In Sickness And In Health

BEYOND LOVE
By Dominique Lapierre
Random House, 400 pp.

This is a book about death and dying under the worst of circumstances, namely lingering agony and social ostracism.

It is about bodies covered from head to toe in the violet cancerous lesions of Kaposi’s sarcoma. It is about lungs ravaged by pneumocystis pneumonia and throat passages so swollen with pustules that the victim chokes on his own esophagus. It is about pain and terror and futility.

By that token, it should be unreadable. On the contrary, it is as compelling as it is heart-rending. Beyond Love is not simply a documentary account of the medical fight against AIDS. For the afflicted, it is a proclamation that hope is the only sane response to the seemingly hopeless. For the healthy, it is a reminder of moral obligation: hope, for the ill, is impossible without the genuine compassion of the well.

But both require courage, and courage needs uplifting, because the lethal stigma of AIDS can ruin even the strongest of spirits. It is bad enough to die before one’s time; it is incalculably worse to die alone and shunned for nothing more than a false fear of hyper-contagion or some irrational distaste for another’s sexual history.

Clearly, Dominique Lapierre is not the first to tackle these issues. Randy Shilts brought a muck-raking journalistic activism to AIDS policy in And the Band Played On. Susan Sontag dissected the syndrome’s cultural reception in AIDS and Its Metaphors. But these were appeals to reason. Lapierre makes a forthright appeal to sentiment. In the face of utmost despair, the book is a clarion call to courage.

This is no mean feat, and it is accomplished by interweaving two complementary narrative threads. On the one hand, there is the tale of the epidemic’s human costs, along with the sacrifices it has inspired. On the other, there is the scientific detective story of researchers and clinicians racing to unearth the cause of this baffling affliction, and to find some means of arresting it. The scientists are heroic, but conventionally so – dedicated, stalwart, tireless. There are heroes of a higher order among the patients and their nurses.

The human toll of AIDS is illustrated via three intersecting lives: Josef Stein is an American archeologist who noticed his first symptoms in 1983. Philippe Malouf is a Christian Lebanese monk who, in the presence of Stein, was paralyzed from the neck down in a fall at an archeological site two years earlier. But if the book has a central character, it is Sister Ananda (the name means “joy”), who was once an “untouchable,” a member of the lowest Indian caste.

As a child, she scrabbled for a living on the banks of the Ganges, picking through the remains of funeral pyres for gold teeth and jewelry. At the age of 13 – two weeks before her arranged wedding – she was diagnosed as having leprosy, and her family disowned her. Abandoned among the teeming tide of Benares, she was abducted into prostitution, escaped, and eventually found herself in the care of the Missionaries of Charity – the organization founded by Mother Teresa to tend to India’s wretched.

From that moment on, Ananda’s life became a story of redemption. She was healed of leprosy. She learned to read and write. She threw off the stigma of her low-caste birth and joined the sisterhood. She spent years succoring the sick and dying. She became the spiritual pen pal of Phillipe Malouf, who began to offer up his paralysis to God as an aid to sister Ananda. Eventually, she came to New York to staff an AIDS hospice, where she cared for Josef Stein.

It is a remarkable story, a reminder that in the leper colonies of India or in the paralysis of quadriplegia there is misery just as bitter as that in the AIDS wards of the West. And souls so indomitable that they cannot be broken by it.

But while Sister Ananda seeks merely to ease the passing of the dying, Western medicine is devoted to nothing less than preventing it. Hence the rest of Beyond Love recounts the race between research teams at the Louis Pasteur Institute in Paris and the U.S. National Institutes of Health to identify the retrovirus responsible, and then the race by the Burroughs Wellcome pharmaceutical company to discover some agent to block it.

The scientists are driven all right, but they could use a little of Sister Ananda’s humility. As glorious as the discoveries were of the HIV virus and its inhibitor AZT, they were not exactly selfless.

Lapierre is French and perhaps a little biased, but it appears that the American researchers attempted to steal credit from their Parisian competitors. Burroughs Wellcome, meanwhile, was at first reluctant to search for an AIDS inhibitor because it saw no margin in doing so. As the epidemic spread, however, the company couldn’t help but see AZT in terms of the profits it promised.

Pride and profit aside, however, Beyond Love should encourage us to think, and think well, of those who are suffering. Because – and this is the horrifying aspect of epidemics – next time it may be you.

• Montreal Gazette April 13, 1991