By Camilo Smith
By Craig Malisow
By Jeff Balke
By Angelica Leicht
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By Sean Pendergast
By Sean Pendergast
By Jeff Balke
On this recent Sunday, Glenda Turner takes her place in a back pew at Holman Street Baptist Church and is soon swaying gently. She smiles serenely as Pastor Manson Johnson croons in a rich baritone that "the Lord is blessing me right now."
Turner's pleased. The woman in the gray pantsuit has made it through the introductions and the other preliminary rituals of the service with the kind of calm contentment befitting the surroundings. Fifteen minutes have passed. Then 30.
Far away at the altar, the blue-gowned men and women of the choir bellow, "Rejoice!" Almost without warning, Turner holds up a finger as if to say "wait." Her face begins to quiver. She lets out a muted cry and plants her left hand firmly on the back of her neck. Her body quakes.
With her other hand, she manages to clutch a small container of tablets. Turner extends it as she beckons a girl named Princess to administer her muscle relaxants. "All right, okay, put the first pill in my mouth," she groans. Princess does as she is told, while a man in a business suit tries to pry Turner's hand from her neck.
Her legs stiffen straight out in front of her, the tension in the feet twisting her silver pumps until they are pigeon-toed. Turner instructs Princess to sit on her legs to loosen them up. The girl obliges until she is replaced by a heavier, middle-aged woman in a navy blue dress.
People start to stare.
Another parishioner joins in trying to yank Turner's arms down. "You've got to push them down," Turner pleads. A third man arrives, bringing the hive of helpers to five. Grunts and grimaces and a fierce battle of wills escalate until the group finally decides to remove Turner from the pew.
Two men grab her head and shoulders; another lifts her feet. They execute a brisk exit through the open door and barrel down the hallway in a speedy waddle. Once out of the sanctuary, they ease the slipping woman to the floor. They soon manage to get a better grip. But Turner, her muscles violently locked in hard spasms, can only continue the struggle to come to grips with her baffling condition -- one that regularly brings on bizarre confrontations with startled friends and strangers.
Over the last decade, the technical writer and college instructor has had attacks as often as six times a day. For most of that time she had no clue why. It can happen anywhere and at any time -- even in a house of worship.
Glenda Turner is believed to suffer from Stiff Person Syndrome, a disorder so rare that many neurologists go through an entire career without seeing a single case.
Doctors initially figured her problems had something to do with her diabetes, or that it was all in her head. Several physicians think they now have the answer. First documented in 1956, Stiff Person Syndrome remains an enigma in the medical world.
The nonfatal condition is still commonly referred to by its earlier, politically incorrect term of Stiff Man Syndrome. The leading theory suggests it is an autoimmune disease that causes the creation of antibodies that mistakenly attack nerve cells responsible for muscle relaxation, says Dr. Mary Kay Floeter of the National Institute of Neurological Disorders and Stroke. The nervous system acquires a hypersensitive startle reflex, making muscles throughout the body vulnerable to sudden stiffness and painful spasms similar to that of a severe, prolonged charley horse.
While the cause of the underlying immune response is not known, Floeter says, an episode can be triggered by something as mild as a camera flash or sounding beeper or gust of wind.
Turner says the attacks often begin with her feet. If those around her remain silent and she pops a muscle relaxant, an episode can pass in five minutes without taking hold. But that rarely happens. Once her body locks and shudders, it takes a difficult fight by several helpers to free her of its force. Turner has learned the hard way that if she is alone during an attack, up to seven hours are needed for her body to relax.
While Houstonians are largely unaware of the little-known disease, Turner's episodes have enlightened emergency personnel and more than a few bystanders to its presence. Some fire stations have posted alerts describing Turner's condition and how to deal with it.
Jacquelyn Simmons, an emergency medical technician, saw the notice about Turner in the lounge area of Fire Station 35. She'd already heard her colleagues' war stories about the woman with the strange neuromuscular problem.
Her first experience with Turner came during an emergency call in October. Simmons was part of a team that rushed to Scott Street, where 35-year-old Turner writhed in pain inside a crowded office that distributes food stamps. Turner's stout body was rigid, and her muscles convulsed violently. An anguished scowl twisted her caramel-colored face.
"We had to start beating on her, straightening her arms out, holding her real tight," Simmons recalls. "Someone actually called 911 and said firefighters are beating on a woman." Two harrowing hours after arriving, the crew restored Turner to normal.
Herbert Royers oversees the cashiers, sackers and other workers at the Fiesta supermarket at 8130 Kirby Drive. He has gotten to know Turner in recent months during the handful of attacks she has had while shopping.
"Her muscles lock up so we have to straighten out her arms and legs," Royers says matter-of-factly. He marvels that despite her apparent agony, Turner gives the crowd of five or so precise instructions about helping her. "At first it was a weird thing, but now it's really nothing."
Evelyn Hughes is not as nonchalant. The proprietor of Evelyn's Hair World in South Park remains traumatized by her one encounter with the affliction. Hughes was styling Turner's hair in November when a police siren outside caused her customer's body to lock up in the swivel chair. Terrified, Hughes followed Turner's command to call the fire department. Medics arrived to work with Turner on the hair-strewn floor.
The scene turned chaotic when a fire department supervisor showed up and ordered the men to stop, believing she was faking her disease.
"I've never seen nobody so cruel," Hughes says. "To me, this girl was dying. It was a bad situation."
"I'm blessed. Blessed, blessed, blessed," Turner purrs into the telephone the Saturday before Christmas, presumably in response to a question about how she's doing. Her hair is mussed, and she wears a T-shirt, pink pajama bottom and slippers.
She is back in the house of her youth, a modest ranch-style home off Martin Luther King Boulevard. Turner has returned to live with her mother, Pearl, an administrative assistant at Memorial Hermann Hospital. Her father, a maintenance supervisor who frequently held two or three jobs at a time, died in 1997.
The youngest of three girls, Turner seemed destined for a remarkable life.
In third grade, Turner's teacher at the local elementary school thought she needed a more challenging curriculum and sent her across the city to a Vanguard program. It engaged her academically but alienated her from the neighborhood kids who already ridiculed her for "talking white."
She experienced her first tragedy at age 12. Turner was talking on the phone with her closest friend when a gunshot rang out on the other end of the line. Sounds of a commotion replaced her girlfriend's cheerful voice. The girl's brother had been playing with a gun and, thinking it was not loaded, pulled the trigger. Turner's friend died of a wound to the head.
"It's so strange how my whole life changed. I wasn't a little girl anymore," Turner recalls. "I knew if I prayed, she'd live. But she didn't. I went through a period of not understanding who God was."
She immersed herself in writing to cope with the confusion and pain. Turner already had a reputation as a scribe, dating back to when she read her first poem in church at age five. She went to the High School for the Performing and Visual Arts, where she founded her own acting troupe, The Black Performers of Truth.
Outside school, Turner headed then-congressman Mickey Leland's youth task force and helped run a summer theater workshop for inner-city kids. After high school, she went to Fisk University in Nashville, one of the oldest black colleges in the country. She thrived among the intellectuals and artists she met there, including historian John Hope Franklin and dramatist George Houston Bass. A born activist, Turner plunged into campus politics with the same verve she brought to the stage, becoming president and commencement speaker for her class.
One of her longtime friends is Patricia Vandible Stallworth, a chemical engineer who would go on to become a trustee on the board of Houston Community College. "She was extraordinary even at Fisk," Stallworth says of Turner. "She made her impact as a personality, as a character and even as a student."
Her first indication of medical problems appeared during her junior year, when Turner was diagnosed with diabetes. Determined not to let it slow her down, she continued to take a hefty course load and work full-time as a staffing coordinator at a hospital. After college graduation in 1988, she took a series of jobs as a technical writer and computer specialist. In the fall of 1992, she joined the faculty of HCC as an English and reading instructor.
At about that time, Turner's health crumbled. She began vomiting incessantly, 20 to 30 times a day, sometimes in class. The eventual diagnosis: diabetic gastroparesis.
The condition became so severe that Turner left her job in November 1993 and spent two years in and out of hospitals. Complicating matters further, she grew addicted to the painkiller Stadol. But in September 1995 she decided she'd had enough. She bolted out of bed one morning and, with her father's help, got dressed and headed back out into the world. She landed a teaching post at the Texas School of Business.
Allecia Lindsey was a fellow instructor at that vocational school. She says her friend withstood daily bouts of nausea to become one of the most popular teachers there. She may have been ill, but she could make students passionate about poetry and rankle the administration with her rebellious streak. Lindsey recalls a faculty breakfast where bagels were served.
Turner eyed her mostly white colleagues mischievously and said, "What happened to the grits? Black people eat grits."
"They kind of laughed, you know, and the next time they did have grits," Lindsey says, chuckling. "That's Glenda Turner."
Humor was harder to come by as the woman began having mysterious spasms. Baffled students huddled around their teacher and kneaded and chopped her body till the trauma passed. For an independent person like Turner, constantly being at the center of a chilling spectacle and requiring the help of so many people was awful. "I have terrible guilt feelings with people having to baby-sit for me," she says.
Worse yet, no one could explain what was wrong with her. "What do you do with an illness where someone hugging you or a phone ringing could cause you to lock up?" she asks plaintively.
Doctors speculated that the attacks were related to diabetic neuropathy, a nerve disorder characterized by numbness and sometimes pain in the hands, feet and legs. Turner, who started to experience stiffness and spasms as early as 1989, believed the assessment was logical because the attacks often originated in her feet and legs.
Turner's gastroenterologist, Ben Echols, witnessed a few attacks in his office. "It's bizarre, isn't it?" he says. "She's the only person I've ever seen it with." He referred Turner to a neurologist who, Turner says, misdiagnosed her as having suffered a stroke.
With so many unanswered questions about her condition, people invariably began to speculate whether she was making the whole thing up, says longtime friend Patricia Douglas, a retired Ben Taub Hospital nurse.
"A lot of people did think she was just doing it for attention, because they couldn't fix it," she says. "Anything medical science can't put a diagnosis on within 24 or 48 hours, they want to send you to a psychiatrist for."
Nothing in her 23-year nursing career prepared Douglas for the many seizures she witnessed Turner having at church. She viewed the phenomenon in religious terms and encouraged Turner to keep coming to services, even if her episodes were disruptive.
"I felt like the word of God was going forth, and Satan just didn't want her to hear that because she would be delivered from whatever this ailment was," she says, punching certain words with a preacherlike cadence. "So my desire for her, and of course her desire, was to come to church and stay in there anyway even through a spell, because the word of God is the word of God. The word of God, it will heal, it will change you, it will save you, it will bless you."
Stallworth says it is obvious that Turner suffers from genuine afflictions.
"There is no doubt. It was painfully obvious that she was in a great deal of physical pain," Stallworth says. "To see firefighters who are bench-pressing 200, 300 pounds pound on her like she's a punching bag, unfold her and keep her from locking into a fetal position it's a lot to watch." She marvels that Turner has never suffered a bruise.
Simmons, the fire department medic, says she was skeptical until she actually treated Turner. "Some people think she's faking, but I don't. That stuff you have to do to her is too hard. We had quite a few men trying to pull her apart," she says.
There is still so much to be learned about Stiff Person Syndrome that even experts parse their words on whether it is more physical or mental. Floeter, of the National Institute of Neurological Disorders and Stroke, says that it is an organic disease and not a psychological condition. But, she adds, it often creates secondary psychological problems like panic attacks.
"It gets into a cycle, and it is very hard to separate out whether in fact anxiety is truly a biological component, or whether any reasonable person would be anxious if they had that sort of situation," she says.
Turner says she first heard the term Stiff Person Syndrome in the summer of 1997 when she was admitted to a Houston hospital for treatment for her diabetes. While doctors ran tests, Turner had several stiffening episodes. She says one doctor told her it might be Stiff Person Syndrome, which can develop from diabetes.
In August 1997 she took a consulting job in Dallas. Her health woes followed her. After a series of attacks, her company sent her to a specialist at the University of Texas Southwestern Medical Center. Having observed the spasms, Wilson W. Bryan, an assistant professor of neurology, wrote, "In the past, she has received the diagnosis of stiff-man syndrome."
In February 1998 Turner was admitted to an emergency room of the Dallas County Hospital District. The examining doctor put as a diagnosis in his physician report "Stiff Man Syndrome."
Since then other doctors, including Echols, have concurred with that opinion. Echols signed the medic alert that appears in firehouses across Houston, which says that Turner is a diabetic "diagnosed with a rare Neuromuscular Disorder -- Stiffman's Syndrome."
Turner's friends believed that with a name for the condition, Turner could begin healing.
"The name of God is greater than any name on this earth," Douglas says. "Every name comes under his. So it has to come under subjection."
Turner's life these days revolves around managing her illness. She no longer considers withdrawing from a productive life an alternative.
"I want to be active. I want to be engaged in my own life," she maintains.
She says she lost two jobs in the past after employers witnessed an episode. She now works as a technical writer for a consortium of oil companies.
Before Christmas she suffered two massive spells in one day at the office. Rather than fire her, Turner's supervisors reassured her. They even bought her a CD player to help drown out ambient noise.
"They did it because it was humane," she says gratefully.
Turner heaps similar praise on the Houston Fire Department for coming to her aid on more than 80 occasions, as have employees at several area stores.
Still, she does not want to depend on the kindness of strangers forever. Her goal is to find an expert who can make a definitive diagnosis and begin a course of treatment. Paying for the needed care will be tough, but her friends appear willing to pitch in and help raise funds.
"She is determined by all means to do battle with this illness. She just will not back down," Stallworth says. "She just continues to kick at the goat."
Turner hopes someday to launch a Web site for people with "orphan illnesses," rare conditions that slip through the cracks of mainstream medicine. The idea, she says, is to help people secure reliable information and funding for medical care. She wants to call the site nopityparty.com.
"To whom much is given, much is required," she insists. "I can't let it be just about me, because I have a lot of help."
That assistance was evident on the recent Sunday morning at her Baptist church. After the onset of the attack, her small group of helpers struggle to carry her from the crowded sanctuary and down the hallway.
"Shut the door, and we'll be good to go," Turner moans when they reach a tiny infirmary. Lying on a cot, she screams and pants as if in labor and counts down from ten.
Two of the men withdraw. Her mother, Pearl, wearing her usher's uniform, streams in with other women.
"Someone's got to sit on my legs, because the spasms are killing me," Turner cries. "Just sit on them."
A beefy fellow named Elvis Presley does as he is told.
Turner screeches about having trouble breathing. Her shoulder is "stuck," and her back spasms badly. A scrum of people squeeze, twist and whack her outstretched body as if it were a thick mass of dough. The pounding is the only way to get her muscles to release their grip. Through her pain, Turner bleats directions.
"Just hit me, sister," she bids a woman in gray.
Despite it all, Turner tries to keep a sense of humor. At one point she quips to the crew, "It's a good thing we all know each other."
After some 20 minutes of frenzied activity, her moaning subsides. The medication she took earlier in the worship service is kicking in. "The top part of me is coming back," she gasps with relief. Everyone in the room is breathing hard. Presley wipes sweat from his head with a paper towel.
"You're dripping, girl," Pearl Turner says to one of the ladies.
As the seizures dwindle, Turner sits upright in the bed, talking about the incident like one does a hurricane after it passes.
A few minutes later she returns to the service where a guest minister, who sounds like James Brown, leads the vast congregation in raucous song. The room is a pulsating sea of waving hands and swinging bodies. One girl gyrates up and down the aisles as though in a trance.
"That's church," Turner says with an infectious smile.
She's beaten back another attack, but Turner knows it will be more difficult to realize her dream of helping others cope with their rare conditions. "If I can be a voice to help people who don't have the tenacity or whatever to fight for their lives," she says, "then I'm willing to do it."