Each of us has an inner voice. Mine spoke up very loudly over three years ago and urged me to listen to my body’s signals that something was awry. Something very awry. My inner voice urged me to ask my doctors why I was having frequent migraines. Why I heard swishing in my ears that sounded like waves crashing on the beach. Why I couldn’t become pregnant. My inner voice finally convinced doctors to order an MRI.
The MRI results delivered the most devastating news of my life—I had a meningioma brain tumor the size of a baseball pressed up against my right optic nerve, carotid artery and sinus cavity. My neurosurgeon was stunned I’d even walked into his office or hadn’t already slipped into a coma. I was only 32 at the time.
Eight days later, I underwent a 7-hour surgery to successfully remove the tumor that had invaded my brain and my life. Even with my old roommate on its own now, doctors told me my best and only chance of ever becoming pregnant would be through in-vitro fertilization. Nine months after surgery I became pregnant au naturel. I love it when doctors are wrong! My healthy miracle daughter, Hannah Elizabeth, arrived on her Grandmother Bricker’s birthday on September 6, 2001.
It wasn’t until after my surgery that I began meeting others with brain tumors. Too many in fact. It was comforting to strike up friendships with people who’d walked in my shoes. We understood one another because of our shared deficits or similar side affects from anti-seizure medication. And we could poke fun at each other too—"I have a brain tumor, what’s your excuse?!"
I often wished I’d met these survivors before my surgery. If only I’d known what to expect. What my husband, family and neighbors—my caregiver network, could have anticipated and what they could have done differently. No one knows how to adequately prepare for brain surgery or the outcome, but if there was a way to soften the shock and unite with others, I wanted to discover it.
I dreamed of creating a forum where I could share my story and tell others that a brain tumor doesn’t have to be a death sentence. I wanted an alternative to numbers, percentages and grim statistics—there were enough of those discouraging places out there. I’d been given a second chance and a new lease on life. I wanted to encourage others and share my message that you have to trust your body’s signals, your instincts and your inner voice.
I wanted this to be a place that offered support while providing encouragement and inspiration at the same time. If I could help just one person.
I was given that chance last fall. It was just before bed time when my neighbor, Joe, knocked on my door. Joe and his family had played an important role during my own recovery with daily prayers, preparing meals and running errands for me. I was taken aback by the pained look of concern in his eyes, but it was far greater than I expected.
"Liz, tell me everything you know about a meningioma. I have one." Like me, Joe had a baseball-sized meningioma, but it was located in an even more delicate area—between his eyes. To know that I could encourage and guide Joe and his family for his upcoming surgeries and remarkable recovery was an incredibly rewarding experience. If I could impact a neighbor just a few steps away, couldn’t I reach others and form a support system?
Earlier this year, I finally gave birth to my brain child—Meningioma Mommas Inc., a non-profit online support group, which offers hope, friendship and laughter to those newly diagnosed as well as to long term survivors during their journey.
Why the name? When I was first diagnosed, I had difficultly pronouncing meningioma, let alone spelling it. And even though my doctors were skeptical I’d ever become pregnant, I did. My meningioma didn’t stop me from becoming a mother. And it hasn’t stopped me from continuing my roles of wife, daughter, sister, friend… For me, being diagnosed with a brain tumor has become an enriching experience.
Within just a few months, we’ve built a community of over 300 "mommas" from all over the country and are as far reaching as Australia, Brazil, Canada, Israel, Japan, and Lithuania. I’m sorry it had to be a brain tumor that connected us, but I’m happy that we can walk this journey together, which can be just as empowering as it is frightening.
We each have an inner voice. Take the time to slow down, sit quietly and tune in. When was the last time you tuned into your inner voice and allowed it to speak up?
Liz Holzemer is the founder of Meningioma Mommas—www.meningiomamommas.org, which offers support and complementary care services, which include housecleaning, errand running and meal delivery in the metro Denver area. Her last MRI was clean. She lives in Highlands Ranch with her husband, Mark and daughter, Hannah.
--Commentary by Elizabeth Holzemer