Skip to main content

A PERFECTly ghastly STORM

I looked up Huntington's Disease. Wow!

If I thought I had it bad!!?!! Huntington's is like ALS, Alzheimer's, and Schizophrenia altogether. I cannot imagine, and I don't have to. I see it everyday. (or, I think I do.) My neighbor here at "the home" seems to have it. I say "seems" because nobody will share her diagnosis with me, rightly so, due to HIPPA laws. But, you cannot hide symptoms.

Tiny, bird-like in appearance, translucent pale skin, luminous dark eyes and tresses, and torturous, stick-like limbs.  She evokes the protective mama bear in caregivers and patients alike. I tried making friends when I arrived to no avail. She'd look down, ignoring me and hyperfocusing on her activity, usually being fed. I was dismayed see her spend days in a darkened room despite a prime sunny location. Not unlike me, irregular sleep\wake cycling; must have others perform all activities of daily living; very limited ability to communicate.

She swings from agitation to calm, but mostly agitated. Hand-held bells accompany her wherever she goes, and she goes, like an Eveready bunny scooting on her bom bom. Across a sea of padded mats, she scoots or gingerly totters and falls, usually seeking food, caregiver companionship, or pain relief. How they discern what she wants or needs, I daren't guess.

I recognize her struggles, we share so many symptoms and struggles. She chokes on her food, doesn't have control over her limbs, has no command over her life; she's terminal. We are terminal.

I wonder which is worse--to have full cognition as I become a prisoner in my body with ALS or to also lose control of one's faculties, as is happening with her with Huntington's?
Labels:
Location: 2720 E Madison St, Seattle, WA 98112, USA

Comments

Post a Comment

Popular posts from this blog

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...
Post a Comment
Read more

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 ...
4 comments
Read more

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...
3 comments
Read more