Mary's Journal

The following is excerpted from “The Virus at Home,” a speech that Mary Fisher gave Dec. 1, 2006, to participants in “Towards an AIDS Free Generation: Focusing on the Family,” a World AIDS Day forum sponsored by the Mailman School of Public Health, Columbia University, New York City, NY.

We’ve known AIDS for twenty five years now. Ironically, that was a lifetime for many of the young men in this city who taught us our first, agonizing lessons. “Gay Cancer” caught us all by surprise that summer of 1981, as my own diagnosis took away my breath ten years later. But we’ve now come to a point where the challenges are more daunting than surprising. We know more now, even if we do not act on all that we know. We have the capacity for smarter policies and more effective treatments, even when politics skew our policies and ignorance slows our treatments. We have amassed a considerable amount of scientific and clinical experience. Twenty five years into the epidemic, what stands out from formulas and prescriptions, studies and texts, is the simple recognition that family – that who and how we love – matters.

You chose as your theme “Focusing on the Family” – a title hauntingly close to the name of Dr. James Dobson’s national radio show, “Focus on the Family.” Dobson and his friends have had much to say about family values, most of it based on the belief that only they can define a family and only their values matter. Despite my reputation as a Republican, let me offer a somewhat different view.

The families who taught America most about AIDS in the epidemic’s first decade were families of gay men. Others contracted the disease as well, of course, most notably acute hemophiliacs. But it was men, mostly young and mostly gay, who bore the brunt of the disease, who came to clinics with their telltale rashes and cancers, who wasted before our eyes. Rising from the memory of those difficult days are two images of family.

One image is of the family broken not by AIDS but by judgmentalism. Gay men who’d gathered courage in the previous decade to “come out” had discovered that sashaying playfully in a distant gay parade was infinitely easier than coming out quietly at home. To tell your friends was tough; to tell your father was unimaginable. For tens of thousands of young men, the word “family” had become a synonym for the word “rejection”; “home” was a place they could not go. And then they were found by AIDS.

In awful and wonderful ways, we came to respect the power of family. Where rejection was the family pattern, young men created new and fragile families. Uptown condos were converted from design showplaces to quiet hospices where the sick cared lovingly

for the dying. No one argued about gay marriage because marriage wasn’t the issue; being loving was all that mattered. And where families rallied with affection and support, where love was rich as the aroma of fresh-baked bread, young men went home to be cradled by love, holding their father’s hand, seeing their mother’s eyes, knowing that they were loved – even if their small-town obituary claimed death due to cancer.

The power of family remains as undeniable today as it was then, and as much a two-edged sword. For the immigrant woman in Queens who fears that she brought not only her two children but also one virus to her mother-in-law’s apartment, the power of the family to reject and isolate her, to disown her, to caste her off and out – it is a fearsome thing, enough to keep her from seeking testing and treatment. At the other extreme, the teenager in Harlem who’s fallen for the magic myth that AIDS has been cured comes home to a mother who insists that he be tested: His life is redeemed by a mother’s love.

We’ve learned at our home that AIDS is a family disease. We knew it in hard ways when Brian died, when our sons – then preschoolers – knelt with me in the dirt of his grave. We were family before Brian died; we were family after. And we are family today. I have survived not only AIDS but, even more challenging, my children’s adolescence. It now seems possible that I will live through their teenage years without committing either homicide or suicide. We are, as you can tell, family.

American politics have done American families little good in recent years. Those who would legislate who and how people love have either an inflated view of the power of policy or a profound misunderstanding of human nature – or, perhaps, both. When American families are broken by poverty; when we put more Black men in jail each year than we graduate from college; when healthcare policies are convoluted to the point that parents must choose between giving children their food or their shots – policies have run amuck; families are at risk.

Americans are in love with the romantic ideal of “family,” something akin to “Father Knows Best” television from long-ago childhoods: two parents, mother a stay-at-home homemaker, father an all-knowing breadwinner, and children who eagerly do homework before calling out “Good night, John Boy” .… But if we are going to make families a centerpiece of our thinking, our planning, our policy making and our interventions, then we must deal with families as they are, not as we wish they were.

It means that we will recognize most families are under incredible stress. Whether they are economically strong or weak, most couples and nearly all parents lack confidence that they can make ends meet. Every challenge we can list – from drugs to gangs, abuse to ignorance, abandonment to intolerance – all of it comes home to the family. Divorce and remarriage and re-divorce has become the dominant pattern surrounding children raised in this nation, whether we like it or not. And this is true only in those families where marriage was an institution; for one out of three children today, no parent will have bothered with marriage. I am not decrying the downfall of the so-called “traditional family,” but I am urging that any appeal for family-based policy be built on the reality of families as they exist – not as we wish they existed.

In fact, I know how powerful and positive families can be without conforming to our traditional expectations. I’m working in the African nation of Zambia to build a healthcare campus and to create economic opportunities for women, especially women with AIDS. Our work there is done in a context where one out of every four families is now headed by an orphan, twelve years old or younger, caring for younger orphan-siblings.

If you would like to learn about family values, I suggest you turn off James Dobson’s “Focus on the Family” and spend a day with these little orphan bands. They are, in every meaningful sense, families. They are woven together so tightly by love that the oldest child will not let the littlest out of her sight; the oldest brother will carry the youngest, give up his food for the hungriest, and gently bury his little sister when she dies….

What binds a unit into something worthy to be called “family” is not convention or gender, ethnicity or economics. Families are molded by love. It is more than a fluttery feeling. It’s the knowledge that you would give your life for the person who holds your hand, whether you are young men stumbling toward the grave or aging parents attending a granddaughter’s wedding. It’s the certainty that we belong, the conviction that we are welcome, that we will be accepted unconditionally even in our worst of all moments….

If you are richly blessed in this life, you will experience the powerful, healing, hopeful power of a family…. And if we are able, we will take what we learn from our own experience with family – the exhausting work of nurture, the grinding challenge of discipline, the surprising giggle in the dark – and enable others to build families who see AIDS as a reason to love one another. If we are able to do this, to make this difference in the lives of others, then we will end our days at rest.

ã 2006, The Mary Fisher Clinical AIDS Research and Education (CARE) Fund at the University of Alabama at Birmingham

“Global Summit on AIDS on the Church” sponsored by Saddleback Church, Lake Forest, CA.

The following is excerpted from “Now I Lay Me Down to Sleep,” a speech that UN Special Representative Mary Fisher gave Nov. 30 to some 2,000 participants in the “Global Summit on AIDS on the Church” sponsored by Saddleback Church, Lake Forest, CA.

Given the fact that the AIDS virus has found some forty million people and left in its wake 16 million (or so) orphans, numbers are bound to be part of the story. But massive numbers can also stymie helpful responses. Big, grim numbers may evoke more sighs than prayers. A reasonable person may conclude that he is helpless against such a tidal wave of suffering. If she knew the numbers on AIDS, Pollyanna would be hospitalized for clinical depression.

Numbers may convince us that doing nothing is nothing short of doing evil. But we must not imprison ourselves with the belief that the numbers are too big and we are too small to make a difference. Because the truth is, you and your congregations can make a difference far greater than the statistics that measure this plague.

I was a young mother, two preschoolers playing near my phone, the hour I learned that I was HIV-positive. It was 1991. Everyone infected with AIDS was headed for the grave. We knew it. Our doctors knew it. We all knew we were a sorry company of pilgrims marching to our deaths. So I spent those early years doing the only common-sense thing I could do: preparing to die.

The first two collections of my early speeches, published in 1995 and 1996, are full of death and funeral meditations. I started journals for my sons so they would know I had loved them. I wrote and rewrote wills and worried deeply about guardianships. I took on dying as I took on everything: as a project. I accepted it, organized it and planned for it.

After nearly a year of angst, I decided to speak out publicly. Since I had only a short while to live, I needed to make an impact fast. Besides, if people didn’t like what I said, what could they do – kill me? So I took to the stage with the hope that a dying woman could make a difference for the living.

Early on, I and others expected charismatic leaders would bring to us what Martin Luther King brought to the American Civil Rights movement. But it didn’t happen. The church that had birthed powerful preachers like King was eerily silent, often judgmental, almost never our champion. Without spiritual support, hope became a fragile creature.

And without a strong leader carrying strong messages, even since 1996 when life-prolonging drugs turned dying back into living, hope faded. We have drugs, but Africa is still poor, Asia is still in denial, America has pursued other wars. Young people in America think AIDS has been cured. Communities of color, of women, of immigrants, of drug users, of trafficked sex workers, of the rural poor and urban ghettoes – all have something in common: They lack prestige, they lack power, and they therefore they lack hope. What they do not lack is AIDS.

When the church has stood tall and spoken the truth, despots and tyrants fell in nation after nation. From Poland to South Africa, congregations were transformed into freedom-seeking crowds. But we are today creeping into this 21^st century facing the greatest health crisis in human history, so far, without a spiritually persuasive voice or a broad, church-based movement. Perhaps today marks the beginning of a new era.

In the West, vertical transmission from mothers to infants is virtually eradicated; in Africa and Asia, vertical transmission is a relentless killer. The epidemic traces trucking routes in one nation and drug routes in another, trafficking in this country and sexual taboos in that. In the West, governments are increasingly unwilling to pay for the treatment of those who previously died but now stay alive. In Africa and Asia, dying predominates, devastating workforces, economies, families and nations – and governments, unable to stop the epidemic with public policy, adopt a stance of public denial. Thus, globally, while we have one epidemic, it takes as many forms as the cultures that host it. But look: The church is already at work in as many cultures as is the virus. While governments divide, the church could unify. While policies are being debated, preachers could speak the truth to power. While nations war over the price of a barrel of oil, the church could point out the price of human life.

In his text on the American pilgrims, scholar Perry Miller tells this story of sturdy pilgrim faith. A heated battle has broken out between hundreds of Native Americans and forty pilgrims. Eventually, thirty nine pilgrims are dead and the Indians are closing in for the final kill. At this point the lone surviving pilgrim puts down his blunderbuss, folds his hands, looks heavenward and offers this prayer: “I thank Thee, God, that Thou hath given to me alone this victory.”

This is the kind of faith-born confidence needed to defeat a virus as stubborn as AIDS. We need, if we are to win, people driven by a better spiritual vision. It enables us to climb over the debris of the first fifteen years of this epidemic when gay men were stigmatized and shunned, when children were “innocent victims” meaning adults were “guilty.” Confession and commitment are doors out of this era. We can acknowledge that our silence was an act of fear, not piety; of ignorance, not faith. And having done so, the church can take up the battle against those still motivated by fear and still armed with stigma, protecting – rather than judging -- those who are most vulnerable.

Science is our partner in this epidemic, our friend, a gift of God. Scientific researchers have given us life-extending therapies for which we, in turn, give thanks. But human beings are more than bodies: We are fathers and sons, mothers and daughters. We have callings and responsibilities. We need purpose as much as pills. We are more than survival-seeking organisms. We are outfitted with souls that matter. And this is where the church has a special contribution to make.

Let me illustrate, if I may. In Zambia we are setting records for testing and enrolling people at risk of AIDS. But once we have mothers on life-prolonging therapy, they are often unwilling to take the drugs that will stop their wasting because it gives them an appetite, and an appetite demands food, and there is not enough food. They do not want to starve their children, so they quietly put away their pills. Their souls are bent toward their children. We are not mere survival-seeking organisms.

So, we are creating new resources for women in AIDS support groups, teaching them to create products for sale in the West. Macy’s is selling a line of Rwandan baskets this holiday season; Oprah Winfrey’s magazine will promote a line of bracelets in a few months. By creating a local economy, we promote the possibility of life not only for women but for their families. We nurture souls as well as bodies….

I’ve spent years in wards where the stench of death is inescapable, stumbling through hospices and orphanages, numbed by the suffering and the dying. But here’s a miracle of irony: For those who truly understand the work of the soul, the AIDS crisis offers an unprecedented opportunity to do God’s work – producing not only satisfaction but joy.

Psychotherapist Thomas Moore taught us all, in his landmark Care of the Soul, that the “great malady of the twentieth century” is “loss of soul.” “Emptiness, meaninglessness, vague depression, disillusionment – we yearn excessively for entertainment, power, intimacy, sexual fulfillment and material things, and we think we can find these things if we discover the right relationship or job, the right church or therapy. But without soul, whatever we find will be unsatisfying….” We can be kept alive with drugs if we have AIDS. But we come to life as full human beings when our souls, not simply our bodies, are nurtured. We can prop up our egos, and our marriages, and our flagging self-images with alcohol too – but until we nurture our souls, we will not be well. Until souls are well, we are broken, whether we are in an AIDS clinic in Zambia or a board room in Kansas City.

No crisis in history has produced so much opportunity for people of wealth, knowledge and power to find purpose, meaning and satisfaction in life. The church is the ideal bridge from here to there, from safety to satisfaction. Is each human being, indeed, a child of God? Do you believe that with pilgrim-like faith? If so, you will know that the global epidemic is not a mass of numbers, not a ledger of the dead and dying, not one story of tens of millions of people -- but tens of millions of stories told one soul-filled person at a time.

One by one, they kneel and pray, orphans at their bedsides at Mother Teresa’s on the edge of Lusaka, Zambia. One by one they call back words from our childhoods, calling us to nurture our souls for God’s safekeeping during sleep. My soul ached, and was filled, when I lifted two-year-old Martin to my breast last month in Zambia: a skeleton of a child, his face all eyes and eyelashes – I knew, then, that it was love that nourishes the soul. Holding Martin, I see Bupe, the fragile child I held years earlier who died before I could adopt him. And I finish the childhood prayer:

I wish you would come with me, alone or with your congregation, in person or in prayer, to blend the work of the church with that of UNAIDS and others. Come whisper to Medicine his life is not over, that his family still needs him. Come laugh with women in the market and men teasing their wives. Come learn from orphan families where the oldest sister plays mother; where the oldest brother will carry the youngest, give up his food for the hungriest, and gently bury his little sister when she dies.

Come with me to the dark corner of your city where AIDS is at home, or the teaming squalor of a distant compound where AIDS is king. Come with me, and your souls will be nurtured in ways you can barely imagine. You will suffer the suffering, if your soul is healthy. You may grope for words, hide your tears, look away until composure returns. But at days’ end, you will hear the orphans’ echo – “Now I lay me down to sleep” – and you will joyfully commit your own, well-nurtured soul to God for safekeeping.

And in the morning, when you rise to face AIDS another day, to be the church another day, listen in dawn’s silence and you will hear an ancient rabbi promise you what he promised another congregation long ago: “Grace to you, and peace.”

ã 2006, The Mary Fisher Clinical AIDS Research and Education (CARE) Fund at the University of Alabama at Birmingham