Happy Chaos (28 page)

I really do believe that each one of us has the power to make our dreams come true. I think it is very easy for us to get caught up in our everyday lives, but if there is something that you have always wanted to do or try, go for it. It is never too late to follow your dreams or dive into a project that inspires you. We have our responsibilities, and it is important to make sure that we take care of them, but we should still stay inspired, create, and refuel our spirits.

Question of the day: What is your favorite memory of your parents from growing up?

“Catching them dancing in the kitchen.”

—Kelly F.

“When I was very little I remember my mother rocking me to sleep. I used to love that. I remember being chased by the neighbor's dogs and my father running out from the garage to save me. He stood there like a tower of strength, and the dogs which had been unstoppable monsters ran away. In one moment he had been so powerful and in the next he was holding me and wiping away my tears.”

—Allen

“Their happy faces when they used to take me and my sister to the beach every summer. They were proud somehow to grant us these great holidays by the seaside and so delighted to see us amazed by the beauty of the landscape.”

—Amelie

“With my mom, watching and listening to her play the piano, and my dad, it would have to be listening to him tell me all kinds of stories before I'd fall asleep at night. He's from Iran, so he always had interesting ghost and mystery stories.”

—Irene

“My favorite memory of my parents from growing up are all the little ‘flirty' moments I saw between them. I felt very loved and secure knowing my parents loved each other that much.”

—JoyfulTxGal

This is one of my favorite pictures of my dad and me from when I was a kid.

 

A
s you know by now, my dad's behavior was always a little wacky. He could get totally lost going someplace he'd been a million times before. Post-it notes filled his walls. He would forget where he parked his car or lose his keys on a regular basis. I remember once he even forgot me in the car. I was about five, and we were in Iowa for one of our summer trips to see his family. I vividly recall being in a restaurant when the loudspeakers started blasting storm warnings. The staff rushed everyone out and people scattered as fast as they could. We jumped in the car and pulled up to the cabin just as the tornado hit. My father got out and ran into the house for shelter. The problem was that I was still in the car, which had begun spinning around in circles. I was in the backseat pounding on the glass, and it was only once my dad was safely inside with our family that he realized he had forgotten to bring me inside, too.

It took years to realize that he was suffering from the very early stages of Alzheimer's. As a family we wanted to care for him at home, but we couldn't keep him safe. He would wander off at all hours of the day and night and call us from pay phones in the middle of nowhere, with no idea where he was. Once my mom got a call from the police because they'd found my dad, completely disoriented, on a street corner. The only way they'd known who to call was that he was carrying my mom's purse. After years of struggling with this disease, eventually we had to move him into an assisted living facility, and it was heartbreaking.

My dad and I had always had a complicated relationship. He'd been unconventional and not always reliable, but in so many other ways he'd been a huge inspiration to me. He had lived such a colorful life, and I wanted to make some kind of record of all he'd done—while he still had the memories. For years he'd talked about going back to Iowa again to see his family, and I decided I wanted to give him one last chance to do that—for him, but also for me. I saw his illness progressing so rapidly, and I knew this was my last chance to go with my dad on one more adventure.

For as long as I can remember, I've carried a video camera with me wherever I went. Something about that lens has always felt safe and protective to me. We decided to drive across country to see his family in Iowa and Tennessee, and to visit the most important places from my father's history—and we decided to document it on film, so that my dad's memories would live on forever.

I was terrified about this trip, but I knew this was something I had to do. I had a few friends who said they would join us to support me on the journey, so we all set off to see America in a whole new way as father and daughter. Riding across country in an RV with my dad was one of the most intense experiences of my life, and there were times I wasn't sure we'd make it. My dad had become like a child in many ways—a big, strong child. Other times he seemed to forget that I wasn't a child anymore. On the few nights we stayed in motels, I'd have to write him a note to tell him where I was, just in case he woke up and couldn't remember. Even with the notes he'd have full-blown panic attacks if he was alone. It was as if he thought I was still a little girl, and he was afraid he'd lost me, or left me in the car again.

I will never forget when we arrived in Gadsden, Alabama, where my father had fought for civil rights in the 1960s. He was a true voice of change, fighting for equality for all. So many people don't know that some of our favorite actors from the sixties were not only incredible on-screen but were also profound humanitarians. I am so proud that my father was among them, using the power of media to create social change. He, Marlon Brando, Paul Newman, and Tony Franciosa had gone to Gadsden as ambassadors of goodwill. Now here we were so many years later. We were staying in a tiny little motel, and the locals had put up a sign in front of the building: WELCOME BACK, VIRGIL FRYE. Suddenly my dad had a total meltdown. His mind had gone right back to the sixties, and he was sure this welcome sign was actually a menacing threat that people were out to get him, and they were going to kill him.

The crisis passed, and one of the most moving moments of the trip for me was finding an amazing man who was just a little boy when my dad spoke in Gadsden. He remembered being in the church where my dad had been and how inspired he was by what my dad had said all those years ago. A survivor of some of the worst oppression the South had seen, this man was now a powerful elected official who took the time to thank my father for his contribution. It was a truly incredible moment.

When my dad and I started out on that journey, I thought I was doing the film to document my dad's life. Very quickly I realized that the film I was making was the story of our life together, and a last chance for us to get to know each other before it was too late. For all the difficult times I'd had with my dad over the years, what I remembered most, and what was truly most important, was the joy he brought to me.

When I got back from the trip and watched the footage, it also occurred to me that this film wasn't just for my family—it could possibly help a lot more people. I was not alone in this struggle of having a loved one suffer from Alzheimer's. I decided that I needed to share it with others. A truly amazing woman and editor, Yana Gorskaya, and I spent days and nights cutting together the footage into a documentary called
Sonny Boy
(the title was inspired by my father's boxing name, Sonny). It went on to win awards and play at numerous film festivals, but most important, I was able to touch the lives of others facing Alzheimer's and finally gain the courage to share my journey with my dad. So often with Alzheimer's disease it is a quiet tragedy that people are scared to talk about. It can tear families apart, but it can also bring them together. I am so truly grateful for the support that others affected by the disease have shared with me and for the Alzheimer's Association and their tireless work to find a cure. The face of Alzheimer's has changed. It is not something that affects only the elderly. It is something that touches all of us. And it truly is the long good-bye.

My father's disease has worsened in the years since our incredible road trip. He's been ill for my girls' entire lives, and we've talked about how their grandfather's mind is kind of a gray space, and what that means. Poet just asked me the other night as I was lying beside her putting her to sleep if my daddy would be sick forever. A tear fell from my eyes as I was caught off guard, emotions filling my heart. I said that even though he is sick now, he wasn't always that way and that he lived an amazing life. I told her that I believed he was in a magical place somewhere between two worlds, the physical one and the next one, but that I hoped he was happy wherever he was. And with that she smiled and went to sleep. It is incredible how much our children are aware of everything around them.

In March, I was invited by the Alzheimer's Association to join them in advocating on Capitol Hill for Alzheimer's research. We decided to make it a family affair, and I brought along Jason and the girls, my brother Meeno, his wonderful wife, and their daughters so that we could all experience it together. There we stood on the steps of the Lincoln Memorial, where my dad had marched with Martin Luther King, Jr., and we talked about what an incredible thing my children's grandfather had done along with so many others who fought for civil rights. As a family we remembered, for all of those who can no longer remember for themselves.

Here we are in front of the White House on our trip to Washington, D.C.

The one thing I have come to realize more than anything else through the process of having a loved one with Alzheimer's is that as heartbreaking as it is, they live in the moment. Without memory of the past or able to look into the future, all they have is the here and now. I have learned from my father how to cherish what is in front of me, to hold on to the moment and love it, for we don't know what will come tomorrow.

For us it started with the small things. He would write down little reminders everywhere, forget to get gasoline for his car, etc. We did not realize that he was covering up just how little he could remember. He was a great actor, and he hid the progression of his disease. We would always make light of it, unaware of just how serious it had become. Certainly there are times we can all be forgetful, but if you are truly concerned for a loved one or yourself and you have any questions at all, the Alzheimer's Association is an amazing support. Remember that no matter what, you always must keep a sense of humor. That has been one of the greatest lessons for me. Otherwise it gets so heavy that you just want to cry. Better to laugh and cry than to be heartbroken and cry without the laughter.

I want to thank all of the social workers and caregivers who have shown my father such love as his symptoms have progressed. I also wish to reach out to all of the millions of families who are affected by Alzheimer's and dementia—thank you for sharing your stories, voices, and memories.