Perception can really be quite OFF...
My name is Penni, and I live a double life... One is of a girl, health rapidly declining. The other: what the world sees.
I live with the diagnosis of late stage Stiff Person's Syndrome, Occipital Neuralgia, and CIDP.
We've all heard the quote, "Don't judge a book by it's cover."...either from a parent, teacher, friend, or coach, and we say it to other people as well.
We all REALLY make attempts not to judge people, because we generally want to be good people, right? We want to think that the WHOLE of people are good, upstanding citizens, and they live a "normal" life, they just LOOK different than our perception of what a good person should look like, right?
Well...we suck at it.
We are human. We are all guilty of looking at someone with a bright green mohawk, and thinking, "Oh, BOY...I wonder how long HIS wrap sheet is!"
But, then you feel bad, and try to make yourself feel better, and try and skew your OWN opinion: "Maybe he's just trying to make a statement.", or "Maybe he had a bad up-bringing.", among others...
Yup, that's what it is...His parents beat him, so he bought green hair dye. Right.
Well, I am here to challenge that perception. In EVERY sense of the word.
Me? I am 32, married to the perfect man, and have 2 beautiful daughters. I am educated, and although disabled, still try to run a small business.
I used to be PROUD of how people "perceived" me.
I was the girl with a baseball cap, white tank top, and jeans covered in the 'job of the week'. Whatever day you saw me, I had just painted the outside of a house, torn out a bathroom, or spent all day in a crawl space (since I was the girl, I was the smallest) and I was ALWAYS dirty. Not nasty, just covered in paint, tile mortar, or mud...depending on the day.
Why? I was a Remodeler. A good one, too. I ran a female owned contracting company, and did most of the work myself, because I was a perfectionist. I wore every paint stain, dust clod, or mud splash, proudly. All because I worked for it.
I made beautiful things out of not-so-beautiful things. I made something out of nothing, for a living. I was respected, even though that took years of having to prove myself, and I walked proudly down the isles of Home Depot, often giving advice to homeowners on a Saturday about what kind of painter's tape to use (stay away from the brown paper stuff if you want a clean edge), and picking up materials for the next job...
I fell in love with my business parter, and made and awesome local "Mom and Pop", high quality business out of what I LOVED to do.
I lived my dream. I actually loved my job.
That was 7 years ago.
Today, I spend my mornings fighting to stand, crying, and trying to cover up excruciating pain, so I can get my girls dressed in the morning, and help my husband get them dropped off to their respective schools.
My typical morning? I open my eyes to a WORLD of pain. My constant, disabling headache is the first to greet me. It's been there for 2 years, 2 months and 16 days now. Next, is whatever muscle group has decided to spasm during the night, no matter what meds I took in order to decrease them. I lean forward in my recliner, and see my brave, beautiful husband sleeping on the couch, perpendicular to my chair. The destroyed disc in my back sends shooting pains down my right leg as I struggle to lean forward, and I fight like hell to get out of that chair. Some days I am more successful than others. As I drag my self to the kitchen, I lay out a vast network of pill bottles, all for different symptoms of this horrible disease, and shake as I open them all. I take the necessary dosage, and try to stand at the sink to make a cup of coffee. Thankfully, my husband bought me a Kurig for Christmas, so I don't have to wait long.
I try to do all of this before anyone wakes up, because I actually look a bit pathetic in the morning...sometimes, I border scary looking.
I try to hide this part of my day from my daughters, if possible, and even my husband. Even though they have seen me do all of this, it always ends in the sad face, and the "let me do that for you..."
Just a simple note: All of this takes over an HOUR to complete. Because it is so demanding on my body, I have to sit back down in my recliner, and turn on my daisy-chained heating pads until all of the medicine kicks in. Even then, it only blurs the pain. It never actually goes away.
It never will. Progression is inevitable.
Due to my disease, some days are better than others. Sometimes, I am able to get in the shower, put make up on, and get outside.
THIS is where the PERCEPTION part comes in...
I am stubborn. (Maybe I should all CAPS that.) I am more than stubborn...I am damn near defiant. So, if I make it out of the house, I am ecstatic. I won't describe what a day IN is like just yet...
IF, and ONLY IF, I am able to make it out of the house, I am having a VERY good day. I can walk with a fairly normal gait, my headache is only half-blinding, and I have some sort of mission in the outside world that will make me happy.
As the world sees me, no one can tell what I have already gone through, just to get to this MOMENTOUS point in my day...I am just a woman, out on the town, running errands.
On the outside, my appearance tends to challenge peoples' judgment...even if I WASN'T sick.
I have thick, extremely long hair, past my waist...and it is UNNATURALLY bright RED or pink (depending on the phase of wash out), with blond streaks, laying on a base of jet black under the crown.
I have tattoos, most of which are misinterpreted by the onlooker as some sort of love for Nascar and Gambling.
I have a limp, and my face twitches when my pain gets to me, and my arm jumps like a form of Tourette's, so, typically I am judged as a drug abuser, whether it be a tweaker, or junkie...(depends on who's judging!)
I am probably wearing some form of sweats, or loose clothing...so, maybe I'm homeless...
In all actuality, I stopped cutting my hair because one of my treatment options would have made me lose it all. It's the same reason I decided to dye it crazy colors. I always wanted to dye it purple, or blue but red what was I decided to go with...and I love it! So, although not accepted by everyone, I did all of the things I was afraid to do before I was diagnosed.
My ink (tattoos) pays homage to my love of classic cars, (my father taught me how to appreciate vintage via a 1969 Mustang Fastback) and the card suits on my back are a message: The cards I was dealt in life, will follow me no matter what...
The loose clothing is for comfort, and comfort only. I'm in enough pain, I don't need to go out of my way to make myself anymore uncomfortable.
And the twitching, I try to keep under control, because it scares people. Even if they know me.
Sometimes I have my cane or walker, and because I am young, people tend to get incredibly uncomfortable if I have it. (When I was confined to a wheelchair, reactions were a little funnier, but more on that later)
As for the handicapped placard that hangs from the rearview of my converted van, it has the biggest effect on people that don't see past the exterior. I MUST have stolen it from some ailing Grandmother, and I'm just lazy. I shouldn't be able to park in those spots! They are reserved for pretentious, selfish people that are just running in for "2 seconds" at Starbucks...ugh.
So, since this is my first post on here:
My intentions are to CHANGE people's PERCEPTION, and to give insight into the world of Chronic Illness, and the day to day of living in a world that thinks I should NOT be sick.
I will explain how I am treated, by strangers, family, and even Doctors...maybe my experiences can help other people laugh, understand, and even let others know they are not alone.
Welcome to my world. I hope I can capture your attention, and change your perception of what chronic illness looks like.
Thank you for your time.
