Who is Anita Emerson? Sadly, it doesn’t really matter. You don’t know her and now she’s gone. Frankly, I didn’t know her either. I met her for about one minute last fall. Notwithstanding the title, this story isn’t really about her either, though I certainly do pray for her to have a restful repose with our Lord in the next life. It’s a story about compassion. About what’s best in America. About how we can and should help each other as a community. And, it’s about my wife, Terri, and her incredible and selfless support of a woman she only worked with in a part-time job for a few years. As Terri was reflecting on Anita’s passing this week, she said, “Somebody really needs to write this story. But, it won’t be me.” I barely turned away from the hockey game when she said it, as it sounded like a throwaway line from an exhausted caregiver. But, when I awoke this morning, it was clear to me that the story does need to be written and I tagged myself “it” to write it.
I feel like this paragraph should begin the story of who Anita is, in order to set up her end-of-life journey with Terri. But, I don’t know very much about her. What I do know is not great. She was an uneducated African American single mother of two teenagers, living in a small apartment on the hourly salary she earned at the food bank where she met Terri. Terri worked there because she enjoyed it, not for the money. For Anita, it was her sole source of income. She was a heavy smoker and, according to some accounts, a drug user at some points in her life. Last fall she was diagnosed with late-stage lung cancer, which had already metastasized. Though she immediately started chemo and radiation treatments, the prognosis was grim from the get-go. Right up to the hour she passed, I’m not sure Anita ever fully acknowledged, or perhaps even understood, that prognosis.
Soon after Anita was diagnosed, her journey with Terri began. Anita doesn’t own a car so trips to the doctor meant multiple bus rides. Terri had recently stopped working at the food bank and had some extra time so she offered to drive Anita to some of those early appointments. At first, she dropped Anita at the door and picked her up an hour or so later, much like a taxi service. But, soon, it became clear that Anita was struggling to navigate the challenging world of cancer care and Terri was attending appointments, asking doctors questions, and helping to shape the care path. As Anita’s health deteriorated and her care became more complex, she gave Terri the legal right talk to doctors and get medical records. Anita was soon overwhelmed by the sheer volume of bills, insurance statements, and other arcane paperwork that still haunts our inefficient medical system. She started handing stacks of bills and statements to Terri to take home in the evening to sort through.
Sadly, Anita’s condition did not improve much with treatment, as her disease was diagnosed late and she progressed quickly. She soon was unable to work and had multiple medical appointments each week. In the early days of Anita’s disease, other co-workers from the food bank shared the responsibility for driving Anita to her myriad medical appointments. Soon, however, it was just Terri, on a near daily basis.
If you’ve never had the misfortune of watching someone die from cancer, you may not understand this, but you don’t really die from cancer. You die from the side effects of cancer or the drugs you take. The other thing many people don’t realize is just how painful end-stage cancer is, especially when it has metastasized to the bones. Soon enough, Anita was in terrible chronic pain. She was in and out of the hospital, with a short stint in hospice, then a few weeks at home, before her final brief stay in hospice leading up to her passing. Whether Anita was in the hospital, home, or hospice, Terri visited her every day, sometimes for three or four hours. Anita was often hard on Terri as she was paranoid about the healthcare providers and Terri conspiring against her wishes. Nonetheless, Terri stood by her side til the very end, despite the frustration of not always being fully appreciated and often in unpleasant physical surroundings. And, it’s not as if Terri was looking for ways to kill time. Just before Anita was diagnosed, we signed a contract to renovate the first floor of our house, with Terri as project manager.
Sadly, Anita passed earlier this week. Terri was not at her side when she passed, but was summoned to the hospice house within hours to be with Anita and her family. Terri believes that Anita is now resting more comfortably in a better place today. But, the story is not over. Anita built such trust in Terri that she appointed her personal representative for her estate. It is a meager estate to be sure, but there is some life insurance money and a possible inheritance from an aunt who died last year. At an even more personal level, Anita also appointed Terri the guardian of her children’s assets. Anita’s sister is the legal guardian for the kids, but Anita felt that Terri would be better suited to make sure what little money she had was appropriately managed to the benefit of her two kids. This is a tricky role, but one Terri has embraced. As an aside, the only reason Anita has a will is that Terri found an attorney for her who did all the work pro bono.
So, why did I bother telling this story? Two reasons, I guess. First, I just felt like it needed to be told. I write often about my disdain for higher taxes and government intervention. My friends on the other side of the aisle often ask me how less fortunate people, people like Anita, will get by without government support. The answer is we have to help them. I know not everyone is as lucky as Anita to have a Terri as their guardian angel. But, watching Terri and Anita’s relationship evolve over the course of Anita’s illness and passing demonstrated to me the power of community. I do believe that the more we all become dependent on government support, the less responsibility we feel for each other on a personal level. A hundred years ago, when somebody got sick the community took care of them. Having just watched up close how powerful that can be, it would be nice to see us try to find our way back there, as a community. As a country. The other reason I wrote this is because of how proud I am of Terri. We all brag about our kids. I’ve even written about my pride for my kids in this blog. But, it’s probably too seldom that we tell our spouses how proud we are of them. Terri, I’m so proud of what you did for Anita. You made the end of her life tolerable. She was very lucky to have you.