Photo via Payomet.org

Most people don’t understand how memory really works, says neuroscientist Lisa Genova. “We use this word ‘forget’ a lot,” she says — we “forget” our keys, “forget” our phone, and “forget” people’s names. Genova says that in reality, when you can’t remember something like that, it’s probably because you never formed the memory in the first place. How’s that for some harsh truth?
Genova is of course a scientist, but you probably know her for her 2007 bestselling book, Still Alice (or its 2014 film adaptation starring Julian Moore) which follows a cognitive psychology professor at Harvard University who develops early-onset Alzheimer’s and must wrestle with the implications of this tragic diagnosis. The novel, along with the four others Genova has released since, is fiction, but Genova has a rigorous research process for each. “I like to say that I’m telling the truth under imagined circumstances,” she says, “And I recognize an enormous responsibility [in that], for folks who live with these diseases, I am representing them.”
The author consults everything from medical journals to memoirs in preparation for writing. Importantly, she also spends a great deal of time speaking with both medical professionals who deal with a disease, and the individuals who themselves experience them. “I get to be a student with every book,” she says, “I get to be a beginner, and I learn so much.”
Some parts of the research process reveal surprising truths about these conditions, says Genova. For one thing,“It’s not depressing to be around folks who have ALS or Alzheimer’s. I mean, the tragedy and the sadness of the crisis is certainly there… but people don’t live the tragedy of their diagnosis 24/7.”
Understanding these subtler aspects of living with a neurological disease is key to Genova’s approach. The author says empathy – which she contrasts sharply with sympathy — is incredibly important to her. “[Sympathy] keeps us at an emotional distance,” she says, “so I can feel bad for you, I can feel embarrassed for you, frustrated for you, heartbroken for you — but there’s a separateness, like you’re different [from] me… Even though there can be a kindness to it, there’s also a complete separation. Empathy is when you feel with someone. That’s when we take that imaginative leap and imagine what it feels like to be you… It collapses that emotional distance between us.”
Of course, Genova’s extensive background in neuroscience (she has a PhD in the subject from Harvard) makes her uniquely qualified to tell these stories. “I knew from a young age I was interested in being a scientist,” she says, “I loved biology, and I was interested in how the body works.” After taking her first neuroscience course in her undergrad, Genova says she became fascinated with figuring out the brain.
“A memory is basically a neural circuit,” she says, “Every time you learn something new, every time you experience something that you perceive and pay attention to… [it] becomes a woven, a woven pattern of stable connections and neural circuits. If I activate any part of that neural circuit tomorrow, next week, 10 years from now, [or] 50 years from now — that whole circuit can be activated and I can retrieve the woven information. And that’s a memory.”
The key here, Genova says, is that you have to be paying attention. That’s why, often when we “forget” things, we didn’t actually lose any memories — we just never made them. She stresses that this is really okay — our brains are simply not meant to take on the massive amount of information we have to process on a daily basis, so it makes sense that certain things will slip our mind. At the same time, practicing paying attention can also help us to be less “forgetful” in our day to day lives.
Sometimes these memory circuits simply become weakened over time. The less they are drawn upon and recalled, the weaker they become — but that doesn’t mean they aren’t there. “For example,” says Genova, “I don’t remember who my fourth grade teacher [was]. I cannot come up with her name… But I would bet you, if you gave me a multiple choice with her name on there, I would recognize it, which tells me that the memory is still in my brain.” She explains that the more we actively remember something, the more robust the circuit becomes.
Demystifying the workings of the brain is critical to helping people struggling with neurological conditions, says Genova, “I think anything going on from the neck up carries a lot of stigma and shame… People feel they can’t talk about it, they can’t admit to it, and they have to hide it. And anytime we’re keeping this kind of a secret, in addition to the burdens of the disease itself, now we have the burden of alienation and isolation…” She says it’s tremendously important for members of the community struggling with cognitive loss to know that they are not alone.
On Cape Cod, which can be isolating enough on its own (particularly in the off-season), and which is populated by an aging community, the stakes of Alzheimer’s research and treatment are clear. Genova comes to Payomet for a performance to benefit the Alzheimer’s Family Support Center in Brewster, a nonprofit organization providing psychosocial educational support to families, professionals and individuals living with Alzheimer’s and other dementia-related diseases. These services include free and confidential care consultations, organized opportunities for social engagement, and support groups. The center also engages in community outreach and education to promote awareness of these types of conditions and offers cognitive health screenings across the Cape. Genova’s performance is “not a traditional lecture,” she says. The talk will focus on the kinds of forgetting that many people experience on a daily basis and attempt to bust some myths and provide helpful tips related to brain health.
Come check out Where Did I Put My Keys? How We Remember and Why We Forget with Lisa Genova on August 27th and 7pm here at Payomet. Don’t let this incredible event slip your mind!
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