Jane Monzures on how she’s honoring her mother’s indelible spirit
By JANE MONZURES June 20, 2013 3:06PM
Jane Monzures (right) with her mother Barbara
Updated: June 20, 2013 7:23PM
A long time ago, my mother taught me a secret that her mother once taught her: Put a smile on your face, and no one will ever know you’re scared. I’ve made my TV and radio career by putting a smile on my face, talking about food, fashion, pop culture and lifestyle topics — things that are light, fun and happy. But what my audience doesn’t know is that behind my professional veneer, I’ve been helping my mother battle a devastating neurological disorder for the past five years.
My mother, Barbara Monzures, was a former Air Force major, home health aide, school nurse and lifelong caregiver. She was once active, creative, fun-loving and talented. She was a woman ahead of her time — she had a family late in life, and focused on her career. She always helped others, always knew the right things to say. Today, she is a far cry from that woman I once knew.
In 2008, at the age of 74, my mother was diagnosed with Cortiobasal Degeneration, a rare degenerative brain disease that affects only about 5,000 people in the U.S. This progressive neurological disorder has taken my tenacious, energetic role model and imprisoned her in her own body. She is cognitively very aware, but she has lost most function and mobility, as well as her independence.
My mom has kept her dignity while living with this awful disease, but that doesn’t mean she isn’t suffering. There are no drugs specific to the disease, and there is no cure. My mom will eventually lose all mobility and motor-skill function and live in a coffin-like state inside her body. For people suffering from this disease, death is typically caused by something outside of the condition itself, which means the suffering will continue.
She is declining every day, and I can’t do anything to help. I can make her laugh, I can keep her company, I can play her favorite music, I can bring her chocolate shakes — but I cannot change what is happening to her.
Several years ago, I realized that many of the things that I do in life and at work I’ve learned from her: sewing, cooking, public speaking, using my voice, possessing contagious, positive energy and being kind — this apple didn’t fall far from the tree. So I decided I could use these talents, which she bestowed upon me, to help her and others like her.
In 2011, I started my own foundation, Live. Love. Life (L3). The mission of L3 — which is holding its annual fashionable fundraising fete Nov. 2, 2013, at the Museum of Broadcast Communications — is to generate awareness and support for degenerative brain disease research at Northwestern’s Feinberg School of Medicine. We do this through community engagement with consumers, family, friends and others who care about giving back.
And I am doing just that for any cause that echoes this mission, including serving as the emcee for The Auxiliary of NorthShore at Evanston & Glenbrook Hospitals’ Gala, “Diamond & Dice,” Saturday at Union Station. All proceeds from the Gala support The DodoNA Project: DNA Prediction to Improve Neurological Health. This leading-edge research at NorthShore aims to predict, prevent and ultimately halt neurological disorders, including Parkinson’s, Alzheimer’s, ALS, brain tumors and MS.
This research is not going to help my mom. At this point, nothing can. But I feel equally dedicated to this cause because it could help my brother, my friends, my daughter, even you and me.
Over the next few years, I know I will have to continue to stand by and feel helpless as my mom suffers. It’s hard to prepare for something like that, but I’ll do everything I can to help her. And no matter what, I will always have that smile on my face.
For more info about The Auxiliary of NorthShore at Evanston & Glenbrook Hospitals’ Gala, please visit Foundation.northshore.org/gala. For more information about L3, please visit Live-love-life.org.