We act like we gotta whole lotta road left…

“Let Me Know That You Know What You Want Now”-Atmosphere

Do you want respect, or do you want truth?
Life’s too short to be afraid of the dark
And we don’t stop after making the mark
Separate your chest from your heart
To help everybody wag your tail with a lot less bark
Put the costume angst away
I was born on the year of the razorblade
I’m in the back corner of a one way train
This storm ain’t nothing but Sunday rain
Let’s go

(Do you want respect, or do you want truth?)
Get a taste of your soul when you hold breath
(Do you want respect, or do you want truth?)
We act like we got a whole lot of road left
(Do you want respect, or do you want truth?)
So don’t mind if I drive with the top down
(Do you want respect, or do you want truth?)
Let me know that you know what you want now

Earthbound, aim for the soft spot
So much purpose I walk like a molotov
Shot glass, rock hard, penetrate nonstop
Cops on the way with the bomb squad
Now let it be known
We’re trying to get ahead before we get a headstone
But a rich man still face death alone
That’s why we turn up the touch and connect the tone
Get shown

Dashboard ain’t clean as it was
Back before I first took the last seat on this bus
But the children dance when we beat the drums
And they still understand why we speak in tongues
All city, American built
A pocket full of cash take care of the guilt
The crabs all crash in a barrell of milk
But when they clear the snow I’mma steer the Seville
It goes, look for the sign, wait for the right time
A lifetime to outlive the night time
And when the paint chips fall
Gonna find my name on the wall with the crown in the skyline
I keep bad on the back of my mind
I’m an average guy, I just happen to fly
Supernatural high and I’m laughing inside
One nation with a capital I
Come on

Everybody wanna be the next to blow
So let it flow, so fresh it grow
Just to let you know I could let you go, ho ho
Millenium Do-Re-Mi-So-Fa-La-Ti-Do-Do

Everybody’s difficult, everybody’s simple
We all on death row, we all gon’ tip toe
I run with kleptos, I still wear big clothes
Hold my dick the way you hold your crystals
Pissing in the middle of nowhere
Fishing in a lake full of frozen tears
I’m like a polar bear from the Southside of over there
I disappear into the open air, Atmosphere
Get a taste of your soul when you hold breath
We act like we got a whole lot of road left

Beyond the message

Screenshot_2015-10-28-09-00-37

This is just one example of hundreds of memes I see everyday. This particular kind of meme has one point. It’s intention is to be inspirational. I get that. My rational brain understands these are created to help those struggling when they are in a tough spot.

When I see them posted up in my support group, I feel a catch in my chest.

It’s gonna harder before it gets easier. But it will get better, you just gotta make it through the hard stuff first.

This is my beef with these kind of memes. For us chronics, there is nothing to “overcome” there is no end to our suffering. Sure, for some of it ebbs and flows… but there is no cure. If we just push long enough it won’t just stop. We can push until our palms are bloody. Hell, we all have fought and continue to fight it. It’s fruitless. Ask anyone in my support group they will tell you it’s pointless to fight it. We can fight and overcome the depression, the anxiety, the substance use and abuse, the sweet little cherries on top we get being a chronic.

“Making it through the hard stuff” is survival. It’s nothing to be proud or pious of.

It’s that pesky little line of wanting to be treated like the average Joe and celebrating victories, like waking up in the morning… showering… doing the dishes…

I feel like some of these mushy feel good things are inappropriate and dangerous for some in my position. Especially those who are new to my particular disease, or any newly diagnosed person. It’s dangerous because they may still believe they can “overcome” – they may still think they can push hard enough and “win”.

My disease is a one-way road. There are no exit ramps. No mile markers. It’s a fickle bitch.

The key with my disease isn’t believing you can overcome anything. The key is to understand all emotions are normal and OK. It’s ok to be really, really, really pissed off. It’s ok to be cry so hard you are nothing but a snotty pile. It’s ok to be OK too.

I have become very in-tune to my emotions. I feel the anger bubbling up and I welcome it. Because I know it has a place in this moment. I experience it. Process it. Then I put it back in my emotional basement. I am over trying to transform emotions… there will come a point in everyone’s life – chronic or not – when you too, will learn each and every emotion has a purpose.

I was, and still feel I am sometimes, stuck in an anger loop. Now that winter is approaching by disease works a bit differently. I will have three crappy days and then usually one or two fair ones, then a day or two of dizziness, and then another couple crappy days. So I get into my winter/anger/bitter loop. I fought against it for a long time.

Now I know it’s coming… no reason to fight it. Prepare for it.

It’s not necessarily that I am “in a better place” with my disease… it’s simply an evolutionary process. It’s this silly little dance I do with myself. Except I have two left feet, no sense of direction, and the song is stuck on repeat.

Moral of this story is to not be hard on yourself when you see gooey memes or have your well-meaning random family member tell you as long as you stay positive you will be OK. Because you won’t. Like the late and great Stella Young once said, “no matter how long you stare at a step of stairs, it won’t make it an elevator.”

MW

Able friends: I am not your inspiration porn #inspirationporn #disabilities #epilepsy #chiari #ptsd #bipolar

My jaw is still on the floor and tears are still flowing from eyes. I get it. I feel it. These words are so true.

Karrie higgins

I woke up this morning after a fitful and sweaty non-sleep to a Facebook feed of inspiration porn. Three of the posts or memes ended with some variation on “What’s your excuse?”

My “excuse?” My Chiari, one of several neurological disabilities I have, is acting up, which means:

  • my skull feels like it is trying to separate from the dura mater
  • crushing pain in the back of my neck
  • poor coordination –  I dropped a glass from lack of coordination. A shard embedded in my foot, and I actually walked off with my foot bleeding and forgot –at that very moment–what had happened. My husband came home and found the glass, which he cleaned up. Which leads to the next symptom ….
  • brain fog
  • somnolence
  • dizziness and syncope
  • word-finding issues, which seem a bit better this morning, although this post has taken 2 1/2 hours. I’m on the same sentence in the book-in-progress that…

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