Meaningful Consent
Meaningful Consent
“Is it okay if I include this in my book?”
I asked Owen Rivers this question dozens of times during the two-and-a-half years it took me to write my book, “The Memory Thief and the Secrets Behind How We Remember – A Medical Mystery.” Of course, I asked everyone else I spoke with for permission to record the conversation and quote them in my book. However, once I established that understanding, anything they said seemed appropriate to include unless they requested otherwise.
Owen was different. He was a patient whose painful story I wanted to share in intimate detail. And more importantly, he had brain damage. In 2018, Owen, who suffers from a substance use disorder and OCD, overdosed on fentanyl. When he woke up, he had anterograde amnesia; he remembered his past but was incapable of forming new memories of people, places, and events. Doctors at the hospital where he was admitted had no idea why the overdose had damaged his hippocampus, a part of the brain essential for memory. They ran test after test, but after a week, they gave up looking for answers and sent him home with advice to drink a lot of water.
For several months, Owen’s brain injury was so severe that he lived “in near-complete darkness,” as he describes it in an essay he wrote for the epilogue of my book. But gradually, he recovered the ability to think clearly enough to wonder what happened to him, so he began to google “overdose,” “fentanyl,” and “amnesia.” Eventually, he came across an article I’d written about a cluster of patients just like him. He contacted the neurologists involved and agreed to participate in a research project to investigate what is now known as opioid-associated amnestic syndrome. They wanted to understand how fentanyl damages the hippocampus and what science could learn about memory.
The first time I talked to Owen on the phone, he said he wanted to help in any way he could in the hopes of getting the word out to other potential victims. Soon after, I traveled to California and spent two days with him. This was five months after his overdose, and he still couldn’t watch a movie or read a book because he couldn’t follow the plot. He felt uncomfortable with friends because he would forget what they’d told him the day before. Given this severe memory loss, I had to ask myself whether it was possible for him to give meaningful consent to be included in my book.
And yet, the overdose hadn’t affected Owen’s intellect. The first day we met, we played Scrabble, and he beat me even though he had to ask how many letters to put in the tray on every turn. He was and still is, extremely intelligent. He also documents every facet of his life, a habit that was once a debilitating symptom of his OCD and is now essential for his survival. There is no doubt that Owen understood what he was agreeing to.
I visited Owen again nine months later, by which time it was clear that his memory loss was irreversible. After that, we kept in touch virtually. I would write to ask how he was or to clarify something he’d said. Sometimes he would send me an article that might be useful. After I told him I was struggling with a particularly complicated aspect of memory science, he sent me the PDF for a class he’d taken on the neurobiology of memory. Because Owen is organized and attentive to detail, he’d added his own notes throughout the PDF. They gave such insight into both the science and the way he thinks that I asked if I could reproduce some of his notes in my book. As always, he unhesitatingly agreed.
I found Owen so insightful and decent that I increasingly looked forward to our interviews and e-mail exchanges. But ironically, the ease we had with each other made me uneasy. Was there something problematic with that level of comfort? Was that why he continued to share such personal details, details that I knew would make my book more compelling? Although I still always asked if I could record the calls or use information from our e-mail exchanges, I had a sort of free-floating anxiety about the situation.
Before finalizing the manuscript, I called Owen one last time to request his permission to include information he’d shared in e-mails or when we were walking around and I wasn’t recording. I also reviewed the facts I would change to protect his identity. Still, I worried that when he read how I’d laid out his experience in its entirety in my book — with facts that I’d gleaned over years of conversations, he would find it upsetting.
I sent Owen his copy of the book a month before it was released. He read it in stages, taking notes and sending me e-mails along the way. To my enormous relief, he felt I did justice to his story – and that he learned a lot about the science of memory. Owen has been sober for four years, and even though he still can’t make sense of a movie, he has found a way to create a remarkable and fulfilling new life for himself. I learned a great deal about perseverance from Owen and will always be grateful for the trust he placed in me.
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Lauren Aguirre is a science journalist and author whose first book, “The Memory Thief,” was shortlisted for the 2022 PEN/E.O. Wilson Literary Science Writing Award. Aguirre is currently writing a historical fiction set in the early 1900s about a young woman living with a brain disorder. Prior to her work as an author, Aguirre was on the staff of the PBS series NOVA, where she produced documentaries, short-form video series, podcasts, and interactive games. She graduated from MIT with a degree in science writing. Her articles on memory and addiction have appeared in STAT, The Boston Globe Ideas Section, Undark, The Atlantic, and The Scientist.
@lsaguirre
Website https://laurenaguirre.com/
THE MEMORY THIEF
FINALIST FOR THE 2022 PEN/E.O. WILSON LITERARY SCIENCE WRITING AWARD
“Aguirre writes clearly, concisely, and often cinematically. The book succeeds in providing an accessible yet substantive look at memory science and offering glimpses of the often-challenging process of biomedical investigation.”—Science
Sometimes, it’s not the discovery that’s hard – it’s convincing others that you’re right. The Memory Thief chronicles an investigation into a rare and devastating amnesia first identified in a cluster of fentanyl overdose survivors. When a handful of doctors embark on a quest to find out exactly what happened to these marginalized victims, they encounter indifference and skepticism from the medical establishment.
But after many blind alleys and occasional strokes of good luck, they go on to prove that opioids can damage the hippocampus, a tiny brain region responsible for forming new memories. This discovery may have implications for millions of people around the world.
Through the prism of this fascinating story, Aguirre recounts the obstacles researchers so often confront when new ideas bump up against conventional wisdom. She explains the elegant tricks scientists use to tease out the fundamental mechanisms of memory. And finally, she reveals why researchers now believe that a treatment for Alzheimer’s is within reach.
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