People judge me regularly as a fraud. I understand their confusion but, it’s not OK to make a snap judgment.
One day, I may be seen walking around a local store and the next, I’m in my wheelchair. Sometimes, I have trouble just sitting up, and can’t even hold a cup of water independently to take my medication, but other days, I can walk for 10 minutes at a time – if I’m lucky.
Over the last few years, I have received dirty looks, threats to have the police called, and my car spit on — all for using disability parking spots. Little do they know it’s usually a struggle for me just to walk the 200 feet from the parking spot to the door. My debilitating experiences often create a frustrating existence for me, and I’m extremely sensitive about other’s snap judgments, but I don’t let these judgments get me down.
My sometimes invisible, but always debilitating condition is called congenital myasthenic syndrome (CMS), a hereditary disorder of the neuromuscular junction which causes extreme muscle weakness. In other words, communication between my nerves and muscles become impaired limiting the ability of my brain to control muscle movements. CMS is a rare disease and is often misdiagnosed. Surprisingly, it took a handful of near-death respiratory episodes (similar to what is known as a “myasthenic crisis”) to finally receive my diagnosis at 11 years of age. As a toddler, my older brother was diagnosed with mitochondrial disease, so when I began showing the same symptoms, I was prescribed the same treatment. We were both later diagnosed with CMS, and mitochondrial disease as a secondary diagnosis.
Having two children with the same incurable disease, my parents were adamant about teaching my brother and I to thrive, and that’s exactly what we’re doing. I am currently a junior at the State University of New York at New Paltz studying to become a speech-language pathologist. I live in a dorm and I’m active on campus as both with the Disability Resource Center and as a member of the Delta Alpha Pi International Disability Honor Society, as well as with the Myasthenia Gravis Foundation of America. Despite all the challenges before me, I’m learning how to live independently and inspire others with the help of a few friends.
Together, my friends and I are also hoping to make a difference for other people with sometimes invisible conditions. One friend, Brandon Worden, who is also my boyfriend, is an aspiring filmmaker whose sister is also living with an incurable condition, called neurofibromatosis type 1. Brandon, along with a team from school, directed, filmed, and edited a documentary about my life titled, “Juliana.” The film beautifully demonstrates how the support of loved ones makes me stronger. My hope is that it will allow others to better understand the challenges of CMS and other sometimes invisible disabilities.
Even though we all know that appearances can be misleading, it’s not easy being judged after a quick glance.
I have needed the assistance of a power wheelchair full-time since I was 8 years old, so on the rare occasion you see me walking a few steps, be happy for me.
Don’t shame me.
And if I attempt to walk into a store without a wheelchair, please don’t spit on my car.