My mother - Bea Lerner - was diagnosed with Alzheimer's disease in 1987. At the time, I barely knew what the disease was. What I did know is there was no cure. I thought my mom was invincible, but she was no match for Alzheimer's. I watched helplessly as her mind, her dignity, her soul and finally her body succumbed to this killer. In just a few short years she disappeared into the unforgiving chasm of this deadly disease.
I miss my mother every day. She had incredible style and humor. She was smart and tough as nails. Politics was her passion - she was credited with winning New Jersey for JFK. She saw in life great hope and possibility, and instilled that in me. It is because of her that my husband, George, and I founded UsAgainstAlzheimer's six years ago and dedicated our lives and resources to ending Alzheimer's.
This year at our annual UsAgainstAlzheimer's Out of the Shadows Dinner, we presented the inaugural Bea Lerner Valor Award, given in honor of my mother to a person living with dementia who has shown this same determination, fearlessness, hope and humor in our shared fight against Alzheimer's. We were honored and thrilled to present the award to journalist and author Greg O'Brien.
Those who are living with dementia and their care partners are central to our work fighting for more NIH funding for Alzheimer's, as well as education and access to clinical trials. There aren't many pluses to this disease but getting to know and work with Greg is at the top of that list. A brilliant journalist, Greg was diagnosed seven years ago with early onset Alzheimer's after a head injury "unmasked" the disease. He has bravely chosen to live his life out of the shadows and in the spotlight. He chronicled his journey in his award-winning memoir On Pluto: Inside the Mind of Alzheimer's. To say Greg in a writer is like saying Fred Astaire did a two-step or that Thomas Edison was a tinkerer. Greg is eloquent, insightful, spiritual, humorous and visionary. He is the Poet Laureate of Alzheimer's. Greg has become part of our organization and our family. He is a hero.
Upon receiving the Bea Lerner Valor Award, Greg acknowledged the community gathered before him that "just won't take 'no' for an answer, that will push beyond all expectations to find a cure for Alzheimer's." He vowed to keep fighting while he can, as his mother taught him - like being in the "12th round of a bruising prizefight, only to find there are another 200 rounds to go, and you can't find your corner." But as Greg (and the Irish) is wont to say, "Never get mad. Get Even!" Not for himself, but for his children and grandchildren, and a generation "who will face this demon prowling like Abaddon."
In her battle against Alzheimer's, Greg said that my mother had the "guts of an archangel." That while she succumbed to the disease, "her heart, her soul, have survived, and I believe her spirit is with us here tonight. Welcome Bea!" Those words are both wrenching and deeply inspiring for me to type. My mother has come to me in my dreams for 24 years. But in that moment she was there in the room with me, with Greg, urging us on to speak from the heart and keep up the good fight.