There are many parts of disability that can be awkward or embarrassing for us. We need assistance devices to keep us safe. For me, those things are my mask, my Service Dog, and my wheelchair. Sometimes my list includes more or less. For other people with disabilities, the list includes other things. For people in the able bodied community, all we ask is for respect, and that simply means not doing a double take or staring when you see something that you think is different or doesn’t fit what you think should be the norm.
When I look back on it, I remember a journey that began when I was in elementary school–too young to understand enough to fight for myself. My mom was my advocate. When I am too sick now–even as an adult–my mom still stands as my advocate.
Protect yourself. Protect others. It’s that simple. If you are leaving your house, wear your mask. If you get out of your car for any reason, wear your mask. If you are going to be around any person that does not live with you, wear your mask. And wear it the right way, y’all!
People and animals will come and go in my life. I will move from place to place in this world. Different things will capture my interest and take up my time as I grow. The one thing that I can count on to never leave me, to be my constant companion, to remain present through it all no matter who I am with, where in the world I am, or what I am doing is my life partner–Judas.
So all my friends on social media see posts all the time of me cooking and baking but in real talk conversations the word is I am dying. Both are true. Because I choose to use my few usable hours doing something I love and that I can manage with a little help. And I want to share my creations with people because I am proud of them.
Revolution — from the Latin root “revolutio” meaning “to turn around”
defined by Merriam-Webster as “a sudden, radical, or complete change” and by dictionary.com as “a sudden, complete, or marked change in something”
I’d definitely like to think I’m more than just a bunch of diagnoses, and maybe I should have told you those things about myself first. However, the name of the blog is “Diagnosis Be Damned” and the name of the post is “Out of Order,” so it should be okay either way.
In a surge of enthusiasm, I uploaded my first post without much consideration of the fact that it has no real introduction to the blog or myself. Since I have always jokingly said that I should tattoo “OUT OF ORDER” to my forehead anyway, I guess this is as good a way to begin getting to know me as any.
I want to sit in my bed on days when I have no other choice because of Extreme Adrenal Insufficiency or Dysautonomia or Crohn’s Disease or one of my three kinds of migraines or Ehlers Danlos Syndrome or Endometriosis or Fibromyalgia and know that there’s an online world of people out there who could be my friends if I just had the confidence to look for them because this loneliness is suffocating me. Mostly, I want to write again. I want to put my words out there in a way I haven’t been able to since my health got really bad again. Who knows? Maybe some of those things can go together?