Powerful illness, powerful activism

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

April 17, 2001|By Joe Nawrozki | Joe Nawrozki,SUN STAFF

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.

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