Skip to main content

Struggle

I struggle. In many ways, I struggle. I struggle to be heard--to be understood as the muscles atrophy in my mouth, tongue, and throat, such is the reality of dysphagia. I struggle to move food from one side to the other within the confines of my mouth. I struggle to chew, to swallow, to nourish my body in a natural manner.

I struggle to keep positive in the face of the losing battle that is ALS at this point in time. I struggle to graciously accept the fact that the majority of my friends and family don't understand this disease and keep their distance from me.

I struggle to be kind to caregivers who don't know how to care for me -nor follow my care plan. I struggle to stay awake during the day. I struggle to be patient when I get yet another person unfamiliar with my eating/feeding routine.

I struggle to pray and meditate each day. I struggle to dream up topics for my blog. I struggle to keep out of regret, remorse, and resentments. I struggle with decisions I've made to keep certain people out of my life.
Labels:
Location: 2720 E Madison St, Seattle, WA 98112, USA

Comments

Post a Comment

Popular posts from this blog

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

Lashing Out

Fed up. Sick of hearing, "I'm sorry."  Apologies don't erase the pain you inflict on me. You pull my pubic hair. Your nitrile gloves pull the hair from my head. Not once in a while but day in and day out. You turn me in a manner that suits you rather than in a manner that doesn't stress my body. Why won't you use the pad and sheet to turn me as one unit? Instead, you allow my body to twist as you hold me one-handed. How good you are at your job. What part of "my muscles are dying" don't you understand?
Post a Comment
Read more

Fall

Orange, gold, rust, burnt sienna, ochre, raw umber; the riot of fall colors, in the trees and at our booted feet; a drive in the countryside; the taste of hot apple cider on my lips; the satisfaction of a truckload of firewood we gathered and cut ourselves; elk herds on the move; hearty stews, savory soup, crusty whole-grain bread, pumpkin and gingerbread spice lattes; these are the memories I tap into the most this time of year. Cabela's fliers in the mailbox; Carhart's camo-clad hunters swarm outlying areas; mushroom garthering; huckleberry picking; logger burgers; forest service roads; cheese sandwiches on the woodstove; warm quilts, cool sheets, and flannel nightgowns; cold butt, warm heart.  Immensely grateful to have the well of memories to draw upon.
Post a Comment
Read more