Gone

The machines are gone. Your things are packed up and gone. The urn has gone down the aisle and the friends who followed, gone. You said to me "I'm not just giving up." and cried. Even at the end we worry about being misread. I miss knowing that you're in this world with your sarcastic … Continue reading Gone

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Big Ten Inch

Packing for an overnight stay anywhere is stupid. You always forget something and yet bring along seventy things you don't need like a ball of your cat's fur and an 8x10 of your dog because you might miss him. After Xavier got killed, my sisters 16-year-old big tiger tomcat Moe (aka Momo, Bro-Moe-No-HoMo, MOElassass, MOEzambique, … Continue reading Big Ten Inch

A Different Kind of Doctor

Most doctor's go into medicine for good reasons. The science of it, the functional art of the science, helping people, a sincere desire to be in the heart of mankind. Some, yes, it was, at one time, prestige. I can say this because I listen very well. I watch very closely. I'm the fly on … Continue reading A Different Kind of Doctor

Three Out of Nine Ain’t Bad

https://youtu.be/q8JA9Qs2Mho Three out of nine appointments made since yesterday. Not bad considering I'd rather walk down Main Street wearing a dress of live parana than do this. I feel like throwing up when I think about it. I started out small with the eye doctors for new glasses. Getting rid of the bifocals is number … Continue reading Three Out of Nine Ain’t Bad

Give Up The Funk

https://youtu.be/gBWH3OWfT2Y Give Up The Funk Parliament   Be careful what you pray for they say and it's so witty and true. If you pray for patience, you'll be given situations that require it. But if you persevere... Years. Years have been spent looking for answers. Wrong turns, dead ends, accidents, bear encounters and killer clowns … Continue reading Give Up The Funk

I’m Home

https://youtu.be/Q-fJrtCWwrw   "I believe you." "Oh, without a doubt!" "There is a type of trauma that comes with being a chronically ill patient." "I don't know." These have been three of some of the validating and kindest words spoken to me by doctor's. "I need Christal time." "I love you." "Do you need anything?" "Where … Continue reading I’m Home

Sculpting Out Defining Line

It's bothered me my whole life this feeling of being odd. The oddness now I understand is labeled as neurologically atypical but that bothers me, too. It feels like it's "them and us". Sitting here tonight sculpting, I realized the idea I've tried to express in my head was a scene I'd need to translate … Continue reading Sculpting Out Defining Line

Saying Yes To Love

"If you're allergic to anything, you're allergic to New Jersey." That was S.P. and S.'s pediatrician way back when. She was right. It's 3:42 a.m. and I've been up for an hour taking in my artesian blend of medications and care for days of the specific combination of allergies, moderate pain, seizures, low sleep and … Continue reading Saying Yes To Love

Wisdom in Parables, Addages and Stories

A stitch in time saves nine. Vasalisa the Wise and Baba Yaga The Three Billy Goats Gruff Jacob wrestling the angel.  Old adages, folk stories, even fairy tales were parables, psycho-social advice or direction. "Don't even try." she said. "Stick to a topic you can both land on even if it's only the weather." I … Continue reading Wisdom in Parables, Addages and Stories

Heavy Breathing

Starting back some time mid-February I got sick. This wasn't my usual chronic illness, this was acute. It went from flu-like to worse quickly. I put myself in steroids to breathe but handled it all wrong. Afraid they would put me in the hospital and the house would go to Hell in a handbasket, bills wouldn't … Continue reading Heavy Breathing

So You Wanna’ Be Inspirational

People don't see that the person who is wry, sardonic or frustrated aren't addicted to looking at the dark side but people who hope over and over again even when they don't want to and that's where communication breaks down. This practice of blowing sunshine up peoples ass as a form of lecturing, as if … Continue reading So You Wanna’ Be Inspirational

Whoosh-Clunk

The sounds in a hospital are distinct and frightening in their measured "Sh, everything is fine, everything is under control." muffled dings and beeps. What is supposed to soothe becomes like the carnival sounds in some horrible medical fun house where the fear that lurks and jumps are bacterium, respiration numbers, blood counts and assorted je … Continue reading Whoosh-Clunk

Ableism Isn’t Nonviolent-You’re Killing Us

Crutches & Spice

Daniel Harris | Mirror UK
I wish I could come up with some clever reaction to the recent deaths of disabled peoples in the last few months. It would make things easier. Instead, I’m going to make your lives a bit more difficult and ask one simple question: how valuable are disabled lives when they’re not inspirational?I once described ableism in terms and stereotypes everyone could understand, but I seem to have been talking to a wall. So, I’ll be blunt. You, as an able-bodied person, are conditioned to watching people like me die over and over again and not to question a thing. You feed yourselves story lines where disabled people are used for their inspirational capital and discarded once the protagonist has gotten where they are meant to be in life. You describe our suicides as freeing and peaceful not even realizing that same rationale was used…

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Shouting Into The Wind

Idioms exist for reasons. Humans are creative beings. We convey thought, ideas, emotions in ways a link of words may not have originally been intended to be used. We hack and repurpose things in every area of life to come up with bigger, better, more purposeful ways of doing things. Standing on the edge of … Continue reading Shouting Into The Wind

I Didn’t Sign On For This

Nine years ago when they started finding things in my body it was supposed to be a journey to find what was wrong, a mountain to climb, then back to life with new found information. It hasn't turned out that way. Wrestling with an unexpected disappointment, changes to our best-laid plans, can be a bigger … Continue reading I Didn’t Sign On For This

Stay Afraid, Lonely and Unsure

This impact statement will be read December 1, 2016. I've used initials, though E. said to use her name. She wants people to know what victims live with and what they must go through to get any sense of justice. The sexual predator has almost more rights than a victim so until I am certain that … Continue reading Stay Afraid, Lonely and Unsure

Dumping Sugar and Adding Self Preservation

Eleven a.m. and waiting for my daily nausea to pass. Usually, some hot, black coffee, at most coffee with lactose-free milk, will settle things enough for medicines to be tolerated. Last night after eating one Drumstick ice cream cone, then a pudding cup, followed by a, eight ounce cup of prepared iced coffee, I tossed … Continue reading Dumping Sugar and Adding Self Preservation

Beating People With Sunshine

Riding the 552 yesterday and thinking, like I often do because I'm usually next to someone smelly and it's my only escape, I realized my circles are mostly sick people or people with sick family members now. I'm very lucky to have these people in my life, even if only online. I've learned about myself, … Continue reading Beating People With Sunshine

The Good in Recognizing Your Cognitive Dissonance

I haven't written in a long time. Tired and completely unsure of how to handle this place internally and in my life, I've floated and just worked on whatever came close to me. A whole fucking lot came close to me. I'm ready to talk some.   PSYCHOLOGY noun: cognitive dissonance the state of having … Continue reading The Good in Recognizing Your Cognitive Dissonance

Perfume on the Wind

Gardenias are so cliché they are almost forgotten. Their perfume, rich, almost too sweet if concentrated or captured outside of nature, is perfectly balanced when caught on the wind off the branches of its bush. The flowers are much simpler than I remember, actually closer to a wild rose. They need just so much sunlight, … Continue reading Perfume on the Wind

It’s Not Fair, It’s Too Soon, But It’s Not Too Late

I didn't know the kid, this was the first time reading his full story and yet I was crying over his death. Zac Pogliano wasn't a superstar, he struggled to get through his life with schizophrenia and his mother walked right alongside him. But I knew him instinctively because he is one of my people. … Continue reading It’s Not Fair, It’s Too Soon, But It’s Not Too Late

Malfunctioning Dysfunctional Funky Monkey

Stacking low-calorie frozen dinners in the freezer like some slightly mis-measured Tetris game, all I can think is "How many chemicals are in this shit?" and about whether the end justifies the means in this situation. Convincing myself it does, I continue to stack the meals into the four-foot by two foot tundra. They keep … Continue reading Malfunctioning Dysfunctional Funky Monkey

Guidance, Aspirin, Glands and Approval

Dr. S. stretched across the exam room counter-desk, leaning long on his arm, smiling with his eyes closed towards the ceiling as he talked about his wife and how he seemed to always be in trouble now. He loves her and it shows in every smile that slips out when he mentions her or his … Continue reading Guidance, Aspirin, Glands and Approval

The Weight of A Thousand Stones

Fighting to become healthy is worth it whether it's to get away from dangerous, lying, life-sucking vampire-like people or the same kind of physical illnesses. Whether others believe, agree, refuse to see the plain and obvious evidence to the danger and truth of either doesn't matter. What matters is escape and survival. Some will never see the light or believe and that's okay. It isn't about them, it's about you, it's about us.