I woke up feeling kind of crappy.
My body felt old, I feel like I never have enough energy to do everything I want to do, and that bums me out. I have a mountain of things to do, and a lot of them include stuff like bill payment, but then the paint is flaking off the walls of my new house (- because the people who sold it to me did some kind of quick-fix paint thing and it’s all falling off).
I have to call to go to an audiologist, to make sure I’m really deaf, so I can qualify for a deaf tax credit. I have to call to take Mack to an audiologist because his teacher has concerns about his hearing.
All of this stuff is my Pile o’ Life , and for sure, the longer I look at it, the bigger it all gets and the more tired I feel.
But I’m not unique or alone in having a Pile o’ Life!
We all have it. It may or may not include disability.
I can’t choose the elements of the Pile o’ Life very easily, but I can choose what I do with them, I choose how I feel about them, I choose what my focus will be.
When I feel really crappy and overwhelmed by my Pile, I close my eyes and I think of my perfect world.
I think of my world at it’s best, what I dream of.
I write out a story – a magical, fanciful story of the wonder of my life, of all the beauty that it has and holds and expounds.
I write out this story of my world as my spirit sees it, not as the Pile sees it.
Simply the act of doing this is transformative, empowering, a pivot, a game changer.
Us Parents of Kids with Disabilities Have a LOT on Our Plates
There are no ifs, ands or buts about this.
I spent two solid weeks crying over my daughter’s IEP; I spent another two solid weeks trying to figure out my son’s 504 and if he was going to get one, or what.
I spent a few days even grieving about my third kid potentially having one of the same disabilities as me – and I know I’m “not supposed” to grieve; it’s supposed to be totally kosher and cool because I am a strong proponent of disability culture, right?
But I DO grieve.
I grieve because disability is a natural and normal part of the human experience and yet it’s such a big fucking deal with people who don’t understand it.
I grieve because I don’t want my kids to go through what I have. I grieve because while the personal experience of disability can be powerful and wonderful, public access and inclusion are royal pains in the ass.
Us People with Disabilities Have a LOT on Our Plates
There are no ifs, ands or buts about this.
I have to fight for every.single.scrap of access that is thrown my way.
I need to figure out how to stay strong and true to my spirit while wading through mires of C-PTSD.
I need to figure out how to remember anything when my brain wants to let loose.
I need to figure out what is being said around me, because it’s all a hushed mumble.
I have constant, daily stress from the news and the threats of x, y and z being cut and I don’t know what I”m going to do about any of it.
I am exhausted from trying to explain how I “don’t look” disabled but I sure as hell am, and that being disabled is not a bad thing.
These Plates of Mine Are Full
The plates, the Pile o’ Life.
All that stuff is real and there and like I said, the focus and feelings are my choices.
So I sit down and write the new stories.
I write stories of a world that we create that celebrates every person, ALL PEOPLE, that realizes and recognizes that we are all Beloved.
I write stories that include my beautiful home, my gardens that feed and sustain both body and spirit, that heal and nurture.
I write stories that include my three lovely children, each so perfect in their existence. I write of them happy, flourishing, thriving, learning, growing, being and becoming who they truly are.
I write stories of a life in which communication will be easy for me.
I write stories that bring me joy as I write them.
Then with the joy that they bring, I feel a renewed sense of energy, enthusiasm and power and I’m able to see the Pile o’ Life differently.
The Stories We Create
What we say about ourselves: the words we choose and the narratives we tell, are so powerful.
I create a story of my life in which I am a certain type of person engaging in the world in a certain way. I could weave my story in one particular way, with a heavy focus on the lack, on the negative, on the challenges. Or I can tell my story in a way that makes me feel more powerful.
- Disability is not a challenge to be overcome: it’s a platform upon which I live my life.
- Disability is a natural and normal part of the human experience.
- Disability is value-added; we learn, grow and thrive to an utmost extent when we lean in and figure the “disability” component.
On Being a Single Mom:
- Being a single mom means my kids thoroughly learn self-sufficiency, responsibility and independence
- My kids learn the value of one active, engaged grandparent (- my mom)
- Timing and organization, resourcefulness and financial management become stellar, natural skill sets
On Death and Loss:
- I had the experience of knowing what a truly great brother is
- I have an angel that I can call by name
- My dad gave me wonderful, funny memories that I am grateful for, and a rich love for books and learning
I could go on, but you understand where I am going with this.
It’s about focusing on the things I want to focus on, it’s about focus and weaving and creating a narrative that shifts my feelings, enhances joy, and ultimately, literally BECOMES MY REALITY.
We create our lives and our stories.
We spin our tales as we will, we shape our narratives and we choose the angle, the plot twist, the trajectory.
So how do we want to tell it?