Though Liz continues to battle fatigue, “déjà vu” seizures, and partial facial paralysis, she remains determined to help others with meningiomas and raise awareness through her nonprofit organization, Meningioma Mommas. Her self-penned book titled Curveball: When Life Throws You a Brain Tumor shares what she has learned through her personal journey and is scheduled for publication in the spring of 2007.
“It is so easy to be intimidated by someone in a white coat,” said Liz, clearly speaking from experience. “I try to be an advocate for women; women don’t always put themselves first.” She encourages women to always take a list of questions when visiting their doctors and to always, ALWAYS, listen to their inner voice. “We need to take care of ourselves – and not feel guilty about it.”
Three or four new members join Meningioma Mommas every day, including an increasing number of men. Liz hopes to help both patients and caregivers find the needed information and support they seek, and she is particularly proud of the way recovering patients are helping others that are newly diagnosed and anticipating surgery. She is quick to note, however, that surgery is much more the beginning of the healing process – not the end.
“It’s not over when the tumor is removed,” she explains. “It’s also what follows. When you need an ear to listen, a shoulder to cry on.”
In addition to its efforts in awareness and support, Meningioma Mommas is currently funding a study to examine the link between hormones and meningioma tumors. Reportedly 65% of those diagnosed with these tumors are women, with most cases appearing in menopausal women. According to Liz, there are a significantly high number of women with brain tumors who have previously confronted other “female-related” diseases such as breast cancer, uterine fibroids, and thyroid issues. Liz herself had a tumor removed from her breast in 1997 and was later diagnosed with Hashimoto’s disease. (Hashimoto’s disease impacts the thyroid gland and its ability to successfully produce hormones.)
As for what lies ahead, Liz can’t help but remain positive. “I should have gone blind,” she utters almost offhandedly as she helps her son Hunter get dressed. “I should have been paralyzed. I should have died. I’ve had two brain surgeries. Now, I have two wonderful children and my work as both a writer and an advocate for meningioma survivors.”
