It wasn't until her regular doctor got sick and his replacement said, "Oh, you're the lady who has MS," that Betty Carpenter learned she was a victim of multiple sclerosis.
It wasn't until she got home that afternoon, looked up the Multiple Sclerosis Society in the phone book and called that she learned what it was. She falsely told them her sister had the disease and could they tell her about it. That was 11 years ago. "I don't know why I did that (lied)," the Upper Marlboro woman says now with a laugh.
It wasn't until last January, after an exhausting Christmas season, that Carpenter, 44, knew the full power of MS--an incurable disease of the central nervous system that generally strikes young adults. The disease breaks down the myelin shealth that insulates the nerve fibers of the spine. When scar tissue forms, messages from the brain are not transmitted accurately, often resulting in loss of strength and coordination.
Before January she had experienced some of the typical symptoms: periodic numbness in the limbs, some staggering, a little slurring of speech once in a while, an occasional fall. She had bounced back with little trouble from two attacks.
But in January she suffered an attack that left her paralyzed below the waist and hospitalized for 39 days. She temporarily lost bladder and bowel control. It did not look as if she would ever walk again.
"I was really scared. Nothing moved from the waist down," she said.
But life as an invalid did not appeal to Carpenter. Less than three months after coming home from the hospital, she amazed her doctor, physical therapist, family and friends by walking again, making beds, cleaning bathrooms, preparing dinner, planting flowers in the patio. The hospital bed and portable toilet are gone from the living room, and she even negotiates the three sets of stairs in her split-level home. Her motivation and progress have impressed everyone.
"Very few do nearly as well as she does," said her physical therapist, Candy Van Iderstine. "She's been very remarkable."
Carpenter is like a small-but-mighty bantam hen. She has warm brown eyes, reddish brown hair and a pert face, and chatters excitedly. She claps a hand over her mouth and makes round eyes.
Her determination to learn to live with the disease was partly inspired by a newspaper article about 1964 Olympic bronze medal skier Jimmy Heuga, who contracted multiple sclerosis in 1967. He has conquered the paralyzing effects of MS through a regimen of exercise at home and has resumed skiing.
She says she also was inspired by an intense desire to wash her hair.
"I wanted the privacy of the bathroom. I couldn't stand that. I wanted to wash my head," she explains. So when her sister returned to Miami after rearranging the kitchen to permit Carpenter to cook from her wheelchair, and when her husband Leland and 19-year-old daughter Wendy left for work and 10-year-old Lori left for school, leaving her in privacy, Carpenter says she began to "fool around."
First, she swung herself off her bed onto the floor and dragged herself around the house with her arms. As the days passed she found she could get into the bathroom. With the aid of an old beanbag chair, she heaved her head and shoulders over the side of the tub and washed her hair. A full bath was next, although she said she was a little afraid she might drown. Since she could do that much, she thought, she might as well clean the toilet. The beds had to be made, and she hated to see her tired husband do it when he came home. She crawled around, tugging at the sheets and spread, until that, too, was on her "can do" list.
Spring had arrived, and being "a big nut on flowers," she wanted to be outside. The family had always entertained around the patio and pool in their secluded yard. She found a skateboard and scooted around the patio planting petunias. "I fell off three times," she recalled.
She even rolled down a hill to the pool to plant more flowers.
MS patients typically tire easily, and Carpenter found that she would drop off to sleep on the floor of the living room or bathroom or patio or wherever she was. She would awaken refreshed in 10 or 15 minutes and would resume what she had been doing. Gradually, feeling, strength and control returned to her limbs. Carpenter now wears leg braces and can walk with the aid of two canes.
"I just kept doing things like that, and I got stronger and stronger. I just kept doing everything around the house, and now I can take care of the whole house," she said, sitting in her spotless living room.
Carpenter's neurologist, Dr. Morris A. Osborn, said, "We didn't do anything spectacular as far as medicine is concerned" for her. "We just paid a lot of attention to her needs. The hospital (Southern Maryland) is small, and the staff has time to cater to these things."
Osborn said he doesn't usually see progress as fast as Carpenter's has been, but "we don't deter spirit in patients. We encourage patients to be resourceful We would discuss Carpenter's efforts at home by phone. I encouraged her a lot to do things."
MS patients often are afflicted by swings of emotion. "It's very common for MS patients to experience a euphoria and depression cycle," therapist Van Iderstine said. "But she has a healthy optimism all the time."
Although she does not know Carpenter, Carol Montgomery of the Washington Chapter of the Multiple Sclerosis Society agreed that a positive attitude can help MS patients overcome their disabilities.
"With any disability, if you work to overcome it, you certainly are going to be much farther down the pike," she said. "Anybody who sits down and pulls up the sheet is going to have a problem."
Life before MS had always been active for Carpenter and her husband, a retired Prince George's County police officer who now is a supervisor at the county landfill.
Carpenter stayed home to raise Wendy and was a foster mother for infants waiting to be adopted while she and her husband planned to have a second child. She had noticed some numbness and tingling in her arms and legs and sometimes her speech became slurred. They were complaints "you'd feel silly going in [to see the doctor about] all the time," she said.
She seemed unable to have another baby. In nine years she suffered eight miscarriages early in the pregnancies. The Carpenters had applied to adopt a child and were high on the waiting list when suddenly Betty Carpenter began falling frequently. That's when she was diagnosed as having a neurological disorder. Then, when her doctor became ill, she learned she had MS. The physician later died, and Carpenter said she does not know why he did not tell her he believed she had MS.
The diagnosis ended her work as a foster parent and also killed her hopes for an adopted child. Because MS patients fall easily, adoption officials will not give them babies, although it is not unusual for MS patients to conceive and bear children.
It was then she learned she was pregnant for the ninth time, with a baby she carried to term, when her daughter Lori was born.
"I never had a minute's trouble" with the pregnancy, Carpenter said. Young Lori grew up knowing about with her mother's ailment, helping her with daily exercises and explaining, when her mother staggered in the supermarket, "My mommy's not drunk. She's got 'multi scrotious.' "
Despite last January's setback, Carpenter says she's been lucky: "Look how many years I've had without a crippling attack ."
Her greatest fear, however, is going blind, another possible consequence of MS. "I'm more afraid of being blind than I am of being crippled, that and losing bowel control. I want to be able to see my daughters get married and see the white dress and everything."
Her greatest hope, she says, is for a cure for MS.
Still, she says, she is fortunate: "Everybody's got something they've got to live with. So this is my thing. I just hope it doesn't come back."