When I let myself imagine life possibilities that strike fear in my soul, living with dementia or Alzheimer’s is high on the list. There is something terrifying about imagining the loss of my faculties, especially during the stage when I would realize that something wasn’t quite right but not be able to fully identify, slow or stop it. About a year or so ago, I made a pact with a dear friend that if one of us were ever in a coma or suffering from dementia, we would see to it that any long dark chin hairs on the other were plucked regularly. She and I both have no sister in this world, so we will fill in that family gap if either of us goes down one of these paths. It is a matter of dignity.
Last fall, I read a powerful book on the topic of early onset Alzheimer’s with a group of friends. Still Alice by Lisa Genova is powerful and poignant as it presents the perspective of the sufferer and the people in the close and far out spheres of the one diagnosed with this brutal disease. No one initially wanted to publish this fictional tale, so she self published it and sold it out of the trunk of her car – some things are just too painful to read, the professionals thought. But it has resonated deeply with caretakers, families and beyond. It is a multi-awarded book – some stories just must be told. This book schooled me in the complexities and varied perspectives of so many who are touched by this deadly killer. Still Alice offers a look into the hope and redemption in the lives touched by such a plague.
This week, I had another lesson in how to respond to people who are living with this silent thief. I was spending the morning among close friends and fellow life journeyers. We are a fairly diverse group – with differences in age, stage, income level and race. We are bound together as women, God lovers and ones who know the power and joy of being still and silent in the midst of our busy lives. We share our stories in word and sometimes by just showing up.
There is one beautiful lady in our midst who I assume is somewhere in this struggle for her mind and battle for presence among those she loves. I know her past only by reputation and the stories of others. She is well loved and respected – then and now. Her husband brings her to this special group every month. He holds her arm as she kind of shuffles up to the door and then turns to leave as she makes her way to a close by seat. At our recent Christmas gathering, her closest friends let her share a special piece of her heart as they helped her read out loud beautiful poetry penned in days gone by. We each received a precious gift of a booklet filled with her poetry. Her countenance shining brightly, she imparted to the listeners a little taste of heaven.
Yesterday, she sat down right next to me, and tears leaked out of my eyes. It was her birthday, so we sang happy birthday to her. She smiled brightly. I put my arm around her and soaked in the beauty of the moment. In this place, she is treated with dignity and honor. She is loved. Even as precious pieces of self slip away from her, she still has so much to teach and offer to others. I am blessed to know her.
likerunningthroughafield 