Samuel Joseph Kornbluth was born on Sept. 30, 1976. His arrival came as a shock to everyone, as he hadn’t been due till three months later. His birth weight was 2 pounds, 1 ounce — though he later went down to 1 pound, 10 ounces. He was the youngest of three children to my father, Paul, and my stepmother, Sue. He was a miracle.
Our family was blessed to be living only a few blocks from the Columbia-Presbyterian Medical Center, in Manhattan’s Washington Heights neighborhood. It turns out they had one of the few wards in the world at the time that was set up for “ultra-premies.” The ward was a landscape of incubators: These tiny babies still needed the warmth that a womb would normally still be providing. And many, like little Sammy, had underdeveloped lungs — so their incubators were also ventilators, constantly pumping in extra oxygen. We weren’t allowed to hold him in our bare hands — his immune system was too delicate — so we used gloves that were built into the incubators. Sue and Paul took alternating shifts, one of them staying with Sammy at the hospital while the other stayed home with little Jacob and Amy.
The nurses were angels, gliding between incubators, administering loving care to their tiniest of charges. But at one point, the worst possible thing happened: a virus swept through the ward, and most of the babies perished. The devastated nurses lavished all their energies on the few, like Sam, who had somehow survived. On Christmas Day, we went in to see Sam — and discovered that a nurse had knitted for him a tiny (and I mean tiny) Santa cap. (Many years later, Sam would pride himself on his important role as “Samta Claus” to his nieces and nephews.) It’s hard to explain how hopeful this sweet little gesture made us feel. As Sue put it, “Why would they make something like that for someone who wasn’t going to survive?”
But Sammy (“Sammy Joe from Kokomo,” Sue would coo to him), ever since surviving that virus, had been having increasing trouble keeping his formula down. They ran some tests and discovered that the virus had left him with scar tissue that was blocking his intestines. The doctors told us that they would need to operate on him — and their sober assessment was that he’d have only a 50-50 chance of surviving the procedure. (Three years later, after my father had suffered a devastating stroke, doctors in that same hospital told Sue and me that Dad faced those same odds of survival.)1
Sam survived, but he still didn’t “thrive”: the mysterious (to us, at least) benchmark of a baby who was developing properly. Though he was now big enough to be transferred to the regular premie ward, he still needed lots of extra oxygen. Something was wrong, but the doctors couldn’t pin down anything in particular. Finally there was a meeting, and they told the family that Sammy probably wouldn’t make it: he wasn’t improving, and there was nothing they could do. But my dad had something he could do. He took a week off from work to spend each day just holding little Sammy, talking to him, singing to him. Dad’s behavior was, to put it mildly, discouraged by the medical authorities. He could only bring in germs, they said. He didn’t know what he was doing. He was being (as one of my dad’s friends put it, infuriating him) “quixotic.” But Paul persisted. He’d take Sammy out of the incubator until the baby started coughing a bit, then put him back in till the extra oxygen made him comfortable again. Then he’d take him back out again, talk to him, sing to him. By the end of the week, Sammy didn’t need the extra oxygen anymore. In fact, he didn’t need the incubator, or the hospital. After a week of being held by his father, Samuel Joseph Kornbluth was finally able to come home. (People have told me that it is now common medical practice to hold premies as much as possible, to encourage their proper development.)
Sam was an astonishingly beautiful child, sweet and loving. But from early on he had a different way of interacting with others. He’d talk on and on, without leaving natural pauses to let others join in a conversation. (And here I need to acknowledge that, as a monologuist, this is exactly what I do for a living.) He rarely looked others in the eye. Years later I had a therapist who told me that many of the ultra-premies from that era — before the medical community had made advances in caring for them — essentially had their nervous systems “fried” from being prematurely assaulted by all the stimuli that the womb should still have been protecting them from.
After Dad’s catastrophic stroke in 1979, Sue decided to move him and the children back to her hometown, a small farming community in the Midwest. When Sue died suddenly, in 1991 (on what would have been Paul’s 67th birthday), at the age of 47, the children became orphans. And now began a situation that perhaps only Charles Dickens could have done justice to. One of Sue’s relatives reluctantly took custody of now-teenaged Amy and Sam (Jake had just begun college). This relative dedicated herself to making the Kornbluth kids’ lives miserable. (She got off to a roaring start when she stole the cash from the envelopes that mourners had left for the children at Sue’s funeral.) Eventually she drove Amy and Sam out of their own home, forcing them to stay with a series of other nearby relatives.
One of the only bright spots, if you could call it that, happened when Amy and Sam were staying with Uncle Bob and Aunt Joanne. After being forbidden to go anywhere when under the thumb of that evil relative, they could now go visit with friends. For a couple of nights in a row, Sam called Uncle Bob very late at night to come pick him up. Finally Uncle Bob laid down the law: “Sam, you cannot call me to pick you up if it’s after midnight.” The next night Uncle Bob was awoken at 2 a.m. by a call from Sam to come pick him up.
Exasperated, Uncle Bob said: “Sam, I told you not to do this! Why are you calling me at 2 in the morning?”
Sam replied, amiably: “Well, I figured it’s no use waitin’ till 3!”
This was Sam deploying his bizarro sense of humor, while also, in his own subtle way, asserting that, though many of the people in this town were treating him and his siblings like nothings, they were actually somethings. He was speaking ’bluth to power.
Now came an astonishing act of generosity and grace. My late stepmother’s best friend from New York, Margaret, was, like me, beside herself at the hell that Amy and Sam had been going through in the Midwest. (Meanwhile, it was taking all my persuasive powers to stop their older brother Jacob from quitting college and getting a factory job so he could take them in and support them.) One day Margaret decided that something simply had to be done to save the kids. So she took a week off from her job, rented the biggest car she could find, and drove out to that little town. She packed Amy and Sam, and as much of their stuff as could fit, into the car and took them back to her apartment in New York. She ended up adopting them and getting them both into a great public high school. Amy and Sam both thrived there. Sam even started what you might call a successful small business when he saw the profits to be made from selling candy bars to gang members as they went in for detention.
Sam was always kind of different. Socializing could be a struggle for him, especially picking up on others’ social cues. And even as early as when he was an undergraduate at SUNY-New Paltz, he began having physical problems (sometimes requiring surgery) that may have been traceable back to his ordeals as an ultra-premie. In his 20s those problems became more serious — exacerbated by the enormous quantities of fast food that he ate. He didn’t tell any of us when he was diagnosed as prediabetic, or later as diabetic — and it was a great shock when, in his early 30s, he collapsed one day and had to be rushed to Columbia-Presbyterian. Pretty much everything had shut down: his heart, his kidneys, his liver. His lungs, underdeveloped since his early birth, had been further compromised. But somehow he lived. Amy was with him when one of the doctors told Sam that he could now go down one of two paths: If he began eating healthy foods and exercising regularly, he could go on to live a long life. But if he continued with his current habits, the doctor warned, Sam would live only another 10 years, and those years would be increasingly filled with tremendous suffering.
Sadly, the doctor was prescient. After a brief, hopeful period when Sam used the George Foreman Grill that Margaret had gifted him to prepare healthy chicken and fish dishes for himself, he returned to his fast-food ways. Margaret got him a job doing tech support at New York City’s pension administration, where — as was the case wherever Sam went — he alternately delighted and baffled all who encountered him. When his kidneys finally shut totally down, he had to take several hours off from work three times a week to get dialysis. In addition, he had to negotiate the maze of the city’s healthcare system to attend to a growing list of ailments, including severe breathing problems and an accelerating loss of sensation in his extremities.
Throughout these ordeals, Sam somehow continued to generate kind of a magical force field: amazing things would happen around him. He became very close to the dialysis technician he spent so many hours with at the clinic. He’d tell us how the technician was urging him to get into this new thing called “crypto.” We told him it sounded pretty iffy, but he went ahead with it anyway — and actually ended up doing quite well! Sam seemed to have little to no use for the actual games of the NFL, and yet he always made a big deal out of playing fantasy football — and won pretty much all the time. Once Sam was caught in a downpour when on his way to the subway, so he ducked into the nearest building, which happened to be a synagogue. He had previously expressed zero interest in organized religion, but the folks at the shul instantly fell in love with him — and for about a year after that, Sam dressed like an Ultra-Orthodox Jew, with the coat and the hat and everything. He felt bad that he’d lied to them about having been circumcised, and about believing in God, and about not eating pork products — but also, there was something beautifully transcendent about their faith that spoke to him. Eventually, he stopped going to temple or wearing Judaistic garb and went back to his true religion: Star Wars. A life-size cut-out of Princess Leia guarded him as he slept. He also collected toys — Star Wars (in their original packaging, of course!) along with army men, a passion of his since he’d been a little boy. And there was the game called Magic: The Gathering: He was an avid collector of the cards and frequently played with his Magic friends, even as the neuropathy was making it harder and harder for him to hold the cards.
A few months after Sam moved into a city-subsidized apartment in Queens that was fitted out to accommodate his growing list of disabilities, he collapsed while trying to get into a cab to take him to dialysis. The building’s superintendent happened to be nearby, and tried reviving Sam as he lay on the sidewalk. Another tenant, who had been trained as a medic in the military, attempted to administer CPR. An ambulance came, and the super, who’d known Sam only a short time but had already come to adore him, insisted on riding with Sam to the hospital. Even after Sam was pronounced dead at the hospital, still the super stayed by his side. It was Oct. 30, 2017, and Sam was one month past his 41st birthday.
As Jake and Amy and I dealt with Sam’s effects from his apartment, we noticed that the super had posted in the building’s lobby that picture (above) of Sam dressed as, in Sam’s words, “Disabled Flash” on his way to Comic Con. Sam had loved being at that Comic Con. He had happily described to us how he’d sat in his mobility scooter surrounded by admiring cosplaying women. Next to that photo, the super had posted this note:
Sam’s crypto earnings ended up paying for his cremation and memorial celebration. We sold his Magic collection for $10,000, which went to his beloved nephews and nieces. Years earlier, when our son was born, making Sam an uncle for the first time, Sam had bemoaned the pre-existence of that patriotic symbol “Uncle Sam.” I assured him that he’d be so awesome an uncle that people would forget about that other guy. Indeed, Sam made sure to give our son crucial advice at every critical juncture — for example, telling him, as he set off for college, never to sign up for a class that started before 1 p.m. Not every uncle has the guts to dole out that kind of straight talk.
The memorial celebration, at Sam’s beloved Astoria Beer Garden, brought together so many disparate communities from Sam’s too-short life. His co-workers from the pension fund. That technician from the dialysis clinic. The super from his building, and a surprising number of tenants, given that Sam had only been living there for a few months. Some relatives even came in from Sue’s Midwest hometown — though, thankfully, not that super-evil one. Of course Margaret was there, and many friends. But Jake and Amy and I were particularly moved by the presence of his pals from the Magic community. Oh, they loved Sam! They knew Sam, and appreciated him for his quirky Sam-ness. And, like us, they were beyond distraught at his passing. Towards the end of the celebration, they presented us with a special, oversized Magic card they’d created, which included a photo of them with Sam:
That card, in its frame, is facing me as I type these words. I remember that presentation so vividly, for the tenderness shown by those friends of Sam whom we’d never met before. But there’s another moment that I’m thinking of as well. One summer, all three of my siblings were staying with me in my tiny in-law apartment in San Francisco’s Mission District. Sam, dealing with the family’s ongoing traumas in his own private way, had become fixated on collecting all the coins that were scattered around the apartment, putting them in wrappers, and bringing them to a local restaurant we all liked to hang out at; in return, they would give him cash. We found it somewhat annoying that he seemed to want to focus more on the coin-collecting than on talking with the rest of us. At one point, I asked Sam how he was doing. We were sitting across from each other at a table in the restaurant. He was quiet for a while. Then, uncharacteristically, he looked me straight in the eye. “I know what I am,” he said softly. I was so stunned by this statement, and by his direct gaze, that I just sat there silently. The moment passed, and life went on. But looking back, I wish I’d told him this: “Sam, I know what you are, too. You’re my brother.”
When I was writing that last, parenthetical sentence, I originally began it with the words “Many years later …” And then I realized, with a jolt, that it was only three years — less than three years, actually — between my father being the healthy parent who held his tiny new baby to becoming the stroke-impaired patient, paralyzed on one side of his body and afflicted by vascular dementia.
What a beautiful, moving and inspiring story. Thank you Josh!
What a significant story. Thank you for sharing with u all, Hugs!