The Chase

Tags

Ehlers Danlos Syndrome Awareness, Ehlers-Danlos Syndrome, pain management, poem, poetry

Handicapped Parking and the Random Internet Whiner

Tags

EDS awareness, Ehlers Danlos Syndrome Awareness, Ehlers-Danlos Syndrome, handicapped parking, invisible disabilities

To the Internet Girl who Complained about Handicapped Parking,

Hey, girl! Yeah, I read your little rant that you penned so bravely from behind the comfort of your computer screen. I gave it its due consideration as I scrolled past, ignored your silly little remarks and went on to something else in my day. But then, I saw your efforts show up again on an EDS page. Oh, that’s Ehlers Danlos Syndrome since I’m sure you have no idea what that is, but I won’t even complain about that. Most people don’t know about it. Look it up. Anyway, I read through some of the remarks from my fellow EDS’ers (I do care about that) and I saw how much hurt you, and others of your ilk, are spreading with your ignorant comments about how unfair it is for handicapped people to park closer to the front door than you. How that if people are able to walk through a store, they should be able to walk through the parking lot.

I suppose you never considered how dangerous it is for a person with limited mobility to navigate a parking lot with its cars dashing to and fro, or how the added steps could prove the entire trip to get a gallon of milk to be just too much, or how dangerous an icy or wet parking lot could be for someone not quite as physically stable as the rest, or even how a person can stop and rest safely in a building when they are tired or hurt but in a parking lot – not so much. It doesn’t seem like you gave the whole situation any consideration other than the fact that they get to park up close and you don’t. So very unfair!

I tell you what, in an effort to be fair, I promise to give fair consideration to how unfair life is to you and your non-ability to park where I park. The next time I wake up in the morning and have to pop my own shoulder back into place, I will think about how unfair life is to the non-upfront parkers. When I strap my two, rather obvious and sturdy-looking, bi-lateral (that means two, sweet-pea) knee braces on so I can actually walk and go out in public to the stares of grown adults, I’ll think about how unfair it is that you have to walk those extra steps through the lot. And, definitely, when I spend another sleepless night trying to dull the pain enough with medication just to get a couple of hours of almost rest, I will remember to shed one of my flowing tears for the absolute horror of able-bodied people giving up 2% of the parking lot to the disabled.

So go ahead! Rage against the machine and rail against the disabled! Stamp your little foot about how unfair life is, you special little snowflake. And since I’m sure you have never been told no in your whole life, I will be sure to positively redirect you to the back of the parking lot as I hang my blue tag and park where you really wanna park. The life that gave me that “special” privilege is, after all, just so dang fair!

_____________________________________

To those with Invisible Disabilities and Those Whose Disability is out for Everyone to See,

I know you don’t abuse your parking. I know those of us who have good days and can walk, will park in a regular space that day because we know what it’s like to need that up front spot. I know that you park there when you need it, even if people can’t see that. I know that those of you who have to park there all the time would love to have a good day and park in any regular spot. I know. But, you need to know something: you owe NO ONE an explanation. Not for where you park, not for where you sit, not for how you live your life. Life isn’t fair. We’ve figured that out a long time ago, haven’t we? Just stay strong and keep going!

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To those who Use Other People’s Parking Tags that You Don’t Need,

You suck. You are a major part of the problem. You are why we have to deal with the ignorant jerks who confront us in parking lots. You’re actually worse than the ranting internet girl. She is just impotently whining about how she wants to take parking spaces away from the people who actually need them. You actually do it. STOP IT.

 

Poetry takes no specific form

Tags

definition of poetry, Ehlers-Danlos Syndrome, poem, poetry

I used to think that poetry had to take a specific form: haiku, limerick, ode, metered rhyme, etc. Oh, there certainly are many different types of poetry that can be named and grouped, but truly poetry is a much more ethereal experience that evades the concrete. I like Merriam-Websters way of defining poetry: writing that formulates a concentrated imaginative awareness of experience in language chosen and arranged to create a specific emotional response through meaning, sound, and rhythm. Well, gosh, that sure gives a lot of leeway, doesn’t it? That leeway is where I find my freedom as a writer, and I used it a couple of years ago when answering the question, “What is it like to live with Ehlers-Danlos Syndrome?” It’s like any other life. I have my ups and downs, joy and tears, hopes and fears, love, family and friendship. But, I deal with daily pain and problems that are pretty odd and hard to fathom by people who don’t live with a genetic difference such as this. I wrote this free form poem to explain a tiny bit of what I go through. I didn’t write it for sympathy, and definitely not for pity. It’s just a tiny window into my world to facilitate understanding. That’s what we all need, don’t you think?

Ritual

12:15
It’s too late to take the little white pill tonight. I stayed up late getting work done; graduate classes are a lot of work. Now, if I take the pill, I won’t be able to get up with the baby. There’s not enough time.

12:30
I can’t fall asleep on my back, never could. Maybe if I turn on my side it will be all right. Yeah, I’m all right.

12:40
I’m not all right. My ribs are moving out of place. It’s starting to hurt. It’s hard to breathe. I turn on my back and push and rub and massage my ribs back into place. Maybe I can sleep on my back.

12:45
My knees, my ankles, my hips fall out of place. I can’t sleep on my back. I stretch and twist and move my legs back into place. I hear my husband’s voice.
“Are you hurting?”
“Yes.”
“Do think an Alleve will help?”
“I don’t know.”
“I’ll go get you one.”
“Ok.”

1:00
I can’t sleep on my back. I’ll try my other side.

1:05
My ribs start to move. My shoulder pops. Oh no, it’s out. I get up, pause to reset my ankles, and head to living room. I twist and turn and pace. I make large, painful circles with my arm. It won’t go back into place. How long this time? Hours? Days?

1:15
I sit at the computer and stare at the news, Facebook, the Weather Channel, anything. Take my mind off of it, please.

2:00
I lay on the couch. Push pillows under my legs, my arms, try to adjust, try to rest.

2:15
I sit. I stare. I try to fight. I can’t. The tears begin to creep, unwanted. The voice in my head begins to scream. First, a whimper, then a full fledge wail. It screeches, “How am I supposed to live the rest of my life this way?” It roars louder and louder until I can no longer understand my own thoughts. The tears tumble quickly until there are no more tonight. I sit. I stare.

4:15
I return to bed. I’ll try to sleep on my back. The headache from my sobs fogs my mind, exhaustion clouds my thoughts. I slam into sleep. I dream of pain.

6:40
The baby cries. I sigh and look at the clock. My husband has already left for work. I breathe deep, twist, stretch, push, begin to put bones back into place.
Slowly, I rise.