H1 element

Dialysis for 30 Years




Coping With End-Stage Renal Disease

An essay by Paul H. Belz, 2014,

Just as people build a cozy nest of pillows to make their bodies comfortable on a couch; they build a nest of daily rituals to make their psyches comfortable. The human animal is remarkable for its ability to adapt to what it cannot control. Once ingrained, coping rituals are not easily discarded because change involves risk and humanity is hard-wired to be risk averse. We call the minority who take risks “courageous” and “leaders.”

The book “Man’s Search for Meaning” is a chronicle of Viktor Frankl’s time in a German concentration camp. Though imprisoned in a brutal environment, Frankl found meaning in that existence and the result was an inner peace and a will to live that were impervious to German inhumanity. His book’s premise is that it’s important to find meaning in any form of existence. From that flows the will to continue living.

No one I ever met epitomized that thesis more than Steve Rash.

Rather than Germans, potassium was Steve’s brutal master. For 30-years, from age 36 until his death at 66, he coped with End Stage Renal Disease (ESRD). Too much potassium will cause a heart attack. When the body can no longer remove excess potassium and other impurities it must be done mechanically in a five-hour process which filters all of the blood. The process is called dialysis and Steve endured it at 11 a.m. every Tuesday, Thursday, and Saturday for 30-years, which made him a medical anomaly. No conversation with him avoided the word potassium.

Between dialysis treatments, diet restrictions are severe. A baked potato becomes an assassin. Nausea is an early warning sign. The typical solution to this dilemma is a kidney transplant. Steve received transplants twice but both failed. He adapted to dialysis.

He learned to cope so well with dialysis and diet restrictions that in 2011 he turned down an offer from the University of Maryland Medical Center for a third transplant. Permanent dialysis was deemed less onerous than the risk of another organ rejection ordeal. Steve had found meaning in his dialysis-centered existence and I saw the inner peace and witnessed the coping mechanisms that drove his will to live. For five years my brief but regular contacts with him became one of those accumulated coping mechanisms.

When I met Steve in 2007 his parents were dead. The only siblings were older twin brothers, both stroke victims confined to Keswick nursing home in north Baltimore. Steve never married and fathered no children. He lived alone in a suburban high-rise apartment building with a blue and white parakeet. Life didn’t include volunteer work, business ownership, writing, travel, avid reading, speaking engagements, gambling, or philanthropy. Sports enthusiasm, earnest theater-going, regular concert attendance, and passionate hobbies were also absent from his coping mechanism inventory. He was a non-practicing Jew, belonging to no synagogue. Extended-family ties were tenuous and infrequent.

Despite this ostensibly barren life portrait he coped with a brutal and expensive medical regimen for 30-years, maintaining a sense of humor, exuding inner peace, and exhibiting curiosity about life and an indomitable will to live. He was a broadminded man who assessed people as individuals rather than as members of some sociological grouping. To nurture that broadmindedness his parents sent him for grades one through twelve to The Boys Latin School of Maryland, the largest independent, non-sectarian college preparatory school for boys in the state.

My mallwalking friend Debby introduced me to Steve in 2007 while we were exercising together at Towson Town Center, an upscale regional mall in central Baltimore County. My introduction was brief. She was a fast mallwalker and while making chit-chat indicative of a genial acquaintance rather than a friend, she continued a rapid-fire step-in-place. She knew him as a regular in a singles group she had directed for Oheb Shalom synagogue in the early 1970s. In the ensuing five years until his death I would have many opportunities to get better acquainted with Steve at a less breakneck pace.

The primary coping mechanism for bringing comfort and joy to the difficult life he was navigating was his “purchase and return” compulsion, exclusively involving Nordstrom department store.

The first-floor Nordstrom Rack coffee bar faces a terrazzo promenade which encircles a rotunda containing a seating area, a plant-enhanced central fountain, and an impressive bank of six escalators carrying shoppers up to or down from the fourth floor and its grand glass dome 150-feet above the ground. That dome connects to an even more architecturally appealing barrel-vaulted glass ceiling dividing a promenade a quarter-mile in circumference. Steve couldn’t walk from Nordstrom’s at the east end of the 200-store mall to Macy’s at the west end.

He habitually arrived at the coffee bar for its 8:30 a.m. opening to ensure getting the center table closest to the promenade and the counter. He became possessive of that table, scowling and fuming if anyone beat him to it. “Paul, why do they allow such riff-raff into this mall?” he’d ask not entirely rhetorically. To Steve, anyone not wearing a suit and tie was inappropriately dressed for “his” table. When he’d saunter over to my less desirable side table and ask that question I usually winced because there was always uncertainty about whether the object of his wrath had heard him. A resonating baritone with a high tessitura ensured that you always heard him before you saw him in the reverberating mall corridors. A first encounter suggested pomposity but it didn’t take long to deduce that the voice masked insecurity.

He usually got that center table he coveted and always sat with his back to the bar as with gusto and speed he devoured coffee and a slice of lemon cake with lemon icing, a selection which never varied.

An ever-present simple hardwood cane provided negligible protection from falling while a far more utilitarian physical and emotional crutch was his personal nurse Nellie. She joined Steve sporadically but as his employee she responded day or night to his cell phone when uncomfortable symptoms appeared.

Nellie was a gift from one of his father’s close friends, Mayor William Donald Schaefer. When Schaefer became governor of Maryland and reluctantly and belatedly moved to Annapolis, his beloved mother Tululu was left alone in his boyhood home in West Baltimore. Schaefer hired Nellie to care for his mother. After Tululu’s death, Schaefer persuaded Nellie to care for his deceased friend Joe Rash’s ailing youngest son Steve. Nellie became Steve’s nurse and closest friend. He was her family’s dinner guest every Christmas day.

With breakfast behind him, Steve began each safari-like trek through Nordstrom’s with a focus and seriousness of purpose worthy of a big-game hunter in the Serengeti. His prey was a $1,400 Hickey Freeman suit reduced to eight or nine-hundred dollars. The size and color didn’t matter. Despite his boast of a personal tailor who worked magic with a suit, a “catch” would be returned in a few days and the ritual would be repeated endlessly.

When I asked the purpose of this apparently fruitless investment of time and effort he replied, “It’s the thrill of the hunt!” And the thrill was genuine. In deference to Steve’s medical condition, “Bob” the Nordstrom Rack manager not only tolerated this “purchase and return” ritual but encouraged it. Employees treated Steve as a mascot of sorts without condescension or derision. They liked this curmudgeonly but ultimately warm individual and admired the courage with which he faced his medical dilemma.

In an unusual corporate strategy, the ground floor Nordstrom Rack discount store is topped by a three-story full-price Nordstrom with its own management team. The two are seldom conjoined. Steve’s quests sometimes took him to the upper store but its attractive discounts were infrequent. Wherever the hunt took him, like Frank Buck, he never went home without trophies.

When he didn’t exit Nordstrom Rack flashing a broad smile and a bag holding a Hickey Freeman suit, he would settle for lesser quarry such as shoes, shirts, sweaters, or ties. Unlike Frank Buck, Steve practiced “catch and release.” His “kills” would all be returned.

Steve was tall, angular, big-boned, and thin. Clothes hung off of him as though draped on a stout Shaker coat rack. His dyed black hair was brushed back in a moderate Brylcreem style. When he walked he left a trail of 1950s-vintage cologne in his wake, like an airplane contrail without the condensation. A large head and a broad expressive face featured wide brown eyes often evoking an incredulous toddler exuberating over yet another life discovery. On Fridays he’d get his shoes shined at a prominently displayed old fashioned stand inside Nordstrom and follow that with a pedicure and manicure at an adjoining store named Nail Trix. “Paul, they’re the best!” he’d enthuse as he flashed his nails for inspection.

The narrow color spectrum of his suits and outerwear ranged from navy or black to medium gray. He never wore pocket squares but cufflinks were de rigueur for his dialysis appearance. Though he obsessed over clothing purchases, an ill-fitting khaki raincoat was all that infiltrated Steve’s dark-hued palette. I never saw him in casual or workout clothes. An oft-repeated boast was, “Good Sam’s dialysis doctors say I’m the best-dressed patient they’ve ever had.”

Good Sam is the affectionate nickname for Good Samaritan Hospital about four miles southeast of the mall. Steve regularly researched all of the dialysis facilities in the Baltimore region and assessed Good Sam’s as the best. He never recounted a bad experience there and admired the facility’s personnel.

Late every afternoon his life’s second major coping mechanism took center stage. He dined out alone, relished each experience, and loved replaying it to listeners the next day irrespective of its degree of excitement or mundaneness.

Though he obsessed over his weekly restaurant lineup, Steve’s post-dialysis gustatory indulgences were not to be confused with those of football’s pre-game tailgaters. Salads and martinis ruled. It was as though Norman Rockwell brushed mischief across his face each time I questioned the wisdom of martinis because Steve knew imbibing them risked a scold from nurse Nellie.

He was temporarily banned from Bertucci’s Restaurant in Lutherville after creating a disturbance at their bar following two martinis.

He broke his arm late in 2008 when a two martini lunch at Paella’s Restaurant in Towson was followed by a fall in his apartment. Surgery was required and for dialysis patients the attendant risks of otherwise simple operations are multiplied exponentially. The subsequent five-week rehabilitation at Manor Care Nursing Home was an unpleasant experience in a facility he cursed.

After rehab he resumed drinking martinis. He enjoyed the drinks’ taste but equally important was that he got a thrill out of thumbing his nose at the dialysis gods and triumphing. It was his only manifestation of gambling or risk-taking. It was his version of climbing Everest and enjoying the tale-telling afterward. It helped him cope with life.

Late afternoon dinners at informal family-style restaurants were wellsprings of joy in Steve’s life. Fridays and Saturdays were reserved for Bertucci’s in Lutherville, Sundays featured Outback Steakhouse in Hunt Valley, and the rest of the week was monopolized by Cheesecake Factory at Towson Town Center. When he first tried Cheesecake Factory he was enchanted by a friendly young waitress and then the food hooked him. He loved their pizza but it made him sick so he generally stayed with salads. He always asked for the same waitress. Throughout life he’d demonstrated the eye and the desire but never sufficient bait for women.

Nordstrom’s coffee bar gained a competitor for Steve’s breakfast business in 2009.

A Safeway supermarket was built two blocks west of the mall and opened two hours earlier than Nordstrom Rack’s coffee bar. I shopped there regularly and used their in-store Starbuck’s as a convenient escape from mall chatting as well as a comfortable place to do writing revisions.

While shopping for parakeet seed early one morning, Steve spotted me, joined me, and to his delight discovered that he preferred Starbuck’s coffee and lemon cake to Nordstrom’s. Not wishing to offend Art the friendly Nordstrom barista, when Steve arrived there later he would unenthusiastically order oatmeal. He elicited my promise not to reveal the reason for the change to Art and I reassured him that guilt was unnecessary because I had seen Bob the Nordstrom Rack manager frequently ordering coffee at the mall’s own fourth-floor Starbuck’s. And so a new coping ritual began.

Safeway employees developed ambivalent feelings toward Steve. He was polite beyond the norm, never failing to compliment excellent products and friendly service and wish everyone a good day when he left. Perfectionism and short-temperedness reared their ugly heads sometimes. He reduced one young female Starbuck’s barista to tears when the credit card swiper would not accept his card. The manager later told me that her young employee nearly quit that day. When two teachers from the high school across the street brought an entire class of 20 students to Starbuck’s, filling the customer seating area without purchasing anything, he angrily dialed the manager from his cell phone to opine that “This is no way to run a business. These students should be in school.” Internalizing anger is not healthy for dialysis patients. It was a non-issue for Steve.

The angriest I ever saw him was when management shut down the elevators in his high-rise apartment building without keeping one operative for the handicapped. A fifth-floor resident relegated to climbing a concrete stairwell, Steve’s palpable anger in merely relating the story to me aroused sympathy for the hapless official who faced his wrath first-hand. At such times the pitch of his voice leapt up the chromatic scale.

Charm, short-temperedness, stoicism, and yes, broadmindedness were pillars of his character but a penchant for strange idiosyncrasies colored his personality.

He enjoyed giving loud recitals in sync with Safeway’s public address announcer. When employees were alerted to a phone call Steve attempted to make it a loud duet: “Attention service desk; two, zero, one.” He would stop a conversation in mid-sentence to join the P. A. announcer. Endearing at first, it became so frequent and loud that it drew unwanted attention to the table you were sharing with him. Since his medical condition denied him many of life’s major joys he coped with reality by exhilarating over pleasures that seemed ridiculous to those not imprisoned by a faulty body. Apropos were the words of Nietzsche: “Those who were seen dancing were thought to be insane by those who couldn’t hear the music.”

Various mannerisms indicated that he seemed at home in a supermarket and I learned that such was his pedigree.

His father Joe Rash had been an attorney and vice president for the Harrisburg, Pennsylvania-based Food Fair (later Pantry Pride) supermarket chain. All three of his sons, Marc, Herb and Steve, went to work for Food Fair. Joe died in 1974 and the supermarket went bankrupt in 1978. Steve then worked for the Giant Supermarket chain until his kidney infirmity forced him into the less physically demanding job of running a library for the Occupational Safety & Health Administration (OSHA). He worked there for eight years and proudly recounted his retirement party at Baltimore’s landmark Haussner’s Restaurant.

I believe his duets with supermarket P. A. announcers were throwbacks to fondly remembered Food Fair days with his brothers.

Steve’s father had risen to prominence in Baltimore in concert with his friend William Donald Schaefer. Joe Rash bought the Baltimore Bullets professional basketball team in 1949, the year the Basketball Association of America changed its name to the National Basketball Association (NBA). He owned the team until it went bankrupt in mid-season in November, 1954, when players and coaches fled down the back stairs of the Indiana hotel where they couldn’t pay the bill. In 1968, Schaefer appointed Rash president of the Baltimore City Board of Park Commissioners. Retired parks district supervisor Doug Brady recalled that Schaefer, Rash, and comptroller Hyman A. Pressman were usually together when seen in public. He described Rash as a good man. Joe Rash headed the powerful parks board until he died in December, 1974. In a March, 1977 ceremony, Mayor Schaefer named the seven-acre green space at the foot of Federal Hill in Baltimore’s Inner Harbor “Rash Field.”

Absent his malady, Steve’s perfectionism, decorum, tenacity, and inability to suffer fools would have made him a worthy heir to his father’s legacy. He harbored no lukewarm opinions. Like his father he was decisive and rarely equivocated. Either, “That coach should be fired,” or “He’s the best!” He was thoughtful and generous to those he liked.  He once volunteered to drive me to a scheduled surgery and wait to transport me home until I reminded him that he had dialysis on Saturdays. If annoyed, however, he reacted immediately in a loud, direct, and personal manner.

There was no time in Steve’s life to nurture long-term friendships. Additionally, his conversational leitmotif and physical limitations created relationship roadblocks.

He met Mel Lessing once a month for lunch at Clyde’s Restaurant on the lake in downtown Columbia, Maryland. In 1970 they had both accompanied a singles group on a trip to the huge Concord Resort in New York’s Catskills. A friendship blossomed and they were still meeting monthly in 2011. Mel was another of those coping mechanisms which cumulatively made life bearable. A mysterious woman drove once every year from Delaware to meet Steve for lunch. I suspect that his medical problems had been a roadblock to marriage with her. Their relationship endured but its limitations made it too painful a topic for Steve to discuss except to reveal that it was once romantic. Once a month he also visited his twin brothers, Marc and Herb, at the Keswick nursing home.

On Sunday, January 15th, 2012, I talked with Steve at his Nordstrom Rack table about the Ravens football team, which beat Houston later that day to advance to the National Football League’s final four with New England, San Francisco, and the New York Giants. I never saw Steve again. Monday the 16th was his 66th birthday and he was taking his beloved nurse Nellie and her granddaughter to lunch at Cheesecake Factory. The day had additional meaning for Nellie since she is black and that Monday was the legal observance of Martin Luther King’s birthday. It was Steve’s last joyous occasion.

The next day his brother Marc suffered a stroke and died in Sinai Hospital. He was buried on the 20th.

Sunday, January 29th, was a sad day for me. My friend Debby, who had introduced me to Steve in 2007 and had since moved to Naples, Florida, sent an email informing me that she heard from a Baltimore friend that Steve was dead but she knew no details.

Without a newspaper account or Nellie’s phone number, it wasn’t until February 6th that I was able to learn the circumstances of Steve’s death from Thelma Esserwein, a fellow mallwalker. Nellie had eventually gone to the mall and provided Bob the disheartened Nordstrom Rack manager with details about Steve’s death. In turn, Bob and Art the barista relayed that information to those they recognized as mall regulars who had interacted with Steve.

Bob recounted that on Saturday, the 28th, Steve left Nordstrom Rack and was involved in a minor traffic accident on the way to Good Sam’s and dialysis treatment. He was examined and released from a nearby hospital and then he returned alone to his Ruxton Towers apartment. Later he experienced chest pains and called Nellie but before she and medics arrived he died of a heart attack.

His funeral was held at graveside on Tuesday, January 31st, 2012, on a gorgeous sunny day with mid-60s temperatures approaching the record of 69 set in 1947. He was buried on a hilltop in a family plot alongside his parents and brother Marc in Har Sinai Cemetery on Garrison Forest Road in Owings Mills. It’s a small, well-manicured cemetery without a gatehouse, nestled in a picturesque rural setting in the rolling countryside of northern Baltimore County.

The word shiva is Hebrew for “seven” and it’s the name of a Jewish custom whereby friends and family members gather to comfort the bereaved and share memories of the deceased.

Steve’s shiva was shortened from the traditional seven-day length to merely the afternoon of his burial and was hosted at the home of his brother Marc’s then doubly-bereaved widow Harriet. In a half-an-hour impromptu shiva inside Nordstrom Rack one morning I joined Bob the manager and three of his associates in a mid-store huddle and we traded memories about Steve.

I visited his grave on Tuesday, February 7th, to say goodbye.

I never had a conversation with Steve about his belief in a god or an after-life. I believe what Darwin said about creation can also be applied to the afterlife: “I feel most deeply that the whole subject is too profound for human intellect. A dog might as well speculate on the mind of Newton. Let each man hope and believe what he can.”

The world’s religions indoctrinate followers with an extraordinarily diverse offering of hopes ranging from reincarnation to a martyr’s reward of 72 virgins. On the prospect of “heaven” a skeptical, sarcastic Mark Twain opined; “I prefer heaven for the climate but hell for the company.”

Whatever the afterlife’s eternal reality, I was privileged to briefly know Steve in this life. He was a courageous man. He coped well..