We always enjoy finding new friends in the Diabetes Community to shine a spotlight on, and today we’re thrilled to welcome D-Mom Audrey Farley from Pennsylvania here to the ‘Mine.
After Audrey’s daughter Grace was diagnosed in March 2015, she jumped right in; you may recognize her name as a former editor of the site Insulin Nation. Now she’s now launching her own new site called Pens & Needles that focuses on “the intersection of health and society,” and is writing a fictional book on the first PWDs to use insulin that she hopes to publish in the next year. Despite her relatively short term in this diabetes universe, Audrey also has some insightful thoughts to share about our DOC that are worth taking note of.
As a D-Parent who writes regularly about diabetes, I am often asked by family members and close friends, “Why you always write about diabetes, rather than any of your own health issues?” The answer is simple: I don’t belong to any of those conditions the way that I belong to diabetes.
No matter one’s social or financial circumstances, or one’s physical or psychological resources, diabetes imposes a very precarious existence. Like many others, I found the DOC (Diabetes Online Community) when trying to come to terms with that reality.
My daughter Grace was diagnosed at 5 years old, just when my spouse and I were beginning to feel like we had life figured out. I was in the final stages of a doctoral program studying literature, and he was working at a big law firm in D.C. Both of our children (including our younger son) were finally toilet-trained and somewhat independent. We thought we’d finally hit a comfortable groove and pace.
When T1D entered the picture, everything changed. We had to adjust to a very restrictive and finely calibrated lifestyle—and, still, the threat of death always lurked around the corner! Other health problems quickly presented. I developed chronic migraines and endured an 18-month long headache that no neurologist could manage. During this same time, my spouse had a sudden stroke at age 30. He came home from work one night and collapsed. For several months, he couldn’t walk or talk without tripping on his feet or his tongue.
Of course, these events did a number on our finances, not to mention our mental health. And for a long time, the hole that we were in just grew bigger and deeper. We eventually had to return home to the quieter, more affordable small town in Pennsylvania where we were raised.
Around that time, I decided to blog about diabetes, which I had long perceived to be the catalyst for this chain of events. I was mad at diabetes both for imperiling my daughter round-the-clock and for upending our lives. So, I began to explore these feelings in short essays that I submitted to Insulin Nation. I was thrilled when then-Editor Craig Idlebrook put my name in the hat to replace him when he took a job at MyGlu.
As Editor of Insulin Nation, I had the opportunity to connect with people who understood the tolls of diabetes that I was experiencing. I also had a chance to hear others’ stories, which helped me to see other effects of diabetes that I did not know existed. This was especially important because, no matter how hard you’ve got it, you can’t navel-gaze forever; you eventually have to look up and look around.
But I would be lying if I said I didn’t also discern some ugly currents in this community. For all its richness, the DOC can still feel like a very paternalist, insular, and, in some ways, apolitical space. And because of these (and other) forms of symbolic violence, some of the most powerful voices within this community are often snuffed out.
Those voices don’t belong to any single pocket of the DOC, and they’re too numerous to name here. But they are the voices of individuals who are taking personal and intellectual risks, rather than tiptoeing around the issues—whatever they may be. They are the ones posing the difficult questions and exposing the many prejudices that undergird this community. They are the ones making connections between what’s happening in the DOC and what’s happening in our nation.
Rather than being acknowledged for undermining the status quo, these individuals are often denigrated as “toxic.” This charge always surprises me—aren’t they the ones who are trying to open the windows and air this place out?
These impressions informed my recent decision to co-found a new platform that is decidedly more political in nature. Pens & Needles launched in May, and it’s meant to suggest the combination of social commentary and health/medical news. Pens & Needles does not focus exclusively on diabetes; rather, it purports to create more dialogue between all chronic illness and disability communities by highlighting the social/cultural climates in which health realities form.
My interest in cultural attitudes toward illness (and diabetes, specifically) has also inspired a fictional manuscript about several of insulin’s first patients.
The main character is insulin’s darling, Elizabeth Hughes (Gossett), daughter of the U.S. statesman Charles Evans Hughes, who was among the first to receive Banting’s serum in 1922. In contrast to the existing accounts of her life, my narrative places Elizabeth within the context of the early twentieth-century literary culture in which she was so immersed.
Elizabeth adored classics like Frances Hodgson Burnett’s The Secret Garden and the Victorian children’s periodical, St. Nicholas magazine. In fact, she mentions the latter in nearly every other letter to her mother from Toronto, while under Banting’s care. These texts introduced American youth to Christian Science concepts such as “mind over matter” and the now cringe-worthy, “the only disability is a bad attitude.” Elizabeth was very influenced by these cultural ideals, so it is no surprise that she fully adopted the fledgling diabetic ethos of discipline and self-reliance — although this ethos certainly guides most individuals who live with the condition, it has, over the years, been applied in ways that demean certain individuals—for instance, by associating diabetes complications with moral failure, rather than considering structural barriers to health.
So, it’s by teasing out literary artifacts like this that I hope to offer a fuller picture of that historical moment, as well as of the transmission of attitudes about diabetes from the discovery of insulin to the present. The narrative also brings to life lesser-known figures, such as Elizabeth’s hired nurse.
Thanks for sharing your POV, Audrey. We look forward to following your work, both in the DOC and in your new book coming soon.