It All Started with a Dance

“Still Alice” is a book that tells the story of a woman with early onset Alzheimer’s. This book was made into a movie, a brilliantly portrayed vision of a family finding its way through this horrible disease. My good friend and business partner, Catherine Grant, first told me about this book, as she read it to prepare herself for her role in the dancing competition “Dancing Stars of Coastal Georgia”, which was held a few weeks ago.

It would seem strange for a person to read a book based on a disease to prepare for a dance contest, and what in the world does dance have to do with Alzheimer’s?

Now that I have seen the movie, I totally get it. Catherine has experienced the ravages of this disease in her own family, not once, but several times, and she is now living it again through my family and our struggles with the disease in my mom. Catherine wanted to dig deep into this disease and truly understand the impact that it has on an individual and their family. She wanted to understand the nuances and the symptoms and the day to day gut wrenching, heart breaking plague that is this disease. She wanted to do that so she would fight and work and throw her entire being, body and soul, into her cause. She and her dance partner, Jos’eh Marion, tackled this competition as if their lives depended on it. And in some ways they actually do. Jos’eh was also touched by Alzheimer’s in his family, losing his beloved grandmother to the disease. If we follow the statistics and we don’t find a cure, either Catherine, Jos’eh, or myself will have Alzheimer’s by the time we are old, as one in three will be diagnosed by age 85. Therefore, this is literally a fight to the death.

Enough. It’s time to find a cure.

No one else, not one more human being on this planet, should have to watch someone they love slip away into that vacant stare and that fearful place that is full of garbled noises and endless fear. No, Alzheimer’s does not slip away quietly into the night; it kicks and bleeds and sweats and spits and it is angry. It is sad. It is so very sad, and it seems to last forever. It is an eternity of Groundhog Day. Alzheimer’s is a fatal illness. There is currently no cure. This is a race against a swift and fierce opponent. But we, too, are fierce, and we, too, are a force to be reckoned with. When there are people such as Catherine and Jos’eh, and all of the other dancers, volunteers, workers, caregivers, and family members who are giving of themselves, we may have a fighting chance to save ourselves. I know it’s too late for my Mom, and for so many others, but maybe if we hurry, if we throw enough money and passion at this cause, if we raise awareness, and this disease becomes priority, just maybe the cure will be found before it’s my turn, or Catherine’s turn, or Jos’eh’s turn, or your turn to walk down that tunnel of fear.

When Catherine first read the book “Still Alice”, she told me not to read it.

She said it would be too intense and would hurt too much. She was right. At that point in our journey I wasn’t ready. It would have made me too sad, and I was pretty much done with sad for the time being. I missed happy. I had always been deeply and immensely happy in my life, no matter what the circumstances, but this Alzheimer’s thing was kicking my butt. Watching Mom wake up each day and seeing her become aware once again that she is not at home, not with her old friends, not in her garden, not taking care of herself and her home, makes me sad. Throw whatever you want to at me, I can handle it, and I will, but to watch another human being suffer in this way, is overwhelming and all consuming. I see myself in Mom’s eyes. I know how I would feel if this was me. And so I fight, I fight to prevent this disease in myself and in my brothers and sisters, and in the people that I love. I run and I take vitamins, and I do brain games and memorize names and places, and I read constantly. I want to prove to myself each day that I don’t have this disease yet. My son reminded me last week that I had asked him to tell me when this took over our lives and began to interfere with our family. He said it’s time to take a look at our long term plan and he called me out on the fact that Mom was taking over my life. All I ever talk about is Mom, my phone rings constantly and it’s Mom, my brothers and sisters can’t have a conversation with me unless it is about Mom, all my kids ever hear about is Mom, and my poor husband has to constantly be the calm within the storm of Mom. Wow, no wonder many Alzheimer’s patients outlive their caregivers. It’s easy to become consumed in a battle that can’t be won.

Instead of reading the book “Still Alice”, I decided to watch the movie, right before the “Dancing Stars of Coastal Georgia” event. I was ready, and I needed to see it. When people ask me how it was, and how it made me feel, most expect me to say that it made me sad, or that it made me cry. No, instead, it was reassuring. It was somehow soothing and confirming and comforting to see how this disease behaves and how it impacts a family. It made me understand that Mom is a very typical Alzheimer’s patient, so there is a predictable pattern in what will happen. The family in this movie was portrayed beautifully and simply, yet the relationships and the interactions and the family dynamic was so complex. Just like in real life. Yes, the movie centered on Alice and her struggle with the disease, but it also revealed what happens in the family, and in the relationships within the family. It reassured me to see that what we are feeling and living is not so unusual. It also showed how this mother and her disease pulled this family together. Each person’s inner strength and beauty was revealed as we watched them live each day with Alice. I see that as my family lives through this together, we have become closer, we love each other more, and we appreciate the deep love, compassion, and beauty deep in our souls. We have reconnected as a family, and we have another common thread that pulls us together.

On June 5, my family as well as many other families, caregivers, friends, volunteers, and supporters came together for a common cause.

We attended the event “Dancing Stars of Coastal Georgia”, the culmination of months of hard work by professional dancers and their celebrity partners to raise funds and awareness for Alzheimer’s. Those who attended were treated with a ballroom dance competition, an amazing experience and a black tie event. Catherine and Jos’eh, and all of the dancers worked for months to prepare for this competition and this special night, and we were all able to enjoy an evening of escape as we watched this wonderful dance competition. The women had an opportunity to dress in beautiful gowns, the men wore tuxedos, and we could eat, drink, laugh, and share time with one another. There were so many great moments in this event, and it soothed us all to see the stories of those who are dancing, and why they are dancing. Watching Catherine and Jos’eh perform a flawless and beautiful dance somehow softened the sharpness of this disease. Love, passion, and beauty flowed through their very beings from their souls to the tips of their fingers. We thank them and all of the dancers for giving us the opportunity to experience this beauty.

I ran into an old friend in the grocery store last week, and she asked me why she hasn’t seen me at church lately.

I told her I didn’t have a good answer. Somehow it’s related to this disease. It took over my life. It consumed all of me. There was nothing left to give or to worship with, and I’m somehow afraid to get back in front of God and ask what to do next, because I am afraid that more will be asked of me and somehow I can’t measure up. My friend told me that she, too, was struggling, as her husband had been diagnosed with lung cancer. She asked me what I thought was hardest for me with Mom’s disease. My answer was simple, it’s because I can’t fix it. She reminded me that I don’t have to fix it. I just have to love mom through it. It’s not my job to fix it. I have to let it go, and continue to help Mom in simple ways, with the small stuff. I have to fall back on what Mother Theresa once said, “Not all of us can do great things, but we can do small things with great love”. So each one of us will do our part, we will love each other through this, we will raise awareness, we will raise money, we will offer day to day practical advice, and we will make connections with others. We will help one another, and we will ask for help when we need it. And it all started with a dance.

Well done, Catherine and Jos’eh, well done.

Alzheimer’s Association National Office

Our vision is a world without Alzheimer’s.

225 N. Michigan Avenue, Floor 17 Chicago, IL 60601
www.alz.org