Becky was born with a rare genetic disorder called Neurofibromatosis (NF). This disorder causes tumors to form on nerves anywhere in her body causing chronic pain. Since nerves conduct sensory information to all parts of the body, she is constantly in pain. She has experienced more visible deformities with the craniofacial neurofibromatosis as she has had tumors removed from her head and face, which has also impacted her vision.
She is really thankful that she hasn’t needed to make a lot of changes to her home to accommodate her needs physically, but shares a wealth of information and tips on how to interact with people who look different and have chronic pain.
Location: Lyndhurst, Virginia, United States
Watch the interview:
Notable quotes from the interview:
When people have a disability and have pain, a person doesn’t have to stop their life because of a disability. They can still live and enjoy life… yeah it slows you down, but it doesn’t stop you.
One big thing that I’ve always wanted is for the community not to judge. I think the community in general has a habit of judging people before they actually know people… they don’t see people beyond their looks… and it’s not just me, they see me with just one eye, they see a person in a wheelchair, they see people on crutches, they see people with Down Syndrome whatever… they don’t see beyond that and they don’t give the person a chance of doing things. They could look at me and say okay, “this person doesn’t look like she knows quite what to do,” but they don’t know that I have a Master’s degree in Special Education without talking to me. They don’t know how good I am at it unless they give me a chance.
When people, anyone, comes up to a person with a disability, I would encourage a person to look for a person’s ability, rather than their disability, and see beyond what is on the surface. Like with me, see beyond my eye blindness and see what I can actually do. Look beyond people who are in wheelchairs, who are on crutches, who have chronic pain… they can give a lot of good advice, they can do a lot of cool stuff.
I read I like to make cards, arts and crafts. I also enjoy participating in Okinawan Karate and swimming.
I’ve been to Alaska by myself and I’ve been to, I was at a conference not too long ago with the worship team and, yeah I had two days or two times where I just was just like in agonizing pain, but you know, worship team is just so good how they help and were just supported there, but I had a really good time.
You know, I’m 38 years old, I think I can go by myself going across the country. You know I like to do those things. You know. Like, If I’m going to hurt, I might as well have fun while hurting, you know.