Carol Hardaway woke in the morning and padded over to her 8-month-old son's crib. A towheaded blue-eyed boy peered up at her, smiling, enveloped in one of her old T-shirts. "Are you ready to get up?" she asked. She reached down into the crib and wrapped her hands around his torso to lift him and was surprised that she couldn't. Even as she saw her right hand make contact, she couldn't feel Chris' warmth or his softness. It was as though her fingers belonged to someone else. She picked him up with her left arm and went about the morning, readying herself for work tending bar at TGI Fridays. Hardaway had an unsettled feeling in her stomach. That day, January 17, 1986, is a date as easy for her to recall as her own birthday.
Behind the bar, the suspicion that something was very wrong only grew. She picked up a mixing tin with her right hand and dropped it. She knelt down to pick it up and dropped it again. And again. Her arm felt like she had slept on it. She informed the manager that she had to go. "Something is wrong with me." She checked into a hospital in Plantation, Florida. The doctors suspected stroke and ordered a battery of tests. They performed a spinal tap to check for meningitis and insisted she remain under observation. She called her parents and asked them to pick her son up from the sitter.
After a week, the hospital released her. She was negative for meningitis, stroke or cerebral palsy, but the numbness and listlessness had spread to her entire right side. The diagnosis was that her symptoms were psychosomatic.
Another three weeks passed before life and sensation returned. She went back to work, moved on from the strange episode and raised her son. But some four years later, when she was in her early 30s, her perfect eyesight degraded to near legal blindness. Her peripheral vision was vanishing. Hardaway was passed from an optometrist to an ophthalmologist to a retina specialist, each as confounded by the sudden deterioration of her sight as the last. Then a neural optometrist ran Hardaway through an MRI and showed her the folds of her brain, rendered in shades of gray. She pointed to tiny black spots, lesions where the insulation on the wiring of her brain had corroded, and diagnosed Hardaway with multiple sclerosis, a degenerative disease of the axons, which transmit signals from the brain to the rest of the body. There is no cure, and someday it could get worse.
"I started crying. I didn't go through the pity party, but I grieved. It was life-changing. I was diagnosed three days before my son turned 5," Hardaway says.
After a while, the episode passed much like the last. That was the pattern — brief flare-ups followed by long remission. Eventually, the disease attacked her short-term memory so that there were times when she couldn't remember if she'd brushed her teeth. Muscle spasms caused her "breathtaking pain," and she experienced fatigue that sleep couldn't remedy. The symptoms came and went, and Hardaway lived in between them the best she could.
In 1994, she married the man who provided tech support for TGI Fridays' phone system, and they set up a successful installation company. They bought a beautiful old house for next to nothing in Celina, in Collin County. Chris grew into a young man who knew when to straighten out his mother's curling toes and arching ankles as she had one of her spasms.
On a recent afternoon, 59-year-old Hardaway, a tiny fireplug of a woman with a loud, hoarse laugh and a devious sense of humor, tottered across the creaking wood floors on recalcitrant legs, leaning on walls, chairs and tables as she made her way through the home. In the last six months, her illness hasn't gotten better like it did before. Accumulating scar tissue on her brain from decades of flare-ups has created a permanent and steadily worsening condition. She's falling too much. For the first time, she's using a cane. She hasn't been treated since her diagnosis and hated the side effects of the steroids her doctor gave her.
Hardaway knows she needs treatment but hasn't had health insurance since she left TGI Fridays. When she and her husband ran their business and times were good, they just paid cash when they needed to see a doctor. They've since divorced. Hardaway has waited tables at a local diner over the last few years when she feels up to it, but now that her legs won't cooperate, she's living on what's left in her retirement account. In her condition, insurance is prohibitively expensive, even with the state-administered high-risk health insurance pool. That's about to be terminated anyway, and the insured will be rolled over to the federal health insurance marketplace created by the Affordable Care Act.