The Cruelest Fate in Japanese Society--Death by AIDS : Disease: Only now is the country coming to grips with the virus, though not the shame. It is overwhelmingly a foreign woman’s problem.

“I crawl into bed, and as I turn out the light, my body begins to quiver uncontrollably. And from my mouth issues a low moan, and I think: ‘Why me?’ ”

This almost silent scream is but one moment in “Fuyu no Ginka” (“The Milky Way in Winter”), Murao Kusabuse’s chronicle of his struggle with AIDS, just published here.

In one sense, Kusabuse is not alone. He shares his nightmare with tens of thousands of AIDS victims worldwide. His agony--their agony--transcends the paper-thin borders of race, creed and nationality.

But in another way, Kusabuse is terribly alone. This is because he is Japanese, and his society is only now beginning to come to grips with the full horror of the disease. For once, it is the Japanese who must work their way down a hostile learning curve that has already been mastered, for example, in the United States. We know what they must learn.

In the race against AIDS, Japan is a decade behind the United States. Indeed, by U.S. standards, Japan barely has an AIDS problem.

Officially, there are about 500 AIDS sufferers, and 2,300 HIV-infected people, in Japan. Unofficial estimates of the actual number of HIV-infected in this society of 125-million people range between 10,000 and 20,000. In the United States, the HIV-infected figure has been in excess of a million for some time.

Japan has been formidably lucky. But this luck means that Japanese society is a special hell for the relatively few HIV-infected, and even fewer sick. So uncompromising are the Japanese taboos against the infected that Kusabuse refuses to permit his face to appear in the Japanese media or to allow his provincial publisher to use his real name.

Only one Japanese HIV-infected, who, like Kusabuse, was infected through contaminated blood products probably imported from the United States, has dared to appear on Japanese television or to use his real name. No Japanese drug user or homosexual with HIV has yet to risk such exposure, though the gay writer Shinobu Yoshioka, borrowing his pen name, only late last month became the first Japanese to admit in public that he had contracted the virus sexually.

Rather, for the haunted few, to live as a Japanese is to die as a Japanese. To succumb to AIDS in Japan is to give loneliness a cruel face. It is not death one dreads most, or even the suffering from disease, but rather the harvest of shame that one sees in the fearful and uncomprehending eyes of parents, friends and lovers. Here, as nowhere else, resides the true hurt.

To evade this fate, Japan offers two escapes. You may choose to wither away in an isolated hospital ward in the protective anonymity that only a city can give, hoping against hope that none of your friends will find you. Near the end, you will beg the doctor to put the name of any other disease on the death certificate. Some stigmas transcend death.

The other evasion involves a joyless homecoming. Sick, you struggle on, sustained by a circle of close friends (almost never relations), and then when the burden becomes too great, and you are too ill to care or to explain, you make a final journey--probably by car--from the liberating city to the confining embrace of rural life.

The AIDS victim goes home to die. Marked so clearly by approaching death, his or her claim on a place in the hierarchy of familial affection, on material love, is irresistible and unquestioned. It is not everyone’s idea of a hospice, but the Japanese call it uchi (home).

In the United States, AIDS has been an urban tragedy from which rural life has offered a kind of refuge. Japan has reversed this equation. The saddest AIDS stories tend to be rural ones. Even more surprising, HIV and AIDS in Japan are overwhelmingly a woman’s problem, and a foreign woman’s problem at that.

In the small, red-light districts of rural communities, many far from Tokyo’s informing orbit, Philippine and Thai prostitutes earn precious yen to send home to the impoverished hinterlands of Luzon and Northern Thailand. But the wages of sin carry a heavy price.

The brokers who traffic in such lives are often gangsters who know that the last thing their customers want to hear about is an imported AIDS problem. The women are fully aware that any suspicion that they are carriers will result in a one-way ticket back to Bangkok or Manila.

As public awareness of the foreign-prostitute problem has grown, access to HIV testing, as well as to AIDS counseling, in some of the relevant languages has remarkably improved. But even when they can be persuaded to be tested, these young women all too often refuse to return to learn the results. They judge it better not to know.

No longer confined to hemophiliacs or the well-traveled homosexual, AIDS in Japan is forcing an urgent orthodoxy on Japanese discussions of the disease. Age-old inhibitions against raising sexual matters in public or with children are retreating as the pervasive sense of crisis grows.

Everywhere the cry is for tadashii chishiki (correct or proper knowledge of the disease). The cautions urged and remedies proposed are those that have been current in America since the mid-1980s. Even in the most recent statements by some of Japan’s most respected medical authorities, people such as Dr. Masayoshi Negishi, there is no bow to the growing cracks in the Western consensus about the nature of the disease or how to treat it.

This Japanese orthodoxy is vulnerable. Key questions are being dismissed out of hand. Is AZT a remedy worse than the disease? Is HIV infection only a secondary factor in hemophiliac AIDS? Is the low HIV-infection rate in this sexually active society the consequence of the relative absence of a Japanese drug culture?

To their credit, medical experts such as Dr. Negishi are training their fire on Japanese prejudice against carriers and their families. In its own way, the Japanese medical Establishment and its allies in the media are fighting the good fight for tolerance and human enlightenment.

After a decade of wrangling over trade and business practices, the differences between U.S. and Japanese society are ripe and well-exposed. How important that our two societies should discover in the tragedy of AIDS ample reason to nurse a common Pacific humanity.

As the AIDS crisis deepens, their understanding of our crisis will also deepen. From the fire of our shared suffering, a response to Kusabuse’s impossible question might be forged. When he, in his guiltless agony, asks “Why me?”, we must answer, “Why us?”