Source: Press RepublicanDate: June 5, 2001Author: Diane Petryk, Staff Writer <dpetryk@pressrepublican.com> URL: http://www.pressrepublican.com/Archive/2001/06_2001/060520012.htmRef: http://listserv.nodak.edu/scripts/wa.exe?A2=ind0106A&L=co-cure&P=R694 Internet is building bridges, but city non-action can exact toll----------------------------------------------------------------(Editor's NOTE: Press-Republican Staff Writer Diane Petryk met on the Internet an accomplished writer and scientist with a rather rare physical disability. They fell in love and planned to marry. But his illness prevents him from leaving his Brooklyn apartment, and the City of New York wouldn't go to him to complete the licensing process. The New York press has gotten wind of the dilemma, and Petryk suddenly found herself something of a cause celebre.Here's her view from inside the fishbowl.) Do it in a public place. That's the top safety rule about first meetings with an Internet acquaintance. I'm a great follower of safety tips. But when I wanted to meet a man I had come to know through a delightful and fascinating e-mail correspondence, he said I would have to come to his home. Not only that, but our meeting must take place in his bedroom. Whoa, I thought. Is this too kinky? Yes, we had exchanged life stories. Yes, I knew Howard Bloom is an author with two books in the local bookstore. I could read about him on more than a thousand Internet sites. But was the chronic fatigue syndrome that he said was keeping him confined to his Brooklyn brownstone, and mostly to that king-size bed, real, or a ploy in some sort of Internet seduction scheme? It didn't come through that way in our e-mails and telephone conversations, and it didn't sound likely from his public writings. But I hesitated when he said he was on "a serious mate hunt." "Well, Howard," I said, "That wouldn't be me, but I would like to come and meet you as a friend and author whose works I admire." He agreed and swore that his housekeeper would chaperone the visit. In late February, I bought Amtrak tickets from Plattsburgh to Brooklyn for myself and my intrepid fellow traveler, my 10-year-old son, Walter. On the subway from Penn Station to Brooklyn, I wondered if I knew what the hell I was doing. To be accurate, we met in the kitchen, but we spent most of the visit in the bedroom. When Howard has the opportunity to greet occasional guests, he does it from a propped-up position on the bed, arms supported by pillows. He connects to the world with two computers at the side of the bed and a specially fitted keyboard across his lap. By the time we departed, I had a sense of the isolation of Howard's world, no matter how much work and socializing one can do over the Internet these days. I learned that chronic fatigue syndrome can keep its victims prisoners in their homes, perhaps bedridden, perhaps too weak to speak or lift a glass of water to drink. And that too many people think the disease is not real. In the 13 years of his illness, Howard went through five years unable to talk. It was even difficult to find a doctor knowledgeable about the disease who would deign to make a housecall. Now, under the care of Manhattan-based Dr. Derek Enlander, a specialist in working with victims of chronic fatigue syndrome andfibromyalgia, he has regained some of his strength. Many chronic fatigue victims, Howard explains, can't cope with the loss of their jobs and previous lifestyles. Many commit suicide. Howard is lucky. He has a writing career and a wide network of colleagues and friends. He has a future that includes writing his third book, leading an international scientific group, producing digital photographic art and pushing the envelope of scientific enquiry in all directions, including founding a new, all-encompassing scientific discipline he has named - you read it here firsomnology. Oh yes, and he now explores the universe with Walter. After that first visit, I had no idea I would ever again need to figure out the subway connections to Brooklyn. Then Howard sent me an e-mail that I'm sure will go down in marriage-proposal history. Examined, it all seemed right. We set eyes on the Fourth of July as the date, and the next step was to get a marriage license. That immediately became a problem. How does a housebound person appear before the city clerk? We were told there were no exceptions to that requirement in New York City. This seemed to flout the spirit of the Americans with Disabilities Act, to be sure, but New York City is a big bureaucracy. After you penetrate the voice menus and the ringing phones that answer only after hours of persistence, it says no, no, no way. Come by ambulance, the clerks said on those few occasions when they bothered to answer. They are uninformed about chronic fatigue syndrome. As trivial as a short trip by car may seem to a healthy person, it can cause a chronic fatigue syndrome victim a severe relapse. Howard mounted a letter-writing campaign. He contacted President George W. Bush, Sen. Hillary Clinton, Gov. George Pataki, Mayor Rudolph Giuliani, advocates for the disabled and 30 other political officials. If any of them were sympathetic, they didn't tell us, although Catharine Paradiso, the mayor's advocate for persons with disabilities, and Francisco Navarro of the mayor's office called and made vague promises of help. We then decided to take our plight to the press. Only after the New York Post and New York Times started making inquiries did we really break through the bureaucratic stonewall. On Monday, City Clerk Carlos Cuevas came to Howard's apartment in Brooklyn. This, admitted the clerk, who called in advance to announce the appearance, was a first. Howard insisted on having the press in attendance. He was intent on telling Cuevas that the disabled should be served by public agencies and granted all the rights the able-bodied enjoy. Chronic fatigue syndrome? I'm marrying a caped crusader. His other motivation in telling this story is to empower the housebound and disabled. He is determined to tell those who are lonely for whatever reason that the Internet is a blessing. It is a magnificent way of finding friends ... and even hunting mates. "There are superb people out there as lonely as you are. It works," he says. He also preaches a simple message to anyone who will listen. There is joy for you, no matter how nature may try to shrink your world. He quotes poet William Blake: "You can see a world in a grain of sand, And heaven in a wild flower, Hold infinity in the palm of your hand, And eternity in an hour..." --------(c) 2001 Plattsburgh Publishing Co.