shine in the park
in early childhood i didn’t know my mom was disabled, I just thought she walked with style, that the way she walked was just the way she walked
my mom was born with a rare form of brain cancer, glioblastoma, that metastasized as tumors throughout her spine and close to her heart. she had continuous surgeries for the first 2 years of life to remove the tumors, leaving her partially paralyzed and unable to sweat on the left side of the body. i thought that was the coolest thing - i was fascinated when she overheated, the right side of her body flushed and perspired and the left was dry as a bone and remained her rosy pale resting skin tone
since I started painting my mom i’ve noticed that I leave her legs colorless and I’m really drawn to their thick, blocky and wobbly form and i’m curious about this.
disability is a curious thing, we’re often uncomfortable with it, i think, because it reminds one of their frailty, that they are ultimately not in control of life, it creates concern about what disability means in the face of survival and of finite lifespans and what disability in close proximity means about them, but what I see is the strength of different abilities. other intelligences come online and are leveraged and refined because those “normal” capacities can’t be relied upon.
disability is hard. it’s hard as we make work of ourselves in the material world, creating increased energetic spends and increased emotional labor.
watching the play of my life, i’m grateful for the experiences and the lessons of being my mom’s child, even in the times it was hard to be her child.
she was a point of pride and shame growing up, pride because she was my mom, she was deeply loving, wise, fun, and had one of the kindest hearts i have experienced. she loved her family and her life, she never thought experiences weren’t for her and she didn’t suffer much when it came to the limitations of her body. she often fell and broke toes, feet, ankles, wrists and arms and moved through recovery with grace. she drove a car until her early 50’s, picking her leg up to engage the gas and brake pedals, loved to chair dance and dance with the assistance of my father, exercised, travelled, did mom, wife, friend and autonomous things. she didn’t let anything stop her from living the life that she wanted. she accepted herself in a profoundly simple way. the shame i experienced was from the way the outside world oriented themselves to her - open mouth gawks, mocking, staring, infantilizing her, gravely underestimating her intelligence and power and, at times in her life she was the victim of predatory violence. in hard times, i hated myself for the shame that arrived uninvited and, occasionally changed the way i connected to her, but mostly, i just loved spending time with her and was fiercely protective of her, often staring down adults who should have known better and fighting kids that didn’t.
to say my mom’s strength and beauty was synonymous with being fearless would divorce her from her humanity and I have no interest in grief mythology or idealizing the dead for my gratification. my mom was not perfect, she had her insecurities and her shadows and she masked her disability at times, choosing not to walk when she didn’t have to and using mine, my brothers and my fathers arm to assist her in walking instead of her cane and scooter, but god damn was she powerful and she could light up any room. some of the lessons i take from being my mom’s child is how to come back to myself, to my truth and to love my body, mind and spirit wholeheartedly in all of its perfection and imperfections and how to be fiercely soft in the face of cruelty
i love spending time with my mom when I abstractly paint old photos of her just as much as i did when i was a kid and i feel lucky to connect to the profoundly deep connection we had in life through this process
the world told me my mom was disabled and i just knew her as my mom who loved me wholeheartedly. imperfection is perfection in nature, don’t let anyone tell you that you’re magic isn’t beautiful. self compassion and unconditional love for oneself regardless of ability or others abilities is paramount and powerful. when one is resourced with both, their true expression has the opportunity to be actualized and the ability to love others unconditionally and with accountability can be expanded
side note for the astro nerds out there - this woman had 5, FIVE aquarius placements and 2 in gemini 😱 🔥 she was a badass and delightfully infuriating and i’m sure she felt the same about me