“Born Again”: Fifty Years Ago, Today
“Wow,” I said to my mother. “I can’t believe this. I feel great. Wow. OH MY GOD! I don’t care what they do to me. Let ’em cut! Rip my insides open for all I care! Let’s do this!”
It was 7:30 in the morning on April 24, 1974. I was lying in a bed at Methodist Hospital in the Park Slope section of Brooklyn. I’m not quite sure what kind of sedative they’d given me, but, man, at 14 years of age, I was so high I was flying. And while I’m sure that drug had rolled back any apprehensiveness I might have had, I know that even without the jab, I would have been leading the parade right into that operating room.
An hour later, I was wheeled into the elevator to take me up to the OR, oblivious to what I’d left behind. I later learned that when the doors closed to that elevator, my Mom broke down crying. Years of worry coalesced with her fears about the uncertain outcome of a long overdue surgery.
When my stretcher entered the OR, I greeted my surgeon, Dr. Joseph Bochetto, like an angel from the heavens above. He was going to give me a new lease on life. Of this, I was confident.
Alas, when I awoke in the recovery unit, many hours later, that fleeting feeling of flying high was no more. I said to myself: “This must be death.” My body felt like it had been tossed down the elevator shaft that had brought me up. I was a mass of tubes, including one that had been inserted up my nose, going down to my stomach. I felt so nauseous, but the nurse assured me that I wasn’t going to burst open if I puked. That was the whole point of the tube. Later that night, barely able to pee, I became acquainted with another tube that made the one in my nose seem like child’s play by comparison. As is common in some post-operative circumstances, I experienced what it was like to be catheterized. You don’t wanna know! But eight days later, I traveled home from that hospital — on a miraculous road to recovery.
Dr. Bochetto was only one of a handful of gifted physicians who defied the diagnostic odds — and saved my life.
Getting into that OR was a tough journey. For 14 years, I had countless bouts of intestinal illness that became increasingly severe as I hit puberty. I’d experience days of constipation followed by days of severe debilitating diarrhea. I endured cramps, nausea, and stabbing abdominal pain that would bring me to tears. On occasion, I vomited. My abdomen sometimes looked abnormally distended, even as I was wasting away. My friends used to ask me, “What does it feel like when you’re sick?” And I’d answer: “Do you remember the last time you had an intestinal virus? Well, that’s what I feel like 24/7.”
Early on, my family doctor, Dr. Harry Karounos, did an Upper Gastrointestinal (GI) series in his office, and thought that there might have been some kind of diverticula in the duodenum, but it wouldn’t explain the severity of my symptoms. I went through 51 additional tests — more extensive GI series, barium enemas, X-rays of every sort, biopsies of the sigmoid colon through a proctoscopy (a rigid, adult instrument was used on me with no anesthesia) — and the doctors were incapable of reaching a diagnosis. Even some extended family members were beginning to doubt that there was anything physically wrong with me. When asked by others why I was so sick, I’d see them tap their temples, as if to indicate it was all in my head. At the time, seeing their insensitivity on display was as big a kick to the gut as anything that was going on inside my body. Some were relieved every time a test came back negative and couldn’t understand why I was so disappointed. “Do you want something to be wrong with you?” they’d ask. “Yes!” I barked. “I can’t be treated, I can’t get better, until they find out what’s wrong!”
When my father suddenly died at the age of 55 of a massive coronary on March 4, 1972, a mere 16 days after my twelfth birthday, even some doctors were doubting the reality of my illness. Suddenly, my symptoms were dismissed as psychosomatic, part of the trauma of losing a parent. One doctor prescribed rhubarb and soda as a panacea for all my intestinal ills.
That I was sick my whole life didn’t seem to matter. But I knew something was just not right.
Surviving Superior Mesenteric Artery Syndrome
In elementary school, as a sixth grader, I chalked up more than 40 absentee days. But I loved school and was very conscientious. Even when I was absent, I studied at home from my sick bed.
With high grades and strong recommendations, I managed to get into the two-year SP (special progress) program, in which three years of middle school were combined into two. I entered David A. Boody Junior High School in September 1972, still undiagnosed. Still missing whole weeks of schooling at a time. But it didn’t stop me from reading English literature or teaching myself quadratic equations using the textbook, surprising even my math teacher.
In the early summer of 1973, with my weight down to 69 pounds, my mom took me back to my family doctor. In his office, Dr. Karounos performed yet another GI series. Later, he sat down staring at the film and took out his medical book. A few silent moments passed. He looked up and remarked that this was no duodenal diverticulum, as he had previously suggested. “Well, I’ll be damned!” he said. “I think this is the Superior Mesenteric Artery.” He couldn’t be positive, though it was clear on the X-ray that some form of obstruction was present in the third and final portion of the duodenum. The doctor explained that, given my long history of childhood illness, this was a congenital, ever-tightening rubber band-like obstruction that worsened as my body matured. The duodenum was becoming more and more extrinsically compressed between the abdominal aorta and the Superior Mesenteric Artery.
Unlike today, CT Scans were scarcely in use back in 1973. The only means of providing a definitive diagnosis without exploratory surgery was to undergo a pioneering endoscopic procedure that had been brought to the United States by the brilliant Japanese physician, Dr. Hiromi Shinya. On August 16, 1973, while I was under anesthesia, Dr. Shinya performed an esaphago-gastro-duodenoscopy. Within a half hour, he had definitively diagnosed what my family doctor suggested — and what had eluded other doctors for more than a decade — the presence of a rare, life-threatening gastro-vascular disorder: Superior Mesenteric Artery Syndrome (SMAS).
It took another seven months to get me the care that I needed. But having a diagnosis gave me every reason to keep on fighting as I awaited surgery. Finding a surgeon who could work his magic was difficult. I was blessed to finally find Dr. Bochetto. He explained that with SMAS, the obstruction caused the first and second portions of my duodenum to widen to twice the size of my stomach as food backed up due to extrinsic compression. I was prone to indigestion, nutritional malabsorption, and excruciating pain. As the pressure mounted, and the food finally worked its way through my GI tract, cyclical constipation was followed by cyclical diarrhea. In some instances, the obstruction was so intense that it caused nausea and vomiting. This was not a sustainable situation. I was fighting for my life and needed a surgical correction.
Three days prior to my operation, I entered Methodist Hospital very weakened to begin preparations for what would be a major surgical procedure (there were no laparoscopic alternatives back then). I underwent a duodenojejunostomy, in which the jejunum of the small intestine is connected to the second portion of the duodenum, bypassing the obstructed third (transverse) portion. Dr. Bochetto also removed my appendix and took a biopsy of my elevated liver.
The evidence was incontrovertible. I had been a very sick boy. But I was now a survivor. Till this day, I wear with pride my battle scar, which runs from my diaphragm to an inch below my belly button.
For several years after the operation, I gained weight and my health improved dramatically. By the mid-1980s, however, years after that trailblazing surgery, I began to develop complications as my body’s growth led to a narrowing of the intestinal bypass (aka an anastomosis). Among these complications was something called ‘blind-loop syndrome’ — nothing remotely comparable in its implications to the significant morbidity rates connected to a delayed diagnosis of SMAS. Given the shortened GI route (Arrow A above), and the possibility of some food making its way through the bypassed loop (Arrow B above), this is a condition that leads to a ‘dumping’ problem, which sometimes keeps me wedded to a bathroom. I’ve had over 60 procedures since the mid-1980s to diagnose and treat various side effects of this condition, including intestinal strain, severe bleeding and anemia, and chronic dehydration. The intestinal strain required surgical repair of several hernias. The severe bleeding required regular blood transfusions and IV iron supplementations until 25 ligation procedures and infrared coagulations controlled the flow. The dehydration led to chronic formation of kidney stones, for which I’ve undergone eight lithotripsies. For a while, I explored Eastern and holistic techniques — including acupuncture, herbal and nutritional supplements, biofeedback, meditation, massage therapy, and so forth — at The Atkins Center for Complementary Medicine, with Dr. Robert Atkins himself. Though these helpful techniques constituted a (crushingly expensive) learning experience, Dr. Atkins eventually discharged me, knowing that he could not resolve what was essentially a “mechanical” intestinal problem. I’ve discussed some of these later medical adventures in a 2018 Folks interview that is now archived.
But, hey, I am still here to talk about it!
Raising SMAS Awareness
Congenital SMAS is so rare that it often goes undiagnosed. Today, there is an organization that brings research, awareness, and support to those who suffer from this condition. In the news and popular culture, I’ve known of only three mentions of SMAS over the past five decades: The first was reported in the years after actor Christopher Reeve (1952–2004) suffered a spinal cord injury that led to paralysis from the shoulders down, as well as an acute form of SMAS. Lisa Brown, model and substance abuse counselor, battled the disease for 6 years and died of complications at the age of 34 in January 2017. And on October 2 of that same year, SMAS threaded through the medical drama in Season 1, Episode 2 (“Mount Rushmore”) of “The Good Doctor.” In the climax of that episode, Dr. Shaun Murphy races to a sick girl’s home in the middle of the night and gets her to the hospital to save her life because she was dying from the condition.
I have been blessed to have had several “good doctors” in my life. I’m still standing not only because of the brilliance of those good doctors but also because of the love and support I received from my family — especially my mother, my sister, my brother, my sister-in-law, and my Uncle Sam, who was like a second father to me and who provided me with a steady diet of laughter. And to my friends and all those classmates who cheered for me every time I left school and welcomed me back with enormous enthusiasm and affection every time I returned, I will be eternally grateful.
Circling the Dates: From Challenges to Triumphs
There is added poignancy surrounding this time of year. I entered the hospital on April 21, 1974, three days prior to my surgery. On that same date in 1995, my mother died of lung cancer. Perhaps more than any other person, Mom nurtured in me an inner strength to deal with lifelong medical problems. I became a seasoned vet, undaunted in the face of such challenges. But these challenges also nourished in me a boundless capacity for empathy and care toward others. I drew from these strengths to be one of my mother’s primary caregivers in the last five years of her life — and to be my sister’s primary caregiver in the last two years of her life. I was released from the hospital on May 2, 1974, which was also my Uncle Sam’s birthday. Nearly twenty years later, on January 23, 1994, prostate cancer claimed his life.
Four days after my surgery, on Sunday, April 28, 1974, my sister participated in the 20-mile March of Dimes Walkathon in Manhattan. When it was done, she stopped by the hospital to visit me. I swore to her that the following year, I would not be in a hospital bed. I would join her on that Walkathon. One year later, on Sunday, April 27, 1975, I walked the full twenty miles with my sister and my friends to raise money for children affected by congenital disorders.
As full circles go, today is Wednesday, April 24, 2024. I have often observed that I was born in Methodist Hospital on a Wednesday — February 17, 1960; and in that same hospital, on a Wednesday — April 24, 1974, I was ‘born again’. I learned over time that where there is life, there is hope. Living with the very real possibility of dying did not dull my passion for learning and writing — my passion for life. I know that none of my personal or academic achievements, none of my articles and books, none of life’s ups and downs — the joys of love, of making love, of dear friendships, and also the grief of losing those I love — would have been possible without the event that happened a half-century ago on this date.
I count my blessings for every moment I’m alive.
