I used to run around this island and swim off the dock. I used to rock climb and pick blueberries. I could paddle a canoe. I was strong enough to ring the dinner bell and wash the dishes when dinner was through. I was awake longer than the sun.
But my daddy. My daddy surprised both of us that night when I called. He told me to start packing my bags. He very calmly announced that if I was that sick, it was time to come home and regroup. In that moment, my daddy began protecting me from myself. He stopped the panicking voices in my head that were fighting over whether or not American University or my life were more important. He stopped the very persistent voice that was screaming about how I was letting him down. He stopped my tears. He provided a solution to the problem that I felt I had been facing alone. Suddenly–we were a team of three.
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.