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Making a Contribution

I’ve had the good fortune to see many of my “old” neuroscientist friends over the past year through book tour and speaking event travels or through the research I’m doing for my next book. I love listening to them talk passionately about their research, and I especially love that I can still understand it all, as I now spend my time writing novels rather than scientific research grants or papers.

Alzheimer’s, anxiety, bipolar, Huntington’s, autism, schizophrenia, Parkinson’s. Cytokines, glutamate receptor upregulation, gene expression, caudate nucleus, amygdala, CAG expansion, GABA.

These brilliant scientists are making exciting and significant contributions to the body of knowledge that will someday lead to medical treatments and cures. While I still love hanging out with scientists and learning about their latest research results and next set of hypotheses, and I always leave feeling awed and inspired, I also invariably leave feeling a bit stirred up.

I used to do what they do! I have a Ph.D. in neuroscience from Harvard. I used to do brain research at prestigious places such as Mass General, McLean Hospital, and the NIH. I still could, but I’ve chosen to dedicate my career to writing novels instead. At times, this feels like a really strange choice. My former colleagues are making critical contributions to science. What am I doing?

I write about people living with neurological diseases or conditions who are ignored, feared, and misunderstood. I write novels. Not scientific research papers, not clinical review papers, not even non-fiction. Why on earth do I do this? What is the value in a neuroscientist writing fiction? What is my contribution? Is it to science or literature or something else entirely?

I’ve spent considerable time pondering these questions. Here’s what I’ve come up with.

Fiction is accessible. Unless directly affected, most people aren’t going to read a scientific research article about Alzheimer’s, brain injury, or autism. Most people probably aren’t going to read a non-fiction book about these topics either. Those texts tend to be too dry, too clinical, too technical, too impersonal, too intellectual. They’re often filled with facts and statistics.

Every 68 seconds, someone in the US is diagnosed with Alzheimer’s. 1 in 88 children in the US is on the autism spectrum.

The science is necessary (and fascinating to neuro-geeks like me), and the facts and statistics are staggering, but numbers aren’t what we’re all looking for. Five and half million Americans have Alzheimer’s Disease. They and all the people who love them are all in desperate need of learning more about this disease, but they want to understand it in a way that’s accessible. They want to understand it with their hearts, not just their heads.

What does it feel like to have Alzheimer’s, a traumatic brain injury, autism, Huntington’s? Most of us don’t know, and reading the clinical literature is either too daunting or too scary or both.

Fiction is a powerful way in. Most people aren’t going to read the article about autism in the April issue of the Journal of Neuroscience. But they might read a novel about a family living with autism. Fiction gives us access to what might otherwise be too overwhelming to consider. Fiction can give us the humanity behind the science and the statistics.

If you read my novels, you will learn some real science and clinical information (yes, I sneak it in). But beyond intellectual knowledge, what I think and hope most readers take away from my books is a compassionate awareness.

Compassionate awareness. This is my contribution. And I believe it’s an important contribution because it is this kind of awareness that can help break down the stigma and alienation imposed on families affected by these diseases and conditions. It is compassionate awareness that says to the world, “I see you. You exist. You matter. And I care.”

While I’m proud of this contribution, I’d like to do more, and I’d like to ask for your help.

This month is Autism Awareness Month. My third novel, Love Anthony, is about autism. If you’ve read Love Anthony, and it’s made you more compassionately aware of autism as you walk through the world, if you finished it and felt educated, entertained, inspired, if you feel like you now have more sensitivity and empathy for families living with autism, then I’m asking you to get involved.

I’m asking you to take that compassionate awareness you now have and donate something to Autism Speaks or an autism organization of your choice. It doesn’t have to be much to make a big impact. I think it’s fair to guesstimate that at least two million Americans have read Still Alice. Imagine if each reader had donated $1 to the Alzheimer’s Association. That would’ve made a powerful and amazing contribution to Alzheimer’s care and research. Let’s do that for autism. Let’s see how powerful and amazing this readership can be.

Please consider making a contribution to Autism Speaks though this link:

And if you do, please comment here or shout it out on Facebook or Twitter. Let others know, and maybe you’ll inspire them to contribute, too.

Thank you, Lisa Genova

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