Disability is a mind game

I often hear people comment about my positive attitude and my ability not to be deterred or disheartened by challenges.

But to an extent, people with a congenital disability don’t have a choice.

In my experience, people with congenital physical disabilities who have the capacity to live independently in the world learn early in life that persistent complaining doesn’t change anything, that there are limits to what can be fixed, and that the only way to succeed in an ableist world is to prove that we can contribute and that we are worthy of space.

To do that, to push those messages and to push those behaviors into the world despite whatever pain or physical challenges face us, requires a lot of strength and energy.

So mood and attitude mean everything. Because if my psychological state fades into grouchy or sad or frustrated, my energy drops. My concentration dissipates. And it’s on the subconscious level.

And it takes more energy for a disabled person to navigate the world.

Really.

It does.

For instance, my blind friend Nancy doesn’t necessarily move from point A to point B in a straight line. Often, she is having a tactile interaction with her environment that requires extra steps and physical behaviors whether that be using her white cane, trailing a wall, or following the body movements of a sighted guide. Hell, if she’s with a sighted guide she can’t even determine her own walking speed. She has to match her companion.

But this also applies to me and my cerebral palsy. Because of lower limb spasticity, my leg muscles don’t relax. I have to concentrate on my body, my posture and my movements with every step. This is exhausting.

A 2010 study by Bell and Davies concluded, “that children with mild CP had a lower physical activity level and lower energy requirements than typically developing children. However, during walking the children with CP expended significantly more energy.”

And I honestly believe I that when my “good attitude” shifts into a darker place, I don’t have the energy for that level of focus and my body revolts.

I might be wrong.

“Put me in coach”: A Work Story

If you stop by here often, you know that last Wednesday I spoke with some more people at work about my disability and that whole day I was given my preferred/easier for me fixes.

I achieved 96% for the day, folding what are called refixes, fixes that had problems that got rejected and needed to go back to be fixed. So the fix needs a fix.

When they return from the refix department, they are boxed in the box they were originally slated to ship in and they are on top of the cart instead of on the shelves.

I really struggle to reach shelves seven and eight so this is a huge help.

And since neither the physiatrist nor my neurologist have responded to my recent concerns about my mobility and my coordination, I have not asked for official work accommodations yet.

Yesterday was the first day of my work week— I did something like 89% in Freestyle, folding clothes and shipping packages for the first 8+ hours of my shift. At 3:30 p.m., I moved over to returns processing where I might have hit 75%.

Today was Monday, which means the warehouse was firing on all cylinders. I was in my home department, and I might have gotten 40 refixes today. So 3/4 of my work involved a lot of bending, crouching and twisting.

My back did okay, but my right quad and right foot burned most of the day and by 4 p.m., my hip hurt. It feels like it’s pointing directly behind me like a tail.

Despite this, I was in the neighborhood of 99%.

And at 4:25 p.m., my process lead asked me to go style card— calling me his “emergency style carder.” I would prefer the phrase “back-up.”

But it gave me a chance to move around and improve my hip functionality so I am grateful.

It made me feel like an athlete waiting on the bench, which then got the song “Centerfield” stuck in my head as I worked.

“Put me in coach, I’m ready to play…”

I would have made the reference to my process lead, but I think he’s too young to get the reference. But, the teenager tells me if he’s seen The Sandlot, he’ll know the song.

If you need to hear the song, here’s a YouTube link.

Marvel update: Two Guardians and Ulltron

The teenager and I are working our way through the Marvel Comics Universe, watching the film in what is reportedly the order of events.

It certainly gives me more depth to Tony Stark, as the Avenger movies seem to hinge a lot on him.

The teenager adores Hawkeye.

And we both enjoy Joss Whedon’s and James Gunn’s humor in the scripts.

But these three films, though completely occupying space as Marvel movies do, with crazy action scenes, internal bickering and often violence among the team, tenseness and humor, fell flat for me.

Why?

Because these movies are based on comic books— comic books from an age where the science fiction of it was wild and the world still had so much unknown. Many of these characters/heroes predate space travel.

Captain America eludes to that when he says he misses the days when he was the biggest monster science had made, or something like that.

So to believe that Hawkeye has a family hidden on a farm that no one knows about in the 21st century seems unbelievable to me, primarily because I have to ask where those kids go to school.

And the larger the cast, the bigger the threat has to be, and the more the story is less about people and more about danger. The solutions in many of these scripts make no sense and the amount of civilian destruction is insane.

And to me, a Generation Xer, Age of Ulltron recreates September 11 (specifically the scene where Tony Stark asks how quickly he can buy a building and throws the Hulk into it, causing its implosion and a giant plume of dust through a major though fictional city). Also, the very idea that Ulltron infiltrates the Internet and represents artificial intelligence gone rogue, is very pertinent for the time period but has lingering air of the late 1990s panic that the opposite would happen—computers/operating systems weren’t smart enough to survive the Y2K date change.

In the Guardians series, the plot just never develops in proportion to the characters. We have these quirky misfit characters that have flimsy plots, and themes that don’t really go beyond their two dimensional comic book origins.

And this business with the infinity stones better have a satisfying conclusion. The idea that these mysterious power sources may all have some sort of intelligence/life map coded within them is fascinating.

Does each stone have part of the blue print to create the next incarnation of the universe? Or do the stones if reunited serve as a self-destruct mechanism?

Anyway, Ant-Man is next.

And I’m intrigued. Can we really trust Vision merely because he can yield Thor’s hammer? Or can he hold the hammer because he was forged by the hammer?

Previous Marvel post

Iron Man 3

Remaining Marvel posts (start here?)

does size matter?

Thursdays are my catch up days for work at my little publishing company, Parisian Phoenix. Today, the art director surprised me with this blog post about paperback book size.

Despite being concerned about what the small size will do to the cost of the book, smaller book means more pages, I am legitimately super excited that we are experimenting with reviving the classic pocket guilty paperback.

gfhendricks's avatarParisian Phoenix Publishing

Manipulations is 6×9, whereas The Little Prince is the classic 4×7

I’m old. I’ll admit that. Growing up in South Bethlehem we walked to the library at Webster and 4th street for books. Later, when we were older, we’d head over the “New Street” bridge and go to the big library. Or the AAUW book sale on bag day. I can still pack a paper bag with books and not have it rip! Our parents would have been broke if we didn’t.

The library mostly had hardback books. They were big and heavy carrying them the mile and a half home. The huge joy came when we were allowed to take our carefully saved money and go “up”-town to the Moravian Book Store (“Down”-town was 3rd Street. Now it’s all downtown.) Or even better when we got to go to the Waldenbooks in the Whitehall Mall in the late 60s.

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Vulnerability in the workplace and its role in building teams

Grammar police— this piece is full of tense shifts. I’m tired. Deal with it.

We’ve all had that corny job that encourages team building exercises and how uncomfortable that can be when they are telling you to trust someone that frankly you don’t trust.

It’s hard to be vulnerable with new people and new environments and this can lead to us seeming aloof or feeling alienated or shunned by the group.

Yesterday I had a painful day at work, and I’m still struggling emotionally with my father’s death, and compounding all of that is the fact that my sleep has not been that restful.

So imagine me… as the alarm goes off at 4:45 a.m., struggling to stretch out my stiff, spastic lower body and my aching spine. I went to the other side of my room to check on the cats’ food and had to use the vacuum cleaner as a cane.

I stumbled to the shower and afterwards managed to get my bra, shirt and panties on but saved the socks and pants for after coffee.

I prepare my coffee directly into my to-go mug, a FURR fundraiser item that keeps my coffee warm until my first break almost four hours later and lukewarm until lunch.

I email my neurologist asking for help getting a physiatrist appointment. I still wonder if I should be going to work at all. I tell myself if I really can’t function, I’ll call the chiropractor at 9 a.m. and see if I can get an appointment.

I decide it’s time to put on my pants.

But then my pants don’t button.

And I’m not talking about “these are snug,” these are all out as if I were trying to wear a child’s pants. Too much Taco Bell last night.

The teenager did a white wash so there is a pair of sweatpants in the kitchen. I put them on and wrestled with my socks.

I go to get my shoes. The teenager has piled the garbage on top of them. I find other shoes.

I then needed to decide between the pizza I can’t even remember when I ordered it and the pancakes from Friday for lunch.

I grabbed both.

Once at work, they have me assigned to line 5, table 8a. Now, they have the tables on line 5 labeled incorrectly. Somehow, they go 0, 1a, 2a, 3a, 5a, 8a, 4a, 6a, 7a. Someone is already working on the ninth table, which is labeled seven. So just to be clear, I ask my supervisor.

“I am to go to the sixth table, which would if you were going by the labels at the previous lines would be table five, because the actual labels are out of order?”

He looked up. “Oh, yeah. They are.”

But then someone is also at the sixth table which is labeled 8a. The lead on the line does the research and this interloper belongs on an entirely different line, but somehow ends up a few stations ahead of me.

I have to organize the station because it was set up for Freestyle not QC.

And then I see the person on line 4b, across the aisle from me, get an entire rack of refixes. That’s about three hours worth of work.

I went back to the lead who I approached about my interloper. I explained I had a disability and I was having a bad physical and emotional day and, let me paraphrase, I said I wanted refixes, too.

I got them.

The day shift support people and my normally favorite support person brought me refixes all day.

And I learned more about my favorite support person’s family history. And we discussed philosophy and gave each other a pep talk. And the day shift support person was also super supportive.

And it made me feel physically and emotionally better to share the weight of my burdens. I made 98%. Which is amazing — and I haven’t seen numbers that high since October.

My lead was pleased.

And I felt lighter.

Processing childhood trauma

Trigger warning— I’m not sure exactly where this post will go but it will discuss sexual misconduct between an adult and a child and it will touch on alcoholism.

I know some people in my family may be uncomfortable with what I am about to write — because what happens in our private lives should remain private. And I agree with that, and I prefer not to air private matters in a public forum. As a writer, I want my public space to reflect a more professional persona.

But I also know I “check a lot of boxes” for struggles and realities that may not be apparent and that other people share. And together we have strength. Commonality.

So here goes.

But please, as I’ve said in other posts that mention times in the past that include other people and the actions of other people, remember that this is my story, my experience and my feelings.

Whatever I write in this space, because I’m not even sure where it will go, I am merely trying to offer a glimpse into my grief and how that is triggering— and I hate that word ‘triggering’ — my past trauma.

And especially when people are trying to do nice things for you, it feels extra garbage-y to have your mind implode.

Gene Kelly prompted me to write this blog entry. Spotify provided me with a jazz mix that included “Singing in the Rain.” And “Singing in the Rain” left me analyzing the issues that have plagued me since childhood that overcame me this weekend.

“Singing in the Rain.” You know… “Singing in the Rain.”

I learned to whistle in the bar. There was a man, I’m not sure who it was, who used to try and get me to whistle “Singing in the Rain.” I’m not sure which bar, maybe The Red Geranium, which is also where my mom served as the afternoon bartender for a while and where the owner’s grandson almost drowned me one summer day.

I don’t even remember who taught me to whistle.

I went to the bar with my mother because my father usually stopped at a bar after work. And he often didn’t come home until he spent all his money or the bar closed. So, my mom and I would go looking for him.

Each bar had a highlight. One of my school friends hung out at Delaware House waiting for her mom. But Delaware House burned down in 1986— I think my Dad might have been there that night— and all I remember is purple-hued lighting and one time someone vomited on the sidewalk right outside the door while I was standing there.

In my memory, the fire took out my grandfather’s favorite clothing store (not true according to newspaper records)— Effross’s— though thinking harder I don’t known if that recollection is correct. Apparently, Mr. Effross died in November. My grandfather bought all his Levi’s from Mr. Effross.

My grandfather chewed Jucyfruit, enjoyed the occasional trip to Kmart, smoked Parliaments and listened to Jim Reeves. He would hand me an empty coffee can and tell me he’d pay me a penny for every cigarette butt I could find in our yard.

At one point, I spent all the time I could with him. My parents said we had moved to Pennsylvania to be closer to him and my grandmother, moving into the trailer right besides my grandparents in the trailer park.

My mother befriended an elderly man named James Wicks who lived in a trailer on the other side of us. He had no family, so my mother cared for him until his death. And we inherited his tan Chevy Citation.

On some days, while my mom went to see Wicky, I would go see my Aunt Sharon and my grandpa. I spent a lot of time with them as they served as my babysitter when my mom and dad would go for motorcycle rides or when my parents planned to go drinking.

They had cable. We did not. So if I was lucky, I might get to watch The Addams Family. My grandfather liked Highway to Heaven and Knight Rider.

At one point, my uncle had moved to another state. I seem to think I was 10, because I tend to think everything bad that happened to me happened around that time. My aunt had gone to stay with them. She and my grandpa had plans to move up there.

If I can trust my memory, I was wearing a pastel striped romper, with shorts. [Trigger warning] He asked me to come sit on his lap, so I did. He started rubbing my inner thighs. I remember his hands, and I remember how close they were getting to my romper.

There were a few other times where he touched me inappropriately in similar fashion, so I stopped sitting in his lap.

And eventually I avoided going to his house when no one else was home.

I told no one.

But then, a while later, and I don’t know if Aunt Sharon was home or not, I think she was… We ordered a pizza. My grandfather asked if I wanted to go with him to pick it up. I said yes, probably because I wanted a “jungle juice” and to play the Pac Man arcade game.

The pizza place was probably less than two miles away.

But he didn’t go to the pizza place.

He turned down a side road. And then to a dirt road. The night was dark. We had no street lights. I knew where we were, but I also knew it was the middle of nowhere.

He patted the seat beside him. It was a big old vinyl bench seat. He told me to come over and kiss him. So, as a granddaughter would, I kissed his cheek.

He told me no. That’s not how you kiss. And then his tongue was in my mouth. Deep in my mouth. Invading my mouth.

I was terrified.

I don’t remember what I did to get away. But we did go get the pizza.

I didn’t tell my mom until high school. I just avoided my grandfather. But my mom was going to ask him to drive me home from play rehearsal. And I knew I couldn’t be alone with him.

I didn’t tell my dad until I was in college. My grandfather and I had a tumultuous relationship because I called him a “selfish old bastard.” Yeah, no one knew the real reason why I said that. But my grandfather never spoke to me again.

And that hurt my dad.

One day he got drunk and asked me point blank, “what did you grandfather ever do to you, molest you or something?”

“Yeah, Dad,” I said. “Actually he did.”

And I will remember the shock on his face forever.

My father’s recent death has forced me to spend more time in memories like these than I usually allow.

I tell this story because I know others have similar stories. I tell this story because in the wake of my father’s death, I think of my grandfather more. I tell this story because yesterday morning I wept while driving to work at 5:45 a.m. because I use a country road that, in that moment, reminded me of that country road.

These stories are invisible. People don’t tell these stories. Skeletons belong in closets.

But I’m tired of these stories haunting me, circling my own head, so I’m going to leave this here.

I spent a good deal of my youth afraid of what my grandfather might do. To me.

My first kiss came from my grandfather. I didn’t even know the difference between boys and girls.

I still freak out if I have to kiss a man.

I’m grateful I had the wisdom to avoid my grandfather.

My grandfather is dead.

My father is dead. His brother is dead.

Aunt Sharon is still with us, but she has an intellectual disability that renders her an eternal child.

So this story can’t hurt any of them.

But maybe it can free me.

Because those memories still ignite fear in me.

Saturday morning— gym, meal plan & prep

The teenager and I headed to the gym this morning for the first time in a while. I did a gentle lower body workout to stretch everything and get my body rolling after the chiropractic adjusted just about everything yesterday. Even my ears.

The teenager wanted to find her max weights for powerlifting— which seem to be 100 pounds on bench and at least 155 on squats.

Tomorrow I head back to work after a weekend of falls and rest.

So that means meal planning and meal prep.

Our Hungryroot box came yesterday and since the app showed they didn’t have much product, I focused our box on mostly proteins.

With leftovers from last week’s box, the new box and pantry items I had in the house, I made this:

  • Chickpea rotini and beef meatballs with marinara and superfood tomato sauce.
  • Lemon pesto broccoli
  • Homemade pesto hummus
  • Omelet (with green olives)
  • Tempeh bacon
  • Brown bread

We also have leftover pizza and pancakes.

So for breakfast after the gym, the teenager had omelet with mozzarella and tempeh bacon on organic, sprouted everything bagels. I went vegan and had my bagel with my hummus and tempeh bacon.

And last night, the teenager and I went to my stepmom’s for Christmas and I got my hand bag. I have been admiring this Urban Expressions work tote since I started at Stitch Fix. I have one now.

Do until you can’t do

If you’re a regular reader here, you may recall I had a fall last week, at the hospital, when I went for a CT scan of my brain. If you missed that episode, you can read about it here

What I didn’t mention is that I also took a second rather more dramatic fall in my kitchen that same day.

I’m rather sure Dr. Nicole Jensen of Back in Line Chiropractic and Wellness Center cringed as I told her this story, and the story about my knee totally facing the wrong way.

This prompted her to adjust my ears— apparently I had some left ear congestion. The adjustment was a rather uncomfortable yank in my earlobes.

Anyway, she mentioned that I tend to “just keep doing until I can’t do no more” which is 100% true and something I learned from both my parents. They both have incredible work ethics.

On Sunday at work in the Stitch Fix Bizzy Hizzy, I believe I hit 96% in packing Freestyle orders. Yesterday, we got shipped to women’s returns processing where I struggled in an attempt to hit 70%. Today I hit about 85% in my home department (QC) despite incredible amounts of pain.

My feet were burning. My joints a little achy. My right quad screaming. A slight nosebleed. And both sides of my hips felt wrong. So I checked walking asymmetry in iHealth.

Definitely periodic issues since yesterday afternoon.

If I’m still uncomfortable and having trouble moving in the morning, I’ll go to work and call the chiropractor when she opens.

Marvel update: some more Thor, some more Captain and some one shots

This blog entry may not be as thorough as some of my other Marvel reviews as the movies have struck me as blah lately, too reliant on special effects and fight scenes with the occasional plot point and/or humor to glue it together.

I found Thor Dark World to be overstocked with fantasy and ignorant of any attachment to reality. And perhaps the best part of the movie is when Erik Selvig has gone crazy enough to refuse to wear pants, a great piece of connective tissue to the first Avengers movie.

And the Captain America Winter Soldier proved to be better, but didn’t really hold my interest. The idea — spoiler alert — that Hydra took root within S.H.I.E.L.D. is a fantastic one, and much of the plot pleased me, but again, too many fights, special effects and showing off of technology that doesn’t exist.

Today we were scheduled to watch Guardians of the Galaxy, and we are, but the teenager discovered two Marvel one shots: Agent Carter and one about the Ten Rings and the Mandarin.

The one involving Trevor Slattery in prison provided some good information about the background of The Mandarin from the Iron Man franchise.

But the best part of all of this was Agent Carter. We learn that Peggy, Captain America’s crush, had to force her way into active duty and proved to be a insubordinate bad-ass.

Guardians of the Galaxy is one of the teenager’s favorites. I don’t remember being impressed the first time I saw it, so here goes…

I fell down the stairs at the hospital

It’s 7:53 a.m.

A little less than an hour ago I left home to walk to the hospital for my head CT.

It was raining, with flurries mixed in, and I didn’t think to bring a hat, a hood or an umbrella. I don’t mind getting damp, and the moisture helps tame my curls.

The walk to the hospital was uneventful. I was confused where to find the radiology department so I looked up the address: 250 S. 21st Street.

Now, I always get 21st Street and 22nd Street mixed up in my head. So to be sure imaging wasn’t in a separate building, I walked down to 21st Street.

That was mistake number one.

Imaging and radiology is in the main hospital. The main hospital was built over 21st Street, so to get to the entrance I had to backtrack, and go up to hills will black ice, to 19th Street.

I walked in, waited in line, and was politely told I needed to go outside, to the left and to the left again.

In other words, imaging was next to the Emergency Room which was where I started backtracking.

Bit extra steps are good. Let’s stay positive.

I leave, go down the concrete stairs between the hospital and the parking garage, trying to confirm where I need to go. I suspected radiology was next to the ER but I had just been told “left and left again” and I get my left and right mixed up, especially when I’m nervous.

And now I’m nervous and hurrying. In winter weather.

I forgot the stairs by the hospital are built like speed bumps… one step… walk more than a side walk square… a staircase of about five steps… more single steps. All painters with yellow stripes.

I missed one. I did a lovely corkscrew spin and bounced along the sidewalk.

I got up, kept walking, fighting tears and trying not to hyperventilate.

Because physically I am not in my best shape today. (More detail here.)

I walk into radiology and I tell the admissions clerk, “I have a CT at 7:30 and I just fell down the stairs coming from the main registration desk, I’m fine but I’m a little shaken.”

She, of course, wanted to know if I needed to be examined. I said no.

Then she assumed it was icy. I said, “no, I have cerebral palsy and I just missed the step and once I go down I can’t stop it.”

Her next thought was, “why didn’t they have someone bring you through the hospital. Why did they make you go outside?”

I replied, “I just did what they told me.”

The next fun part of the journey was once again I was told that Medicaid denied my procedure. I told them I qualified for Medicaid for one month in 2020 and they have not paid for anything since that month.

“But you qualify,” they insisted. “Or it wouldn’t be there.”

Just let me have my CT scan, especially now that I’ve hurt myself.

They take me back, and I thought maybe I should go to the restroom and wash my scraped hands but the tech assures me it will be five minutes. So I figure it can wait.

The scan was very cool. I have never had a CT scan or an MRI. They stuck me in the tube and I noticed the sleek black ring inside the tube that had a bright ball in it, like a star. I was told to be still so I closed my eyes.

The machine roared like my clothing dryer, the table shifted, and I was done.

I then once again thought about the restroom but it was 7:30 and my teenager needed to be at work at 8, and I thought maybe I could catch her.

But the sidewalks were slick and now the snow was coming down. It was coating everything. So I didn’t get home in time to see her.

But, between the cold, my nerves, and the fall, I suddenly realized I needed to urinate. And as the greatest insult to my pride today, I started to pee myself five feet from the toilet.

When I removed my pants, and realized the “accident” wasn’t as bad as it felt, I saw my knee was now bleeding. I have a sore spot on my left thigh up by the hip, two scraped knees, two scraped off palms, a couple scraped knuckles and a sore spot on my left forearm.

My trainer and I agreed that maybe the gym isn’t a good idea today.

And I cracked the screen protector on my phone.

I really, really hope that when the neurologist calls to talk about my CT scan that she can needle the physiatrist about seeing me, because I need help.

I’m scared. And I need to understand what this body can do and what it can’t.