A Wound Worse Than Physical

I have noticed that as I have become less able to communicate, the more acceptable it is to assume my mental incapacity. Even though I reside in a prestigious nursing facility, I am falling victim to the notion that I am not reasonable or prone to fits of temper for "no reason at all". These prejudices, that is what they are, are harmful to the ALS patient. They leave us grievously wounded, susceptible to physical harms, like pneumonia, choking, death, etc; as well as mental harm, like grief, despair, depression, and death of the spirit.

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Prayer

Occasionally, we are seized with a rebellion so sickening that we simply won't pray. When these things happen we must not think too ill of ourselves. We should simply resume prayer as soon as we can, doing what we know to be good for us. -- TWELVE STEPS AND TWELVE TRADITIONS, page 105 Gee, I could have saved myself years of self-reproach by taking it easy on myself. "Try" as I might, I never could make prayer, in the traditional sense, a daily occurrence for stretches longer than a month. I had good intentions but inevitably, I'd be running late and forget. Or worse, I'd get a big, fat bout of attitude about not getting my wishes (the permanent position at the Gates Foundation, being fired from my last job when my health deteriorated, the cancellation of my Panama Canal cruise, and the various abandonments I experienced following my ALS diagnosis) and off I'd go, cursing my Higher Power, turning my back, isolating, and wishing I were dead (actually, I wa...

Gratitude For Reading

People are reading my blog! I cannot express my gratitude enough. My heart is soaring! Before I got ALS, it was a minor interest amongst many varied interests. Today, I am unable to physically participate in many of my prior interests, like motorcycling, photography, knitting and other handicrafts, hiking, traveling, painting, drawing, going to the gym, working in the garden, doing housework, canning, and cooking gourmet or ethnic foods. Therefore, I am more focused on the ones that are most accessible to me, such as reading via audiobook or e-book, television, movies, meditation, music appreciation, and writing. Like the blind man who's sense of hearing and smell is heightened, I'd like to think my crippled body has made me more attuned to things more on the spiritual and sensual level. Initially, when some members of my family read my blog, they chose to focus on what they viewed as negative. The feedback I got was harsh and personally critical. .I was told that I was ...

I Remember...

I remember catching fireflies, putting them in a jar, as a girl of five. I picked pears off a tree that overhung an alleyway on my route home from school, then enjoyed the forbidden fruit. .I had a golden cat who chased a gray mouse through our living room sending my mother, 3-year old sister, and me screaming atop the sofa and chairs. We lived in a farmhouse and I watched Romper Room. A daddy longlegs skittered across my dirty kid legs as I teeter-tottered on a broken kitchen chair back. I played grocery store and laid out a bedroll for group nap time in preschool. We lived in an apartment attached to a bakery. My maternal grandparents visited and a photo was snapped. Grandma held Dawn and Grandpa held me. I held Grandpa's chin. Walking through the back of the flour-caked kitchen, I saw scrumptious pastries and colorful toys stuck in the cupcakes with my hungry kids eyes. We lived in a two-story apartment building next door to a large farmer's field. That field was my...

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