Click her to receive blog updates via email

Sunday, May 15, 2011


My dad came up from Alabama this weekend to participate in a 5K with me that benefits the Association for Frontal Temporal Degeneration. For those of you who don't know, my 63-year-old mom suffers from this disease. Actually, the irony is that she isn't the one suffering. FTD is a degenerative disease that essentially eats the mind. Eleven years ago, when she was only in her early 50's, we realized that she just "wasn't right." My loving, vibrant mother had become depressed and apathetic. Her personality changed. An MRI revealed that both of her frontal lobes were gone. Not diminished. Gone. Over the past decade, her disease has eaten her temporal lobes, as well, and part of her occipital lobes. She is now in a nursing home, completely dependent for care. She rarely opens her eyes and simply sits in a wheelchair all day. She eats if a spoon touches her lips, but that is about the only movement at this point. It crushes my heart to see her this way.

I remember vividly when we started down this road and the many stops between there and now. Today, as we sat listening to two families talk about how they recently put their family members with FTD in a nursing home, a part of me thought, "They're lucky." Of course they aren't. And when we put my own mom in a nursing home because my dad simply couldn't care for her anymore, we didn't feel lucky. But at that time, she recognized us. She said our names. She made eye contact. She smiled. She sometimes even said, "I love you." That is all gone. If you'd asked me then if we were lucky, I would've looked at you as if you were crazy. But right now, what I wouldn't give to have her look me in the eye and say my name.

When writing The Beauty of Grace, I tried to be sensitive in broaching certain topics. When I did this, I blindly assumed that my readers would view the material in much the same way that I do. But in the years since this journey began, I realize that this not only isn't so, it's impossible. Everyone has a story and it frames the way you view the world and the myriad issues we face. Once I realized that each reader would bring a different perspective to Grace, it freed me to simply write rather than aim to please. I have to let readers bring what they bring, knowing it will only enhance their experience and mine.

No comments:

Post a Comment