Friday, August 29, 2008

To Drive or Not To Drive

Last week, someone innocently asked the DementiaUSA email group a not-so-innocent question. He asked if anyone knew how someone with dementia would go about getting a handicapped parking permit. As a person with dementia who still drives, he wants to use the handicapped spaces as a way of helping him remember where he parked his car.

Man, did he unwittingly stir the pot! The debate this question precipitated went on for days.

Here was one side:

If you can’t remember where you parked, it’s a sign that your symptoms are bad enough that you shouldn’t be driving anymore. You might not remember where you are or where you’re going and get dangerously lost. You might not remember how to operate the car or remember how much time you need to stop or to complete a turn in front of on-coming traffic and cause an accident. You might get hurt or hurt someone else, or worse, kill yourself or someone else. If you have Alzheimer’s and can’t remember where you parked your car, the solution isn’t ‘get a handicapped parking permit.’ It’s time to give up your license.

And here was the other side:

I would sometimes forget where I parked my car well before I had dementia. People without Alzheimer’s who leave a mall and can’t remember where they’d parked don’t hand over their keys. I drive slowly and cautiously and only in familiar places. I’ve never been in an accident. I only drive with my husband/wife, never alone, and he/she acts as my co-pilot.

As I was ‘lurking,’ reading without chiming in, I thought about my own recent experience losing my parked car.

Just the other day, I, a 37-year-old woman without dementia, stepped outside the grocery store, stared into the sea of mostly silver SUVs, and thought, “Now where the heck did I park?” I then spotted my car almost instantly but only because two giant kayaks, one bright orange and one bright blue, were perched high on its roof. Clearly and thankfully, forgetting where you parked isn’t criteria for giving up your driver’s license.

I was also reminded of an enlightening conversation I had almost exactly a year ago with my friend James who has young onset Alzheimer’s. Here is his perspective.

“I want to let my capabilities drive what I can do. I don’t want to hand over what I still have to this disease before it insists on taking it.

I didn’t want to give up my keys. Driving to me is one of the core things that allows you to maintain some engagement and freedom in the world, and when that’s gone, you’re dependent on the rest of the world to get you around.”

But driving with Alzheimer’s? Surely this combination is a tragedy waiting to happen, I’d thought. Alzheimer’s compromises the ability to multi-task. It causes spatial disorientation, impairs depth perception, and narrows field of vision. It’s easy to imagine the many things that could go wrong. And they do.

We see it in the news all too often. I remembered hearing about a woman from Wyoming who, at age fifty-eight and diagnosed with Alzheimer’s, got confused on her way to the airport to pick up her daughter and ended up over 650 miles from home. Police found her body about a mile from her car four days later.

The risks are real and potentially life threatening, for the driver and for others. At some point, James shouldn’t be behind the wheel. But how can James, with Alzheimer’s obscuring his ability to self-evaluate, recognize that point?

James didn’t guess, argue, or insist. He took an intensive driving exam. They tested his vision and his reaction time. They put him in video simulators. They even tested his memory. Then they put him behind the wheel. He drove on highways, side streets, through construction routes with detours, and parallel parked.

James passed the test with flying colors. He relies on this objective score to tell him whether he can continue to drive, not on the piece of paper that says he has Alzheimer’s. He has an agreement with his family that he’ll take the test every year. If the results show a decline, if he’s no longer a good candidate for driving, or if at any time anyone in his family becomes uncomfortable with his driving, he’ll give it up. And he won’t argue about it.

“But even then, I hope people will offer support. The answer isn’t ‘well now you should stay at home,’ but ‘now let’s consider some alternatives.’ Is there a bus service? What programs are available? Are there volunteers?”

So, for now, James drives with Alzheimer’s.

At the end of the heated online debate, the parties agreed to disagree. There was no consensus, no black and white, no right and wrong. Some remain drivers, others have become willing passengers.

And I remain grateful for the brightly colored kayaks on the roof of my car.

Lisa Genova, Ph.D., author of Still Alice,

Wednesday, August 6, 2008

Self-Publish or Perish!

There is this saying in academic science: "Publish or perish!"

We say this because if you don't publish your results in peer-reviewed journals, you won't get the next round of funding, which means you won't have the money to do the next round of experiments, which means you're out of a job.

I no longer work at the lab bench as a neuroscientist. I haven't in ten years now. But this "publish or perish" mantra must've gotten under my skin and into my blood. It gave me just the mentality I needed to become a novelist.

Before I self-published my first novel, STILL ALICE, last summer, I tried going the traditional route. I spent a year querying literary agents. But no one wanted my book. I was sitting in a holding pattern with a completed novel and no one reading it, waiting to find out if STILL ALICE was ‘good enough,’ waiting to find out if I was a ‘real writer,’ unable to give myself permission to write the next book. This was not a fun year.

To the last agent that year who said, “No thanks,” I said, “Okay, then. I’ve had enough of this. I’m self-publishing.”

I’m so grateful I had the confidence to ignore his response:

“Don’t self-publish. You’ll kill your writing career before it begins.”

He couldn’t have been more wrong.

Instead of fearfully sticking my novel in a drawer, I moved forward. I self-published STILL ALICE, and the journey that followed and continues has been the ride of my life! I ultimately still wanted that big publishing house book deal, I just wasn't going to go the traditional route. I was in for almost a year of guerilla marketing, of putting on my armor and battling every day, trying to overcome the stigma of being a self-published author, trying to scale the wall of the publishing house castle.

I listed STILL ALICE on myspace, goodreads, shelfari, and more. I managed my own website and blog. I read David Meerman Scott's The New Rules of Marketing and PR and John Kremer's 1001 Ways to Market Your Books. I scheduled at least two book events a month: Readings and signings at local bookstores, coffee shops, Alzheimer's facilities or conferences, book clubs. And after seven months, after I'd started getting some good feedback and local press, I hired Kelley & Hall Book Publicity to join me in my efforts.

In the three months that I worked with Kelley & Hall, STILL ALICE was featured on television and radio. It was reviewed in newspapers, blogs, and at It was chosen for book clubs, as a staff pick at bookstores, and as a Finalist in General Fiction in the 2008 Next Generation Indie Book Awards. And it won the 2008 Bronte Prize for best love story in North America.

By nine months, things were definitely beginning to vibrate. By ten months, you could hear the BUZZ. Word of mouth and a generous introduction led me to a literary agent who loved my book and within a week of signing our contract, I was inside the castle. STILL ALICE sold at auction to Simon & Schuster for six figures! They’ve sold it to publishing houses in nine other countries with more to follow and plan to release it in the US on January 6, 2009.