ANNAPOLIS – Pearl Lewis cannot sit or stand for long periods of time. Sometimes vertigo makes her sway involuntarily and it robs her of the ability to drive far distances or at night.
It makes her feel as though her “freedom has been taken away.”
On this particular day, Lewis silently endures a piercing pain in her midsection. Without flinching, she sits calmly and smiles gracefully.
“Aren’t I a great actress,” she says jokingly.
Yes, she is.
Lewis seems more a strong, polished, energetic woman. But she has endured more than her own pain. She also suffers in silence the loss of her husband, who died last year of emphysema, and the knowledge that two of her six children must cope with serious renal disease.
Yet, Lewis focuses her energies on helping others.
“You have to have a reason to exist. Helping others validates my life. The more I’m involved in other people’s pain, the less pain I feel,” said Lewis, who suffers from Crohn’s disease, an inflammatory bowl disorder.
Lewis, 54, is the vice president and co-founder of a grassroots nonprofit organization, called the Maryland Patient Advocacy Group Inc. She works alongside her close friend Charlie Gerhardt, the group’s president, to use their medical experiences and knowledge of the health care system to help Maryland patients navigate the complicated health care world.
The purpose of the organization, which opened just five months ago, is three-fold: educating Marylanders on the state’s constantly changing health care system, advocating on behalf of patients whose managed care companies refuse to pay for services, and lobbying lawmakers to improve the state’s health care system.
The group was also founded by Sen. Paula Hollinger, D-Baltimore County, one of the General Assembly’s most prominent patient advocates, according to Lewis.
Lewis was a natural choice for the job, Hollinger said, because she’s “a true patient advocate.”
“There’s nothing more convincing than personal experience,” she said. “For some reason, God must have put a lot of fight in this lady because there are times when she can’t get out of bed, but she’s on the telephone and advocating on behalf of health care consumers.”
Lewis’ life hasn’t always been plagued by illness. The New York native who grew up in Alabama, led a virtually healthy life during childhood. It wasn’t until she was in the sixth grade that she experienced her first signs of Crohn’s disease: sharp pains in her knees and joints.
By age 17, Lewis had seen numerous doctors and been to several hospitals until finally, at 21, she was referred to a physician at Johns Hopkins Hospital who diagnosed her in 1966.
That didn’t stop her from attending nursing school at Sanford University in Birmingham for two years before moving to Baltimore County in 1978 with her husband, Donald, and their six children – four from his previous marriage, one Lewis’ and the last a product of both.
In 1979, Lewis again experienced complications, but she was misdiagnosed. The lack of immediate treatment forced her to have an ileostomy, a procedure that brings the end portion of the small intestine to the abdominal surface for elimination of bodily waste. The surgery also left her without a rectum and forced her into a ritual of 53 surgeries.
Throughout her illness, Lewis has fought for services, medications and supplies for herself and for two of her six children, Rachel and Greg. The siblings developed a disease their natural mother died of, hemolytic uremic syndrome, which can cause acute renal failure.
Rachel, 32, has since regained 20 percent of her kidney function and is doing well with medication and treatment; Greg, 36, has undergone a kidney transplant.
Looking back, Lewis recognizes that her illness took a toll on the children, but it taught them lessons, she added.
During her worst moments, Lewis was confined to bed and delegated chores to each child by tacking up a list on the refrigerator. When money got tight, they got jobs.
“I’m sure they would have liked to enjoy their youth, but they learned to be independent and stand on their own two feet,” Lewis said.
Today, all of Lewis’ children live on their own and in other states. When they call, she tells them she’s fine so they won’t worry.
“My children see me as very, very strong and independent. They aren’t around to see the times when I’m in bed sick or in the hospital and having surgery. Maybe I don’t want them to see that,” she said, tears welling up in her eyes.
Her facade crumbled last April when her husband of 30 years was dying of emphysema. For days, Lewis sat at his bedside, while recovering from her own surgery in January. One night, she became so dizzy and exhausted that she could not stand. She went home. Several hours later, her husband died.
Two of her children were furious.
“They came home screaming at me that I wasn’t there when Daddy died,” she said, raising her voice. “They didn’t understand or have a clue what the surgery had done to me or the pain I was in.”
Now Lewis is taking those experiences and sharing them with others who need her knowledge.
“People don’t know how to use the system. They don’t know what their rights are and don’t know how to use managed care,” she said pounding her fist on the table. “These people are sick, they can’t jump through all these hoops. We’ll be able to get rid of these hoops, or at least smooth the way for patients.”
Lewis looks forward to the challenge ahead of her, fighting for patients’ rights and battling the system. She never looks backward.
“Do I blame God for what has happened to me? No, things happen. You can’t wallow in your pain and self-pity,” she said.
“If I could go back and change things, I wouldn’t. If these things didn’t happen to me, I wouldn’t have had the opportunity to help people and make a difference.”
For now, The Maryland Patient Advocacy Group, Inc. is located in the far right corner of Lewis’ basement while Lewis and Gerhardt raise funds for the organization.
The small office is sparsely furnished. Lewis turned to several thick binders on her desk filled with letters from patients she’s helped, doctors, lawmakers and health care industry representatives.
While leafing through one of the binders, she paused at one card and traced her finger over it, smiling. It read in part: “Thank you, you gave Joel back to us.”
Joel Lewis, now 66 and unrelated to Pearl Lewis, was hospitalized with pneumonia last year, according to his wife, Barbara, of Baltimore County. Within four days, her husband also was diagnosed with lung cancer and then suffered a heart attack. He was shuttled to five different hospitals in several weeks.
The ordeal was a “horrible situation,” Barbara Lewis recalled. “The entire time, Pearl did not leave my side. She is still my guide,” she said.
Barbara said Lewis has been a source of strength and education for her, particularly in providing information about the benefits of putting her husband on a ventilator.
“Pearl is a remarkable woman – compassionate and loving – and one heck of an individual” she said.
Lewis said she establishes close, personal relationships with most of the people she helps.
The close bond with patients helps get Lewis through her own tough times, she added.
“Once I have a patient,” Lewis said, “they become a part of me, a part of my family.”