The final diagnosis was devastating. Jean David was found to have globoid cell leukodystrophy, or Krabbe’s disease, a rare genetic disorder transmitted by a pair of carrier parents. The enzymic compound surrounding his nerve fibers was decayed, like insulation that had been eaten away from electrical wiring, causing the nerves themselves to degenerate and die. While the disease’s symptoms could be managed and possibly slowed, there was no cure, no stopping or reversing its progression. It was terminal in virtually all infantile cases. Only the length of its course was uncertain.
For Jean David, the slippage was rapid. As his first birthday approached-a joyous occasion for the parents of healthy children-the breakdown of his motor system led to paralysis and near blindness. There were bed sores that went to the bone. He would burn with fevers for days, growing weaker with each prolonged episode. He soon lost the ability to take solid foods and had to be nourished through entubation.
As the pressures of coping with Jean David’s steady decline had escalated in her, Margaret Rene had tried
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reaching out to her husband for support, but his private suffering had plunged him into his own downhill slide. He became uncommunicative and began drinking heavily. Problems at the office led to his having to accept a forced sabbatical. He would rise from bed in the middle of the night, leaving the house without notice, his mysterious departures lasting from a few minutes to several hours. At times he was gone until well after daybreak. When he arrived home after the first such absence, he’d claimed to have taken a long drive to clear his head. Later on, he would not bother with explanations.
Margaret Rene supposed his affairs should have been obvious to her, but all her thoughts had been turned toward her waning son. Everything else had seemed peripheral to giving him whatever comfort she could.
Finally Jean David developed a severe case of pneumonia from which he was not expected to recover. By then, Margaret Rene’s anguished prayers at his crib side were no longer for a miracle to spare him but for God to put an end to his ordeal, to grant him a compassionate surcease.
Her pleas went unanswered. Jean David lingered for weeks.
He was just sixteen months old when he passed away.
Margaret Rene’s marriage survived him by less than a year.
Was it possible to feel guilt over a flaw in one’s own biology? For that guilt to be transferred to the person with whom you, by chance combination, produced a doomed, tormented offspring? Margaret Rene did not know how else to explain the resentment and seeming aversion her husband developed toward her. In bed his back would be turned. He had refused to seek marital
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counseling, and in the heat of an argument confessed to having met another woman. He was in love with her, he said. He wanted a fresh start, he said. A divorce, he said.
And then he had left her.
This was ten years ago.
A decade, gone, since Margaret Rene had retreated into solitude. Still vigorous at seventy, Elissa maintained an atmosphere of old-world elegance, seeing that the expensive silk upholstery and antimacassars on the chairs and sofa were neatened and mended, the antique rosewood furniture polished to a rich gloss, the crystal chandeliers, ivory statuettes, and antique china bricabrac regularly dusted. When required, professional help was called for servicing and repairs. But for Margaret Rene, the townhouse had become a cold, somber fortress. After returning from her son’s funeral ceremony, she had placed the urn containing his cremated remains on the fireplace mantle in the grand salon, then draped the gilt framed mirror above it with a heavy cloth, not wishing to see her pain reflected; there at her insistence it hung ‘to the present. And these days, the oil portraits of ancestors that had once given her consolation seemed to gaze severely down from their places on the walls as she wandered the silent rooms and hallways, thinking of poisoned hope, of love turned to ashes.
On rare occasion, Margaret Rene would step onto the balcony overlooking Royal Street and lean over the wrought-iron rail to watch the residents of the city pass below, imagining their conversations, trying to guess which ones had been seared by life’s bitter lessons and which had yet to learn them. But otherwise she rarely went outside, leaving Elissa to order the groceries and take care of her various needs.
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Margaret Rene did not, however, consider herself to be uninvolved with the world. Her parents had entrusted her with guardianship of their financial wealth, amassed over generations, and the inheritance had to be monitored and protected. She remained in intermittent contact with lawyers, estate managers, investment counselors, and a select handful of others. Old money came with old secrets, some quite dark. Margaret Rene had always understood this, as had her parents and their parents. Throughout the years, she had met men who could arrange certain things, perform certain services, discharge certain requests that people of common extraction might deem illicit or forbidden. Facilitators, her father had called them. Their names were neither spoken in public nor ever forgotten, and Margaret Rene had been mindful of keeping her ties with them … one such individual in particular.
Shunning direct personal interaction, ill at ease on the telephone, she had purchased a desktop computer and, quickly becoming proficient with it, would routinely attend to her correspondences over the Internet. Late at night, she would sit at her desk reading and responding to E-mail. And when she had finished with this, Margaret Rene would remain on-line to engage in another increasingly consuming pursuit.
With her browser she had located and assembled an extensive directory of Web sites relating to human genetic diseases, most of them with hyperlinks to associated resources, many providing message boards and E-mail addresses through which the families of the afflicted could network to share information and advice based on their personal experiences.
A curious, unrevealed visitor prowling the boards,
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Margaret Rene would crawl down the lists of postings about care options and treatments, about experimental therapies, about advances in genome research that might someday lead to cures. And as she pored over them, reading one message after another, deluged with their preponderant optimism, a bitter juice would rise into her mouth.
And she would think of her own poisoned hope.
Of her love turned to ashes.
And with what she told herself was sympathy and goodwill, Margaret Rene decided to break her silence and send E-mails of her own to those she felt had been betrayed by false encouragements.
Realizing her motives might be misinterpreted, might even elicit feelings of enmity, she established an account with an encryption remailer that would deliver her messages anonymously, stripped of any data their recipients could use to respond to them or trace her identity.
To the mother of an infant daughter with GCL about to begin treatment with an experimental drug, she wrote, Kill the child now. She will never improve.
To the parents of a young adult with a related neurological disorder seeking donors for a bone marrow transplant purported to stay the progress of his disease: The surgery will be futile. Spare yourself unnecessary pain and be resigned to your inevitable fate.
To the parents of a child in the advanced stages of still another leukodystrophy: Prepare for what comes after the end. You have seen the awful fruit of your passion, and it will drive a wedge of revulsion between you. Dissolve your marriage amicably before the faith is breached.
To a doctor offering palliative advice: Your lies are
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transparent. You are a filthy vampire who seeks to capitalize on the suffering of others.
At first the E-mailings had been a periodic activity, reserved for those unsettled nights when memories would churn inside her and rest would not come. But in recent months Margaret Rene had grown increasingly preoccupied with them. Heedless of the clock, she would write her notes into the emergent dawn with an absorption that was nearly trancelike. It was not until the light of full morning came streaming through her lace curtains and over the evantails latanlers near the window behind her, the palmetto leaves stenciling fan-shaped patterns of shadow across the room, that she would at last go to bed. Having found she needed less and less sleep as time passed, she would awaken shortly before noon and eat the light breakfast Elissa prepared, anticipation building in her breast as she began thinking about her next session at the computer.
When darkness arrived, Margaret Rene’s consistent practice was to first check her unfiltered E-mail application for messages relating to financial affairs, hastily reply if necessary, then switch to her anonymous account and type out the dispatches of compassion she had mentally composed during the day.