Updated: Aug 29
I recently listened to an Audible, “The Diving Bell and the Butterfly.” The book is written by Jean-Dominique Bauby after he suffered a stroke that left him locked inside a paralyzed body except being able to blink his left eye. Being able to blink one eye was the only way he had to communicate to the world that he was still there, with all of his cognitive abilities still intact, and it was the method by which he dictated his story. In his memoir, Bauby tells of his commitment to live life as fully in his mind as he had before his stroke. The prose is beautiful, colorful, and compelling. He takes us on the journey as his mind flows seamlessly between the horror of his reality and the real and imagined adventures of his consciousness. It is a beautiful sad story that had me laughing one moment, crying the next, and left me drawing parallels to what my brother is going through today.
In an earlier post titled How Do I Say Goodbye, I wrote about Mike’s journey with advanced -early-onset Alzheimer's disease. We thought he had only a few months left with us at the time. That was almost six months ago and my brother’s body shows little interest in going anywhere. Most days he seems strong and healthy, if you ignore the obvious. I am no more clear today as to whether that is good news or bad than six months ago, although Jean-Dominique Bauby’s story offers a perspective.
Mike’s story and Jean-Dominique’s are flip sides of the same terrifying coin. Unlike what happened to Bauby, Mike’s body is strong. It is his cognitive abilities that have failed him. Mike suffers from his own form of locked-in syndrome, without the cognitive ability to communicate his experience to his loved ones. He has constant hallucinations. He spends much of his days walking up and down the hallway, picking up imaginary things, studying them, and putting them in his pocket or handing them to his visitors. They appear to be as real to him as they are delusional to me. I think of the stories Bauby tells in his book about his imaginary adventures as he tries to find fulfillment, locked inside the prison of his frozen body. I can’t help but wonder where my brother’s adventures take him. I hope that, as with Bauby’s story, my brother is somehow able to find some level of fulfillment in his reality, even if he can never communicate that to us.
I know that early in the progression of this disease Mike was angry and scared, I would love to believe that the world he is locked into today is a much better place. In the little time I have spent with him over the last year, I would say he seems generally happy. Maybe I am the delusional one, but I would hate to think that he is just as afraid today as he was, or worse.
We may never really understand my brother’s experience or that of anyone suffering from Alzheimer's disease. The one thing I see clearly is how horrible it is for the ones left behind. September 15th will mark the fiftieth anniversary of the day that Mike and the love of his life, Marilyn, were married, and only one of them will be truly there to celebrate. I know the thought of that would tear my brother’s heart in two. My heart breaks for them both and I find solace in the fact that they had so many wonderful years together, and I imagine those memories only make it more painful right now.
Wherever Mike’s adventures take him, we know it is a road he must travel without us. We can only wish him a pleasant journey and that he someday soon finds a comfortable resting place where he will be at peace. Only then can we say a painfully welcome “Goodbye,” and begin to find comfort in the memories of an amazing husband, father, brother, and friend.