I am a writer, an artist and a student at AUArts. I live with multiple rare diseases and complications from them. I have had non-modularly familial papillary thyroid carcinoma, which spread to my muscle and lymph nodes. I had bilateral radical neck dissection, which resulted in me having muscle, lymph nodes, and thyroid removed. The surgery resulted in me now having chronic hypoparathyroidism and hypothyroidism. A year later, I was diagnosed with paracervical cancer, a year after my first cancer.
A few years later, I was diagnosed with Ehlers-Danlos Syndrome, a connective tissue disorder. In short, EDS causes me to experience frequent dislocations of my joints, esophageal dysmotility, chronic pain, frequent bruising, extreme fatigue, and more. EDS causes my body to dump nutrients, and I do not absorb things properly, which results in needing to take pancreatic enzymes regularly.
Hyperadrenergic Postural Orthostatic Tachycardia Syndrome is a rarer form of POTS. HyperPOTS causes me to have blood pressures 220/110 and tachycardia of 185 bpm. I am chronically dehydrated and have too much norepinephrine in my system, which causes anxiety and insomnia. I also live with Mast Cell Activation Syndrome; this illness makes my body seem allergic to everything, causing throat closers and causes multisystemic issues. Some of my lesser diagnoses are pernio, Reynaud’s phenomena; I take upwards of thirty pills a day to make my body function and keep me working.
I was told I would not be able to go to school nor have a normal life. While I do not have an everyday life, I do what I can to busy my mind and keep a positive outlook. I find cultivating a positive headspace has helped me in many of the traumatic medical situations I have been in. I am blessed to be alive and am grateful to be going to university to chase my dreams. As someone with disabilities, I know the educational system can be frustrating to navigate but advocating for ourselves is vital to helping others understand our needs. It typically takes disabled students too long to get their degree; I try not to allow that to affect me negatively as I am working towards a future I want with my schooling.
I am an advocate and an activist and am against the systemic issue of ableism. Ableism is discrimination towards people with disabilities, and the world is made for the non-disabled. I hope one day the systemic toxicity comes to an end, and we can all work together for a better future, one that is inclusive of everyone with disabilities. I create comics, I write daily, I am an advocate/activist, and I enjoy cosplay. Cosplay is costume play; it is an act of dressing up as your favorite character from a video game or a movie. I volunteer and advocate for people with disabilities. Disabled voices and rare voices need to be heard. The time for inclusion of all is now.
Life In The Bubble 