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.”
Tuesday, May 5, 2009
Thursday, April 23, 2009
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.
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.
Monday, March 2, 2009
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.
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.
Wednesday, January 28, 2009
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!
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!
Tuesday, October 14, 2008
Aricept AND Namenda
Why take medication for Alzheimer's when they don't work?
I've heard this question too many times to count. My answer has always been anecdotal, second-hand:
But they do!
Finally, we have a scientific answer confirming what I've scientifically suspected and personally witnessed. Dr. Alireza Atri and his colleagues at Massachusetts General Hospital published the first long-term study of the real-world use of cholinesterase inhibitors, like Aricept, and Namenda in the July/September issue of Alzheimer Disease and Associated Disorders. They found that patients taking BOTH Aricept and Namenda declined less than patients taking only Aricept and even less than patients taking no medication.
Did these patients still decline? Yes.
Is this combination therapy a cure? No.
If you have Alzheimer's, is it worth getting on BOTH medications as soon as possible? According to the results of this study and what my friend Bill says, Yes.
Bill: My doctor referred me to a psychiatrist, and he immediately put me on Aricept and Nameda.
Me: How did he figure out you had Alzheimer’s?
Bill: He didn’t. He said to me, ‘I’m going to do one thing. You’ve been working on this thing for four months. Your doctor doesn’t know what it is. I have no idea what it is. But I’m going to put you on two medications. If in fact you have Alzheimer’s, and we confirm that a year from now, because it’ll take that long, you’ll have already been on the medication. If we don’t put you on the medication, you’ll have lost all of that cognitive ability, and you’ll never get it back.
It’s different today, with the medications we have. When my Dad had this, when they finally found out what was going on, it was, Make him as comfortable as you can. There were no ways of medically caring for these people then. If anything, they were sedated, to make them less…less…less…ahh”
Me: Agitated?
My stomach sinks as soon as I hear myself offer the word, and I hold my breath. Whenever I encounter someone with Alzheimer’s struggling to find a word, I have to work to keep myself from becoming an enthusiastic guesser in a game of Charades. My instinct is to jump in and make a stab at it. But if the word I suggest isn’t the right word, then my interruption might derail his train of thought entirely. Luckily, I picked the right one.
Bill: Yes, thanks, agitated. He said to me, ‘You’re just too young to give up on.’ So what this doctor did in good faith, putting me on these two medications, turned out to be a God send for us. And I don’t think that’s happenstance. I think things work for a purpose. It took me about eight months to get in to see the neurologist I needed to see. I took the neuropsych testing twice, for two days. That confirmed it.
Me: What went through your head when you were told you had Alzheimer’s Disease?
Bill: I was relieved. I’d been searching for so long. What started out as a four-month journey turned out to be an eighteen-month odyssey. I was relieved. I’ve never been angry, never been afraid. Now there are people who are angry, who are in denial, who are frustrated and feel a stigma associated with it. There are many people in my support group who are angry. Anger, in denial, frustrated, scared. I am none of those. I’ll be the first one out saying I’ve got Alzheimer’s. It is a disease I have. It is not who I am.
Lisa Genova, Ph.D., author of Still Alice, www.StillAlice.com
I've heard this question too many times to count. My answer has always been anecdotal, second-hand:
But they do!
Finally, we have a scientific answer confirming what I've scientifically suspected and personally witnessed. Dr. Alireza Atri and his colleagues at Massachusetts General Hospital published the first long-term study of the real-world use of cholinesterase inhibitors, like Aricept, and Namenda in the July/September issue of Alzheimer Disease and Associated Disorders. They found that patients taking BOTH Aricept and Namenda declined less than patients taking only Aricept and even less than patients taking no medication.
Did these patients still decline? Yes.
Is this combination therapy a cure? No.
If you have Alzheimer's, is it worth getting on BOTH medications as soon as possible? According to the results of this study and what my friend Bill says, Yes.
Bill: My doctor referred me to a psychiatrist, and he immediately put me on Aricept and Nameda.
Me: How did he figure out you had Alzheimer’s?
Bill: He didn’t. He said to me, ‘I’m going to do one thing. You’ve been working on this thing for four months. Your doctor doesn’t know what it is. I have no idea what it is. But I’m going to put you on two medications. If in fact you have Alzheimer’s, and we confirm that a year from now, because it’ll take that long, you’ll have already been on the medication. If we don’t put you on the medication, you’ll have lost all of that cognitive ability, and you’ll never get it back.
It’s different today, with the medications we have. When my Dad had this, when they finally found out what was going on, it was, Make him as comfortable as you can. There were no ways of medically caring for these people then. If anything, they were sedated, to make them less…less…less…ahh”
Me: Agitated?
My stomach sinks as soon as I hear myself offer the word, and I hold my breath. Whenever I encounter someone with Alzheimer’s struggling to find a word, I have to work to keep myself from becoming an enthusiastic guesser in a game of Charades. My instinct is to jump in and make a stab at it. But if the word I suggest isn’t the right word, then my interruption might derail his train of thought entirely. Luckily, I picked the right one.
Bill: Yes, thanks, agitated. He said to me, ‘You’re just too young to give up on.’ So what this doctor did in good faith, putting me on these two medications, turned out to be a God send for us. And I don’t think that’s happenstance. I think things work for a purpose. It took me about eight months to get in to see the neurologist I needed to see. I took the neuropsych testing twice, for two days. That confirmed it.
Me: What went through your head when you were told you had Alzheimer’s Disease?
Bill: I was relieved. I’d been searching for so long. What started out as a four-month journey turned out to be an eighteen-month odyssey. I was relieved. I’ve never been angry, never been afraid. Now there are people who are angry, who are in denial, who are frustrated and feel a stigma associated with it. There are many people in my support group who are angry. Anger, in denial, frustrated, scared. I am none of those. I’ll be the first one out saying I’ve got Alzheimer’s. It is a disease I have. It is not who I am.
Lisa Genova, Ph.D., author of Still Alice, www.StillAlice.com
Tuesday, September 2, 2008
Remembering the Spoons
I've lived in Chatham for a year now. Recently, my husband and I looked around and marveled at all we've accomplished in one year. The walls are painted, the wild and overgrown yard is somewhat tamed, the rooms are invitingly furnished, and oh yeah, we had a baby. Thinking back to last summer, I remembered how unsettled and exhausted I felt. Everything had to find its home before I could feel at home. Thinking about this, I remembered my blog post from last year about the spoons and smiled. I've come a long way in a year. I feel at home in my home now. And I can always find the spoons...
Last year:
It takes me three tries to find the silverware drawer. I hand my seven-year-old daughter a spoon. She finishes her cereal, brushes her teeth, and we’re ready to go.
I can’t remember where I put my shoes. When searching for them, I spot my daughter’s library books that I forgot to return. Again.
After I locate my shoes, I’m finally ready to leave the house but then realize that I don’t have my sunglasses. I walk in and out of every room, hunting, desperate, mad at myself. Unsuccessful, I resign myself to spending the rest of the bright, summer day squinting when my daughter announces, “Mom, they’re on your head.”
I don’t have Alzheimer’s. I’m thirty-six years old, pregnant, and just moved into a new house in a new town. I’m tired from the move and the pregnancy and keeping up with the ceaseless needs of my life and family. And everything here is still unfamiliar.
In the old house, the silverware was kept in the drawer next to the refrigerator. Here, it is to the right of the sink. In the old house, we kicked off our shoes by the front door. Now, the front hallway is littered with towers of boxes, so our shoes end up somewhere else. My routine has been disrupted, and the mental map of where I live is under construction.
It’s no wonder I’m forgetting things. What a relief it is to know that this is normal and temporary, that once we’re moved in, once we get used to life here, once I have the baby (okay, when the baby turns four), then I’ll grab a spoon every time I reach for one and without even consciously thinking about it.
I can’t imagine what it must be like to have Alzheimer’s Disease---to experience these types of maddening lapses in cognition AND to know they will only keep happening and get worse. It must be more than frustrating and exhausting. It must be terrifying.
I think about how quick I was to give up on finding my sunglasses and do without them, and I wonder how readily people with dementia decide not to bother, to give up looking for the keys, that word, that thing.
Imagine if I’d moved AND had Alzheimer’s. This is precisely what happens in many families. Living alone becomes too dangerous for a grandmother, father, or aunt with Alzheimer’s, or the work of commuting and running two households becomes too much for caregivers living elsewhere. How difficult it must be for someone already coping with an unreliable mind to move to a new home! I’m not saying it’s wrong to have your grandmother, father, or aunt move in with you or to a care facility. I’m just saying---it must be incredibly hard to find the spoons.
Lisa Genova, Ph.D., author of Still Alice, www.StillAlice.com
Last year:
It takes me three tries to find the silverware drawer. I hand my seven-year-old daughter a spoon. She finishes her cereal, brushes her teeth, and we’re ready to go.
I can’t remember where I put my shoes. When searching for them, I spot my daughter’s library books that I forgot to return. Again.
After I locate my shoes, I’m finally ready to leave the house but then realize that I don’t have my sunglasses. I walk in and out of every room, hunting, desperate, mad at myself. Unsuccessful, I resign myself to spending the rest of the bright, summer day squinting when my daughter announces, “Mom, they’re on your head.”
I don’t have Alzheimer’s. I’m thirty-six years old, pregnant, and just moved into a new house in a new town. I’m tired from the move and the pregnancy and keeping up with the ceaseless needs of my life and family. And everything here is still unfamiliar.
In the old house, the silverware was kept in the drawer next to the refrigerator. Here, it is to the right of the sink. In the old house, we kicked off our shoes by the front door. Now, the front hallway is littered with towers of boxes, so our shoes end up somewhere else. My routine has been disrupted, and the mental map of where I live is under construction.
It’s no wonder I’m forgetting things. What a relief it is to know that this is normal and temporary, that once we’re moved in, once we get used to life here, once I have the baby (okay, when the baby turns four), then I’ll grab a spoon every time I reach for one and without even consciously thinking about it.
I can’t imagine what it must be like to have Alzheimer’s Disease---to experience these types of maddening lapses in cognition AND to know they will only keep happening and get worse. It must be more than frustrating and exhausting. It must be terrifying.
I think about how quick I was to give up on finding my sunglasses and do without them, and I wonder how readily people with dementia decide not to bother, to give up looking for the keys, that word, that thing.
Imagine if I’d moved AND had Alzheimer’s. This is precisely what happens in many families. Living alone becomes too dangerous for a grandmother, father, or aunt with Alzheimer’s, or the work of commuting and running two households becomes too much for caregivers living elsewhere. How difficult it must be for someone already coping with an unreliable mind to move to a new home! I’m not saying it’s wrong to have your grandmother, father, or aunt move in with you or to a care facility. I’m just saying---it must be incredibly hard to find the spoons.
Lisa Genova, Ph.D., author of Still Alice, www.StillAlice.com
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, www.StillAlice.com
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, www.StillAlice.com
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 amazon.com. 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.
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 amazon.com. 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.
Thursday, July 31, 2008
Just Say Yes--And
Just Say Yes—And
It’s the #1 rule in Improvisational Acting. You say, “Yes, and,” to everything you are offered. As actors cooperating to create a fictional reality on stage, you agree to agree, or nothing works.
If your fellow actor says to you, “Come for a ride on my new magic carpet!” your job is to ‘accept the gift’ and join in:
“Okay! This is a beautiful weave, what is it silk?”
or
“I’d love to! This magic carpet is way nicer than my cousin Aladdin’s. His is a ’91, it’s all frayed and worn, and it stalls out all the time. Where did you get it?”
or
“I’m in! Where should we go?”
And the conversation, the relationship, can continue.
If you say:
“No. I don’t want to.”
or
“No, that’s not a magic carpet. That’s an ordinary rug.”
If you deny or negate the reality your fellow actor has offered to you, then you will kill your opportunity to interact in a way that grows and builds and leads you somewhere. If you say No, the scene is dead.
I recently had the good fortune to participate in a Healing Moments workshop which applies this Improvisational Acting rule to communicating with people with Alzheimer’s. By saying Yes—and, by agreeing to the reality a person with Alzheimer’s is experiencing, we can meet them in the present moment and find opportunities to interact in ways that grow and build and lead somewhere.
Here is the exercise I remember most. I was asked to say a simple statement, something I believe to be true. I said, smiling, “I have the most beautiful 6-month old boy.”
The instructor, looking me straight in the eye and without smiling, said, “You do not have a 6-month old baby. Your kids are all grown. You don’t know what you’re talking about.”
My turn came around again.
“It’s a glorious, sunny day outside.”
“No, it’s not. It’s dark and cloudy, and it’s going to rain.”
Here’s what I noticed. Even though I knew this was just an exercise, I didn’t want to talk with this woman. I didn’t like being told I was wrong, I didn’t like the look on her face, and I didn’t like her tone of voice. In fact, I felt my emotions stirred by the interaction, like I was readying to argue or fight.
When the instructor said, “Yes—and,” I felt great. I liked her and wanted to say more.
“I have the most beautiful 6-month old boy.”
“He is gorgeous. Such intelligent eyes. You’re so lucky to have such a beautiful baby.”
“It’s a glorious, sunny day outside.”
“It is. I think the daffodils are in bloom now. Those are my favorite flowers.”
In an improvisational theatre scene, in a conversation with someone with Alzheimer’s, in life, we don’t know what is going to be said or done next. Instead of trying to control what happens or negate what happens, try being present with the person you’re with, go where they ask you to go, and see where it leads you together.
For more information about Healing Moments programs and workshops, go to www.HealingMoments.org
Lisa Genova, Ph.D., author of Still Alice, www.StillAlice.com
It’s the #1 rule in Improvisational Acting. You say, “Yes, and,” to everything you are offered. As actors cooperating to create a fictional reality on stage, you agree to agree, or nothing works.
If your fellow actor says to you, “Come for a ride on my new magic carpet!” your job is to ‘accept the gift’ and join in:
“Okay! This is a beautiful weave, what is it silk?”
or
“I’d love to! This magic carpet is way nicer than my cousin Aladdin’s. His is a ’91, it’s all frayed and worn, and it stalls out all the time. Where did you get it?”
or
“I’m in! Where should we go?”
And the conversation, the relationship, can continue.
If you say:
“No. I don’t want to.”
or
“No, that’s not a magic carpet. That’s an ordinary rug.”
If you deny or negate the reality your fellow actor has offered to you, then you will kill your opportunity to interact in a way that grows and builds and leads you somewhere. If you say No, the scene is dead.
I recently had the good fortune to participate in a Healing Moments workshop which applies this Improvisational Acting rule to communicating with people with Alzheimer’s. By saying Yes—and, by agreeing to the reality a person with Alzheimer’s is experiencing, we can meet them in the present moment and find opportunities to interact in ways that grow and build and lead somewhere.
Here is the exercise I remember most. I was asked to say a simple statement, something I believe to be true. I said, smiling, “I have the most beautiful 6-month old boy.”
The instructor, looking me straight in the eye and without smiling, said, “You do not have a 6-month old baby. Your kids are all grown. You don’t know what you’re talking about.”
My turn came around again.
“It’s a glorious, sunny day outside.”
“No, it’s not. It’s dark and cloudy, and it’s going to rain.”
Here’s what I noticed. Even though I knew this was just an exercise, I didn’t want to talk with this woman. I didn’t like being told I was wrong, I didn’t like the look on her face, and I didn’t like her tone of voice. In fact, I felt my emotions stirred by the interaction, like I was readying to argue or fight.
When the instructor said, “Yes—and,” I felt great. I liked her and wanted to say more.
“I have the most beautiful 6-month old boy.”
“He is gorgeous. Such intelligent eyes. You’re so lucky to have such a beautiful baby.”
“It’s a glorious, sunny day outside.”
“It is. I think the daffodils are in bloom now. Those are my favorite flowers.”
In an improvisational theatre scene, in a conversation with someone with Alzheimer’s, in life, we don’t know what is going to be said or done next. Instead of trying to control what happens or negate what happens, try being present with the person you’re with, go where they ask you to go, and see where it leads you together.
For more information about Healing Moments programs and workshops, go to www.HealingMoments.org
Lisa Genova, Ph.D., author of Still Alice, www.StillAlice.com
Wednesday, July 2, 2008
Alzheimer's Ribbon
An Alzheimer's Ribbon is available at Caring.com. Please make your own ribbon and post it on your blog, social networking page, or anywhere else you've got a web presence! For each ribbon posted, Caring.com will donate $10 to the Alzheimer's Association.
http://www.caring.com/ribbons/new
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