Imagine for a minute that you need to unplug your phone charger to bring to work with you. You reach down to grab your charger and you’re met with a tangled mess of wires from all of your devices, and all of the wires look the same. To top it off, now you’re late for work, sweaty, and the mess of wires is so tangled that there’s no hope of untangling them in the near future. But at least you have your charger.
This is a glimpse of what life is like with my brain. I was born with a disorder of the brain called Agenesis of the Corpus Callosum. There are several varieties, and mine specifically is Complete Agenesis of the Corpus Callosum (C-ACC). This means that I am missing the part of the brain that connects the two hemispheres together, and all parts of my brain are communicating with each other at all times, lacking the filter that the “typical” brain uses to send and receive information. July 2nd is World Disorders of the Corpus Callosum Awareness Day. Here is a piece of my story.
For me, C-ACC has brought along a host of other medical issues such as: Dandy-Walker Syndrome (affecting my cerebellum), vocal inconsistencies, abnormal joints and bones, sensory processing disorder, a pituitary adenoma (benign tumor on my pituitary gland), and so, so much more. I am also blind in my right eye, with nystagmus, or as I call it “shaky eyeball”, in my left eye- this seriously impairs my vision.
All of this has never stopped me from doing what I love to do and leading an independent life. I was fortunate that my C-ACC was caught as an infant, and I was able to access physical and occupational therapies at school to help me learn to navigate the world.
Living independently means that I have made so many adaptations, big and small, to ensure that I can get around safely and comfortably and fully participate in every aspect of my life. It’s not uncommon for someone to see me with my hand out, ready to grab a corner that juts out so I don’t hit it or to catch myself when I miscalculate the height of a sidewalk curb. Less noticeable is how hard I work to ensure that my voice isn’t too soft or too loud, how I regulate myself in crowds to avoid internal and external meltdowns, and how carefully I choose my clothing and physical interactions to avoid sensory overload- wearing the “wrong” shirt on the “wrong” day can leave me in agonizing pain for hours.
I didn’t start to embrace the word “disability” until my adult years. As a child and a teenager, I was held back from living life and trying new things because I was deemed “sick”, “incapable”, and “fragile”, on top of being exposed to levels of abuse nobody should have to endure. Inside, I burned with humiliation and anger because I knew there had to be more in this life for me than I was given. I didn’t consider myself to be “special” or “gifted”, or even -gasp- “an inspiration” just for getting up and wanting to try new foods, play on the playground, or go to school. I wanted to be known for my humor, loyalty, and willingness to try every new thing that came my way, and I decided from a very young age that as soon as I was eighteen and “old” (ha!), I would live my life to the fullest.
I am now twenty-eight years young and freer than I’ve ever been. I work full time, go to school full time, live independently, volunteer, have a partner of over ten years, and I love my life. And through all of this, I consider my disabilities to be part of me and not something that happened to me. I am thankful for my ability to make the adaptations I need instead of being resentful for needing them in the first place. I am able to ask for help when I need it without feeling shame for needing help. And I can and do help others.
Now, this isn’t to say that I don’t struggle. I do struggle- a lot. Especially when it comes to my medical needs. It’s almost impossible to find providers who have heard of my conditions or providers who are willing to educate themselves. Going into doctors, I’m often viewed as “too sensitive”, “too worried”, or “too much to handle” (I actually get this one a lot). Being my own advocate is an amazing and infuriating thing because I must prove myself time and again. I must go up against providers who think they know my body better than I do, and others who don’t want to take me on. This often leads to unwanted diagnoses and wrong information in my medical records, which are incredibly hard to get rid of because in my experience, doctors tend to trust other doctors over me.
All this being said, thank you for reading this piece of my story. Outside of a Facebook group, I have never met anyone with disabilities and medical conditions like mine, so I figured I would blaze my own trail. If I could leave you with one takeaway from this post, it would be this: there is life out there, and it’s what you make it. Not long ago, I read a post on Facebook about flowers. This post mentions dandelions and their ability to grow anywhere; even out of concrete. I refer to this post when I’m feeling less capable, and I like to think of myself as a dandelion- breaking free of my constraints and choosing to take what life has given me and continuing to grow, against all odds.
Alex is a Disability Resource Specialist at the Disability Resource Center in Salem. He is a writer, advocate, and enjoys spending time outdoors and trying new things. You can find out more about disorders of the corpus callosum at www.nodcc.org