Tuesday, May 5, 2009

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.”


Kate said...

Hi Lisa.

It's 12:37 AM. I just finished Still Alice on the heels of my husband going to bed 2 hours ago while leaving me with "goodnight" and "you are going to finish that book tonight aren't you?"

Well yes, of course, and then after reading the interview at the end, instead of going to bed I was compelled to find your blog.

Anyway. Alzheimer's ripped my vibrant and healthy and kind and insightful and incredible Dad away from me far far too early. He never knew his beautiful grandchildren. He thought my sister, who cared for him in her home towards the end was me, his eldest daughter...the one who left and moved to California from NY 10 years earlier.

In any case, I am more aware because of you. More terrified for myself and my family because of you, and moved to not back burner this disease because of you. I am a nurse clinician (of Neurosurgery no less) for the past 20 years. A mother of two, and wife.

Thank you for your beautifully written book. I know I will read it again and again.

Right now, my only problem is, it's 12:54, I'm still awake and there are at least 6 people I have promised my book to.

brendafries said...

Wow. Your book really has opened my eyes on Alzheimer's. It made me really think. My grandfather seems to be having symptoms of this and now that I've read this book it's making me wonder what if I don't get to see him before he forgets who I am?
Thank you so much for writing such an amazing book like this.

Donnamo said...

I have recently begun to hink I have some form of hypomania....I am stimulated by being around people, upbeat music, etc... and begin to feel so energized I add more andmore to my schedule (I do not have depression. (I am 65 years old).

In reading about bipolarism is seems like something that would fit in your aea of expretise. Do you have any suggestions of books to read, websites to go to etc... I feel like Alice in some ways and I wish someone would write a Still Donna book about my condition.
Thank you for responding, Lisa.

Grace said...

Hi Lisa,
I finished Still Alice yesterday and I cried so much towards the end. I dont have any family member diagnosed with this terribly fatal disease, but I found the book very touching and beautifully written.
I loved Alice and her family and I was so proud of her. I wish we can do more to people with Alzheimer's all over the world, your book added this disease to my list of To Dos...
By the way, I loved the butterfly and how it is printed on every page...brilliant piece.

Rebekah Williams said...


I just finished Still Alice. I am deeply moved. Thank you for creating this work, for sharing Alice and her journey with us. I am so glad I read it.

kat(e) said...

Hi Lisa,

Our book club just finished reading Still Alice. It was our favorite book of the year! Some of us have already read it twice. We're looking forward to reading Left Neglected as well. Thank you!

MarceJ said...

Hi Lisa,

I read Still Alice before blogging but it has helped me to deal with my father in a new way. It is a favourite of the year that I have recommended to many to read.

Thanks for writing it and I look forward to all your new endeavours.

I'm sure Starbucks loves you also, lol. It can be hard to choose between the love of your family time to reading also, well in your case writing and reading.


Norma said...

Thanks, Lisa, for this book.

My husband was diagnosed with mild cognitive impairment in '05, and last year, they started calling it Alzeimers. He has been on Aricept and Namenda nearly from the beginning.

He is fortunately still able to take care of himself and drive to familiar places.

But, I have lost my very best friend, as well as someone with whom to share memories of 50 years together.

The good days are wonderful; the bad days pass.

Your book gave me insight and comfort [and I haven't even finished it yet!], because I can understand better what is going on inside him, and the way he is dealing with it.

Also, you have made me aware of possible resources and help. I'm going to ask our MD and neurologist about these at our next visits.

Again, thank you for writing this book -- and writing it so well!


Marietta said...

I just finished reading Still Alice for the second time. I'll probably read it again and yet again.

At the very beginning of the year 2000, the company I worked for was in the midst of a huge restructuring. I'd been through plenty of reorganizations before, but this time was different. I was having great difficulty learning the new systems (Me -- who had taught myself the previous unfriendly mainframe system I used!). In addition, I was having occasional trouble finding words and frequent trouble with spelling errors. Even off the job I was having trouble. I later realized I stopped listening to the radio in the car about then because it was too distracting. Trips to Costco, with it's myriad of things and noises and lights, left me mentally exhausted. I chalked all this up to the stress at work, even though I was having a couple physical symptoms that didn't add up at all. I suspect I didn't want to think there was anything "real" wrong with me.

Finally, in the summer of 2000, I had a problem with my vision which eventually led to my having all sorts of neurological tests, and I learned my troubles were not, in fact, due to stress. At age 45, I was diagnosed with relapsing-remitting multiple sclerosis.

No, I don't have Alzheimer's Disease, but my particular version of MS causes me to share some symptoms with Alzheimer's patients. I have cognitive deficits. No longer can I mentally turn on a dime, or snatch just the right word out of the air or even spell the most familiar words correctly. I often can't remember that I've already said something, and I say it again. I forget things from one room to the next. I'm like Alice in too many ways for comfort.

I have multiple sclerosis, but I don't need a wheelchair or a cane or any other physically assistive device. I have a version of MS some of us mockingly call the "But You LOOK Fine" type. I read that line in Still Alice, and I think I probably know almost exactly how Alice felt when she heard it.

I resent having Multiple Sclerosis, but I admit I'm hugely relieved it is not as aggressively destructive a disease as Alzheimer's. Knock on wood. After all, there is no rule book that says just because I have MS I can't get another nightmare of a disease.

Thank you, Lisa Genova, for giving us Alice, who will always be still Alice somewhere, if only in our hearts and minds.

Tameri T. said...

I blogged about your book at www.aintiawriter.blogspot.com. Thanks for writing it.

Nicola said...

Hi Lisa
I have just finished "Still Alice" and have just been given your second book for mothers day here in New Zealand!
As an Occupational Therapist, I have worked in both Neurology and Psychogeriatrics in the commuunity and have a love of the " Brain" and people who have been effected in some way from injury and disease.
I have worked with Neuropsycholgists and think they are fab.
What I have really enjoyed about your book is some insight into how the person is effected from their perspective. You have managed to cross a bridge between academic, health professional to speaking to the families/public in real everyday language and with functional examples of the journey with Alzehiemers. That truly is a gift!!!!
I am in awe of you and totally loved this book, it is on my "to read once a year list"!!! Thank you sooooo much.
Nic :-)

Nina said...

Lisa! Thanks for this! Very much my experience with my father's Alzheimer's too... However, in his case, because of the already advanced state of his disease etc, I did the meditating for him. Such is the life of a clairvoyant, I suppose! ;)
My blog on our experiences working through Alzheimer's with energy work is: ninacollart.com
Hope to see you again soon (We met once or twice at the Box Office!)
Nina Collart