Jianna: To all the people who don't know what conditions you have and what they are, can you explain them?
Sarah: Firstly, I have Spastic Hemiplegic Cerebral Palsy. CP in General is caused by some sort of brain injury before, during or shortly after birth. Because of this, every case is different. For me, my CP affects both my legs and right arm. I can't walk or stand independently and up until a few months ago, my right hand was virtually useless. I was also diagnosed with (convulsive and absent) Psychogenic Non-Epileptic Seizures. They very closely resemble Epilepsy, but aren't caused by electrical disturbance in the brain. Instead, the disorder is commonly caused by an overwhelmed "fight or flight" response. I usually cannot talk for a while following a PNES episode, nor can I usually remember what happened during it. They can last for a few minutes up to a few hours. Again, everyone who has this condition is affected differently.
Jianna: And you've had a bunch of surgeries right? What was the worst one and how did you cope with it?
Sarah: Well, I've had 2 surgeries, both on my legs, but several procedures. I think - pain wise - my BOTOX procedures were the worst. This type of BOTOX is to lower spasticity and muscle tightness via a serious of shots. It was incredibly painful, because at the time, the doctors weren't comfortable putting patients under for it, whereas now, most do make it an option. I had the procedures frequently from a very young age up until I had my second leg surgery which made it possible for me to discontinue the BOTOX.
I remember my second leg surgery well. I was around 8. Actually, it was really the first time I felt jealous that I couldn't walk. At first, it was quite hard because my legs were in casts from my toes to my hips for about 8 weeks, and I was in pain a lot and tired. My family and friends supported me and helped me through it. When I came home, my parents took shifts at night if I needed to turn or get something. My mom and caregivers helped me with personal needs and my friends came over to play.
Jianna: That's awful. Did the shots hurt really bad? and Is it possible for you to learn to walk by yourself eventually?
Sarah: According to my parents who witnessed the procedures, it was one of the most difficult things for me to go through. I'd scream. I was tight (in the muscles) to begin with and being so young, it was hard for the doctors and my parents to fully explain why it needed to be done. Yes, with lots of physical therapy, prayer and hardwork, it is possible for me to walk independently one day. I use a walker for a few minutes at a time and have gotten more at ease with crutch-walking.
Jianna: That's nerve-wrecking must of been hard for your parents to watch and confusing for you .. That's awesome that you'll be able to walk one day .. What do you think will be the first thing youll do when you can finally walk on your own?
Sarah: I think I'd like to dance with my dad.
Jianna: That's awesome and adorable. What have you learned to do since you were little? Like, learning how to do things with your arm and your legs, and what do you hope to accomplish in the future?
Sarah: Oh wow! I learned to move my legs for the first time when I was four years old. Around that time I also learned how to sit up independently - before then, I needed to be propped up.
I'm also just starting to experience great progress in my right hand. In December 2013, I learned to open and close my fingers rhythmically for the very first time. I have many ambitions: someday, I'd really like to start an organization or foundation. I'd love to continue and grow in my public speaking opportunities, and I am currently writing a book inspired by my childhood experiences and hopes and dreams
Jianna: That's amazing! How do you feel about the doctors that have helped you throughout your life?
Sarah: I have deep respect for my medical team. I feel extremely blessed and privileged to be in a country that can provide such wonderful medical advancements
Jianna: definitely! I agree. It's amazing what these doctors can do! And what have you realized throughout your journey?
Sarah: I have realized that there's so much to be grateful for. I finally realized when I was 15 that Henry Ford was right: "Whether you think you can, or you can't, you are usually right."
Jianna: That is very true. What is it like during seizures? Have you ever remembered what happened and how you felt during it, after?
Sarah: It's kind of hard to describe what it's like for me to have one of my seizures. When they first started happening, I did remember most of what happened during each episode. I could actually communicate to my aids through fingerspelling. In middle school especially, the ambulance had to frequently come to the school and some students would remark about the way that I drooled all the way that my eyes rolled back. They didn't know that I could hear them. now when the episodes happen, it is very difficult to remember, and I can no longer communicate during them.
Jianna: The way you think is incredible and you have definitely made me realize that I should never take life for granted and be happy. That Is cool that you could communicate with them, I bet that helped a lot.
Sarah: Well, communicating was very difficult, actually because I'd finger spell extremely fast.
Jianna: Could they make out what you were saying?
Sarah: No, most of the time they couldn't, but they tried.
Jianna: And could you hear what they were saying?
Sarah: Yeah I could for the most part. It sounded like I was underwater.
Jianna: That is interesting. What inspired you to share your story and start public speaking?
Sarah: A little girl named Emma.
Jianna: Why is that?
Sarah: I remembered how at her age, I was dressing up like a princess too. But no matter how much I put on the costume, I never really felt like one. I thought princesses had to wear ball gowns and high heels all the time and move [gracefully] And yet, here I was, sitting in my wheelchair having pizza with a little Cinderella. I was wearing jeans that had holes in the knees from years of crawling around the house, and my boots were worn down from constant dragging. I was hardly a story-book royal; I was letting a seven-year-old hold a straw to my lips so I could take a sip out of pepsi can without spilling it on my lap. She had been so eager to help me and the visit really got me to think about how people define their worth and potential.
Jianna: That is so sweet. Lastly... Is there a message you want me to get in the paper [article]?
Sarah: Really, if I could have one quote sum up my life and what I wish people to remember is [a quote from] Maya Angelou: “I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel."
Jianna: Thank you so much for your time and patience answering my questions It was great talking with you. you're an amazing girl.