Editor's Note: (Jay Newton-Small is the co-founder of MemoryWell, a digital platform that brings professional journalism skills to the challenge of helping elders tell their life stories. She is a contributor to TIME and the author of "Broad Influence: How Women Are Changing the Way America Works." The views here are solely hers. View more opinion articles on CNN.)
(CNN) Sandra Day O'Connor would likely be the first person to tell you she's not an activist. During her time as the first woman to serve on the Supreme Court starting with her appointment in 1981, she eschewed the idea of being a banner carrier for all women; she left that role for Ruth Bader Ginsburg, who joined her on the court 12 years later.
But if there was ever an issue that O'Connor was an activist about, it was Alzheimer's. Alzheimer's was what forced her from the court in 2006, to spend more time with her husband, John Jay O'Connor, who was diagnosed with the disease in the mid-1980s -- not too long after O'Connor was appointed to the highest court in the land.
For most people, an Alzheimer's or dementia diagnosis is something to hide, something about which to be ashamed. By announcing it openly, O'Connor was helping to destigmatize the disease that afflicts 5.7 million Americans. All too often, people with such diagnoses are written off as gone the moment they tell family and friends. But people can live for years and still contribute to society, still often work in the early stages, and still have meaningful and profound experiences.
Over the years, O'Connor was open about the hardship of seeing the one you love slip away, and slowly forget you. As he regressed, which is a common symptom of Alzheimer's, he forgot his wife and began to have a romance with another woman in his senior community. The family decided to be public with this information, in part to help bring awareness to the disease. "Justice O'Connor is certainly to be commended for ... raising awareness and helping to reduce stigmas," Peter Reed, senior director of programs at the Alzheimer's Association in Chicago, said at the time.
While this phase is utterly normal for someone living with the disease, it is incredibly heartbreaking for a spouse. I found this out firsthand when my father, who lived with Alzheimer's for 15 years before his death in 2016, went through what I dubbed his randy teenage years in his senior community. I instructed the staff to tell the women residents' husbands that treatment for prostate cancer years earlier had left my father impotent. That led to more than one teary phone call from a husband grateful to know that my father wasn't capable of doing more than heavy cuddling.
But the decision to be public with such a private episode was very much in line with O'Connor's quiet activism all her life. Though she never publicly identified as a feminist, when she served as an Arizona state senator from 1969 to 1974, she spent a good amount of her time undoing sexist state laws, and in 1972 she championed the passage of Equal Rights Amendment, though the Arizona legislature did not approve it. "I care very much about women and their progress," she later said. "I didn't go march in the streets, but when I was in the Arizona legislature, one of the things that I did was to examine every single statute in the State of Arizona to pick out the ones that discriminated against women and get them changed."
And Tuesday's announcement is another piece of quiet activism. "While the final chapter of my life with dementia may be trying, nothing has diminished my gratitude and deep appreciation for the countless blessings in my life," O'Connor wrote in her statement withdrawing from public life. She added: "As a young cowgirl from the Arizona desert, I never could have imagined that one day I would become the first woman justice on the US Supreme Court." O'Connor, who hasn't spoken publicly in two years, could have just faded away without a statement, as others have done in similar situations. But she chose again to share publicly a very private thing.
I hope for O'Connor joy in reliving her unfettered youth as an Arizona cowgirl, should her disease regress as her husband's did. After a life of service to justice, to women and to those caring for and living with Alzheimer's, we owe her our thanks and well wishes for the long goodbye.