Ill man edits magazine from his bed


February 28, 1993|By Robert Ruby | Robert Ruby,Staff Writer

On his own, Victor Blok cannot seat himself in a chair, turn the page of a book, speak, eat or even breathe. He is a victim of a notably cruel disease that has left him with little control over his body: He is able to move only one finger and his eyes.

His friends help with everything else.

Everyone in his unconventional extended household has learned the demanding routines necessary to keep him alive. Mr. Blok and his longtime colleagues have a durable pact of mutual devotion, for he has been their icon of intelligence and accomplishment, and they have been the people willing to take risks on his behalf.

He entrusts them to -- literally -- hold his life in their hands.

Mr. Blok, 47, is afflicted with ALS -- amyotrophic lateral sclerosis -- a nervous system disorder that gradually severs the connections between brain and body. With horrific sureness, ALS inflicts almost total paralysis on its victims. It is better known as Lou Gehrig's disease, after the baseball star who died of it in 1941. Physical wasting away into pitiable weakness is its trademark course.

ALS targets the nerve cells in the brain and spinal cord that control voluntary muscles and causes those cells to disintegrate. A victim loses control of his limbs, later his ability to swallow or breathe. A cruel irony is that the person's mind is unimpaired. A victim remains a fully alert witness to his own decline. All of which strikes Mr. Blok's friends as a worthy challenge, as if part of a graduate seminar in biology.

There is Gennady Krochik, a physicist; Boris Kalyuzhny, physicist number two; Igor Nazarov, physicist number three; Mr. Blok's wife, Natalie, a chemist; Michael and Natasha Liberman, owners of a flower shop; and Valery Price, computer programmer. All are immigrants from the former Soviet Union. Some of them have salaried jobs, but their vocation is caring for Mr. Blok.

"If anyone deserves special treatment, it is Victor," says Mr. Price, as if Mr. Blok's name should be sufficient explanation.

The most courageous

Mr. Blok lives with his friends in a large white house on Park Heights Avenue. Some of the people there have known Mr. Blok more than 20 years, since their student days in Moscow. Everyone says Mr. Blok was the smartest. They became active to varying degrees as political dissidents; everyone insists Mr. Blok was the most courageous.

They have rarely been apart for long periods of time and rarely without a project. There was science, then came politics. Now it is around-the-clock nursing care. "We didn't need a discussion about what to do," says Mr. Price, who bought the house `D because it permitted them to live under one roof. "I don't remember the issue ever arising."

So Mr. Krochik prepares a weekly schedule assigning shifts in home-based intensive-care. Everyone knows the necessary tasks: Manipulate Mr. Blok's arms and legs. Suction mucus from his lungs. Suction his mouth. Clean the wound from his tracheotomy, and change the bandage there. Again, move his limbs. Prepare the liquid nourishment to be dripped into his feeding tube. Check his breathing tube.

This continues for 24 hours of every day. And shave him, wash his face. Place Mr. Blok in his special chair and give him his books and manuscripts and his computer. Against considerable odds, Mr. Blok is the very active editor-in-chief of a Russian-language magazine called Vestnik -- Messenger -- edited in large part in his bedroom.

Mr. Price acts as publisher. Mr. Kalyuzhny is junior editor to Mr. Blok. Mr. Nazarov is in charge of the computers in what used to be the front parlor. Mr. Krochik, the business director, finds Vestnik's advertisers and distributors.

Published twice a month, the magazine is aimed at educated Russian immigrants with high aspirations. Thus its article ranking American universities, and the lengthy interviews of Russian poets. Most issues have an article by Mr. Blok.

The magazine gives members of the household another bond. "Look at them as professional students still living in a dormitory, still doing research," says someone who knows them well. "The magazine and Victor are the current research projects."

Mr. Blok never wanted to leave physics. But in 1986 Soviet authorities ordered him out of the country because of his activities as a dissident. He went with his wife and their two sons to Italy in 1987, then Boston, then Baltimore when Mr. Blok obtained a temporary research post at the Johns Hopkins University.

Some of his colleagues left the Soviet Union at the same time while others followed within about a year. In January 1988, Mr. Blok began lecturing at the University of Maryland Baltimore County. That August, he began having difficulties writing with his right hand. A family doctor referred Mr. Blok to a neurologist who diagnosed him as having ALS.

The grim certainties

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