Twenty years ago, we lost Trish’s vibrant, vivacious mother, Bea Lerner, to the killer that is Alzheimer’s disease. Since then, we have made stopping Alzheimer’s the cause of our lives, to ensure that, hopefully, our children and grandchildren can live in a world eradicated of this disease. Our personal dedication to the Jewish faith has been integral to this fight, and continues to give us hope and renew our resolve each day.
Here’s our story:
From the command to “never forget” the Holocaust, to “remember the Sabbath day and keep it holy,” to the cultural imperative of Jewish history to remember our identity and where we have come from, memory is a central unifying imperative of Jewish life, keeping alive the past even as we seek to shape the future. Our holidays are built on those memories, and thus nothing can destroy a Jew more thoroughly than the loss of memory that Alzheimer’s brings in its wake. I remember the shock my family endured when our mother could no longer remember who we were or who she was.
The unforgiving chasm into which my mother vanished may have signaled the end of her physical life, but I was determined that her life would go on in our memory and in making a mark on the world even after her death. Death may end a life, but it does not end a relationship. For me, the memory of my mother – first as an American, and then a Jew – has been in my mind and in my heart long after she left this world.
When I was studying to convert to Judaism, I was struck by the extent to which every nation in which Jews lived seemed, at some point in their history, to turn on the Jews – either expelling them as England did in 1292 or as Spain did in 1492. Why should every nation turn on its Jews and why did a people on whom nations so consistently turn live on? What was so special about Jews? I found my answer in Tikkun Olam – the command to ‘heal the world.’ The world is replete with injustice, with unfairness, with intolerance, with hatred. The Jews had a special obligation to bring healing to a world in disrepair. This, I thought, was the meaning of being Jewish – to see wrongs and seek to make them right; to see a world broken and seek to repair it; to see disease and seek to heal it. So, as Trish and I saw her mother suffer and die from a terrible disease we are now seeking a way to heal those who suffer now and are fated to in the future.
One of my first memories from my childhood is standing on a corner with my mother and brother, Michael, collection box in hand, soliciting money for the state of Israel. Tzedakah, it is called – or literally righteousness in Hebrew. I learned that we had to care for people in need.
Tzedakah was an innate part of who we were and are. So it seemed only natural after I watched this hideous disease rob my mother of her mind, her soul, her dignity and ultimately her life, to declare war on Alzheimer’s.
When I was growing up in the Grace and St. Stephens Episcopal Church in Colorado Springs, the collection plate was passed from pew to pew and across the aisle, filled with offerings for the less fortunate in our community. My mother – who had at 18 years of age spent 3 years sampling all Western and Eastern religions for the right spiritual fit– served as a volunteer in the church, as the unpaid manager of the local symphony orchestra and as the chief fundraiser for every good cause in town. She believed in community, service, and in helping those less fortunate. As a Republican, she also believed it was her civic responsibility and religious duty –not the government’s – to make the community stronger and fairer.
And so, when I told her I was considering conversion to Judaism, she argued that I should sample many religions – not just that of my future wife – before deciding upon my own spiritual home. When I told her that that wasn’t going to happen (and after her joint efforts with Trish’s mother to scuttle the marriage didn’t work) she asked me for the most recent teaching about Judaism. She found the theme of charity and justice in Judaism familiar and appealing, as did I.
This vicious enemy currently has a hammerlock hold on 5.4 million victims, two-thirds of whom are women. The disease puts a strain on 15 million and counting caregivers, the vast majority of whom are women. It already costs our country $200 billion a year and will bankrupt our country as incidence explodes.
My mom always said one could not leave this world without making it a better place. We started USAgainstAlzheimer’s because we want to leave a world free of Alzheimer’s. Some have accepted Alzheimer’s as a sad, unfortunate part of aging. We don’t. We think we can stop Alzheimer’s – but only if there a national will and the unyielding support for researchers to do so. We’re building a community of advocates who are enraged and engaged, and with enough voices speaking out and urging our elected leaders to make stopping Alzheimer’s a priority, we can make a difference.
Our commitment to stopping Alzheimer’s doesn’t stop with funding somebody else’s research. It extends to all of the actions needed for our nation to achieve a goal – for which we pushed aggressively – to prevent and effectively treat this disease within the decade. We will continue to work with the White House, with Congress, with industry, with researchers, with women and minorities at greater risk for the disease, and with scores of Alzheimer’s-serving organizations– all with the goal of unifying and mobilizing our nation to rise up as one to put a stake through the heart of this disease.
We will not forget – we will remember – the injustice of a disease that destroys the very life memories that make us human.