by Yolanda Diaz Escolastico, Marble Collegiate Church (RCA), New York City NY
I was a healthy 25-year-old when I began experiencing minor eye discomfort. I continued working full time and pursuing my education, but episodes of disorientation, dizziness, blurry vision, and falls became more common. At 27, I was devastated to learn I had multiple sclerosis (MS), an unpredictable disease of the central nervous system. As a Puerto Rican woman, I had never heard of MS, nor knew anyone with it. Today, 12 years later, I am happily married, hold a master’s degree in education, and have a 9-year-old autistic daughter, but MS has greatly affected my cognitive abilities.
In the community where I live, which is predominantly Hispanic, people don’t take cognitive difficulties seriously. Many think that individuals with cognitive impairments are relaxing or being foolish. Even though people in my community are aware of my MS diagnosis, many believe I’m not being honest.
Many people think of a disability only when it is visible. They forget that there are limitations that cannot be seen, and that’s my biggest challenge. Many tell me that I look fine, and others ask if I am really sick, but they do not understand the struggle I carry within. Some family members and friends ignore my daily challenges because they fail to recognize my cognitive limitations. Long are the days when everything seems gray and my mind disconnects from my surroundings. Days of confusion, failing memory, and even forgetting where I am standing all lead to concern about my future.
I had visible symptoms when I was diagnosed in 2008. I used a walker and needed assistance getting dressed and eating. Many of those physical impairments have improved, thanks to helpful doctors, medication, therapy, and family support. Even though I still have home care assistance and use a cane for support, many still have the impression that MS is not serious because I look fine to them. My ethnicity is a factor that contributes to a sense of discrimination. It would be so much different for individuals with cognitive impairments if the community took this issue more seriously, but my culture does not.
Cognitive deficit is real and so is the oppression I feel. If people took the time to learn about the invisible symptoms many live with and showed compassion, this oppression could be avoided. My sincere desire is to be fully included in a community that understands invisible limitations like mine that are often unseen and difficult to explain.