Dear Hayley,
Yesterday afternoon, about 1 p.m. EST, I completed the edits on Brain in a Jar, the book about my father. I started working on it last year in Singapore, and have had a number of great people helping me edit and shape the book. (Including you!) What a strange trip it has been–spending a year in my memories of my father’s mind.
Life with Beauregard Lee was like a never-ending scavenger hunt. First, we needed to find a cure for various neurological conditions. Second, we had to hunt for snakes and alligators in the waters where we swam. Third, we had to avoid “dumb-dumbs” while increasing our intellectual acumen. Fourth, we had to travel all around the world and collect images in our heads and on our cameras. The list goes on and on. I’m certainly better for life with Beau even though it wasn’t always easy. It was never easy, actually. Growing up under the specter of Alzheimer’s is nearly as hard as growing old with it.
The picture is my dad at Clark Air Force Base in the Philippines where he worked as a surgeon during the Vietnam War. (He is the tallest one.) He got so sick of the bureaucracy of government-run health care, that he started signing his name George Washington on the massive amounts of paperwork. The illustration is one that Harry Bliss made for me.
I am happy today. How are you?
Love,
Nancy
dryland.co 
Dear Nancy,
Congratulations! What an accomplishment. I can’t even imagine what you felt at that moment. And what a picture! Your Dad is an absolutely fascinating man. What character threads the fibers of that being. Please don’t think me strange for referring to him in present time. I believe that is where our Dads truly live. We can’t always reach them, but as my Dad said the other day “I know exactly what’s going on I just don’t have the words to explain it to YOU.” That gave me such hope, so in light of that I am always going try to honor their lives by referring to them in the present tense. We would not even think about it had they not gotten Alzheimers. This disease may have the power to erase them from themselves but it cannot negate who they are and who they would be had they not had the misfortune of getting it. The fact that you’ve written your story keeps your Dad alive forever and allows us all the opportunity to meet him. Thank you.
We had a wonderful trip to Death Valley on our bikes. It really cleared my head. It was the first trip we’d had in a long time and I have to admit, I felt guilty taking it. I knew I was leaving my Mom behind to deal with…well…everything. She was so happy for us to go. You would have thought that it were she who was going. She & Dad sat in the white rockers on the front porch, cheering and waving “good bye” as we rode past. Even a moment like that though reminds me of how much things have changed. A few years ago she was tripping all over the place with my Dad. An “outing” now consists of going to the grocery store, or the bank. I dream of sending them away on a trip and in my mind I still see them the way they have always been. He her brave protector, her bold adventurer, she the wind in his sails, the smile in his heart. As I watch my Mom now fill my Dads shoes, I pray nothing ever erases my memory of who they have always been to each other.
I guess today finds me a little, reflective. Or maybe just a little sad. That’s not something I generally share, but I figure if we’re going to write a blog on our experience I should probably follow your lead and be brave with my true feelings. I came home from the trip yesterday and my Dad has just not been himself. He wasn’t his usual ebullient self when I came home. In fact, I almost though he was going to shake my hand instead of hug me. It’s as though he’s somewhere in the distance. Not completely here with me. It’s slight but I’ve never seen him like that. It’s like he’s concentrating on something we can only imagine. For the first time in my life I can’t feel his spirit connecting back 100% with mine. Just below the surface he’s reserving something and I know….this is the beginning of him not knowing who I am.
I remember the very day his mother forgot who he was. He loved no woman like he loved his Mom. He doted on her and she on him. He would sit beside her and hold her hand when we’d visit. “I love you Mumsy.”, he’d say. “I love you Donald dear.”, she’d return. It happened every time, just like that, not by rote but with genuine affection. A ritual of love between a mother and a son. I’ll never forget watching him reach for her hand (she was already several years into her disease by this point), and whisper “I love you Mumsy.” Only this time she looked at him with fear and embarrassment, let go of his hand and moved to the other end of the couch, clutching a pillow. The site of his hand resting in her empty spot is something I’ll never forget. My Dad never spoke of this moment, nor have I until now.
“Everything that is, WAS & always will be.”, my Dad would say. They are still here. They’re just below the surface.
Love,
Hayley