Daily Battles In The Life Of An 'Invalid' Neuropathy Sufferer

Today's post from medium.com/disability-acts (see link below) is a breath of fresh air in the normally depressing world of neuropathy articles and approaches the subject by means of a personal story, full of humour and uncomfortable truths. Most of you won't have reached the stage where you need a mobility scooter (or similar) and hopefully you never will. However, this story should make you aware of some of the difficulties you may face in daily life and prepare you for some of the realities that go along with being seen as an 'invalid'. This is a recommended read for everyone with or without neuropathy because...there but for the grace of god...!
 

To Get to the Other Side
A Story 
Cait Gordon Aug 24 2018

Writer of space opera and short stories. Editor for indie authors. Creator of the Spoonie Authors Network.
 
Rollators parked in a row on a brick-paved patio.

Author’s note: This story is highly inspired by my experiences and feelings. I like to tell people it’s 95% true.

“Body is disabled. Irish works perfectly,” my T-shirt screams in bold letters. That’s pretty much all you have to know about my personality. In the past seven years, my body has thrust my neuropathy from invisible to visible, which necessitated my buying Noola the Rollator. Yes, that’s her name. She’s my little black hot-rod with flame decals, headlights, the most obnoxious bell known to humankind, and cool rear reflector tape. Noola’s my wheels. I only got her a few months ago, and I feel prouder than a teen with their own car.

The first few weeks I took her out for a spin, I noticed the people in my suburban neighbourhood seemed super friendly — after almost 18 years of our living here. Wow, so many smiles. Did someone get a new tax break or something?

However, when the grins popped up outside my ’hood, I realized a possible truth. People were smiling at me most probably because they felt they’d come across as douchebags if they didn’t. After all, I’m a crip.

I still cringe a little at the word “crip,” but mostly I love it. There is something about repossessing a slur for your own empowerment. Nobody can hurt you with it if it makes you feel awesome. And I feel pretty good today as I roll about with Noola. Crisp air, my favourite.

Ah, there’s nothing like extreme sports, I think to myself as I approach the third circle of hell. That’s a three-way stop where the overly-scheduled denizens in minivans express their impatience at having to wait an entire half-minute for me to get to the other side. I feel bad for cutting into their mercurially hot yoga class time. I’m sure each second of sweating to ethereal music to take their minds off their entitled spawn is far more precious than my crossing over unscathed. Poor souls.

Years ago, when my neuropathy was bad and I hobbled along without a cane, drivers constantly gestured at me to move faster. Yeah, sorry, doods. These boots are made for walking, but not so much my legs. It took me the longest time to realize I needed a walking stick, then even longer to clue in that a rollator would give me a much better quality of life. A friend who used a rollator finally convinced me to buy one. Without her advice, I’d be housebound. So, yay for medical professionals who told me to exercise more and suggested exactly nothing to help me do it.

Once I daredevil my way to the other side of the road, feeling totes badass, I know I have another obstacle to face. The massive intersection on the main throughway that connects the ’burb from north to south. I cannot even keep track of how many lanes there are. All I know is wherever I cross, there’s always a car on my butt. Issuing tickets for cars who tailgate mobility devices should be a thing.

The only reason I’m attempting this at all is because the snow hasn’t begun yet, and I can still get out on my own. Okay, so. Let’s push this wee button and get to the median at least. Then we can push the next one and make it to the mall. Ah, crap, is there a ramp down that path? I forget. Oh good, there is. The ’burb planners love their stairs.

Traffic is not so bad today, so I might make it all the way to the coffee shop without — and I realize nope. Hello, minivan with the driver who’s giving me a filthy stare. Eat shit and have a nice day! The vehicle zooms past me with a passive-aggressive fierceness I’ve come to know and despise around here. Those yoga classes must hand out free orgasms to first arrivals.

Right, so why all the yoga bashing? It’s sort of a thing when one has a mobility issue. You get told about three billion zillion times how yoga can “cure” you. You know, because having a disability must totally be my own fault. The irony is that I do yoga stretches to loosen up my stiff connective tissues, which brings my pain level from I WANT TO EFFING DIE to about a six out of ten on the pain scale. With my condition, I can only manage pain. Elimination of it will happen after I leave this world. Most people in my situation know this. We’re chronic pain warriors.

The road to get to the coffee shop has a ramp down the slope. The ramp is a mix of interlocking brick and cobblestone, because I guess it looks pretty, but I need to stare at the ground constantly in case Noola’s wheels get caught in a misalignment or wide crack on the ground. On several occasions in the past, because of “aesthetics” around curbs, Noola’s wheels fell into an indentation and the rollator bucked, nearly sending me flying. Also, because of the suburban need for beauty over function, concrete ribbons finishing off curbs that slightly ramp down to the street can cause my rollator to get stuck. I have a foot pedal to lift Noola to clear a curb, but sometimes I cannot see any sunken concrete on the street, especially when it’s covered with weeds. One time, Noola bucked and then came down on my foot. Thankfully, no bones were broken, but it could have happened.

So, yeah, all you cliff climbers, I take risks, too!

And now, the mall parking lot. This is where I feel like I’m a character in an old video game who hopes not to get smooshed by a constant flow of cars. I scan for the safest path to get to the coffee shop that’s situated in the centre of the lot. There’s a sidewalk up the slope and stairs down to the café for safe access — for everyone but people with accessibility devices. I need to traverse the lot, where cars are constantly vying for spots. There’s a roundabout way on a sidewalk that would take me to a crosswalk, then to a median, but I’d still have to cut through the lot to get to the place. I know, right?

Someone pulls into an accessible spot near the pharmacy. She smiles at me. I smile back. There’s this understanding, like we’re part of the same crew. We are, really.

Okay, I can so do this! I muster up the courage, straighten my back, and take Noola forward. The path through this part of the lot is clear so far.

BEEEEP!

I nearly jump out of my skin. I turn around to see some jerk wanting to get into a spot I’m passing.

“Are you fucking kidding me?” I shout.

He seems stunned. Maybe these folks don’t say fuck a lot. I’m from Verdun, Québec. Swearing was our dialect.

I press on and stop with a pregnant pause at the coffee shop drive-thru. Yeah, I really don’t get the drive-thru coffee thing. I decide to hope it’s for people like me who find it safer and more convenient to get their hot beverage. Or for parents with a car full of kids. That would make sense.

I’m on the sidewalk where the shop stands. It has a nice ramp up, so whoopee for that. I notice a customer going into the place and I cry, “Hey, can you please hold the door?”

The door closes. “I guess not.” Perhaps he couldn’t hear me. I need to believe that. No matter, because there’s an accessible door opener. I press it.

Nothing. Maybe I hit it funny, so I try it again. Huh. One more time and . . . nope.

Three young people are sitting on a bench outside the shop, staring into their phones. They are oblivious to me. Hey, I’m a social media shark, too, but you know, sometimes look up for a change.

I shift Noola and reach for the door myself. It’s vacuumed-sealed, I swear.

“Seriously?” I shout.

The three phone gazers look up, startled. Before I can say anything more, a barista from the shop opens the door from the inside.

“Sorry about that! It doesn’t work,” she says with a perky tone.

“You know, it’s really hard for people with mobility aids when these openers don’t function,” I say.

“Sorreee,” she says again, trying to make it sound even more bouncy. “We don’t know when it’ll be fixed.”

“But it,” I begin, but she cuts me off.

“Just ask one of us to open it for you when you leave!” Then she boings along back to her station.

At this point I’m feeling meh and decide I’ll go to the bathroom, then head home. I roll Noola to the accessible washroom. It’s occupied, so I wait.

After a minute or two someone walks out and spots me with my rollator. I understand all about the variety of disabilities we can’t see, so I don’t pass judgment when someone without a mobility device exits that washroom. I had to use it when I didn’t have my cane, because I’d lose my balance trying to navigate narrow stalls. The only time I get suspicious is when the occupant’s expression mirrors that of someone who’s been caught with their pants down. (Fortunately, this is only a metaphor at present.)

The person holds the door open for me. I thank the person and go in to do my business. After I wash my hands and collect Noola, I see there’s no automatic door opener to get out. You know, if a business is going to bother with accessible washrooms, then maybe give us pee-ers and poopers the independence to come and go as we please?

Once again, I shift Noola a little and manage to get the door open. Keeping it open with one arm while I negotiate the rollator with the other is something I attribute to a super power. At least thinking this way keeps me from screaming like a banshee on a bog.

I really want a gluten-free rice square for my troubles but figure it’s better that I just go. No, I’ll medicate with that rice square. I pick up one. Then another. Just in case the first one doesn’t take.

On my way out, someone else rushes past me to the door and lets it slam shut. What is wrong with people? How have we become so self-absorbed that we can’t think about others?

I just stand there, and the perky barista flies over and opens the door for me.

“Have a nice day! We hope you come back soon!”

I blink and roll out the door. The smartphone gang are still on the bench. They seem a bit intimidated by me. Probably think I’m the crazy angry old lady with a pushable wheelchair.

Good. Let them think that.

I take a bite of my snack and drop it into Noola’s basket. Checking both ways, I head into the parking lot. A car is behind me in no time, and of course, there’s honking because I’m in front of a spot.

I lift my right hand off Noola’s handle and without looking back, give the driver the finger.

Then I reach into Noola’s basket and take another bite of my treat before I press on.

The car waits silently.


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https://medium.com/disability-acts/to-get-to-the-other-side-3a58a90ff5a3