Mae Hepple unlatches her apartment door and then maneuvers her wheelchair backward until she is planted in the middle of her sparse living room. A crooked, nervous smile flits across her pale face. Joy has been parceled out ever soparsimoniously in Mae's life, but in a few moments, when that door swings open, it will pay her a brief visit.
That it will be brief Mae accepts without protest or complaint. Her defining outlook is one of lowered expectation, of nearly noexpectations at all. It is a perspective born of disability -- cerebral palsy -- and poverty, twin maladies that have circumscribed her life and that she has been unable, Helen Keller-style, to surmount.
In Mae's 31 years, that fatalism has been affirmed again and again, so much so that when she learned she was HIV-positive a couple of years ago, she felt neither surprise nor rancor nor sadness. What she thought was, "Why, of course I am."
The door opens finally, and a pale, copper-haired girl of 12 bursts in, crying "Mommy, Mommy." Mae extends her bony arms like a scarecrow and envelops the child. A keening sound rises from Mae's throat.
Three days later, the scene is nearly exactly repeated, but this time with a dusky-skinned, 4-year-old girl all dressed up in Christmas finery -- taffeta, tights and shiny black shoes. Mae pulls this child onto her lap. The squealing noise begins anew.
Later, when the visit is over, Mae will feel the familiar letdown, abruptly emptied of the pleasure that steadily rose during her days of anticipation. Yet Mae does not consider herself unhappy.
She cannot care for her children, cannot be part of their daily lives. One day soon, she won't be part of their physical lives at all.
But they will know she loved them, and her love is the legacy she will leave them. That and the example of her endurance. For Mae endured. She endured it all.
Mae silences Toni Braxton with a flick of the remote. Outside her apartment window, swollen, gray clouds hover over Mount Royal Avenue, the JFX and, beyond that, the ash-colored rowhouses of the central city. On the living room are photos of her daughters, Pamila and Coley, and a few hangings of a Christian motif. Adjoining the living room is a tiny kitchen and a hallway leading to her bedroom.
Mae does not have a job -- she subsists on a $458 a month disability check -- so she spends an inordinate amount of time within these walls. But it pleases her to do so.
As deep as Mae's feelings are for the girls, she has retreated from regarding them as the most essential elements of her life. "My independence is the most important thing in my life," she says on a December afternoon after Pamila's visit. "It's even more important than my kids. That may sound harsh, but I've lost my children; they're not with me anymore, so all I have is my independence. My home, something I can call my own. This is the only thing I'm able to hold onto. It would destroy me if I had to lose it."
On an earlier occasion, she had used similar language in describing her decision to have children. "I had this empty hole ever since I was a child, but with Pamila this hole was filled because I had something that was mine and nobody else's."
A little later, the hole needed filling again, so she had Coley. The hole now is empty of children. Pamila was taken away from Mae; last year, she gave up Coley to adoption.
Her insistence on living alone stems in part from contrariness. Her education -- such as it was -- never assumed independent living for someone so thoroughly afflicted. And the foster mother who raised her from infancy did not have the imagination to envision her living on her own.
Certainly, in appearance, Mae looks like someone who needs to be taken care of. She resembles a rag doll stuffed with a material too insubstantial to keep her erect in her wheelchair. Her narrow shoulders slump forward, especially after a trying day.
Her hands, particularly on her weaker right side, come to rest at unnatural angles. At the end of her frequent spasms, Mae's right hand often winds up perpendicular to her wrist with her twig fingers bent backward at the joints.
She is able to write, cook and do the dishes, but her hands operate in a way that suggest an inanimate pincer rather than a flexible human limb. She doesn't make the mistake of trusting them. She avoids carrying hot beverages.
Since the age of 13, Mae has been confined to her motorized wheelchair, which she operates with the dexterity of a seasoned backhoe driver. Manipulating a lever on the chair's arm, she expertly backs up or squeezes into tight spaces. When she rides along the streets outside her building, she leans out over her knees, straining against the seat belt that keeps her from falling over.
She looks like a figurehead on the prow of a ship, disappearing into the mist.
A pile of troubles
If she were of a querulous nature, Mae Hepple's grievances against the world would make Job seem a lucky man indeed.
Born with cerebral palsy, abandoned as an infant, molested as a teen-ager, raped as an adult, infected with the AIDS virus as a young mother.
As this pile of troubles rises in Mae's telling, a sheepish smile comes to her lips. She knows there have been far too many tragedies in her story, an embarrassment of woes. A cursory acquaintance with her life makes it easy to understand her constant wariness. "Every time things are going well, a bell goes off inside my head that trouble is around the corner."
Mae's speech takes getting used to. Her tongue works sluggishly, and her voice box is unreliable. Every so often she must tell herself to swallow the saliva collected in her mouth. She gestures forcefully with her arms and hands as if the movement helps draw the words from her lips. As she speaks, her concentration is so great that her eyes seem to lose focus. Then, as she nears the end of a thought, she pushes her stringy bangs from her face and locks eyes with her listener, assuring herself that she has been understood.
She is not sentimental about her troubles; neither is she blind to her own volition in her suffering. Her thirst for companionship led from one destructive relationship to another, a failing that ultimately put her children in harm's way and finally separated them from her.
Mae is telling a friend of her sadness this day. Over the phone, she must repeat herself to be understood. "On the one hand, I want to be supportive of Pamila," she says. "On the other, I want to throw something across the room."
Pamila, who has been living in institutions for emotionally disturbed children for the past four years, is being transferred into a private foster home. This has been the goal for two years, but still, Mae is saddened by it, realizing that others will now become her daughter's parents.
Pamila is the product of Mae's brief, disastrous marriage to a neighborhood troublemaker who surprised Mae by taking an interest in her when she was 18. At that time, Mae was chafing under the control of her foster mother and the cloistered life she seemed destined for. Her existence was a solitary one, consisting of home and a school for the disabled.
In one notable way, however, Mae's isolation was incomplete. Beginning when she was 16, an adult male relative of her foster mother's began taking more than a fatherly interest in her.
Mae's feelings about that relationship were complicated. Everyone, including Mae, seemed to accept that she could never be attractive to anyone. In Mae's mind, this man, who was otherwise kind to her, seemed to be proving that proposition false.
"I knew it was wrong," she says, "but at the same time, it felt good."
But her thinking was clear enough for her to understand she had to get away from this man, and Thomas Hepple offered her that chance.
He had begun flirting with her while he tinkered with his bicycle and she rode by in her wheelchair. She was flattered by his attention, more used to passing through life invisibly or as a sideshow. She was not blind to Thomas' deficiencies, which she said included a criminal record, a drug habit and an aversion to working. They just didn't dissuade her. When Thomas proposed marriage, Mae didn't think long or hard.
Solely dependent on Mae's disability check, which Thomas often appropriated for his own mysterious purposes, the couple bounced from one slum apartment to another. One house actually collapsed while they were living in it. Meanwhile, Thomas made little effort to disguise the crueler aspects of his personality. Mae says he hit her occasionally and once dumped her out of her wheelchair. When he left, sometimes for days at a time, he put the telephone on a high shelf where she couldn't reach it. If they were on a second floor or higher, she would find herself cut off from the world.
(Reached last week, Thomas acknowledged that he was not a terribly kind husband to Mae but insisted that he was "not a total villain" either.)
The marriage, though, did provide Mae with what she wanted most. In November 1983, Pamila was born, a plump baby with curly auburn hair.
At first, the child enabled Mae to escape the misery of her marriage, but before long, Pamila's behavior became as disturbing in its own way as Thomas'. The baby started throwing head-banging tantrums, and Mae's attempts to control her left her black-and-blue. Eventually, Pamila was diagnosed with manic depression.
If Mae had hoped the birth of a child would reform her husband, she quickly learned otherwise. She says he continued to spend her money on his own pursuits, sometimes leaving her without enough to buy diapers. Mae was reduced to selling her own clothes to raise emergency funds.
By Christmas 1984, when Thomas abruptly announced they were moving again, Mae had had enough. She took Pamila and fled.
Life didn't improve much without Thomas, though. Mae and Pamila lived briefly in a facility for children with disabilities. (The House of Ruth couldn't accommodate a wheelchair.) After two months, they moved into an apartment on 20th Street, where one afternoon a neighbor broke through her door and raped Mae while the baby wailed nearby. After Mae fingered the man to police and prepared to testify, she began receiving harassing telephone calls and had rocks thrown through her windows. Mae fell apart.
She ate only sporadically but every week emptied more than a gallon of vodka mixed with Coke. She was also addicting herself to the Valium her doctor prescribed. Sometimes, catching a glimpse of herself in a mirror, she would wonder who the gaunt, colorless figure was, staring hollow-eyed at her. She was disappearing before her eyes.
After her foster mother died, breaking the last link to anyone who cared for her, Mae began picking men up, indifferent to their identities or intentions. She wanted to make the loneliness go away. Eventually, she struck up an acquaintance with a jovial man named Kenneth Jackson, who, before she knew it, moved into her apartment. Kenneth loved parties and nightclubs. He also loved needles. When he developed skin infections, Mae nagged him to get tested.
He was HIV-positive. Mae was too. That, and pregnant.
In the midst of this upheaval, Pamila went to school one day in March 1991 and didn't return. Protective services had come for her. She had told her teachers that Kenneth had been molesting her. Two days later, the police came for Kenneth.
It was not the first such report, but Mae had never believed them before. Pamila's behavior had always been peculiar, and, besides, Pamila and Kenneth were never in the apartment alone.
It would be another year before Mae fully accepted the truth, and, of course, she knew how badly it reflected on her. "I hated myself because I didn't do what a mother was supposed to do, and that was protect her child."
Still, she remained with Kenneth and was at his side when he died. Not because she loved him, but because she had promised him that she would be. "Even though I started to believe what he had done, I still didn't believe anybody should have to die by themselves."
Pamila tested negatively for the AIDS virus, as did the newborn, Nicole. But first Mae had to endure a false-positive test for Nicole. That test result broke Mae more than anything else had.
"It was too much. Everything just crashed. I stayed in bed all day. I didn't answer the phone. For so long I hadn't cared about myself, but I would have died for my children. And now I thought I had messed up my beautiful baby's life because of my stupidity."
She thought of suicide, but veered from it. Instead, she admitted herself for a month-long stay in the psychiatric unit at the University of Maryland Hospital. A combination of anti-depressants, intensive counseling, and the news that Nicole's test was faulty, nudged her back from the edge. For the first time she found herself talking openly about her molestation and the self-hatred that had always been there.
The hospital stay proved a turning point. She swore off hard liquor. She resolved to move from the squalid apartment house on Franklin Street where she slept with a butcher knife under her pillow. And she decided to give Nicole up.
The idea had been nagging at her for some time. More than anything, Mae feared solitude, but it was becoming evident that she was incapable of caring for a child. Nicole was already a toddler, and Mae couldn't keep up with her. There was also the problem that Mae was dying.
Once she made the decision, she moved quickly.
"She's my daughter, she's my child. I love her dearly. But I realized the longer I would have kept Nicole, the harder it would have been when the time came to give her up, for both me and Nicole."
She hoped to place her daughter with a Baltimore family, so she could maintain regular contact with her. But she was not satisfied with the Baltimore families she met through a private adoption agency. She very much did like a single mother and Philadelphia attorney named Barbara McDermott. Barbara already had adopted a little girl two years older than Nicole. She also was willing to satisfy Mae's only condition -- that she be allowed to remain a part of Nicole's life.
Last spring, the adoption became final. Mae found herself alone again.
A good friend
The most constant relationship in Mae's life is with Pat Halle, a down-to-earth woman in her mid-40s. Pat is intimate with the ebb and flow of Mae's life, including all her catastrophic decisions and her suffering. If anyone might be expected to be exasperated by the never-ending pathos of Mae's life, it would be Pat Halle. But that is not how she feels.
They met when Mae was a teen-ager and Pat was, as she remains today, a paralegal with the Maryland Disability Law Center. By then Mae had lost the ability to walk, and Pat arranged for the installation of a stair glide and ramp at Mae's house.
Over the years, Pat was there for other emergencies as well. After Mae left her husband, Pat helped her to a shelter She found housing for her on several occasions and directed Mae to the private adoption agency to find a family for Nicole. Pat was also the first person Mae called after her rape, and she sat with Mae throughout the trial.
During that time, Pat came to think of Mae more as a member of her extended family than as a client. It was a unique sentiment for Pat, who has helped hundreds of disabled people. But she found herself moved by Mae's indomitability and resilience.
"When you're disabled, everything is harder, from putting on your clothes to finding a place that can take you after you've been beat up," Pat said recently over lunch near her mid-town office. "The thing about Mae is she doesn't give up in the face of obstacles that would daunt and overcome most people."
Pat believes that if Mae had been born 15 or even 10 years later, her life would have run in less tragic directions. "Her [foster] mother cared very much about her, but had the attitude that this was a handicapped child who would never be able to do anything with her life. She was not educated to be part of this world. Many of her peers were mentally retarded and lying on mattresses all day. They were not appropriate peers for someone like Mae, who is very bright and was capable of so much more.
"It angers me."
To Pat, Mae's experiences underline a point many people overlook. Disability, especially coupled with poverty, makes the world not only more difficult, but far more perilous. "Most of us grow up and live in a safer environment in which we make our mistakes," she said. "Disability and poverty eliminate that cushion."
Mae has borne the full impact of virtually every mistake she has ever made. What is surprising, Pat says, is that Mae always manages to pick herself up and continue on, earnestly and without self-pity. Somehow, the morsels of happiness she ekes out along the way are enough to sustain her.
When Pat thinks of Mae, she sees an unusual combination -- haplessness and strength.
It is darkening outside when Pamila breezes through the apartment door, trailed by her new foster mother and her therapist. She bounces in and out of Mae's arms, glances out the living room window, surveys the stuffed animals along one wall and sticks her finger into a cage holding Mae's two guinea pigs. Even when she finally throws herself into a seat at Mae's dining table, Pamila remains in motion, her legs pumping furiously like two pistons.
Since losing Pamila in 1991, Mae has never really entertained the idea that her daughter would return home. But she never stopped thinking of herself as Pamila's mother. She involved herself in decisions about Pamila's care and visited her at at least once a week and on holidays and birthdays. Trips to Villa Maria in Cockeysville, Pamila's most recent home, were arduous for someone bound to a wheelchair. Mae would ride several blocks to a light rail stop, then take a train downtown to a bus stop where she boarded a bus for the 45-minute ride north.
Wearing only her thin white parka one freezing day in early December, Mae made the trip for the last time. Pamila was being transferred to the care of a foster family, one of the few willing to take a child with Pamila's problems. Mae was there at Villa Maria when her daughter drove off with her new parents.
The urge to cry during the bus ride home was powerful, but Mae wouldn't give in to it. She had long hoped Pamila would end up in a normal family, and now that had finally happened. Still, all Mae could think was "Where does this leave me?"
She had her cry, long and intense, when she got home.
That was last week, though. This afternoon, with night falling outside her apartment, Mae is all smiles for this half-hour visit with Pamila. They chatter about her new room and the Christmas concert at school earlier in the day.
The presence of a stranger in the apartment distracts Pamila. "I ++ love my mom to death even if she has the virus," she says apropos of nothing. "Even when she dies, I'll love her to death."
Mae has been open about her disease but is upset that Pamila would volunteer such intimate family information to someone the girl met five minutes ago. Mae puts her index finger under Pamila's chin to force the child to meet her mother's eyes. "Mike knows about my virus, but what's our policy about that?" Mae asks.
"To keep it private," Pamila answers.
"Pamila, I feel I have to -- take that out of your mouth. Mike to you is a total stranger, so that isn't appropriate. I feel I have to give you a consequence."
She decides that Pamila will not be allowed to watch television at her foster home that evening. Pamila's foster mother nods in agreement. Pamila accepts the punishment without protest and chatters on about her Christmas concert and about the Miss Piggy stuffed animal that Mae is allowing her to take home. "Usually, I can't because I don't take care of my things," Pamila says.
And then her foster mother is rising to her feet to go. Pamila leans over to kiss Mae on the cheek. "I love you, Mommy," she says. "I love you," Mae replies, and Pamila is out the apartment door.
It is black now outside and the visit has left Mae drained and somber. It has taken her weeks to relate her sad biography, but she has done so eagerly, earnestly. Now, she faces an unexpected question: Why does she think her story should be told? Where is there redemption in a life of such unending disappointment?
Her answer is not long in coming. "There are people out here who haven't had to put up with half of what I have and who don't feel their lives are worth living. I want to show them, to show my children, what I've been through, what my experiences are.
"There's something inside me that won't let me quit, that keeps driving me to continue. I just want to let people know that no matter how bad your life seems to be, there's a reason to go on.
"Life is worth living."
If one did not know Mae's story, it would be easy to dismiss her answer as platitude. But in her case, one senses how complicated the calculation is. With Mae, contentment, which comes in rare doses, is always inextricably bound together with despair. She cannot have one without the other.
Monday morning, Nicole, looking like a butterfly in her red-and-white polka-dot Christmas dress, floats through the apartment door. Alvin and the Chipmunks are singing Christmas songs on the record player. Even though Nicole hasn't seen Mae in nearly four months, the child is perfectly comfortable with her, jumping into her mother's lap and happily accepting her kisses and hugs.
Accompanying Nicole is her adoptive mother, Barbara McDermott, and her 6-year old adoptive sister. Coincidentally, her name is Nicole, too, so Mae's Nicole has become Coley.
Barbara is affable enough to take the edge off an inherently awkward situation, and after a time, she leaves with Nicole to give Mae and Coley time alone.
Mother and daughter spin in a circle in the wheelchair. ("I'm dizzy, Mommy." "I'm dizzy too, Coley.") They giggle at videotapes of Coley as a baby. They eat pizza at the dining-room table, Coley waiting patiently while Mae clumsily cuts it into slices.
Mae gently runs her fingers through Coley's hair. "I was afraid if she cut your hair short the curls would go away, but they're still there."
They play the memory game Mae has given Coley. Every match Coley makes, Mae claps her hands together. "That's my girl," she says. "That's my girl."
While they play, hunched over the pieces alongside each other at the table, "Santa Claus is Coming to Town" tinkles over the radio. Mae starts to sing along absent-mindedly. Coley joins in.
They laugh, they tickle, they nuzzle.
At mid-afternoon, Barbara returns. Anxious to stay ahead of an approaching snowfall, she collects Coley and departs. In an instant, the apartment is again quiet except for the occasional squeals of the guinea pigs.