I’ve been wanting to do more blog posts — they run through my head. I do like pen to paper first… Dictate into the phone – fix those crazy dictation errors…
Then it doesn’t make it here but I have a deadline – Rare Disease Day, February 28, 2021. Honestly who cares? I don’t.
I know so many people feel differently but I don’t have to feel that way. I clearly don’t.
Odd for a rare disease patient. Not really. Some of the organizations share voices of patients, advocates and caregivers. Great. I’ve done that… Some simply promote a rare disease organization. “Yay! we are a rare disease organization…” What have you done for me? But with any one day or month of “awareness“ it doesn’t make the chronically ill feel better. Who and what does the day want to reach and accomplish? “Hey that organization supports rare disease.” I’m fully aware that some people are helped but I’m not. I mean thousands or millions of people are not helped, not one bit.
Awareness days shouldn’t be pacifiers to feel like you (the patient or care giver) are important. That your disease is effectively your life because it is your life, everyday. So what’s with the Rah Rah Rah?!
Awareness to make others aware – a teaching moment but I don’t see that happening. Chronic illness language is just in the chronic illness world. I personally hate, yes I used the word hate, the term spoonie. Guess what, I’m allowed. That’s why I wrote Maybe I’m a Fork a couple years ago (If you don’t have a sense of humor why bother). It’s just me being me but I have to tell you I’m not the only one. But anybody who does not have a chronic illness or a chronic illness person in their life have no idea what the heck you’re talking about. I just explained it to a 25 yro on Monday. Is that awareness? NOPE.
What do I want…. Oh, I’m gonna tell you… I want doctors targeted. “Target” is a very direct word. They need more education – continuing education as they go. Just since November 2020 to present day I have been met with contempt, dismissed and my name, via patient portal, that other doctors can see, slandered. But I will have more on that because it works both ways.
They only know the word Acromegaly. They think oh sure, she’s done with that. She is in “technical remission“… There is a reason the word technical is always there. This pain is all in my head. I’m back in 1999 being accused, yes accused, of being severely depressed. My pain is not real. NOPE! It is real. Thanks covid for making everybody sheep. Even those who know they’re being sheep are too cowardly to not be sheep. Everything was taken away and everything is much worse and continues to get worse. But no one will see me. Was I not worth protecting from harm? Taking away therapies is HARMFUL. Not seeing me now because, in essence, I know more than they do and they are not confident enough to say, “tell me more, I’d like to learn, look it up… how ’bout I’d like to HELP!
So on Sunday, February 28, I will say thank you to “Art of Possibilities“ for excepting me into their juried art show and sales. Which happens to start on my birthday, April 21, 2021
Courage Kenny’s Art of Possibilities Art Show & Sale exclusively features artists with disabilities illustrating how creativity knows no barriers.”
No barriers! How could one sentence convey so much more than anyone calling themselves a rare disease organization. It’s not helpful. This, this acceptance is helpful! They recognized me as disabled. The government does but “you don’t look sick“ is kind of a curse…
They were a rare find for me. Pun/no pun. They waive the Application fee but you were still able to donate so I did. Because what they are doing is so much more than just a juried show. Heck, I even included a video and my max of two paintings were excepted. Category: oil painting. Supporting artists is important. Supporting disabled artist is a whole other level.
My disabled life needs to be recognized by all because disability does not mean inability. It just means different than what you might be thinking. Maybe that’s none of your business. Maybe it should be your business. Maybe the world would be kinder.
I am not an inconvenience. I am a member of the human race and I need to be seen and heard. Ableism is a newer word for me. It doesn’t make it any less true. I am guilty of being an ableist against my own disabled self. I can admit that. But it’s time for society to recognize the disabled people are worthy. I am worthy. I’ve always known that but I’m tired of trying to convince people that I am to what end?
Art starts a conversation. I’ve been saying that for years.
And put on an art show – crazy… For disabled people, ya know, we are still us. We still create. We are still worthy. This acceptance was a strange kind of validation.
Disability comes in more forms than you can imagine. What if everyone else knew that too. So Rare Disease for me is about Art and Conversation. Because if “regular, every day people“ learn some thing then awareness has been achieved. Patting your chronically ill self on the back. Nope. Being a charity or organization promoting your own business. NOPE.
Oh and Rare Disease Day is every single day. Disability awareness is every day as well. So now I’m not posting for those other organizations. And I’m not buying T-shirts that say “rare” or putting up hand prints and supporting organization because they do not support my beliefs. I make my own Acro-tee. It’s complex and crazy. I know, it STARTS A CONVERSATION! And people who don’t have acromegaly or barely know me who bought one and wear it… find themselves explaining WHAT IT IS. No not Shrubbery. Acromegaly. If you don’t understand “Shrubbery” well, you missed out. It’ funny. And when My hubs read that line he’s gonna laugh.
More needs to be done. If I wasn’t so depressed, LOL, I’m on the feisty side….. Pain is beating me down so it’s hard to advocate better. But picking up a paintbrush makes me feel a joy and peace and that makes all the difference.
I have so much to say. And so much to share. Right now I just want to create. And I don’t have the luxury of painting every day because I cannot lift my arm because no one will address my nerve damage or what is truly causing it. Idiopathic… one of the worst words in the English language. Cruel for patients.
So I’ll wrap it up. Doctors need to be educated because they are lacking. I have so much more to share about this in the coming months. And I’ve said it many times… I am made a broken popsicle sticks held together with duct tape. Have you seen splintering popsicle sticks and duck tape that starts to shred… I just want to hold a paintbrush. I’m not asking much here.