More MS news articles for April 2001

Powerful illness, powerful activism

Mission: Joel Myerberg, in a wheelchair for more than 30 years, has become an important advocate for disabled Marylanders.

http://www.sunspot.net/news/local/bal-md.joel17apr17.story?coll=bal%2Dlocal%2Dheadlines

By Joe Nawrozki
Sun Staff
Originally published April 17, 2001

Before most people enjoy that first sip of morning coffee, Joel Myerberg has been awake in his Pikesville garden apartment and hard at work making telephone calls and dispatching e-mail.

Over the years, Myerberg, 54, has cultivated connections with governors, members of Congress and mayors to serve as a powerful voice for the 200,000 Marylanders he represents. Blessed with razor-sharp recall, he has memorized hundreds of telephone numbers.

"The key to my life is organization and perseverance, never taking no for an answer," he says.

By many medical and social standards, Myerberg is totally disabled. He's paralyzed from the upper chest down because of multiple sclerosis, a baffling disease of the central nervous system. He requires round-the-clock care and has endured several brushes with death, including one in which he went into a coma after contracting a full-body infection.

He could have quit, and there were dark chapters in his life when he was tempted. But through determination, a dazzling array of technology and help from family and friends, Myerberg not only has chosen to celebrate his life with passion, but he also inspires most who have come to know him.

The disease struck Myerberg during his junior year at the University of Maryland, College Park, where he earned separate degrees in political science and social work. He also carried two minors, criminology and social work, and had planned to attend law school.

'Joel had it all'

"Joel had it all - brains, drive, the whole package," said dentist Larry Bank, who grew up with Myerberg in Northwest Baltimore, attended college with him and remains perhaps his closest friend.

"I'll never forget that day in our senior year when he noted his legs feeling funny," said Bank. "That was the beginning. Oh, Joel's been through more than I can ever think about. But he's like Franklin D. Roosevelt, who said his disability brought out the best in him."

Myerberg's dream of being a lawyer was erased as the disease chipped away at his body, as he went from relying on a cane to a wheelchair in less than a year.

But through his slow, slurred speech, a spirit emerges, an inner spark that has kept Myerberg fighting for other purposes in life and for the rights of the disabled.

He heads or has been director of many nonprofit corporations, advisory councils, gubernatorial task forces and agencies that address the needs of the disabled. The largest nonprofit he heads, the Maryland Disabilities Forum, embraces 218 agencies representing 200,000 people.

Sometimes Myerberg travels to Annapolis or Baltimore. But just as frequently, Gov. Parris N. Glendening, Mayor Martin O'Malley and state Comptroller William Donald Schaefer have sat on Myerberg's living room couch to get an education and pay their respects.

"Joel is an inspiration, and he keeps officials on their toes," says Glendening, who has known him since 1994. "He can call me about anything, and he usually does."

Glendening said Myerberg has enlightened him about the exasperation felt by disabled persons who face daily discrimination in elevators, restaurants and in people's comments.

"I am awed by him, his work," says Glendening.

Technological boost

A little-known group, Volunteers for Medical Engineering, has been a crucial part of Myerberg's life, linking him to the outside world with a panoply of technology. These computer and telephone systems have always been Myerberg's tools of freedom, but also have been the bane of many an unresponsive bureaucrat.

Two winters ago, a building at the Rosewood Center in Owings Mills, a secure facility for the mentally retarded, was not getting enough heat. Myerberg, alerted by one of his "field agents," called a high-ranking state health official. Minutes later, Myerberg contacted a Rosewood administrator.

"I asked him to fix the heat quickly and [said] that I had already spoken to his boss," says Myerberg. The next day, a hospital official informed him that the building was toasty.

Myerberg's front-row seat to life is his $23,000, computer-driven wheelchair, which beeps and whirs as it readjusts, and enables him to cruise around his apartment or travel in a specially fitted van.

One tap with his head on the wheelchair headrest and the chair rolls forward; two taps, back. He tilts his head and it turns. More taps and it stops.

Special phone system

While in his chair, Myerberg communicates by a specially designed phone system encased in a padded aluminum panel in his lap. A tiny receiver in his right ear is connected to a wire-thin transmitter near his mouth.

To initiate a call, he swings the back of his left wrist and hits a 3-inch-square "slam" button giving him a dial tone. To hang up, he uses the same body momentum to swing his right wrist to another button. He has that limited movement because his biceps retain some muscularity and control from therapeutic massages.

"I might make a hundred or so calls" in a day, says Myerberg.

The communications system in his bedroom might seem borrowed from nuclear-powered submarines and aircraft carriers. Some is.

A computer screen over his bed is operated with a mouth-controlled joust, or tube, that points the cursor along a keyboard on the screen. Myerberg spells out his messages with gentle puffs on the tube and sends. He explores the Internet using the same joust system.

His bedroom phone is voice-activated for his most frequently called numbers. To dial, he relies on a goose-neck microphone and another clear plastic tube positioned within inches of his mouth. The tube, known as a "puff stick," can activate a visual display panel, a menu, with a gentle breath.

Myerberg then uses the computer-chipped telephone's puff stick and dials his number.

Most of Myerberg's electronic gear was provided by the state health department's rehabilitation office. It was built and installed by Volunteers for Medical Engineering, a group of about 50 professionals that has been quietly at work for several decades in Maryland.

"A lesser person would have given up long ago if they faced the same challenges Joel has conquered," says Don Jones, a Northrop-Grumman electrical engineer who designed and built Myerberg's phone systems.

In his job, Jones has designed nuclear instrumentation for Navy submarines and radar systems, and that experience shows up in Myerberg's home.

'Persistent'

"Joel can be persistent, even a pest occasionally, but that's the beauty of the man," says Alan Markham, a retired Bendix Corp. engineer who helped build Myerberg's devices. "It's very satisfying to work with him, enjoyable, actually, and very fulfilling."

Myerberg's 81-year-old mother Lenora, who lives nearby, is a frequent visitor at her son's home.

She remembers raising him, two other sons and a daughter on Bareva Road in Northwest Baltimore. Her late husband, Paul, was an insurance executive. Three years before Joel graduated from City College, the Myerbergs moved to Pikesville.

'He couldn't walk'

Joel "was always good in school, had a lot of friends," Lenora Myerberg recalls. "At college, he managed three shoe stores and stayed on top of his studies."

When he returned home in December of his junior year at College Park, she says, "he was limping and then dragging his left leg. The doctors said multiple sclerosis. By the next summer, he couldn't walk."

When it was time for Myerberg to graduate, his mother remembers, "one professor would not let him graduate because Joel didn't make his classes when he was really sick. But Joel had a proctor in his apartment, and 2,000 students signed a petition, and the professor let Joel graduate."

By then, he did not want to go down the center aisle at Cole Field House and accept his diploma; a secretary mailed it to him. He cleared out of College Park.

For two years, Myerberg went to Montebello State Hospital for rehabilitation and moved back in with his parents in 1970. He started working part time as a social worker but stopped because his illness became too severe.

He stayed at home for a few years, then moved to Levindale Nursing Home, where he read voraciously and searched for independence and a meaningful life. Out of his despair, Myerberg made what he terms the biggest choice of his life.

Looking outward

In April 1981, he moved into an apartment house for the disabled near Franklin and Eutaw streets in Baltimore. Of the 76 residents, he said, he was "the only white, only Jewish, only college-educated person there. The only thing I had in common with them that I was a low-income person and disabled."

In a way, that dreary apartment house triggered an epiphany. Myerberg became depressed at times, found his suffering unavoidable. But he started to look outward, to absorb everything around him. He attended meetings, sometimes three a day, about issues and laws facing the disabled and joined the facility's board of directors.

"I was at the lowest in my life when I went in there, but by the time I moved out in 1991, I had developed a whole new attitude for myself," he says. "I learned that we could get elected officials to listen to our stories or situations."

"Joel does not want you to feel sorry for him," says Rep. Robert L. Ehrlich Jr., who has met with small groups at Myerberg's Seven Mile Lane home. "Every time I've met with Joel, it was a worthwhile give-and-take. I learned a lot. And is it inspiring? Of course. But you think about that later."

Myerberg's physician, Dr. Lawrence Solomon, says his patient has an "extremely deep well of courage and strength, the will to survive. There is more mystery at work here than science."

Myerberg's best friend, Bank, says, "If there's nothing else, Joel is a reminder that every person's problem is relative to themselves."
 

Copyright © 2001, The Baltimore Sun