It's All In How You Hold It

Two years ago, I had a conversation with my friend, Jay, that changed my life. Here is some of what we talked about.

I asked him, What did it feel like to hear those three words---You Have Alzheimer’s?

“We (he and his wife) never really did have a moment of denial. I’d accepted the Alzheimer’s Disease diagnosis when the doctor put me on Aricept. That was the time of shock and relief. Finally, we have an answer. We never thought of Alzheimer’s, but it was great to know that it’s not something mysterious anymore. It’s just this thing that five million other Americans have.”

When Jay and his wife left his doctor’s office, they went straight to a bookstore to learn more about Alzheimer’s Disease. They bought The Forgetting (Shenk), Alzheimer’s Early Stages (Kuhn), and Alzheimer’s for Dummies. They learned about the symptoms and stages, living with the disease, and planning for the future. He took the medications prescribed by his physician. But something in Jay urged him to learn and do more.

Armed with a diagnosis, they attended to a mind-body retreat, where Jay began to discover new parts of himself, unused by Jay the architect, undamaged by Jay the man with Alzheimer’s.

He ate vegan meals rich in anti-oxidants and learned about natural healing. He began exercising.

“Every morning at the retreat, we did exercises focused on strength and balance and getting the lymph system moving. Aerobic exercise is the number one thing you can do for your health, your brain, and the growth of your brain.”

He started reading more, but not about Alzheimer’s Disease. He tells me that I absolutely have to read Eckhart Tolle, Deepak Choprah, Jon Kabat-Zinn, Stephen Levine, Gary Zukav.

“I’ve been spending a lot of time and attention on books about consciousness and healing. This is the real deal about who we really are, the stuff they never taught you in school. I’m taking it all in as fast as I can without getting in a hurry and falling over myself.”

Jay is looking at me now, his eyes alive and bright, his voice louder and sure of itself. He’s excited about all this, and his mood infects me easily. I perk up.

Look at all you’re discovering.

“I’ve taken my life back. I’m happy. I’ve never been happier. I’ve been spending a lot of time on self-awareness, discovery, and actualization through meditation. I never meditated before this disease. I’m starting to get it down. In the last year, I’ve been actively involved in an intensive meditation group that meets weekly, and the miracles that have been happening since I’ve started doing it have been just amazing.”

I’m nothing short of awed by Jay’s transformation. Here’s a man who has been diagnosed with a disease synonymous with death, but the man before me, in this present moment, is not a dying man.

“My main avocation has always been music. I’m in a folk string group, and I’d always played the banjo and guitar. Recently, my friends in the group encouraged me to try mandolin, so for a few years now I’m becoming a serious mandolin player.”

Wow, Jay, that’s so impressive. You realize that you have a disease that makes it difficult to learn new tasks.

“Yes, but that’s exactly what you need to do! It’s like doing my Sudoko every morning. Learning a new song, a new skill, challenging the grey matter and forging new pathways. And music also gives me a connection to the people I play with. My wife and I have been in a community chorus for years. It’s a great outlet for self-expression and creativity..”

Jay, what you’re doing is incredible. You know, most people can’t imagine you. When most people think of Alzheimer’s, they see end stage. They skip immediately from diagnosis to deathbed.

“For the first time in my life, I’ve got nothing to lose. It’s liberating. It’s real clear to me. Our priority is living the good years we have left. We know the shape of the end of this thing, but we still have a lot of living to do. Right after diagnosis, I began attending a guitar/mandolin camp, including a couples weekend with my wife, and I’ve already signed us up for next year’s mandolin camp and couples’ weekend. And I bought a new car, even though I may not be able to drive much longer.

I’ve come to see the importance acceptance and accommodation—accepting the diagnosis and all its implications, and learning to adjust and accommodate to the limitations it imposes—and then refocusing and reprioritizing my life to my newly rediscovered core values. Anyone can discover their own. Mine are family, creativity, life-long learning, service to community.”

A man with a video camera is hovering a few feet away. I look down at my watch. My time with Jay is about up. He has an interview with some folks from HBO next. I wish I we had more time together. I’m learning, inspired. I like him. He knows who he is and what he’s about. It’s magnetic. I want to be in the presence of his peace and excitement for life. I don’t know many people in this world who have what Jay has found with Alzheimer’s.

“A brilliant young professor left me, over 50 years ago, with 'it’s all in how you hold it.' For me, after all of this, it all boils down to living my life like there’s no tomorrow, while conducting myself and treating my body-mind-spirit in such as way as to maximize the number of tomorrows that I’ll have available.”

IndieReader.com

As a formerly self-published author, I can't help but keep my eyes and ears open for great, new tools for the guerrilla marketing writer. Here's a new and exciting website being launched soon to help self-published authors gain better visibility.

www.IndieReader.com aims to give self-published/POD (aka Indie) books an interactive and buzz-worthy platform, a place where they're not treated like second-class citizens because they're self-published. Authors at IndieReader will get increased visibility (the site's founder has 20+ years in PR), a sales venue, and a website page with their own URL.

"Just as Sundance has done for Indie films, IndieReader.com's mission is to promote and legitimize independent books and authors," says founder Amy Holman Edelman.

The site is slated to go live on June 1st.

So, if you're a self-published author, get on Facebook and GoodReads, check out AuthorZoom.com, and see if IndieReader.com can help readers find your book.

Further info and a look at the Home and Author pages can be found at www.indiereader.com.

Where I Write

I have a great office in my house. Brick floor, two deep and comfy chairs, a café table and chairs, and a desk with my iMac computer on it. Three of the four walls are windows, so it has lots of natural light, and the west window wall overlooks a saltwater creek that runs into Pleasant Bay. Two swans just swam by. A huge bulletin board hangs above my desk tacked with Still Alice clippings, pictures of my kids, and my intention board. My intention board has lots of great words on it that help me stay grounded and balanced by simple reminder: Grateful, Grow, Create, Live in the Moment, Books that Make a Difference, Believe, Open Minds.

Sounds lovely, right? Inspiring even. It is, but honestly, I prefer Starbucks. I find it difficult to write at home. There are bills to pay, laundry to do, phone calls to take and return, food in the fridge. Not to mention all the chocolate. So at home, there is always the possibility that when a scene I’m writing isn’t flying effortlessly from my head into the pen, I’ll think, Hmm. I really should pay those bills. I know if I find myself choosing bills over writing the next sentence, it’s time to get out of the house.

Plus, I have two kids (8 and 1). If I’m home, one of them always needs me for something, even if there’s a perfectly good adult other than me here to get the job done. I’m a sucker for games and songs and hugs and kisses.

So I go to Starbucks. There’s nothing else to do at Starbucks but drink caffeine, which I desperately need because the 1 yr old doesn’t sleep through the night, and write. You can’t even daydream there for long without looking like a nut. I wrote Still Alice almost entirely at Starbucks.

I love my home office and enjoy writing in here when I can. Like right now. But if I didn’t have it, I’d be fine at a table at the coffee shop down the street.

Just don’t tell my husband this. He’ll want to convert my beautiful office into something else, like a gym or a gameroom.

Can You Offer Me Some Advice on Self-publishing?

Yes, I can. I should say first that this is not a math equation. One plus two doesn’t necessarily equal three. There are no guarantees here. You can do everything I did and not get a publishing deal. But I hope you do!

It’s important to know that a self-published book was not my goal. I self-published because I couldn’t make any headway on the conventional road to a book deal. My self-publishing goal was to demonstrate that Still Alice had an enthusiastic and sizeable audience. I wanted to give my book a chance to wave its arms in the air and yell at the top of its lungs, to create a buzz loud enough for the literary agents and publishing houses to hear. And at the end of my self-published day, I still wanted a book deal from a traditional publishing house.

So with that goal, in 2007, I paid iUniverse to publish my novel. I required no editing, no book cover design (thanks to my talented husband), and no marketing. They offer all of these services and more, but I had either already done these things or was willing to do them myself. I simply needed them to print the book.

iUniverse is a print-on-demand company, which means they only print books that are ordered by customers. There are no stockpiles in warehouses, which is why it doesn’t cost the author an arm and a leg. There are other self-publishing companies out there, but I didn’t use them, so I can’t speak with any insight as to their pros and cons.

Since STILL ALICE was not going to be carried in physical bookstores outside my local area, it was crucial to have it available for purchase online. iUniverse made Still Alice available for sale at a lot of websites, like Amazon and Barnes & Noble.

I should also say that iUniverse did a great job producing a professional-looking, quality book. One reader, while holding the book in his hand and learning that it was self-published, said, “But it looks like a real book!”

So now I had a “real” book. Now what? iUniverse allows you to purchase copies of your own book at a discount. The % off retail increases as you buy more. Always have one with you. You never know who you’re going to bump into!


Get a website. Network online. Write your own press release and post it for free at www.pr.com. Become viral.

If you can start to feel the vibration of a buzz and you have the money, you might want to consider hiring a book publicist to assist you in your efforts.

After being self-published for ten months, I found an agent who sold the book to Pocket Books. The Pocket Books edition of Still Alice came out on January 6, 2009. Barnes & Noble sold more in the first two days than I sold in ten months. And in its first week, it debuted at #5 on the New York Times Bestseller List.

Brunonia Barry did it with The Lace Reader. Julia Fox Garrison did it with Don’t Leave Me This Way. I did it with Still Alice. It can be done.

Say yes whenever possible. Be tenacious. This is likely to be a marathon, not a sprint. Be sincerely grateful to everyone who helps you on your journey, because it will take a village to raise a self-published book. And remember to enjoy it all!

I hope this helps, and I wish you good luck!