A Sister, A Partner, An Advocate: A Day on Capitol Hill

By Regina Reid
EpilepsyUSA staff
Posted: June 30, 2003

"How many more do we have?"

Catherine Lewis counted the shiny folders filled with epilepsy information as Amy and Stephen Sturdevant, a mother and son with epilepsy, helped her formulate a strategic delivery plan for the remaining packets.

They were planning "drop-offs" to close to 20 northern California representatives on Capitol Hill. They sought support for a "Dear Colleague" letter, authored by Rep. Neil Abercrombie (D-Hawaii), encouraging increases in funding for epilepsy programs and research at the national Centers for Disease Control and Prevention, as well as the National Institutes of Health. The more members who sign the letter, the better the chances for boosting the dollars designated to epilepsy.

Lewis, just 26, is the program services manager for the Epilepsy Foundation of Northern California. Along with several other attendees of the Foundation's 2003 Public Policy Institute, held April 6 through 9, she was on Capitol Hill to meet with her senators and representatives and talk about epilepsy.

Personal Reasons for Coming

Lewis's position at the Foundation would be reason enough for her to be there. But her motivation is more personal.

Her older brother and her boyfriend of five years both have epilepsy.

Her brother started having seizures when she was in high school and he was in his early 20's. Her room was right down the hall from his, so she was the first to see something was wrong.

"I woke up in the middle of the night and heard some really weird noises," she said.

"I knocked on the door and called his name, but he didn't answer. I went in and he was making gulping noises, like he was struggling to breathe. He was staring and non-responsive."

Lewis had found her brother in the post-seizure phase of a generalized tonic-clonic seizure. But she didn't know that at first. She and her mother found him like that a few more times, and each time, though afraid, they comforted themselves with the knowledge that he always came back around and seemed to be just fine before long. Finally one night, Lewis saw him having a convulsion and they were off to the doctor.

Memories Propel Her

Thoughts of her brother kept her moving when her legs felt weary on her way from office to office. She thought about the day he lost his driver's license. Or when he decided to take anti-epileptic drugs instead of contra-indicated medication for another condition. She witnessed his seizures progress from generalized tonic-clonics at night to include simple and complex partial seizures during the day.

Her meetings with Sens. Diane Feinstein (D-Calif.) and Barbara Boxer (D-Calif.) were supposed to be with their respective staff members, but Sen. Feinstein just happened to come by when Lewis and the Sturdevents were there. Lewis left those meetings and went to see Rep. Ellen Tauscher (D-Calif.), from her own district. She introduced herself to all as someone whose loved ones lived with epilepsy and asked for support of legislation to designate more funds for epilepsy research.

Little Sister as Alarm

Lewis was used to being the one to speak for her brother. Over the years it became routine for her to be the one to alert their mother when he had seizures during the night.

"It was hard to be so young and feel the burden of having to hear him," she said.

The burden of hearing and seeing her brother's seizures took its toll on her in the form of gastrointestinal problems that she didn't immediately associate with the stress of living with epilepsy.

"His seizures were fairly intense to watch," Lewis said. "He was a little more aggressive after his seizures than most people. He would try to walk a little too soon after a seizure, but if you tried to help keep him from stumbling and falling, he would push back."

After she graduated from high school, she was reluctant to leave for college, so she went to school locally until her junior year.

"When I went away to school, it really preyed on my mind a lot," Lewis said. "My brother's seizures weren't well controlled and my mother was struggling to deal with it. She had what was essentially a baby monitor in his room, and my brother, then in his late 20's, had a hard time accepting that he needed others to care for him."

From Sister to Girlfriend

Her boyfriend, the second man she's loved who has epilepsy, has yet to achieve control of his seizures through medication or implantation of the vagus nerve stimulator. The VNS has helped some, but not enough, and he is on the last medication he can try.

He's been dealing with epilepsy since he was 7 years old and is fighting to finish college while dealing with the cognitive effects of the condition and its treatment. In the past he has suffered discrimination on the job, but finally seems to have found a workplace that will accommodate him.

Lewis and her beau met while in college. She was doing a research project on the psychological experience of living with epilepsy and he was one of the people she interviewed. A courtship ensued some time later. They have long wanted to get married, but pragmatism has delayed their walk down the aisle.

"He receives medical benefits through Medicaid/Medi-Cal and Social Security, and if we get married, our incomes will be combined and he'd lose his benefits," she said. "We don't make enough money to make up for that."

The Last Meetings

They make it just in time for their scheduled appointment with Lee, and Lewis changes out of her casual walking shoes before entering the office. Although she'd been called away to a briefing with Secretary of Defense Donald Rumsfeld, Lee's staff listened attentively and compassionately and assured her support for the Dear Colleague letter. The group left with calendars and signed photographs of Lee.

Lewis had been particularly excited about visiting Lee's office.

"Barbara Lee is very outspoken about her views," she said. "She's always been supportive of health issues, the disabled and people of color.

"Congress is being controlled by people who are more conservative, but Rep. Lee is liberal and vocal about it. It was exciting to go into an office and know you'd be meeting with someone who's on the same page as you."

Lewis wasn't always this passionate about the epilepsy cause despite her personal ties to it. Her career path took the scenic route to epilepsy activism. After graduating with a Psychology degree in 1999, she worked as a community support specialist teaching independent living skills to developmentally disabled adults, some of whom had epilepsy.

She eventually developed the desire to become a disability rights lawyer, but after hearing the war stories of a father who was a lawyer and a mother and aunt who were also in the legal profession, she decided to work in a law firm before taking the plunge into law school.

She took a job as a paralegal, but ultimately missed working in the non-profit arena. She started volunteering for the Epilepsy Foundation of Northern California before signing on full-time last March.

She couldn't have known then that she'd eventually end up in the office of Rep. Richard Pombo (R-Calif.), their next visit.

Pombo holds the seat once occupied by Tony Coelho, senior vice chair of the Epilepsy Foundation as well as a former congressman who has epilepsy. He said he was pleased to sign the Dear Colleague letter. Lewis made sure they stayed "on message" when talking to Pombo and smiled like a proud big sister when 9-year-old Stephen talked candidly and confidently about living with epilepsy.

The Day Ends, But Not the Fight

The group had seemingly made an impression on Pombo and on all they'd encountered throughout the day. After posing for photographs, their day on the Hill concluded.

Her loved ones struggles with epilepsy have not concluded, however. Her brother hasn't had a seizure in about three and a half years, and her boyfriend is doing well at school and work despite a lack of seizure control, but success today is no guarantee of success tomorrow.

"I know firsthand how hard it can be for families living with epilepsy," she said, "and I feel privileged to have the opportunity to speak out on their behalf and do what I can to help."