Grief has followed me throughout my life. I actually remember the exact moment when I first felt that feeling of loss, something I didn’t understand to begin with. The deep ache that sat in the pit of my stomach, the same feeling as if I were to be punched continuously until the pain was radiating to every part of me. The constant confusion about why my body wasn’t operating like it did the week prior. It had me in a serious chokehold of emotions at such a young age.
I was 10 years old when I first started noticing walking was becoming more difficult. By the end of each school day, I was dragging my left foot as if it was attached to a heavy sandbag. Falling to my knees countless times until I finally made it across the field where I waited for my parents to pick me up. But by the time I got there the side of my foot would be all swollen and bruised from dragging it across concrete then eventually the prickly grass. I would never wear shoes either which didn’t help the situation much. However, that was the only way I could have some type of balance by feeling the direct surface beneath me.
I understood that I had a Disability, but my brain still couldn’t process why I was losing parts of my independence so rapidly. The feeling of being left behind when all you want to do is keep up, and when you finally got there everyone else already left. I lived in a state of recurring daydreams whilst watching kids run, play, and participate in sports day. I envisioned myself running faster than all the boys, breaking the record for the highest long jump, and doing cartwheels to top it off. I was so fixated on those thoughts that it made lil Noell grieve even harder for what could have been.
Being born with a degenerative Disability takes a huge toll on your soul. With my particular disease I am constantly losing strength which puts me in a state of endless grief, the exact same feeling if you were to lose a loved one, but for every single week of your life. The forced adaptation to what has been lost, how to now navigate this new way of living after something special has been taken away from you, and figuring out new ways to prolong your independence as much as possible has become normalized for me. We don’t talk enough about how adaptable we with Disabilities are, not only adapting to our bodies but to the world around us. We have to strategize everything we do, even if it takes us an extra 10 steps to do so, rather than someone who is able-bodied that can do something instantaneously without thought. We come up with creative ways to get through daily tasks, which are usually found through trial and error. For example, I’ve developed strength in my toes to pick things up off of the floor and carry them to a surface that’s reachable. Making it work with what we do have, and being resilient through the process even when we are burnt out from not only our own daily tasks but having to go out into a world that wasn’t built for us. If we can find creative ways of adaptation, why can’t the rest of society figure out the rest? Make our lives easier through accessibility. Yes, we are the definition of resilient, but we can only do so much when it comes to the external environment. Start getting creative ables and work alongside us not against us.
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