By KASHAELA DANE BARBER
More than 20 years ago, Sylvia L. Ramsey was diagnosed with bladder cancer.
After noting her coworkers’ oblivion and the lack of support and acknowledgement of this specific cancer, Ramsey went on a hunt for support and comfort elsewhere.
Online, Ramsey found herself in ‘Glenna’s Garden’, a chat room interacting with others battling cancer. It was there she met a man with stage IV cancer who inspired her to start an online support group, specifically for bladder cancer support.
“I knew people with access to the Internet were in search of support and others with the same stories,” said Ramsey. “I had hopes that someday there would be something like the breast cancer awareness group for bladder cancer or a national organization. It didn’t take long. ”
Let the Journey Begin
Born the first and only child to middle-aged parents, Ramsey grew up with a love of teaching, writing and expressing herself through poetry. By the age of 12 she was being published monthly and receiving money for her stories. While teaching high school she entered a contest and had her first poem published in Amherst Society Journal, the same journal her future granddaughter would publish her first poem.
Ramsey returned to school to pursue a degree in communication at Southeast Missouri State University in her mid-20s. She later created and became the first director of a theatre program at a high school where she taught.
She was one of the first women to host a radio show in the 1960s, a caregiver to her former abusive husband who was diagnosed with COPD (chronic obstructive pulmonary disease) and one of the people who helped launch the American Bladder Cancer Society.
On the same day her then husband was diagnosed with prostate cancer, Ramsey received terrifying news. She was told that the urinary tract infection she had been receiving more than a year’s worth of treatment wasn’t a UTI. It was, in fact, bladder cancer.
At the time of her diagnosis, Ramsey was the sole provider and caregiver to her husband who also suffered from COPD, along with other health complications.
Returning to work, the newly diagnosed woman received little support. Ramsey wrote in her book “Traveling A Rocky Road with Love Faith and Guts” that her coworkers began avoiding her. She explained her family and friends’ avoidance as acting like her diagnosis was a shameful dark secret. Her secretary was the only one who was there for her ‘all the way’.
With doctors’ lack of knowledge and people’s lack of support, Ramsey started to surf the Internet for bladder cancer information. She knew that there were people out there going through the same situation, and she wanted to comfort them and be comforted.
After little luck with finding such people and statistics for women with bladder cancer, she decided it was time to create an online group for women. However, there would be a delay.
The company Ramsey worked for at the time downsized. She was jobless, taking care of her sick husband and herself, stuck with plenty of doctor’s bills, medicine costs, and no insurance.
While she could have given up, Ramsey began more research on her disease and her husband’s COPD. She continued to write poetry, and even compromised her health needs. Ramsey even launched a mid-50s job search.
Back On Track
Just after starting her new job at a college in Augusta, Ga., she began working on a website for bladder cancer and involving herself in an online support group based in Europe. People started finding this support group and reaching out to Ramsey for understanding and questions of concern. It was then she realized she had something going and wanted to do all she could to raise awareness.
The professor and survivor would recite her poems she wrote about bladder cancer anywhere she could. Once approached to publish her poems, she didn’t hesitate. Her first published book, “Pulse Points of a Woman’s World” was published in 2004 and a portion of the money made from sales was used to help bring awareness to bladder cancer.
During this time, Ramsey met Cynthia Kinsella, another woman diagnosed with bladder cancer. Together, the two women shared stories, similarities, and ideas of forming a national organization to help those living with bladder cancer and awareness. Working together the American Bladder Cancer Society became a reality in 2008.
Though she is now retired from teaching, Ramsey continues to research bladder cancer.
“I love to research. I think everyone needs to do more research, patients and doctors. Patients need to research to understand what is going on with their bodies and doctors need to in order to help patients understand. Lack of research and knowledge is why I believe I was misdiagnosed.”
Ramsey also continues to write and her work still has an impact today.
“She’s always so positive and a great professor,” said Marcea Margatin, a former student of Ramsey. “I would have never guessed she had bladder cancer by looking at her nor known about it had I not met her.”
When asked if she had any words for those who might read this or have bladder cancer, Ramsey answered with a smile.
“To anyone facing bladder cancer, I would say you have to stay positive,” she said. “I agree with Reba McEntire. You need three things to succeed: a wishbone, backbone and a funny bone.”