win. Three decades later in summer Karen & I would spend time on Sullivan’s bar stools during the day stuffing ourselves with potato chips & soda gifted to us by her handsome but imposing grandfather. After a while he’d finally chase us out to go play before we bankrupted him.

THE BRIDGE

LIC had great restaurants (Prudenti’s, The Ha-Cha – they had a toilet that flushed up – such wonderful memories), diners, candy-stores, parks of concrete with monkey-bars & swings, and millions of arcane places for kids to explore. First & foremost was our revered, substantial but graceful iron & stone bridge on Vernon Boulevard, under which used to rumble box car trains filled with all kinds of commodities – those railroad tracks were laid nearly a century before I was born. For decades & decades the bridge overhead guarded our main street, Vernon Boulevard (nee Avenue). It provided an august, visual stability that almost made up for other kinds of instabilities difficult to manage behind those earlier alluded to closed doors. You can’t imagine how proud we were of our bridge. Multiple generations of LICers were deeply enamored of it. Always there standing strong & tall it extended from just past my grandparents’ house to the corner of 48th Avenue (nee 6th Street). We called the streets by the same old names our parents & grandparents did, even though the City of New York, for some idiotic bureaucratic purpose, re-branded them in the 1940s (I believe).

Generations of children took the greatest delight climbing on & walking over the bridge every day of their lives. Only the bravest boys would dare haul themselves 20 feet up to the top to trip the light fantastic along thin-as-tightrope iron beams. It was very nerve-wracking to watch them do it.

Ramparting the edge of the sidewalk next to the bridge was a commanding, redoubtable pebble-covered concrete wall, half a block long, hand-built by tough, brawny Irishmen (LIC’s original residents) long gone from this world. They made sure they didn’t leave this realm till they had given Long Island City its distinct & distinguished wonder. Over the decades thousand upon thousands of boys & girls were compelled to peek through the famous eyehole on the right end of the wall to gaze 40 feet down on train tracks that for 100 years carried goods out to Long Island, then returned to Manhattan with potatoes, meats & other food products grown on fertile Long Island farms, along with various dry-goods & wares city dwellers must have clamored for. Never once did I miss an opportunity to look through that hole when I was passing by. That glorious bridge & magnificent wall bordering it not only belonged to us they were part of us, and still are – even though loathsome, faceless powers-that-be took them down.

THE TRACKS

During the day, while the trains were out on their runs, my friends & I (dozens of us) played on the tracks across from my house on 6th Street. Our six-family apartment house, which we owned, was directly across from St. Mary’s School. Entre nous were those broad tracks sitting well below ground level. Our school, which my father had also attended, was visible through a chain link fence bordering our playground of tar. Forty-five degrees westward from my stoop loomed St. Mary’s majestic spire. Performing its purpose of reaching up towards heaven, drawing eyes & hearts with it, the steeple was always in view, seeable from everywhere in Long Island City – that was the real girder stabilizing unsteady psyches in our town. You could see it from the Long Island Expressway and you could even see it through the binoculars atop the Empire State Building that used to cost a nickel to look through.

Down on those tracks we were fascinated by dying electric eels that had somehow slithered their way far east of their home, the East River, over to where we were playing, a long block and a half from the River. The eels would give off their last shocks as we warily poked at them with sticks. At times we saw giant “railroad” rats ungainly lumbering around in the distance or lying dead in the lanky weeds. There were grasshoppers & butterflies everywhere & we spent hours catching them. On many of my solo expeditions around LIC I would catch lizards & bring them home – out the house they went the instant I walked in the door. Except for this one amazing lizard I picked up over by the bridge to Greenpoint. Because it turned out to be a chameleon my parents let me keep him. His new home was now a big tank Daddy bought, which was kept in the cellar. My sisters & I loved watching that chameleon change colors.

THE SEASONS

Everywhere you looked in LIC there was joy to be found. Especially in summer. Those two months off from school we played outside from sun-up till past sundown. Picture yourself, if you will, standing directly in front of our apartment house. There was another the house to the left of us. In between was an expanse of untamed wilderness my friends & I loved to traverse. As we sprinted as fast as we could playing tag, sticker bushes tickled our arms. We were so free! We played Potsie, Jump Rope, “A, my name is Alice & my husband’s name is Al, we come from Al-a-ba-ma just to sell you Apples!”, Catch Flies Up, Kill the Cat (we were the cats “killed” by someone throwing a ball you hoped to dodge), Stoop Ball played with “Spaldines,” “Johnny on the Pony 1-2-3,” Freeze Tag, Giant Step, Chinese School, Red-Rover, Ring-a-levio, and more games than I have room to name. Mr. Softee came everyday & parked in front of our school practically all day. I can still smell the diesel from that truck & to this day associate the aroma with vanilla ice cream. St. Anthony’s Feast with all its games & foodstuffs was always the highlight of our summers. Its religious significance was of course pre-eminent. All in all, it was tons of fun.

Winter was just as much fun with its own kind of magic. For example, out the back door of our cellar was a rectangular concrete patio with a short bordered wall leading out to our lawn. On the left side of the patio Daddy used 2x4s to frame a 10 by 12 foot area & filled it with water. The next day it was frozen over & voilà, my sisters & I had our own ice-skating rink! If that isn’t magical & wonderful I don’t know what is. A few months earlier it was amazing to watch my father & grandfather cut through the floor of our apartment into the cellar to start building us a nice long kitchen & cozy half-enclosed den where we watched TV.

AN UNHAPPY MISHAP

Built into the right wall bordering the den was a beautiful wood & glass fish tank my father made. My guilty conscience obliges me to talk about the “incident” that happened with that fish tank. Briefly, my middle sister & I stood tippy-toed on the golden-brown moneypod arm of the cheap but comfy couch Dad had picked up for us on one his many Naval Reserve cargo flights to Vietnam. In order to get a better look at the fish we pressed our noses right up against the glass. We had been told a million times not to lean on that tank. Somehow it . . . (swallow of remorse) . . . went through the wall, crashing into a zillion pieces. Fish & glass were everywhere. My poor mother was mopping up a veritable ocean for what seemed like hours. (Noah would have fled this flood!) I have never seen so much water and broken glass in my entire life. Umpteen gallons had been propelled outward in a massive wave covering the full length of the kitchen. It was an oscillating tide which flowed back to us, back again to my mother, and back to us yet again. Carried along on this force of nature were our unfortunate fishies & the uncountable shards of fractured glass.

To this day I can’t think about the fish or how upset my mother was. She actually said the thing: “Just wait till your father gets home!” I don’t remember The Wrath of Daddy showing up that particular night. However, I’m sure we got what we deserved. There were no more fish after that. Time passed & all was forgiven – but NEVER forgotten I assure you! (You know I’m still sorry about that, right Mom & Dad?) Moving on from the FISH TANK FIASCO, the daily pleasures of LIC continued unabated.

PAISANS, MICKS & FATHER O’MALLEY 

In every season Long Island City was filled with Irish & Italians all driven by the same moral code. That code came from our shared faith. For at the center of everyone’s life in Long Island City was God’s house on Vernon & 5th, our cherished and beloved St. Mary’s Roman Catholic Church. Several times a day her chimes would ring out through the neighborhood the comforting tune, “The Bells of St. Mary’s.”

Back now to where this story started, there we were this particular spring Sunday morning in 1967, nearly all 50 of my classmates in attendance, following the Mass with our missals, guarded by (I meant to say) chaperoned by our teacher, Sister Mathilde, RSHM – Religious of the Sacred Heart of Mary, a French Order, though most of our nuns were Irish.

Year after year every 3rd-grader at St. Mary’s called her Sister Matilda. We couldn’t pronounce any of the nuns’ French names. For example my first grade teacher, Sister Coeur de Marie, was to us Sista Kerda Mary. Mostly we just said “Sister.” Except for our principal whom we addressed as Reverend Mother. We were taught to be respectful.

Whenever an adult walked into our classroom we stood up as one. Girls curtsied and the boys gave a deferential bow. For example, if the Pastor suddenly came through the door, after we made our curtsies & bows, we’d vocalize in an earnest sing-songy unison: “Good morn-ing Fa-ther Camp-bell!” “Good morning boys & girls,” Father would respond with his crinkly Irish smile. I’m so glad our teachers made sure we were sweet, polite, well-mannered, civil and courteous. 

At Sunday Mass we girls wore our school uniform beanies on our heads out of respect for & in imitation of the Blessed Mother. At some point during Mass I suddenly started feeling “funny.” I didn’t know what was wrong but I knew something was wrong. Instinct told me to get outside immediately. I had no way to ask permission of my teacher, who was down the opposite end of the pew. Neither could I get out of the pew unobtrusively for I had been the first one to enter & was all the way to the inside squeezed up against a marble column. How I wished I could have just “dialed O for O’Malley.” But I couldn’t. That Father O’Malley didn’t exist. The closest I could get was Bing Crosby. And he was no doubt attending early Mass in his own parish 3000 miles away. So I was on my own. [If you don’t know what I’m talking about, please watch “The Bells of St Mary’s” immediately — if not sooner!]

It was a drizzly day so I grabbed the umbrella Mom had put in my hand that morning. The only thing my brain could get across to me was to get to the only side door leading out of St. Mary’s, the north side, the Gospel side, onto 5th Street, one street over from mine, as fast as my legs could carry me. But how was I going to get out of my pew? I could feel the time to act fast slipping away, and me with it. To leave the church I had no choice but to climb over every single kid kneeling between Sister Matilda & me. It was like that scene from Bugs Bunny: “Pardon me…I’m sorry…excuse me…pardon me…I beg your pardon…pardon me…excuse me.”

Sister Matilda (Rest in Peace), who we secretly referred to as “Mighty” Matilda (because let me tell you, she was one tough cookie & scare-reee), could not believe her eyes. In a shocked, testy whisper, with her animated crooked index finger demanding my immediate return, she repeatedly ordered me to get back to my assigned place. Unfortunately I couldn’t obey that order. My body was giving me a higher command. (Sorry Sister.)

When I got out onto 5th Street & the cool air hit me, the dots in my field of vision began to fade. I felt a little better but not well enough to go back inside to Mass. So, I just went home. Never told Mom what happened. Although my mouth constantly ran amok with childish malarkey, I could be rather taciturn about certain things. Still am.

In 1917 A. Emmett Adams composed the music & Douglas Furber the lyrics for “The Bells of St. Mary’s.” The words were re-written for the 1945 RKO Leo McCarey film of the same name. As the unforgettable “Father O’Malley,” Bing Crosby gave the world the definitive interpretation of the song, so meaningful to 4-5 generations of Long Island City Catholics. Accompanied by “Sister Benedict” (Ingrid Bergman) & a choir of “nuns,” Mr. Crosby threw in a bluesy coda that surprised everybody!

Above image belongs to LEO MCCAREY FILM COMPANY. Used here by permission.

I think I had a propensity for dysautonomia my whole life, which comes from my father’s side. After the near-fainting incident in 3rd grade I had a very odd thing happen to me in 6th grade. I don’t recall being sick with anything in particular. This one day I simply fell into a weakened state. I suddenly couldn’t go out & play. When I tried I didn’t last long. Kickball, Keep-Away, Running Bases, SPUD, Hide & Go Seek, you name it, I couldn’t finish the game. I couldn’t even ride my prized purple banana-seat bicycle on which I had popped many a wheelie, proudly riding down the street balanced on just my back tire for quite long periods of time. Mostly I rode everywhere without hands on the handlebars. No longer was any of that part of my daily enjoyment. Whatever the activity I soon had to come back home & lay on the couch. After a few days I finally convinced my mother I couldn’t go to school.

Mom was always suspicious when there was no red throat or fever to back up our declarations of “Mommy, I don’t feel good.” Maybe there was some test coming up we didn’t want to take? Like everybody else we went to school with colds, in snow storms, etc. We didn’t miss school unless we were really really sick or 10-feet of snow was blocking the side door. One time it was.

In the famous blizzard of 1969, the same year this episode took place but not the same time, my NYC fireman father got up the morning following the storm & started putting on all the extra fireman gear he had stashed in the basement. It went over his clothes, winter coat, hat, gloves & rubbers. “What are you doing, Johnny?” asked my mother, as Dad was piling on layer after layer. “I’m going to work, Betty,” he answered matter-of-factly. When he was fully outfitted he headed for the door. He planned to WALK from our house in West Hempstead, Nassau County, ALL THE WAY TO HIS FIREBOAT (renamed The John Glenn after the Lt. Colonel’s Project Mercury mission in 1962) moored at Fort Totten, Queens – 12 MILES AWAY – and that was parkway driving distance! First he had to shovel his way out of the house since there was at least a five foot drift wedged up against the side door.

The storm had dumped about 3 feet of snow. Bitter-cold winds were busy piling it up into man-high mountains. Roads were unplowed & therefore impassable. In other words, ya couldn’t drive anywhere! My mother pleaded with my father not to attempt such a crazy thing. She was stupefied he would even think of it & afraid he wouldn’t make it. Probably get stranded along the way, or worse. I remember the panic in her voice. “Johnny, you can’t!” she kept saying while he was getting his gear on. It said on the News people had died because of the storm & she didn’t want her husband becoming another statistic. (Providentially, dysautonomia was not yet a perceptible factor in Dad’s life. See next chapter, “Fainting Forbears.”) No matter what my mother said Dad wouldn’t listen to reason. He was expected at work & that was that. He was supposed to start a “72” that day (a 72-hour shift). Three to five measly feet of snow and an impossible 12-mile trek ahead of him wasn’t about to get in the way of that shift. So off he went.

I can still picture myself watching out the front storm door as my father trudged away from home, awkwardly picking up his fire-booted legs in order to get down our street through the massive snowfall. Meanwhile whipping winds were building up colossal white peaks every second. Daddy had to walk a mile just to get to the parkway! Once he got on Southern State some nice snowplow driver gave him a lift for a mile. Hours later on the Cross-Island a cop picked him up & drove an exit or two till the officer had to go about his own business. So Dad walked very nearly the whole 12 miles to the fireboat. I believe it took him the better part of 10 hours. My father’s endeavor went well beyond the call of duty. He should have gotten a medal. Certainly General Patton would have been proud of him. While that’s the stock I come from I guaranTEE you this particular chicken (me, myself & I) would never have attempted what my father attempted and managed to accomplish with such breathtaking firmness of purpose.

Meanwhile, back at the ranch, concerning my situation, there was no getting around my mother when it came to staying home from school. This one time she relented though. She took me to the doctor. He & his tests had no explanation for what was wrong. The idea of “mono” came up but was ruled out as I had no fever, no cough, no chills, no headache, no white tonsils, no swollen glands, no enlarged spleen & normal blood work. So what the heck was it then?

Based on what I know now my guess is that my blood-pressure was falling too low whenever I stood or walked around. Blood was probably pooling in the legs, not getting up to the heart & the brain. I truly was unable to go to school or play inside or outside. I vividly remember spending my days propped up against my bed pillow on the olive green couch in the living room. Watching Hollywood Squares & The Mike Douglas Show was about all I could do. In that legs up position my blood-pressure was more stable. As soon as I left the couch I would feel worse again.

Every single solitary day my mother went to school to get my homework, which I wasn’t up to doing. I couldn’t concentrate. After three weeks or so my parents decided I couldn’t keep missing school like this so they told me I had to go back. I knew I wasn’t ready but I had no say in the matter. I couldn’t explain what was wrong anyway. The state of weakness lasted several months. I would not be surprised if what I had experienced was a mild but prolonged bout of dysautonomia.

Three years later when I was 14 I passed out making my way to the bathroom in the middle of the night. I didn’t know at the time I had just come down with strep throat. As I was leaning against the bathroom door sliding down to the floor into unconsciousness I remember calling out weakly for my mother, but she didn’t hear me. She couldn’t possibly. I never told her what happened that night. After the fact I felt self-conscious about these things and, as mentioned earlier, could be very tight-lipped.

Two years later I fainted in gym. This happened outside on the track, after being made to run two 50-yard dashes in a row – each time against two girls on the track team. Whoever came in third had to run the race again. It was nearly the end of 9th period so there was no chance for me to catch my breath for a moment. Even though I was barely a toe behind the other girls I was forced to immediately run again, against two more track stars. I collapsed at the end of that one. Everyone huddled over me until I came to. I didn’t know what happened at first. My gym teacher asked if I was all right & I replied automatically that I was. She didn’t think to send me to the nurse’s office & it didn’t occur to me to go there either. By that time class was over and so was school. I went to my locker, got my things, and walked home. Didn’t tell Mom about that either. It’s not like it happened all the time. These were all isolated incidents. And anyway, in 1975, who ever heard of dysautonomia? (They didn’t know too much about it in the early 2000s either. Can’t tell you how many times I had to teach doctors how to pronounce the word.)

Later that summer my best friend Nancy’s mother took the two of us see a Mets game at sweet old colorful Shea Stadium. (Why do they have to tear down everything that’s good?) We sat close to the field in the yellow box-seat area on the 3rd-base side. (Back then box-seat tickets cost $4.) It was a glorious summer day. Then one of those “things” happened. Up till then everything was marvelous. Had a delicious hot-dog & soda, probably a pretzel. The sun felt good – for a while. Of course there was no shade in the box-seat area. I don’t remember how the game went or anything else because the “thing” that came out of nowhere started making me feel faint. I quickly excused myself & walked up the ramp out of the sun into Shea’s shady inner sanctum inhabited by all the vendors. Within a few minutes I felt normal so I went back to my seat. Sixty seconds later I had to make the trip into the shade again. I think I fibbed to Nancy’s Mom & kept saying I had to go to the ladies’ room. I couldn’t explain what was happening, which always added to my angst. I could still see the players doing their jobs in the glaring sun. I distinctly remember wondering to myself HOW they were able to run around on the field when I couldn’t even sit in my seat. I couldn’t understand how everyone else was able to stay in their seats with Flushing Meadow’s July sun bearing down on them. I spent the whole game in the shade, sometimes getting down on my knees. I’d come back to my seat now & then swearing everything was ok, then leave again. I just couldn’t stay outside. Cold sodas went only so far mitigating a crisis I didn’t comprehend. I think Tom Seaver was pitching that day. He was my favorite but he took second place to my body’s demands. At least I didn’t pass out! Had I stayed in my seat I would have.

Summer is the most difficult time for people with dysautonomia. Just this morning I tried to walk around the block by myself. I stupidly went without my phone, water, or a hat. Although my weather app said it was going to feel like 93° later in the day, I thought I could manage a little walk in the morning since there was such a nice breeze going and it was still only in the 70s. Nope. I nearly collapsed around the corner, barely 50 feet from our front door. Fortunately I made it back in one piece, un-fainted.

In 1978 I fainted coming back from a quick middle-of-the-night trip to the bathroom. As I approached my bed I started seeing dots in my vision. Fortunately I passed out with most of my torso & arms on the bed. No, I didn’t tell my mother about that one either but I do remember going to the doctor & telling him what happened. He said, “Don’t worry about it. It’s nothing. Just a little vasovagal response. Doesn’t mean anything.”

In 1981, after minor surgery to remove a pilonidal cyst, I passed out in the bathroom as soon as I got home. In 1984, after a laparoscopy for endometriosis, I passed out in my bedroom the minute I walked in to put away my overnight things. (It seems an odd phenomenon that so many women with dysautonomia have had endometriosis.)

PS – There’s another reason I never told my mother about any these events. She was born a worrier. She had a lot of things on her mind & I didn’t want to give her yet another thing to fret about.

My Dad (Rest in Peace), born in 1925, was diagnosed with dysautonomia at age 79, in 2004, the year after I was, by the amazing Dr. M. I literally had to force Dad to go with me to see the doctor. Dad already had a cardiologist & saw no reason to go see another one. He started passing out in 1985 when he turned 60. When Daddy passed out he really passed out. Since he had very high BP the drop was so abrupt he would hit the floor fast & hard. (Two and a half decades later he would need oxygen to fully bring him around after an incident.) It was extremely traumatizing to witness his collapses. I was the one who witnessed most of them. Other times Mom would make panicked calls to come revive Daddy as hubby & I lived only a few houses down. Sometimes Dad could feel it coming on & would call me himself – so as not to worry Mom.

My father’s first encounter with unconsciousness happened at age 9 when he fell off the back of the trolley that ran in front of St. Mary’s, right by the the Vernon/Jackson subway entrance. He hit his head on the giant unforgiving cobblestones of Vernon Avenue (as the roadway was then designated). When he came back to awareness he did not know who he was, who his friends were, nor did he recognize his own parents when his friends brought him home. Naturally this was frightening to everyone, especially the injured little boy. Their son kept losing consciousness in the house so my grandparents brought him to the hospital. Dad remembered passing out on a gurney in the hospital elevator as they were bringing him to the children’s ward. He was in & out of lucidity for days. What were doctors going to do for him in 1934? Just watch him & send him home when he knew who he was again. By God’s mercy he recovered all his faculties & grew up to be an extraordinarily admirable man. How much this head injury played into Dad’s dysautonomia we will never know. I think we can say with surety, it didn’t help.

I’d like to end this passage on a bright & positive note. My Dad would tell me this story on occasion & I will always treasure it. It seems at midnight on the day I was born, November 24, 1958, my father was leaving the hospital to go home. When he got out onto the street he looked across the East River up & saw the most spectacular sight: the full moon was sitting directly on top of the Empire State Building, perfectly centered. Although he lived in New York his whole life & the Empire State Building was always in view from Long Island City, he’d never seen this phenomenon before. It thrilled him and he took it as a special sign about the birth of his first daughter. It brought a smile to his face & filled him with tremendous pride & joy. I think he felt 10 feet tall. I so loved hearing the story & seeing the look on his face whenever he told it.

I hope you know, Dad, how much I love & miss you & Mommy.💔

Grampa (Rest in Peace), my Dad’s father, born in 1896, was given a qualified diagnosis of dysautonomia 33 years after his death (in Italiano – trentatré anni dopo la sua morte) by Dr. M as well, when he learned from my father the details of Grampa’s fainting history. It was the first I’d ever heard of it. Dr. M deemed it a fair probability Grampa had the disorder as well, especially since Dad & I both had it. Dysautonomia often runs in families.

Antonio Passarella had begun passing out in his 50s. He also had high blood-pressure. I don’t know if there was any BP medication back then. If there was he probably wouldn’t have taken it. Stubborn Italian. Besides, what would a poor boy who grew up in a shack in Potenza know from pills? My grandfather knew what was important in this realm: his Catholic faith, family, abiding love for & allegiance to the country that had so generously allowed him to come here & become a citizen, kindness, courage, manfulness, hard work, how to make things grow, how to survive & protect his family, and all the other vital skills & lessons his parents taught him in the less than 20 years he was with them in Italy.

Decades later, on his way to plastering jobs in Manhattan, there were several incidents of Grampa passing out on the subway. One day, working on a scaffold in Manhattan, he fainted again & fell. Fortunately he didn’t fall too far & wasn’t seriously injured. After that incident my three aunts called Grampa’s boss (behind his back I might add), thus ending their father’s life work as an extremely skilled plasterer – the profession of so many Italian immigrants who came to America in the early 1900s. “Plasterer” hardly describes the moving, eloquent work my grandfather did, for he was a creator of beauty, a genuine artist.

The most active man anyone ever knew was absolutely fit to be tied about that phone call his worried daughters had made to protect their father. His work graced some of the most famous buildings in New York. From now on his talents would have to be totally focused on creating grottos & fountains for family members & keeping his two-family apartment building running smoothly. Downstairs on the street front they had a lawyer for a tenant whose office was in what used to be my grandparent’s candy store. (All I ever heard when I was in my grandparents’ apartment one flight up was “Stoppa running! Stoppa yelling! Risi’s a-work-a downstairs!”) There were always never-ending repairs needed over at at St. Mary’s & at the convent to keep Grampa occupied. There were no disability checks for him though. He just stopped working; stopped driving too. All told he was a great GREAT man as was his son. Trite as it may sound to some, their like will never come again. By an unhappy coincidence Grampa died on my 10th birthday. I will never forget our last meeting some months earlier.

By then we lived on Long Island in a small one-family house down the street from my father’s youngest sister who lived & still lives in a great big colonial on a fair-sized plot of land. With what turned out to be (for once) perfect timing, I set off on my bike in the direction of my aunt’s house & saw my grandfather standing all alone at the edge of the big driveway behind his youngest son’s car. (Uncle Junie always had to drive my grandparents out to Long Island since Grampa didn’t drive anymore. Now I finally know why he didn’t drive. It was always a mystery to me then.) I sped up to get there ASAP & greeted him with a loud “Grampa!” I didn’t know they’d come out our way & was terribly happy to see The Great Man. Jumping off my bicycle I gave him a kiss on the cheek as he bent down to hug me.

“Eh! Watta you doon?” he wanted to know. My usual answer to that question was “Nothin’.” He looked around & behind him. No one was there. Reaching into his right front pocket he pulled out all his change, fumbled through the coins & handed me a quarter. “Here,” he said as he placed it in my hand & closed my fingers over it, “take-a this.” Was I ever glad to get that 25 cents. He was always so generous. “Thanks Grampa!” He raised his first finger & began to wave it left & right. “Doh-nah tell no-body!” he instructed quietly but firmly. Had I opened my big mouth there would have been six sets of grubby little paws in front of him within seconds demanding their share of his bountiful largess. With seven young grandchildren living on one street & perhaps not enough quarters to go around, Antonio Passarella had to handle his financial magnanimity with prudence. I promised him I wouldn’t “tell nobody” & I kept my word. I kissed him goodbye, got another warm hug, the last one I would ever get from him, & pedaled off for my daily joyride. What I wouldn’t give to spend just one more minute with him.

A dysautonomia post-script: I have several paternal cousins who have experienced  dizziness, feeling faint or weak during their lives. Perhaps they have a very mild form of the condition and are not affected systemically.

On the evening of May 8, 1997 my life took a devastating turn. A man who had been drinking rammed his enormous SUV into my little blue Toyota’s front passenger door, which left a three-dimensional tire impression as high as the door itself, sticking outward toward the world. It looked as though someone had sculpted it onto the car.

When he suddenly swerved from his lane into my car, I hit my head on the driver’s window & was knocked out for a second. I immediately developed a severe headache and felt dizzy. We both pulled over & exchanged licenses. Right away I smelled alcohol on his breath. Not just a little; the man reeked. He wanted to leave the scene but I insisted he wait.

The side of the road we were on had no houses, just county court buildings & parking lots. So I ran across the 4-lane residential road to find an impartial someone who would corroborate the indisputable fact that the driver who hit me stunk to high heaven of liquor.

No one answered at the first house. The man who answered at the second house said he wouldn’t come to the scene because he was a lawyer. What the what? I reminded him he was a citizen as well as a lawyer & I, his fellow citizen, needed his help. The driver was in such a hurry to get going I was afraid he would just take off, so I was feeling slightly panicky – as well as dizzy & headachy. I begged the man to come. Reluctantly, he came across the road with me. He refused however to go anywhere near the other driver. After five seconds or so he said there was nothing he could do as he didn’t want to get involved so he went back home. My unspoken thought was that this legal practitioner was a perfect candidate for Dante’s Ninth Circle of Hell.

I had no choice now but to call the police to the scene. The drunk driver didn’t want the police called. I wonder why? He took out two hundred-dollar bills and offered them to me. I didn’t take his ridiculous bribe. Financially, though, I would have been better off, considering the aftermath of this event.

The police arrived in two minutes – the station was around the corner. As soon as they found out the other driver was a resident of their ritzy town and I was not, they made me go stand about 20 feet away while they talked to the ritzy resident privately. With a finger flick I was called back to rejoin what now looked like a merry group.

Without even hearing my side the officers had taken everything this man said as the gospel truth. The only trouble with that is he hadn’t told the gospel truth. Not even close. In other words, he lied. They weren’t really interested in my version of what had occurred but I stood my ground & they listened my side of the story as well. I let the officers know I felt dizzy and had a severe headache. They stared me up & down & said I looked fine. At my very persistent behest they administered to the other driver the walk-a-straight-line part of a sobriety test, during which the man fell over several times. The police said that didn’t mean anything because “he has a bad knee.” “Don’t you smell the alcohol?” I kept asking. “He had one beer with a steak dinner,” they kept replying. They never did a breath test to get his blood alcohol level. You get the picture.

Anyway, it was a Thursday night. One of the officers stated their report would be ready on Monday & I could pick it up at the station. I thought that was the end of our interaction. I was wrong. The two male officers had some things they wanted to say to me.

I was by myself that night, on my way home from evening Mass. That day was a Holy Day of Obligation for Catholics. I was dressed in a skirt below the knee & had a small round black veil covering the top of my black-haired head that I’d forgotten to take off. It blended in so well you could hardly see it. But they saw it. (My husband & I are pre-Vatican II Traditional Latin Mass Catholics who don’t go along with the Novus Ordo changes of the 1960s.)

Given the population of the ritzy town at the time, and given the last names of the officers, I am more than fairly certain both of them were Catholic – but not Traditional Catholics. But because they were Catholic & older than me they knew what that veil meant. To them it was an anachronism & apparently they didn’t like it. It seemed to bother them – a lot. They proceeded to make several belittling remarks about it & me. It was rude, unprofessional, & positively surreal.

When I went Monday to pick up the report it wasn’t ready. I had not been feeling well since the accident. Waiting my turn on line I suddenly felt like I was going to pass out. Very quickly I sat down on the floor. The officers present saw me. Not one of them said a word or offered a hand. After a few minutes I was able to get to my feet again.

A few days later the report was in. I couldn’t believe what I saw. The drawing depicting the accident was completely false. The description written by the officers made it seem like both drivers were equally at fault. That was untrue. My emphatic challenges about the report to the officer at the desk went unheeded. “Next?” she called out to the person behind me. The report was going to stand & there was nothing I could do about it.

That drunk driver must have been one of the biggest big-shot residents in the history of the ritzy town who, for some mysterious reason, needed protection from me, which the ritzy town police were only too happy to provide.

This was so different from the genial interactions I had in childhood with the cops from our local precinct in Long Island City, across the street & around the corner from St. Mary’s. We kids trusted & looked up to those men in blue. This disturbing experience in the ritzy town police station was like a scene from a 1950’s noir film about rogue cops.

When we moved to Long Island in 1967 & I first saw that ritzy town I thought it was beautiful & magical. To me it looked like “Donna Stone’s” hometown. (That refers to Donna from The Donna Reed Show. The innocent sitcom can be still found on Hulu & Amazon.) I thought when I grew up I might like to live in that ritzy town. To have been exposed to its ugly underbelly was something I wish had never happened.

When I realized I had been seriously injured I decided to consult an attorney. Eventually I contacted other attorneys, all to no avail. Obviously the ritzy town police report was going to be of no use to me in any future lawsuit.

The first lawyer I conferred with, from the same ritzy town as the accident, had an amazing opening line. He glanced at the dramatic pictures of my passenger door, then gave me the once-over. “You don’t look so bad,” he proclaimed, like a dubious physician facing a well-known malingerer. Another surreal moment. I felt like I should apologize for not having a broken leg or for not bleeding profusely from the head. What we didn’t know at the time (what the lawyer didn’t care to know) is I had suffered a coup-contrecoup, a closed-head injury that has ruined my life. But hey, the ritzy town lawyer, who promoted himself to judge in my presence, like the ritzy town cops, had declared me undamaged.

Within a day of the accident I started not being able to stand up for long periods and felt faint whenever I stood or walked around. As the weeks passed I felt every minute as though I was going to fall down. At times I did. Vertigo kicked in and I could no longer see straight. I felt so weak I was afraid if I fell down again I might not be able to get up. Within a few months I became perpetually nauseated and couldn’t eat. At some point during those months I realized I could no longer produce a sweat. That caused a catastrophic chain of events – when perspiration doesn’t come out, it goes in, and you do down. FAST!

One day though I was feeling fairly “normal.” (I did have some normal moments.) I was sitting on the side of the bathtub getting ready to take care of some overdue grooming tasks. I remember I was humming a Beach Boys’ song to myself. Out of nowhere I felt a gripping, life-threatening fear. I knew this was completely incongruous. Nothing was wrong. It was a sunny summer day & I was safe in my own home. But I couldn’t shake the feeling of intense fear. When it finally did pass it was as though it never happened, and I chose to pretend it never happened. (Once I started treatment it never did again, until March 2021. More about that in the “Addendum.”) From then on though I found myself terribly startled every time the phone rang. (That too is happening again.) I wondered if I was going crazy & this is how it was manifesting itself.

Well, I wasn’t going crazy. My physiology had been wrecked by that car accident the ritzy-town police & my own ritzy-town attorney didn’t think much of, and its effects were all-encompassing. I kept to my MO of ignoring what I couldn’t explain & simply went about my business – at least I tried.

On one occasion I was standing in the kitchen chopping vegetables when I felt my body telling me to get down. I made it to the couch. My sister, a nurse, happened to be visiting & noted my pulse was very rapid and my respirations were below normal. She didn’t have her blood-pressure thingy with her that day. Soon it was discovered my BP was always running low. My norm was 110/70. Now, on a good day, I was averaging 95/58. When BP was low my heart rate went up (tachycardia) & I couldn’t do anything. Couldn’t even walk around my house.

Vertigo was approaching 24/7. Unless I kept my head perfectly still & didn’t move my eyes, the world would spin uncontrollably. When it came on I had to hold on to things to walk. Even when I was laying down it felt like I was going to fall. I could feel my eyes rolling around in circles. I learned later I was having rotary nystagmus. When I turned my head the other way my eyes would roll in the opposite direction.

One time this eye-thing happened as I was stopped at a red light on the way home from work. It was obvious I could no longer drive safely. My head was constantly killing me, I couldn’t focus, couldn’t think straight, my balance was off, and I couldn’t speak above a whisper. I began writing letters backwards and numbers out of order. (It’s happening again now as a matter of fact. Instead of writing “to” I write “ot” and so on.) I began bouncing checks – something I had never done in my entire life. Suddenly I was unable to balance the checkbook at all. I couldn’t add simple numbers in my head anymore. I especially couldn’t subtract. All this meant I could no longer work. Savings were gone through pretty fast. Then the pain started – everywhere. It was overwhelming.

The disorder, if I did have it in childhood, never really affected my life until after the car accident. A few months later I developed a virus that stayed with me nearly three years. Tests showed my immune system had turned upside down.

By the end of 1999 I had become 95% bedridden, needing a toilet next to my bed. If I moved my head even an inch a tachycardia event would come on, sometimes necessitating trips to the ER, so I stayed totally still. I was unable to walk more than a few feet, if that much, was in extreme pain 24/7, experienced unremitting brain fog, and could not sleep. During one horrific month I went 13 days & nights without one second of sleep. Finally, slumber overtook me. A few days later my body experienced another 8 days & nights with no sleep whatsoever. I don’t know how I stayed sane. By the Grace of God I’ve no doubt.

The nonstop vertigo, brain/visual situation, both a result of the coup-contrecoup, were diagnosed as Mild Traumatic Brain Injury (MTBI, aka concussion) & and Benign Paroxysmal Positional Nystagmus (BPPN). Today it’s more commonly called Benign Paroxysmal Positional Vertigo (BPPV). I received excellent occupational therapy for BPPV, some of which I’m starting to do again on my own as it’s coming back. The TBI was disregarded by the doctors, even after 18 months with no lessening of symptoms. They went ahead & diagnosed Post Concussion Syndrome but did absolutely nothing about it. The MDs were doing what I did: ignoring what they didn’t understand.

After the accident I developed a very strange symptom: I was smelling things that were not there, and not smelling things that were there. A physician acquaintance of mine recommended I see a specialist friend of hers. She called up & made the appointment for me. The encounter turned out to be an emotionally abusive experience. First the doctor had me walk down a hallway. (This visit took place before I was diagnosed with BBPV & Post Concussion Syndrome.) Because my equilibrium was so off my arms instinctively reached outward to help me walk so I wouldn’t fall over. The doctor, a woman, said, “Stop with the arms already.” I attempted to explain. She didn’t care. Then she put a blindfold on me and held substances under my nose which I was supposed to identify. After getting the 3rd or 4th one wrong she screamed, “You are lying!” I wish I’d thrown the blindfold in her face and said, “No I’m not lying you idiot, I have a brain injury!” I didn’t because I didn’t know yet that I had a brain injury. But I was absolutely positive she was an ignorant, nasty, obnoxious idiot. I couldn’t believe an MD would treat a patient this way. I immediately walked out of her office. She followed me out to my car yelling at me to come back inside. I drove away. She’s lucky I didn’t run her over.

One of the worst moments of my life happened one morning when I stood up (slowly & carefully of course) to use the portable toilet next to my bed. When I was fully upright with my feet on the floor, my pajama bottoms fell down to my feet. I had dropped below 100 pounds & my clothes were now literally falling off me. At the time of the car accident I weighed around 145.

For two years I hadn’t been able to eat much of anything because of unceasing nausea. I probably needed a feeding tube but no doctor was doing a thing about my extreme weight loss. One doctor accused me of being on a “cabbage soup” diet. Mostly they shrugged off my symptoms & called me a liar. It’s a miracle I survived.

Neither my father or grandfather experienced these other symptoms. Their dysautonomia was mostly confined to sudden blood-pressure drops. Though when Dad reached his mid-60s he was forced to contend with a “nervousness” he’d never known before. It got to the point he told his doctor about it. (This was well before his dysautonomia diagnosis.) His physician prescribed Zoloft, which definitely quelled the nervousness, but was not treatment for dysautonomia itself. At that time the only SSRI known to work for dysautonomia was Paxil.

In September 2001, after I was admitted to the hospital following a prolonged tachycardia incident (my potassium was low so they put me on an IV), one of the doctors came to my bedside to tell me to “stop wasting the taxpayers’ money.”  (Great bedside manner huh?) I was a taxpayer too who had been deemed officially disabled in 1999. We had simply been unable to find a doctor who knew what was wrong & how to treat it. The medical profession has a lot to answer for regarding a lot of people.

At diagnosis in 2001 I weighed 90 pounds. Long Island cardiologist & electrophysiologist, Dr. M took one look at me in the wheelchair my sister was pushing through his office door & diagnosed me instantly with Dysautonomia with a POTS Variant (POTS: Postural Orthostatic Tachycardia Syndrome). I was afraid he would want me to take a Tilt Table Test.

I knew about all about the horrifying Tilt Table Test from my father. His doctors would give him the test after every fainting incident. Even after the BP & heart rate had met certain parameters they kept the test going until my poor father passed out. They said they had to do it, that it was necessary to trigger the fainting. I was there with my father for a couple of these tests & at a certain point he could feel it was going to happen. He’d beg: “Please stop!” I’d beg for him. They never stopped until he was unconscious. Not only was this unnecessary, after two or three times it became sadistic. And after it was over they didn’t do anything for my father. No diagnosis, no medication, no referral, NOTHING.

Later on, for insurance purposes, Dr. M did administer the Tilt Table Test. He knew I was petrified because of what my Dad had been through countless times but assured me he did not do such things to his patients. Dr. M promised he would not let me pass out & I didn’t. I felt like I was going to but I didn’t. By then the table was already being lowered. He did the test the right way, stopping it as soon the blood-pressure/heart rate parameters he was looking for were met. My Tilt Table Test was positive, which meant I flunked being well.

Back at that very first office visit, looking at three year old lab reports, Dr. M asserted, “This is the bloodwork of someone with malnutrition. I can’t believe they didn’t help you.” When he saw the date he was appalled but not surprised. He explained to us even the doctors in his own cardiology practice didn’t believe in dysautonomia & made rather a joke about his patients. The partners could not be called for a dysautonomia emergency, only Dr. M. So the man was always on call.

There was only one thing my barely functioning brain was able to focus on during that first visit: a small model of Star Trek‘s USS Enterprise sitting on Dr. M’s desk. From deep within the isolated existence I endured 24 hours a day, a tiny spark of the old me reached out & connected with the current me. For a moment I knew myself again. It felt good to be in the hands of a fellow Trekkie. Perhaps Dr. Leonard McCoy would reach out from where no man has gone before & tell his associate how to help me live again.

Just a brief mention of how we found the marvelous Dr. M. I knew I was dying. I was mentally prepared. Last Rites had been administered after a particularly bad cardiac event landed me in the hospital again. I remember telling my sister in that voice I could not raise above a whisper, that I wouldn’t be able to hang on much longer. (She was the only one I told.)

I placed a call to my lifelong best friend, Karen, also a nurse, who had been helping my sister Melanie to help me. I asked Karen to please light a candle for me in our old church, St. Mary’s, in which five generations of our families had been baptized, communioned, confirmed, married & buried. The very next day my sister miraculously happened upon Dr. M’s name and we made an appointment.

The doctor put me on:

0.1 mg of Florinef (a mineral corticosteroid to raise my blood-pressure back to normal)

20 mEq (milliequivalents) of K-dur (potassium, to offset the unwanted side effect of Florinef, potassium deficiency)

10 mg of Paxil (off-label use, to help with digestion and other symptoms). I feel I should mention again Paxil was the only SSRI that actually worked for dysautonomia. At the time they weren’t sure why.

Within two days I could walk without falling down. In about three weeks I could eat normally again. Within two years I had recovered enough to live a virtually normal life. I thought I was cured. I don’t recall Dr. M saying the drugs were not a cure. They were were certainly ameliorating what was wrong, increasing blood-volume & allowing the sympathetic/parasympathetic systems to correlate with each other again. Even though something was obviously still wrong, I chose to believe I was cured – or soon would be. Mind over matter is a real thing you know.

After several years, because I was maintaining so well, Dr. M gave permission for the meds to be stopped so my husband & I could make a last-ditch effort to have a baby. (I was in my 40s by then. Sadly we were, as ever, unsuccessful.) I was able to stay off the drugs and maintain normal blood-pressure & I could eat normally, but I still could not work. Not since that car accident. I often felt faint, was still suffering with vertigo, perpetual brain fog, constant pain from fibromyalgia, chronic fatigue, sleeplessness, intolerable temperature dis-regulation & many other symptoms. I was, in fact, disabled, but I went on as best I could. Even today I have trouble saying that word “disabled.”

In both April & May of 2011 I underwent emergency back surgeries. The the first was for a herniated disk & the outcome was 100% successful. However, an unexpected consequence of the surgery sent me into a fibromyalgia flare that was beyond the stratosphere. I told the surgeon beforehand I MOST DEFINITELY COULD NOT lie on my stomach for three hours with my problematic shoulders stretched out like Superman in flight. He said I’d be fine. I wasn’t fine. I still have not recovered from that. (Just so you know he is actually a fabulous surgeon. He felt terrible about what happened to me. He apologized for not listening & I forgave him. I respect him & recommend him to this day. Most recently in March 2021, with complete success for the patient.)

The second surgery was for a severe spinal fluid leak that had been allowed to go on for three weeks. The surgeon didn’t believe I had a leak. (Remember, he wasn’t listening to me yet.) I knew as sure as heck I had a leak and it was horrendous. He hadn’t done anything wrong during the operation. In his opinion the leak happened because I probably have thin dura, which could be a contributing factor regarding the dysautonomia. Based on these & other symptoms, such as urinating too frequently, it was also the surgeon’s opinion that I probably have a Chiari 1 Malformation. The famous Chiari surgeon he sent me to looked at all my MRIs, many other medical records, and of course examined me. “Do you have Chiari 1?” he asked rhetorically. “Well,” he said, answering his own question, “that’s a ‘Long Way to Tipperary.’ ” He felt I was borderline and wanted me to get more testing. I didn’t do it. I couldn’t handle any more. Those two surgeries in 2011 had set me back. But not as far back as I had been.

Then in 2013, my beloved mother’s final illness of lung/colon cancer & mild dementia presented itself. I was her main caretaker. My sister, who was a working nurse & had three boys to care for, split the duty with me almost in half. As I began taking care of Mom (Rest in Peace) I could feel a worsening relapse coming on, but I was still maintaining. (Love & adrenaline can work wonders.) Under no circumstances were we going to allow our mother to go into a nursing home and be neglected by uncaring, incompetent strangers. She was on hospice at home and we had a few people assisting us. Mom passed away peacefully in August of 2013, with me holding her hand saying prayers for her and Dad doing the same.

I had to have a third surgery in December 2015 for a grapefruit sized ovarian cyst. Cancer was suspected. The surgery was a concern not just for cancer but for dysautonomia. A few months before being diagnosed I had passed out in the confessional. “Bless me Father for I have—” S P L A T. The next thing I remember was being lifted off the floor outside the confessional by my husband and another man. I passed out three more times on the way to the car because they were holding me upright. They didn’t understand the postural implications. They were just trying to get me to the car. Not surprisingly the priest was somewhat stunned to have a penitent pass out on him. (I was his first fainter.) Father C kindly heard my confession from the back seat of the car. I knew this episode signaled something was very wrong.

Biopsies were positive for ovarian cancer. Every female organ in the pelvic area had to be removed, which left me bereft of hormones. Little did I know how much those hormones were helping to sustain me. Following the surgery I was still ok-ish. That is, until 2018, when we had to deal with my father’s final illnesses of heart failure (at this point he had dropped to only 10% heart function, but you’d never know it by his daily activity – stubborn Italian) & end stage kidney disease. Taking care of Dad was a thousand times more arduous than taking care of Mom.

Backing up about a decade, I had been in charge of Dad’s blood pressure meds since 2008. Unlike other patients he couldn’t stay on a steady dose. If the three meds he was on dropped him too low he would inevitably pass out in the morning. It was happening all the time. He could have hit his head and died. The doctor decided Dad should measure his BP three times a day & let me know the numbers. We kept a chart. Every night at bedtime I’d have to decide whether he should take more or less of one medication, Norvasc. (Due to my familiarity with blood-pressure & passing out, & my thorough knowledge of Dad’s medical issues, the doctor felt the job was best left with me.)

The doctor’s method worked well for years. But it meant I always had to get that call before Dad went to bed. NO MATTER WHAT I COULD NOT MISS THAT CALL. And if God-forbid I made the wrong decision my father could either pass out in the morning, hit his head & die, or he could have a stroke from his high BP not being controlled enough overnight & die from that. It was a lot of pressure, which only got worse as the years went on. By the way, it turned out it wasn’t just high blood-pressure Dad had. It was actually heart-failure, which the cardiologist had missed. It went untreated for at least three years. The Norvasc should have been stopped because it was making the situation worse.

Back to Dad’s final illness . . . From March 1st to June 8th I put in over 1600 hours taking care of my father, so he could remain at home like Mommy. I knew I was risking my health & really, my life, but I was just doing what I had learned from my selfless WWII Generation parents. I’m pretty sure it gave me PTSD. The things I had to do! . . . But I would do it all again without hesitation. My father (Rest in Peace) needed me, and I would gladly have given my life for my Mom or Dad, to whom I owe everything.

I’m in dysautonomia limbo. GI tract is in failure mode, upper & lower. I’ve lost 30 pounds in three months. I’m feeling faint again, sleep is non-existent, inappropriate anxiety is back, and since October 2019, I seem to have developed Mast Cell Activation.

In 2015, incidental testing showed I had asthma & allergies. I started going for weekly allergy shots. Had I been able to confer with Dr. M, he might have advised me not to go down that road since I had been relapsing for several years.

As soon as I began the protocol my face would turn red intermittently throughout the day. Before it happened I would feel a weird sensation in my head, then my face would turn red, then I would get pains in my legs, then I would endure an unbearable attack of heat. (I was well past menopause at this point & that was nothing like this.) Now I’m getting pains in my arms & my torso as well.

In three years of shots I had some severe reactions. I have no doubt the allergy shots were the straw that broke the camel’s back. The shots were patently too much of a challenge for my body. Off dysautonomia meds for years, experiencing several relapses & without a treating doctor, it now seems manifestly obvious getting allergy shots was a risk I should not have taken.

In October 2019, after three particularly bad reactions, two of which put me in the hospital, the shots were stopped. Not soon enough though. I suddenly became allergic to everything, including the antihistamines that stop allergic reactions! What was I to do now when I had a reaction? No one seemed to know. It is all a complete mess & I haven’t come back to where I was before October 2019 – which was not a good place to begin with, but at least I could function most of the time.

Dr. M, the man who saved my life, and my father’s life, had some years ago been offered an exciting opportunity to open & head a Electrophysiology Cardiology Practice in Texas. I remember when he told me the news I thought I was going to come unglued. It felt like the world had just spun off its axis. Dr. M knew full well what his moving thousands of miles away would mean for his NY/LI patients. There was no where else for us to go. The doctor immediately, reassuringly vowed he was not going to abandon us. He was firm about it. He gave us his home phone number in case of emergencies. He knew it wasn’t going to be easy to manage but somehow he would make it work. That he was not abandoning us was all I needed to hear to make the world start spinning on its axis again.

I don’t exactly know what happened, but I have been without a treating doctor since he left. As dysautonomia is still pretty much an orphan condition, experienced, competent treating doctors are hard to come by. I probably shouldn’t go where I’m about to, but I feel I have to. If this blog is to mean anything it has to be truthful.

One truth is I will always love & admire Dr. M & be eternally grateful he saved both Dad & me. He is a great doctor & an astute diagnostician. One listen on his stethoscope told him Dad’s aortic valve was failing. The valve had to be replaced ASAP. Obviously Dad’s regular cardiologist was pretty much good for nothing. Had Dad not seen Dr. M he would have died 15 years ago & missed many wonderful life events with our family & his friends. Had Dr. M not correctly diagnosed me & started me on the proper treatment I would soon have died of malnutrition. I owe the man more than I can ever repay.

Another truth is I’ve been in a state of medical bewilderment since he moved to Texas. It wasn’t just the move, it was the promise he made not to abandon his NY patients. At the time I was doing ok, now I’m far from it. What happened to me 20 years ago is happening again & it’s reached an alarming stage.

Maybe it turned out to be impossible for Dr. M to keep his promise. If that was the case shouldn’t his NY patients have been informed? You can’t make a statement like “I will not abandon you”  then go silent & be unreachable. You have to say something to the people to whom you made that promise. Call us. Write a letter. Complete silence was a brutal mistake. What was at first a subtle disconnection turned into a chasm which for me became a fall over a cliff. Fatigued fingers scraping dirt at the cliff’s disintegrating edge is how I’m hanging on.

I’m at a loss to understand why NY doctors trying to help me are also shut out by Dr. M. Over the years several physicians have tried to contact him in Texas, more than once. Their calls were never returned. (Perhaps Dr. M never got the messages?) My doctors didn’t appreciate that. Some of them got annoyed at me over it. Dysautonomia wasn’t their specialty but they were willing to work with me if they could just get some advice from the expert on where to begin. Unable to confer with the doctor, unable to refer me to anyone else, they simply dropped me.

At the beginning of this period of silence Dr. M suggested I get in touch with the Nurse Practitioner from this old office who not only understood the condition, she had it. I did make contact. She was of no help. If I remember correctly the problem was she was now working in a different practice & couldn’t take on her former boss’s dysautonomia patients. Subsequent calls to her for help went unreturned.

Dr. M had stated of his own volition & out of great compassion that he would not leave his NY dysautonomia patients in the lurch. I understand he’s in another state now but wouldn’t telemedicine be a Godsend in a situation like this? Is it that it’s impracticable or is it simply out of the question? And I still want to know: Why is it too much to speak with a NY colleague by phone & give him some treatment guidelines for a former dysautonomia patient who has relapsed & needs help?

The Laws of Statistics make it quite probable that a fair number of cardiac patients show up in Dr. M’s office with dysautonomia. They probably don’t know they have the condition because no other doctor ever figured it out. I doubt very much after Dr. M diagnoses them he tells his patients to go find another practitioner for treatment. That’s ludicrous & would never happen.

I’m aware having this discussion in public is a very sensitive matter. While I’m trying to speak candidly with other sufferers of dysautonomia, the last thing I want to do is put Dr. M in a bad light. I’m afraid I have. But I’m truly not meaning to. Obviously this a one-sided perspective from my point of view. After all he did for my father & me I wouldn’t hurt Dr. M for the world. I say with all sincerity it’s impossible to discredit Dr. M, because there’s nothing about him to discredit. He’s an extraordinary person & a phenomenal doctor. There’s simply been an impenetrable disengagement that has caused unintended turmoil – at least for me. I’m in a terrible place & don’t know where to turn. Neither do my doctors.

Before Dr. M diagnosed me I had so many bad experiences with physicians. My trust in the medical profession was & is broken. Very little has happened in the intervening years to restore that trust. I just cannot relive the scenario of showing up at some new doctor’s office who tells me there’s nothing wrong with me, who says I don’t have dysautonomia, that POTS doesn’t exist, etc., etc., etc.

It’s frightening to consider but I might have to be “experimented on” by very well-meaning MDs though non-dysautonomia experts who want to try me on a drug that will treat many of the symptoms but may not actually address the dysautonomia itself. That kind of treatment may send me down a rabbit hole from which I cannot return. Then again it may work wonderfully. (Trying to be positive.) It’s a hope anyway.

Which brings me back to Dr. M. He knows dysautonomia and he knows me. You want to know how desperate I really am? I’m actually praying Dr. M will somehow see or hear about this blog and reach out to me & put me on the proper treatment that’s right for me. I realize that’s so unlikely it borders on fantasy but that’s how frantic I am about my situation.

As opposed to many of his peers who are brilliant physicians on the one hand but missing a personality on the other, Dr. M is first & foremost a kind, gentle soul who just happens to be a brilliant physician. Being highly personable as well as highly skilled counts for so much these days. I need that in my doctor.

Many physicians who claim to treat dysautonomia don’t know WHAT they’re doing. I know because I’ve been to them. I’ve also heard horror stories from co-dysautonomiacs in facebook groups I belong to. Right now I’m hanging on by a thread and using this platform to obliquely communicate with the man who literally saved my life. I’m in despair & afraid of what’s going to happen. I’ve been through this before & know how it goes . . .

I must take a moment to express my deepest, heartfelt thanks & appreciation to my gastroenterologist (Dr. S) and neurologist (Dr. B). Both of these remarkably talented physicians (with characters to match) are trying to help me as much as they possibly can, but they’re not authorities on dysautonomia. They can only go so far. Each is doing his own research to see if I can safely start back on Paxil. For my situation there may be dangerous estrogenic effect caused by the drug. The cancer I had was estrogen driven & the oncologist told me to stay away from anything that produces estrogen. That’s a story in itself and one for another time. It’s not looking good for the Paxil but they’ve got another one ready to try.

The most gut-wrenching part for me is that in the meantime I’ve had to go back on Xanax & Klonopin. Those drugs are not treatment for dysautonomia. They provide symptom relief & can help with sleep. It makes me feel guilty & ashamed at the same time to need them again. I know it’s stupid to say such a thing but it’s the way I feel. I don’t judge others who need them, I simply feel I should be able to do without them. But the situation has become too much for me. Without hormones I don’t have the control I once had.

I’m embarrassed about needing those pills and feeling Cuckoo for Cocoa Puffs for entertaining such ridiculous thoughts about needing them. In the traditional Catholic world it’s called being overly scrupulous. Along with being quick to anger it’s my chief fault & I have to fix it. It’s on my list of things that need fixing.

I’m afraid I’ve entered into a nightmarish place I was in shortly after the car accident: not knowing who I am anymore. It’s as dramatic as it sounds. When it happened years ago it was severe & pernicious. The only part of me that I still recognized as me was my sarcastic but entertaining (so others have told me) sense of humor.

I don’t know how I did it, nor do I remember doing it, but that sense of humor somehow enabled me to collaborate with Rachel, a British friend of mine, on a series of parodies about an old TV show from the 60s, Voyage to the Bottom of the Sea, starring the late great Richard Basehart. (Five years old when the show premiered, I was more interested in the tall, dark & handsome Captain Crane, played by the recently deceased David Hedison – star of the original The Fly.) We wrote the parodies for an Irwin Allen website that celebrated all the TV shows & films Mr. Allen produced.

Reiterating, it’s a mystery to me how I did what I did. Our comedic efforts were well-received, I’m happy to say, and even some of the surviving cast members saw & appreciated our handiwork. The stories are still out there on the internet somewhere. Through a series of surprising events, I was even able to meet & interview some of the actors I had been fond of since childhood, including Mr. Hedison. Though I wish I had perfect recall of it all, what I do remember is enough to bring a smile to my face. I loved all those shows when I was a little girl, especially Voyage on Sunday nights sponsored by Ho-Ho-Ho! Green Giant! It was an honor & a thrill & to have met in person or by phone so many of the actors I once watched on our little black & white TV screen in the 1960s.

So anyway, here I am again at that point of not quite knowing myself. The SNS & PNS are playing their tricks again. I’m experiencing too often that state of mind where I don’t recognize me. It’s not constant yet as it was in 1999 but it’s happening enough to unnerve me. As in the past my sense of humor is basically still intact and I’m hanging onto it for dear life.

I don’t know how my husband is bearing with this situation, except that he’s an angel – a very stressed angel. That’s where the guilt really kicks in, when I think of the stress I’m putting the man I love through. I’m constantly praying for strength & perseverance for both of us and that someday we’ll feel normal & happy again.

While it’s true my husband’s an angel I wouldn’t want to give the impression it’s all hearts & flowers between us all the time. Since October 2019 it’s been very hard. I appreciate the difficulty of having to deal with a person who is constantly exhausted, in constant pain, is upset much of the time, is afraid of what the future holds (will there be a future?), is unable to eat normally, who is easily agitated, and who, aside from prayer, has no ability or energy to discharge her despondency. Just because I appreciate my husband’s difficulty coping with unrelenting negativity, that doesn’t make it any easier for me to go on every day. How can I keep telling him all that’s wrong with me & expect him to deal with it like he’s Cary Grant? Our life has become more like Fred Mertz vs The Incredible Shrinking Woman. I’m shrinking away again from who I was & he can’t always handle the lesser me with grace & aplomb. (I understand. Believe me I understand.) The situation is not normal so neither are our reactions. We are trying though & I hope that counts for something.

The way I am now I wonder what God thinks of me. I fear I’ve lost my faith. But that can’t be as I have no doubt of God’s existence, the existence of His Divine Son, or the existence of the Holy Ghost Who breathes forth from the Father & the Son. I believe ALL the tenets of the one, holy, Catholic, Apostolic Faith. Hail Marys are always on my lips & Our Lady’s face in my mind’s eye. But so are unholy words & awful thoughts. If I haven’t lost my faith I have certainly lost something, but I don’t know what. The first time around I never felt like this. I accepted my situation & was resigned to either living or dying, whatever God willed. Now it’s different. I don’t want to star in this horror movie again. Obviously I can’t accept it this time. I’m pretty sure having all my hormones the first time around was not just physically essential to my being but spiritually as well. I’m trying to do better on this score but not making much progress. I’m sure I soon will.

When this set of circumstances began to manifest itself after the accident in 1997, friends I dearly loved & considered family, who gave every impression they felt the same way, were the first to drop out of my life, either from disbelief about what was happening to me or just plain cold-heartedness. When the going got tough for me they got going. I learned the hard way they weren’t friends at all much less family. The girl they always knew as the light-hearted funny one was suddenly hypersensitive & uncommunicative. Their response was to eliminate me from their lives. It was a painful way to discover who my friends really were, but it was better to know the truth.

Since that time I’ve always felt very awkward talking about myself, even to the true friends who stuck by me. Who wants to chat with someone who has nothing to add to the conversation but bleakness. I mean, if they really want to know what’s going on with me, that’s what my conversational input is going to be – pretty much because I have nothing else to add. I make sure the conversation is focused on them & their lives, which I suspect comes across as not wholly genuine. I can’t help it. It’s either that or I can’t talk at all. It’s taken me this long to discover that the way I deal with these things is to retreat inward. I feel terrible that it makes dear friends upset but I can’t help it. It’s part of the “losing myself” thing.

Although half the time it feels like I’m giving up I assure you (and myself) that I’m not. And neither are any of you! We’re in this together. There is help and treatment out there and we will find it. I will keep you informed of my progress. Please keep me informed of yours. There’s a Forum in this site where you can express your own feelings about what you’re going through. Register, Log In, and you’re good to go. If you’re not up to actively participating you can read what others have written.

May God bless every one of you. My husband & I pray for you every night.

By the way, the photo at the top of the page is misleading & not how I look today. It was taken on July 4, 2018, less than a month after Dad died and a year and a half before I completely relapsed again.

I had no time to grieve for my father or take a breather after those 1600 hours spent taking care of him. As Dad’s chosen executrix I asked the family to grant me a brief pause before starting on the Estate business. Two of three siblings said NO & followed up with “Please don’t tell me you’re tired.” So immediately and for the next 18 months, I was busy every day with executrix duties, which is very hard when there’s disharmony in the family. It was the last thing my parents wanted but there it was.

Along with the allergy shots continuing to wear out my body, the greatest pressure I was under came from the two contentious siblings, neither of whom helped our parents when they were dying, and who didn’t approve of the way I did anything. They wanted “their” money & they wanted it fast. Without our tough Italian father there to take charge, as he had from the day he got married till the day he died at 93, there was no longer anyone there to stop these two. Dad was The Backstop our entire lives and now he was gone. The two siblings went from 10 years of not speaking to each other to being thick as thieves – they had found a common enemy. I was not their enemy; that was only in their minds. At least I had the unwavering support of my selfless husband who had helped tremendously with taking care of Dad, & I had the support of my other sister & brother-in-law. After an ominous email from the other siblings days after Dad died, the four of us decided, reluctantly, I better get a lawyer for my protection and to safeguard the Estate.

I had heard stories of what happened in other families once both parents were gone & there was an inheritance to be dispersed, but ours surpassed them. Bitter rivalry morphed into malignant hatred. The wounds were sharp, carefully aimed, and went to the marrow.

With Dad gone a new method was in play. It felt as though my vital force was being drained by a vampiric pursuit to “get me.” I was accused of horrific things, one in particular that broke me into a million pieces. No time to put the pieces back together – MUST KEEP WORKING ON THE ESTATE. Nothing else mattered to the two siblings except getting “their” money. The Estate had to be finished or this “thing” they were doing would never stop. Unfortunately there were a lot of glitches with the Estate that had to be un-glitched in order to keep moving forward.

The siblings’ strategy continued past the point of quotidian expectation, which made my parents’ money flow like water into the lawyer’s pocket. (Believe me, he earned every penny.) I could feel my parents crying from whatever realm they now inhabited. Not about the money; about the destructive power of non-stop over-the-top enmity.

Listen, if you don’t feel remorse about not taking care of your dying parents, there’s nothing you’re going to feel remorse about. It was more than clear my two siblings didn’t care about me anymore. They were never going to apologize. Although I found it extremely difficult I forgave them, sans apologies. We haven’t spoken in years, which must still sadden our deceased parents. Five days before he died my father’s last expressed wish was for his feuding children to get along. It’s all he wanted & he was cheated of it.

Disappointing my parents this way is one of the greatest pains I have ever known. I’m sorry for it every minute of every day. Although I miss my family members, right now I don’t believe there’s anything I can do about it. I hope some day it will be different – especially for my parents’ sake.

Returning to the discussion of my executrix duties, the aforementioned siblings were stronger than I was at this point because I was relapsing. I ignored what I could, did my work on behalf of my parents, but it’s why I had to hire the attorney. (His office was in the ritzy town of the car accident, but he was not of the ritzy town. If you recall the things I said earlier about the ritzy town, you get my drift.) He is a regular guy, a great lawyer, a fair man, very smart, and really funny. He was able to keep things light – most of the time. Without his mitigating influence, the family situation would have been an even worse disaster than it was. Thank God we found him.

So now let’s come back to the present. Whenever the moment allows I choose to be non-cognizant of the fact that the dysautonomia has reached a more serious stage. Once in a while it does me good to not think of it. However, at the end of March 2021, I experienced my first soul-shattering moment of life-threatening fear since Dr. M started me on treatment for dysautonomia decades ago. My husband & I were in the car outside the veterinarian’s office waiting for our cat Lea to be brought out. We were praying the Rosary. Everything was fine. Then, out of the clear blue sky, IT struck. Saying it was overpowering & unbearable doesn’t begin to describe it. I didn’t tell Bob because I didn’t want to put any more pressure on his heavy, over-filled plate of stress, but he caught on. He held my hand. I reached my other hand up to hold onto the crucifix & Miraculous Medal hanging around my neck. The fear dissipated within 10 minutes or so. I’ve had lesser ones since then, yesterday as a matter of fact.

While searching for the right treatment from the right doctor I’m just trying to keep my head above water. I’m doing my best to hang in there and stay positive. Most of the time I fail. That’s why I decided to start this blog – to keep myself positive and do something useful. My goal is to inform & encourage others who are struggling and who may find their way to this dysautonomia page.

I can tell you right now doing this blog is way too much for me (especially since I have no idea what I’m doing), but I’m ignoring that & doing it anyway – in my own time, in my own way.

What does that mean? It means if I write ten words then BP drops & I feel faint, or if I’m overcome by unbearable head pain, or if I haven’t slept for the third night in a row & feel like I’m going to fall down, or if I am seized by vertigo & can’t see straight, or if I get a sudden attack of GI cramps & start writhing in pain, feeling on the verge of throwing up, I have to

– for how ever long my body needs to stop. It could be five hours, five days, or five weeks. (The dates on the posts are not accurate.) When I’m able to start up again I’ll have no idea where I was, what I was doing, or what I wanted to say, so I’ll just start writing something. Thirty minutes later I could be down for the count again. This disabling condition is like throwing darts at a constantly moving target with no visible bullseye. It’s depressing & frustrating & really quite impossible. But perseverance is the one virtue that can help us overcome the impossible.

Our very underrated 30th President, Calvin Coolidge, told Americans many important things. One bit of wisdom apropos to this discussion:

“We cannot do everything at once, but we can do something at once.”

He also said:

“Nothing in this world can take the place of persistence. Talent will not; nothing is more common than unsuccessful men with talent. Genius will not; unrewarded genius is almost a proverb. Education will not; the world is full of educated derelicts. Persistence and determination alone are omnipotent. The slogan Press On! has solved and always will solve the problems of the human race.”

And this Coolidge gem that means a great deal to me:

“To live under the American Constitution is the greatest political privilege that was ever accorded to the human race.”

Are you wondering why I just threw that in the mix? Frankly, I don’t know how to tell my story without mentioning the elephant in the room. I was brought up by parents & teachers who believed in and appreciated the veracity of the above statement. As a matter of fact, they kept the whole thing going. Love of God, family & and this country was the milieu of my childhood & was infused into my being.

Why has pride in America been exchanged for burning our flag? What happened to the honor & respect for millions who gave their lives so we, their progeny, could live under the principles enumerated in our Founding Documents? For reasons that can only be described as nefarious, the ideals & way of life preserved for us by the tenacity & self-sacrifice of every preceding generation have been discarded. This actuality brings with it consequences no one wants to experience.

Founding Father & 2nd President John Adams said it brilliantly:

” The people in America have … the best opportunity in their hands, that Providence ever committed to so small a number, since the transgression of the first pair; if they betray their trust, their guilt will merit even greater punishment than other nations have suffered, and the indignation of Heaven.”

I think we’re there. God is rightfully angry with our country & allowing us to suffer. We threw Him out of America a long time ago, which is why we are where we are.

It’s frightening how many Americans no longer respect God & His Commandments, or our Constitution, including judges & others who took a solemn oath to uphold it. That we still live under the Constitution’s protective mantle is nothing more than an illusion now.

After WWII  T H E  R E A L  P O W E R S  T H A T  B E  learned they could never defeat us through physical war. Long before the war they were already in place, working tirelessly to destroy our Republic from within. A hundred years of hidden agendas foisted on us by deft propagandists, aka public relations scam artists, aka THE MEDIA, finally succeeded.

My Dad served 43 years in the US military. He was willing to die for this country in order preserve a free America for his children, grandchildren & beyond. Were he still here, seeing what’s become of his country would thoroughly destroy him. Mom too. For that reason I’m glad they’re both gone.

It is my belief the instability of the nation affects every aspect of our lives, including the aspect of dysautonomia. It is my story I am relating here & I am deeply affected by these matters. Now that it’s off my chest, I won’t bring it up again. I breaks my heart & causes too much distress. Dysautonomia is enough to deal with. However, as the proud daughter of two very patriotic parents, I felt it important to briefly touch upon the topic.

Anyway, thanks for reading through this terribly L O N G tome about my journeys through hell & back with dysautonomia. Take a look at the pictures below & note the deterioration since July 2018. Yikes! I hate showing them. But what can I do? Truth is truth.