Katherine E. Standefer was a skiing and hiking instructor when she passed out one night in a parking lot in 2009. She woke up with a diagnosis of a potentially fatal arrhythmia called long QT syndrome (LQTS), which means her heart sometimes stops beating and shakes instead. Doctors gave her an implantable cardioverter defibrillator (ICD) that would save her life if she suffered from irregular heartbeat.
She had used the device for three years before it stopped playing soccer and shocked her heart.
“A muzzle cracked my chest with a disgusting blow, a hot whip rushed through my back. Has someone kicked my spine? And then I knew. And I screamed, ”she writes in Lightning Flowers: My Journey to Uncover the Cost of Saving a Life (2020, Little, Brown Spark, 288 pages, $ 28). As she lay on the floor, she pondered the complicated life of the device in her chest.
“When the defibrillator just saved my life. When a defibrillator is all made of metal. When metal is mined, earth. When children sometimes work in mines, when tunnels collapse, when warlords benefit, when women are raped, when mountains are removed and poisoned.
“If degraded earth has just saved my life: was it worth it?”
Standefer, 36, examines the physical, spiritual, financial, and environmental costs of her defibrillator on a journey that’s partly medical memoir, partly journalistic foray, and partly detective story. Standefer lives in Cañoncito where she teaches writing classes on illness, trauma and sex. She is a faculty member of Ashland University’s Creative Writing Master of Fine Arts program. Lightning Flowers was a finalist for the 2021 Kirkus Prize for non-fiction.
The Santa Fe Public Library will host an online reading and discussion with Standefer on Thursday, November 18 at 6pm. Pasatiempo spoke to her about how her experience has changed her view of the medical system and what her health now means to her.
Hobby: If you passed out in a parking lot, you went from being a very active, healthy person to someone with a life-threatening illness in the blink of an eye. How do you feel about this comparison? What does it mean to live with a diagnosis?
Katherine Standefer: Every diagnosis is a kind of death. Even if we are lucky enough to survive an outbreak of an illness, we cross a threshold into another life and what was before can never be again. I was only 24 and had worked as a ski instructor, hiking guide and climbing instructor. I was particularly lucky; I regained my efficiency within a few years. But I have never lost the awareness that health is a privilege that can disappear at any time.
[My] The diagnosis also tied me to the American healthcare system in ways that I hadn’t previously tied to. When we experience the privilege of health, it’s easy to believe that we don’t need health care. It’s easy to miss how the system isn’t working. My diagnosis – and then the implantation of my heart defibrillator in particular – has robbed me of the right to ignore political discussions. Long QT syndrome is a diagnosis that most often kills people who don’t know they have it, so overall I am grateful for the diagnosis. But it absolutely marked a turning point in what my body would go through and who I would become.
“Even though it applies to all of us that we can die at any time, I live more consciously with this truth and am still learning to make this out of service.”
Happen: You had your defibrillator for three years when it failed and shocked you – and then you had a moment of clarity weighing the value of your life against the lives of others in the supply chain. How did you get your internal debate on the side?
KS: I asked the question about the appreciation of the invisible others, the communities and ecosystems. My scribbler wanted to know who and what was on the other side of this long supply chain, and I had a feeling that if I could bring my body, which contains the metal, back to its place of origin, to bring myself in to find the answer. But there is never an answer to situations that weigh one life against another. Ultimately, it was about telling a story that could bring to life the fact that we actually privilege some lives over others all along. The way we respond to the death threat here in the midst of a medical crisis is shaping the planet and transforming communities.
It took me about a year and a half to travel overseas to see a mine worst and best case scenarios for mineral extraction. Our decisions felt like small boats being hopelessly tossed around in big waves.
Happen: One of the most interesting observations you make in your book is that there is no one in healthcare to care about the patient’s mental health. Surgery on your body and the creation of space for a medical device inside you is not recognized as potentially traumatic or life changing. How did you heal this aspect of your experience?
KS: After years of treating my illness experience without a psychiatrist, I was lucky enough to find an excellent trauma therapist in the fall of 2016, right after the failed operations described in the second half of the book. While I had had strong healing experiences with body therapists, my therapist introduced me to a whole host of other tools in order to regulate my body and most importantly not to deceive myself by dealing with the doctors’ views of me as difficult, inconsistent and hysterical .
Even though it applies to all of us that we can die at any time, I am more consciously living with this truth and am still learning to get this out of service. If my work reaches those who also feel abandoned by our medical system, it will be a small consolation. However, if we could find a way for the medical systems to really help people with the psychospiritual effects of medical treatments, that would be much better.
Happen: Has your story linked you to others’ experiences with catastrophic or chronic illness? What kind of feedback have you received from readers with health problems?
KS: The response was overwhelming and an honor. People who were young and sick, people who did not feel heard by the medical system, people whose relationships were broken under the strain of illness. Last winter, I received emails and DMs every day for months from people who found solace in Lightning Flowers. In particular, I was surprised how many of us had long QT syndrome and ICDs. It was a real tour of the best and worst case scenarios for my future. Most of the time, I was just grateful that the book meant so much to the people for whom it was intended. I had been alone, without a compass, without any chorus of voices telling me how to live this new life. I liked that maybe they didn’t have to be so alone on the day someone else’s first life ended.