In It for Life – Bernard J. Ernst, pictured here in the dining room of his Toms River home, has been battling a series of complex illnesses from a work related accident which severely limit his mobility and have caused him great pain since 1992. But Ernst maintains that the “Death with Dignity” act pending in the state legislature is no way for society to respond to such situations.  Joe Moore photos

In It for Life – Bernard J. Ernst, pictured here in the dining room of his Toms River home, has been battling a series of complex illnesses from a work related accident which severely limit his mobility and have caused him great pain since 1992. But Ernst maintains that the “Death with Dignity” act pending in the state legislature is no way for society to respond to such situations.  Joe Moore photos

By Lois Rogers | Features Editor

Thirty-nine steps.

That’s the distance between Bernard J. Ernst’s bed and his car.

It probably wouldn’t occur to most people to calculate the steps they travel to get from their bedroom to the car. But Ernst took the count years ago.

“If you know your end point, it’s easier to push yourself,” he said with a wry smile.

Severely disabled as the result of a fire on the job in 1992, Ernst relies on a wheelchair to get around except for those trips to the car. For him, making that short journey on foot with the help of a walker every time he leaves his Toms River residence to keep a medical appointment, attend Mass or a Knights of Columbus meeting, or a family gathering, is not only an endurance test, it’s an absolute necessity.

It’s what keeps him out in the mainstream, keeps him in community, connected to his family and friends; enables him to choose, for instance, which hospital to be treated in or which specialist to see.

“The house doesn’t have a wheelchair ramp,” he says by way of explanation. “Thirty-nine steps is the number I can take without falling on the lawn. I’m working to increase it,” he says, and smiles again.

That short journey would have been key to his testifying in person against the pending “Death with Dignity” bill at an Assembly Health Committee hearing Feb. 7. Ernst very much planned to go when a scheduling conflict – “ironically related” he noted, to his “progressive and terminal illness” – necessitated his testifying in writing instead.

The bill – A-3328 – sponsored by Assemblyman John Burzichelli, D-Gloucester, would, if adopted, give people whose doctors say they have less than six months to live the right to commit suicide and establish the mechanism to do so. Despite the fact that more people offered testimony against it at the hearing, the measure cleared the panel by a vote of 7-2. It is now poised to head to the full 80-member assembly for a vote.

Ernst’s written testimony, in concise terms, offered a litany of misfortune and mischance, rife with lost opportunities and hopes that would have crushed fainter folks. He made it plain that as the result of a toxic fire on the night of Oct. 8, 1992, he is beset by nine diseases, “all progressive; most incurable; most fatal and most extremely painful.”

He also made it plain that as early as 1994, his own treating physician testified that he “deemed my condition terminal.”

“That was in 1994, he wrote. “And I am still here.”

Defying the Odds

Patrick Brannigan, executive director of the New Jersey Catholic Conference, who is helping to spearhead an effort against the bill, says Ernst’s witness gives a “face” to the “very real mistake that we are able to determine with precision when a terminally or severely ill person will die.”

Ernst is, he says, an example of the seriously ill, who despite all circumstances, want to live.

But by no means have Ernst and his wife Margaret had an easy path to navigate these past 21 years.

He grapples with intense pain each and every waking moment, ingests a startling amount of medication and receives treatment from 12 specialists including endocrinologists, neurologists, pulmonary specialists and cardiologists. She is his caregiver, helpmate and driver. 

Margaret notes that some people fret over the difficulties the couple faces every time Bernie leaves the house and wonder why, especially in instances of purely social outings, they make the effort.

Her husband puts it down to keeping a “good attitude” toward what life has dealt him and “responding with faith and hope.”  The couple are communicants of St. Pio of Pietrelcina Parish, Lavallette.

In their cozy Toms River home, the couple reveals how the fire re-charted both their lives, robbing Bernie of a successful producing career as president of Matrix New York, a design company that staged mammoth theatrical, concert and promotional events, and Margaret of her career as the company’s vice president.

Ernst was in charge of the New York City creation of Piazza Italia, a 31,000-square-foot facsimile of an Italian piazza assembled in the Park Avenue Armory in New York out of wood that included a 34-foot-high, domed rotunda as its centerpiece and 20 exhibit rooms.

Commissioned by the Italian Trade Commission to mark the 500th anniversary of Columbus’ arrival in the New World, Ernst was responsible for safety, especially evacuation, should a fire break out in the 145-year-old building.

When fire did break out, determined later to have been set by the occupants of a homeless shelter on the upper floor, Ernst, certified in fire safety, led the successful evacuation of more than 200 persons, including residents of the shelter, dignitaries and guests attending the event.

In his testimony to the Assembly committee, he wrote that the fire “turned out to be toxic and the chemical equivalent of cynanide. Even though I was trained how to react, assess and evacuate, I was not equipped with breathing apparatus. The toxicity of the burning substances, and the heat, scorched my breathing passages and my lungs,” and set the stage for the host of conditions that continue to plague him.

Ernst, who continued to work, now selling life insurance for the Knights of Columbus, said that “after the fire, I kept a good attitude … If I ever feel down, we drive by a hospital or a cemetery and I remember that I am here, more than 20 years later, on the outside, looking in.”

With Faith, Hope and Love

Time is a commodity Ernst mentions often when speaking of why he wanted to offer testimony against A-3328 – the so-called “Death with Dignity Act” – now pending in the State Legislature.

He says a compelling reason for his offering testimony is pointing out that such prognoses can miss the mark.  Had the timeline initially given in his case been correct he would have died without ever “having gotten to know my four grandchildren,” with whom he has a close and loving relationship.

He spoke optimistically of the great medical advances over the past few decades. “It’s all about hope,” he says. “You can’t just give up because today there is not a cure.”

Ernst’s pastor, Msgr. Leonard F. Troiano, calls him an “amazing man, truly a hero. Even with his limitations and illnesses, he continues to be a strong witness for life who says ‘live to the fullest’ and doesn’t let his limitations keep him down.”

“He stands as a strong example to show that in life, you don’t worry about limitations, you just continue to accomplish what you can.”