Monday, November 16, 2020

When "Normal" is "Risky" (Crip Life)

 Late summer, my husband had a lump on his leg (it was nothing serious). I thought it might be a blood clot, though it looked different than when I had mine in 2007. We made an appointment. He was reluctant because he's my only caregiver, and we don't have access to much backup if he ever has to stay in a hospital.

Hoping to assuage his fears, I contacted my insurance team to ask about the protocol of getting home healthcare on short notice. My case manager went through what we could expect... how nothing could be guaranteed. I could be home alone for days before they could find a company willing to assist me. I literally can't live on my own.

After we went around like this for a while I said: "I'm going to be blunt, I know I'd be f*cked."

My case manager replied: "Well Jennifer, that's the risk you take... living like you do."

She then went on in a rush about how good my husband and I are together. But, it couldn't smooth over what she said.

Living like I do... like my behavior is skydiving late at night or drag racing. It's dangerous to not befriend people just so they can help me toilet if my husband is indisposed. It's kayaking down Niagara Falls because my family is unable to fit another crip into the mix.

What other choice do we have? Should I divorce him and become institutionalized so I always have care? Should I put up flyers around my apartment complex for emergency aides? If I want to have as close to a normal life as possible, to have what most people do, I'm engaging in high-risk behavior.

Calling my life "risky" because I choose to live with my husband who, in turn, chooses to be my caregiver seems like a scapegoat. If I roll on the wild side, it's not the responsibility of the insurance to grant me speedy, competent access to care. It almost sounds like they're saying, "It's her own fault if we can't help her immediately". The system has no plan for folks like me... at least not any good ones.

I saw my case manager differently after that.


End note:  I realize scheduling and paperwork take time to process, but there should be a program in place for crips to join that can be activated within hours... like emergency respite care for those without other options.

Monday, November 2, 2020

"Agony and Mass" Published in SoFloPoJo

Yesterday, my poem was published in South Florida Poetry Journal! (Scroll down to read it.) It's a fairly personal piece for me.

My body
builds an empire as a dishonest queen

I've had chronic pain since I can remember. Doctors refuse to give me anything possibly habit-forming, so the medications I'm on don't do much. I've tried everything but marijuana (illegal here) to claw back a fraction of my life. People ask if I'm okay. I lie and say I am because I have no choice. The narrator speaks of lying more than once.

Lies make people more comfortable than the truth. No one wants to listen to everything that's wrong. It becomes a burden to them. It doesn't matter the harm silence can do.

go form another universe from a useless womb

Women are often seen as broodmares, motherhood the one accomplishment we're expected to reach. Disabled people are expected never to have children. Radiation took my ability to have kids (I never wanted genetic kids), but it's an interesting dichotomy... woman and cripple and survivor.

My pale, fat flesh kneaded into shapes it can't sustain,

At the end of the poem, the narrator addresses the pressure and demands of being reshaped. It might be a lover in the midst of seduction being too rough. It might be the reader demanding that the "fat" narrator become someone else.

Monday, October 19, 2020

Halloween Questions

The decorations in my Animal Crossing town.

If you want, you can leave your answers in the comments or put them on your blog.

Best Halloween candy:

Peanut M&Ms... maybe?

Worst Halloween candy:

Jawbreakers and candy corn

Halloween decorating style:

Cute and friendly

Favorite Halloween costume as a kid:

Witch (I still love them)

What is your favorite Halloween special as an adult? What was it when you were a kid?

Disney's Halloween Treat was my go-to special as a kid. My favorite as an adult is probably Mickey's House of Villains (the unofficial successor).

Best Halloween memory:

All-night horror marathons with my brothers, putting our jack-o'-lanterns on the porch the day before Halloween, my father and mother giving us various treats in different masks as we'd walk from the bathroom to the study (to simulate going door-to-door), and Brandon and my first autumn walk.

Favorite Halloween tradition:

Our autumn walk. Brandon and I go down the walking trail by the town lake to see the colorful leaves and then go to the store to buy our holiday candy. I do miss carving pumpkins, though.

Monday, October 5, 2020

Writing News: October Edition

Ever have a blog post written and realize you can't put it up?

It's not the right time for what I had planned. I'm sick of politics.
I'm sick of how we let ourselves be divided and controlled by people
who are supposed to be working for us and wind up being democratic
aristocracy. If we fight the "opposite side", we don't look critically
at our own. The best sleight of hand tricks are often simple.
Writing news:

In late September, I received an acceptance from South Florida Poetry
Journal for my poem "Agony and Mass". The week before that, Dark
Elements accepted four poems to debut (hopefully) this month. Some of
the poems the editor at Dark Elements wants are over seven years old!

My records show my acceptance rate for this year is approximately 20%.
It's never that high. Am I aiming lower (no), getting better (hell
no), or dealing with less competition (probably)?

I only wrote two poems in September... neither very good. It was
another rough month in a string of bad years. I suppose I should be
grateful the words come at all.

Dancing Girl Press' editor wrote me. It sounds Body: Blessed & Bitter
may be out in the world early next year! Of course, no one knows how
different things will be in 2021, but I'll try to plan for it. Maybe
I'll hold a giveaway or something...
How is your productivity these past few months? Has it changed in an
unexpected way?

Monday, September 21, 2020

Resolve (a Poem)

Slipping slowly like
red wine leaking through
fingers that wish to hold it.
Each tiny sip masquerades
as tumbling blood hitting
the floor in dual splatters:
Weakness and temptation

Monday, September 7, 2020

The Fallacy of Objective Reviews

A journalist reviews a video game unfavorably and gets blasted for an "unfair" review. The people disagreeing with her in the comments say she's wrong because one of the main twists was "cool" and not "dull" like she claimed. They call her tasteless and uncultured. One of them even writes the managing editor in the hope that she's fired.
Reviews are opinions. Opinions can be based on fact, but it doesn't magically alter them into truth. I don't know when we stopped teaching this in school, but I feel the world is worse for it (especially in the age of the Internet).

Saying your opinion is factual because it's based on a fact doesn't mean you're factually correct. You may have a well-informed opinion. You might be knowledgeable in a certain subject. No one is a robot, though.

Everyone has their preferences and dislikes. Where some people will tank a review score because they hate excessive profanity, another person won't be bothered by it. You might like the misunderstanding subplot in romance novels, but I absolutely abhor it. A more detailed review might save some people who also hate profanity or the misunderstanding trope a disappointing read, but their agreement also doesn't invalidate someone else's opinion.

The world needs people who have all different tastes, joys, and passions. We need people who can see problems in integrity while others see grace in design. Different views are good because they help keep this world well-rounded. Different backgrounds cultivate different points of view. In other words: It takes all kinds of kinds.
End note:  This is discussing reviews and not bigotry. Thinking you're superior to someone solely based on your skin color, gender, or other variation isn't merely an opinion but another type of (harmful) fallacy.

Monday, August 24, 2020

Stranded Two Miles from Home

"I'm sorry ma'am, but there's nothing I can do. We stop running at two o'clock."

I grip the receiver tighter, as though physical pressure will change the dispatcher's mind. My mask is starting to puff outward with each breath. Brandon stands beside our cart of groceries with a look of worry.

"The driver who dropped us off said he's on duty until four!" I reply.
"He's out of town on another run," the dispatcher says.

I do not ask why the driver is picking people up out of town at 3:15 if they stop at two.

"We would've been done well before now if the bus wasn't an hour late picking us up."
"What? Well, there's no one in town to get you."
"Listen, I'm in a wheelchair with a cart full of groceries two miles from home during a pandemic. It's been storming on and off all day." I look towards where the doors are located as though I can see the fickle July sky from Wal-Mart's service center.

I know I'm not going to get anywhere. As the dispatcher resumes his nothing-I-can-do speech, I slam the phone back into the cradle so I don't scream and draw attention.

Then, I do something I dread and call the accessible van service in our town. They abhor having bags in their vehicles (something they chastised me for in the past). Not sure how they expect crips to go grocery shopping...
When I told the receptionist at the van company I needed a ride home, she said it would be no problem. I mentioned my bags. She became silent and went to check with someone. She came back on the line and said I needed to clear it with my insurance team because it was considered an "emergency trip". I was given a toll-free number for my team. The number wouldn't go through.

At this point, I'm nearly hyperventilating. I call my brother in a panic and ask him to take Brandon home with our food so it doesn't spoil. I wait for their return, and Brandon and I make our way home on foot.

The storms stay away long enough to walk back to our apartment. The sidewalks are rough (and we have to take detours because of construction), so my pain-infused body has compounded agony. But, we make it. I need almost a week to recover.
I email my case manager at the insurance company a couple days after the incident. She says there is no need for extra authorization because I'm already on the books with the accessible van service. I was lied to because they didn't want to take me (probably my bags) home.

I already can't leave my town unless it's for medical appointments due to lack of money, limited transportation, and chronic pain. Now, I'm almost too scared to go anywhere or shop for anything I can't manage from just my wheelchair. Brandon wants to try again late next month, but I'm not so sure (even with assurance from my case manager that it will be different). If this were to happen in winter, we'd have to stay at a hotel near the store because the sidewalks would be impassable in my wheelchair.

End note:  An accessible van costs $30,000-$50,000.