My Journey with Spina Bifida

Photo of woman with light skin and light lavender straight hair with striped dress and Disability Resource Center lanyard around neck

By Abby

I remember walking through the crowds of people trying to get to somewhere safe. It was 1999, and war had just begun in my beautiful homeland of Kosovo. One of my clear memories  is sharing a tent with other families at the refugee camps. I remember seeing hopelessness, desperation and yearning for safety. My family was fortunate to get chosen to leave.

 We ended up moving to Dorchester, MA. Our hostess Sara was an angel. Sara made us feel welcomed, taught us everything we needed to know about the “American ways,” and then let us leave to find our way. Being diagnosed with Spina Bifida, I was fortunate enough to land in a city that had the best medical care. I had to undergo two major back surgeries as early as fifth grade. I had to wear a half body cast and use a walker. Due to the amount of time I was on bed rest, I forgot how to walk. I am a fighter though and pushed myself until I was able to walk again and hold myself up straight.

I was able to obtain a bachelor’s degree in Social Work at Salem State University. There were many gaps in campus accessibility, and I spoke up and advocated for my rights. I made sure that my educational experience was comfortable and doable.  After college I began to work as a Social Worker. A lot of the work requires travel from city to city. At the time, I was driving a car that was not accommodating. I did some research and found Mobility Works; they modified the car to my needs. It was the best thing I ever did for myself. It took patience, a struggle and ongoing persistence to accomplish.

When your image does not fit the able-body image, society is not sure how to react or what to say. During my younger years, I experienced a great amount of bullying, from mocking to kids saying the most hurtful things. During those years, I experienced severe depression. I wanted to end it all, I wanted to be free. I remember sitting in my sister’s room, taking a knife and sliding it across my thigh. I wanted to cut away all the pain, I needed to release it. The next thing I know, I am checked into an Inpatient hospital unit for being suicidal.  My parents were confused, they were not sure what to do or say. They just heard their daughter almost killed herself. I grew up in a culture where we don’t talk about feelings, we don’t talk about mental health, we hide everything and act like everything is okay. But everything was not okay, and I was not okay, but I understood why my parents reacted in the way that they did.

After my hospital release, I continued therapy and have been in therapy for 10 plus years. During this period, I learned to acknowledge that I have a disability, and that it is okay. My disability is part of me, not all of me. I allowed myself to feel, to love and to let go. It was during this time of my life I turned to modeling, which has been my outlet. It has allowed me to feel beautiful, as a worthy woman and most importantly, it has allowed me to be my most authentic self. Through all of this, I became the woman I aspired to be. To my younger self, I am sorry you went through all that pain, but thank you for choosing to stick around.  To my self today, I am proud of you. To those reading this, I hope you never give up. I hope you find your light. I hope you enjoy this crazy thing we call life.

Abby is a Disability Resource Specialist at the Disability Resource Center

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