LETTING GO OF FEAR

Implant a first step toward a new life

After undergoing deep-brain stimulation to help quiet her obsessive-compulsive disorder involving a fixation on germs, Thomasine Williams now spends more relaxing times with her grandchildren, Jeffery Mayweather (left) and Cailen Grandy.
After undergoing deep-brain stimulation to help quiet her obsessive-compulsive disorder involving a fixation on germs, Thomasine Williams now spends more relaxing times with her grandchildren, Jeffery Mayweather (left) and Cailen Grandy.

Correction: Dr. Robert Brady is the former therapist of Thomasine Williams, an obsessive-compulsive disorder patient at the University of Arkansas for Medical Sciences. The doctor's first name was incorrect in this article.

Thomasine Williams keeps a beach towel tucked underneath her mattress.

It's a happy, bright pink, covered with faces on ice cream cones, and scattered with hearts and lips and phrases like, "Tasty" and "Sweet."

But for Williams, it's an unhappy reminder of her past.

Of her childhood, when friends remembered that she would line up her pencils, slant her papers a certain way and hide under her desk when something was out of order. Of decades of stop-and-start therapy and medicine cocktails. Of even just a year ago, when she would carry large totes with bottles of hand sanitizer -- and that towel.

"I wouldn't sit on anyone's chair," she said. "I would just take this towel, and [then] I would sit on the chairs."

Williams, 40, of Sherwood is among the 2.2 million American adults diagnosed with obsessive-compulsive disorder.

According to the National Institutes of Health, 2 percent to 3 percent of those cases have a lifetime prevalence. Of those cases, 10 percent are considered severe and resistant to treatment, said Dr. Erick Messias, an associate professor at the University of Arkansas for Medical Sciences' Department of Psychiatry.

Williams has that rare form. Plagued with thoughts about germs and contamination, her compulsion is cleaning. She would still be under those "debilitating" conditions had it not been for a rare surgery at UAMS.

"We all have some level of obsessions and compulsions," Messias said. "It's kind of a magical thinking. Children have a lot of this. Over time, we tend to grow out of this stage of magical thinking. But people with OCD, they tend to have specific rituals, specific things that they do to try and control destiny."

It's a need for control, he said, and it's very strong.

Williams first started therapy in the late 1990s. At the time, she didn't know what she had, and therapy was never a constant.

I'll be OK, she thought.

Life went on.

Nursing dreams

Williams gave birth to her daughter, Sasha, in 1991 and her son, Blake, seven years later. She always worked at least two jobs. And she dreamed of becoming a nurse, so she sprinkled in a college course here and there.

But, as her children grew older, Williams noticed her habits growing stronger.

At a movie theater, she laid out a towel before taking her seat. At a restaurant, she ate in takeout containers with her own plastic ware. At a buffet, she used a glove to touch the ladles and spoons "that a million people's hands have been on."

She flinched at touching door handles. When riding an elevator, she wished someone else would press the button.

At home, her children said they cleaned every day: the baseboards, the floor, vanity spaces, everything. They bathed the dog three times a week.

No one wore shoes in the house, at least not around her. If they did step on the tile floor with their shoes, Williams could tell the difference. Her son calls it "OCD X-ray vision."

"She would stay up to 6 [a.m. cleaning]," Blake Williams said.

At one point, she was even fired from a waitressing job because she kept calling off work.

I've always been a good waitress. Why is this happening? Why am I getting to a level where I can't even go to tables?

Sometime in 2010, she had had enough. She went to UAMS and was diagnosed.

The first time Williams met Messias, she wouldn't shake his hand. Then she established a spot in the waiting room and wouldn't stand anywhere else.

Someone has coughed here. Someone has accidentally urinated here. Someone has wiped his nose and put it here. And I'm going to rub my eye. Or touch my face.

The pink beach towel quickly became Old Faithful, going to each doctor's visit, along with her own manual blood pressure cuff and thermometer.

Messias began trying different medications to treat Williams.

"The medications are antidepressants, actually," Messias said. "She got a little better, but it was still very severe."

Since 2010, Williams had tried up to five of the six different medications -- in varied combinations. For most with the disorder, medication with therapy keeps the obsessions and compulsions in check.

At the same time, Williams endured week after week of therapy.

Ice cream in the bathroom

In one type known as exposure therapy, she had to face her fears -- particularly about public bathrooms.

"I would walk by, and I would see her and her therapist in the restroom together," Messias said. "And they would have to stay there for a minute. And then two minutes. And then five minutes. And then 10 minutes."

One of her therapists, Dr. Richard Brady, pushed hard.

Is this really happening to me? Is there an option for me to say, "I just don't like this?"

"He'd always go back to that darned bathroom every time," she said. "Even on Dr. Brady's last day, we were in the bathroom eating ice cream, and I'm just welling up in tears. And he's just like, 'Just eat the ice cream.'"

The treatments didn't work for her. Williams was spending some 10 to 12 hours a day cleaning. It spilled into her social life, her family life, her working life.

"In the cases that are severe enough that you don't respond to the available treatment like medications and therapy, we have to look for options for things we can do," Messias said. "For many years, in psychiatry, we have thought that there would be a surgical option for OCD."

Certain areas in the brain identify and act on danger, he said. Doctors have learned that if they place electrodes near those brain circuits that are designed to look for "some things that are off," they can change behavior and thinking, he said.

Messias read about different brain procedures to treat the disorder and talked to Dr. Erika Petersen, an assistant professor at UAMS' Department of Neurosurgery. Specifically, he was looking at deep-brain stimulation, a procedure most typically used for patients suffering from tremors or Parkinson's disease that reroutes signals much like a pacemaker does for the heart.

"We know that in some of the circuits, there's a connect of four or five different stations along the route, basically," Petersen said.

"What deep-brain stimulation does is by targeting one of those stations along the route, [it creates] an electrical force field that prevents signals from crossing and changes the way that the signals are going around that circuit and sort of reregulates."

The procedure is less invasive than its predecessors, which involved cutting out brain tissue, Petersen said.

The Food and Drug Administration first approved deep-brain stimulation in 1998 for tremors, Petersen said. About 2009, the federal agency approved an exception to allow the procedure for those with severe obsessive-compulsive disorder when all else fails. There hasn't been enough testing on the procedure for the federal agency to approve it for most patients with the disorder, however.

The academic medical center created an open protocol for the procedure in 2012 and reviews it annually, Petersen said.

At UAMS, doctors identify the procedure's recipients selectively. Each candidate undergoes neuropsychological tests -- including evaluations for mathematical, verbal, visual and oral skills -- to a give doctors an idea of the base-line cognitive abilities, Petersen said.

Petersen and Messias pitched the procedure to Williams in 2013.

No. This is not an option. They won't be sanitary in there. And I'll be asleep and won't know what's going on.

A harsh reality

The tipping point for Williams' came during the neuropsychological testing, when Dr. Jennifer Kleiner, an assistant professor in the psychiatry department, gave her a stark realization about her nursing dreams: "You do realize that this may not be the field for you."

This is it. There is no other field for me.

Williams was one class short of earning her nursing degree.

"I remember me getting in the car, and I couldn't hardly drive," Williams said. "I was shaking so bad and crying. And the UAMS police people stopped me because I was so upset 'cause of what she said. But I look back on it, I think if it wasn't for her saying that, then I probably wouldn't have pushed a little harder."

Now, she had to get everyone else on board -- and that wasn't easy either. She, her family and her friends visited with Messias; Petersen; and Dr. Steve Metzer, a UAMS professor in neurology, who went over the procedure.

"You're going into her head. You're putting something inside of her that could affect her not even now, but long term, it still could," her daughter said. "It bothers me. But if this is what she wants, and it'll help her, and she feels like it'll calm her more, then I said, 'OK.'"

A year later, on June 16, 2014, Williams underwent surgery, making her the second such patient at UAMS. Fewer than 20 hospitals nationwide have done the procedure twice for obsessive-compulsive disorder patients, Petersen said. Williams arrived prepared -- with another beach towel for surgery.

"And as I was drifting off, I remember saying, 'Don't forget my towel,'" Williams said.

Some four weeks later, she returned so Metzer could program the machine in her chest that sends impulses to electrodes in her brain . Its battery will run low in about two years. Then, she'll need surgery to replace the battery pack.

Over the next year, she continued medication and therapy.

"She went from not touching my hand to giving me a hug," Messias said.

The May therapy session was her last for a while; she wanted a break.

Meanwhile, a world of new possibilities was opening up.

She began administering wound care to an elderly woman who had skin cancer -- work she'd seen her mother do for years as a nurse and it had stoked her own passion for the profession.

She went to the park for her grandson's first birthday party and didn't even take hand sanitizer -- though her daughter did.

Baby steps.

There are still things Williams is working on. She won't use public bathrooms. Shoes still come off in the house.

That one-year mark passed. It was emotional for Williams, but family members and a close friend rallied to support her.

And that towel?

Brady wanted her to get rid of it completely.

"I'm not throwing the towel away," she said. "Now we put the towel up. I don't want to see it."

In the next year, Williams wants to finish earning her nursing degree. She just needs to take chemistry for the fourth time.

"UAMS is really where I want to be," she said. "And if they don't take me, that's OK. Someone will take me."

I want to do this. This is what people do. This is how they live their lives. You'll be fine.

SundayMonday on 07/05/2015

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