When you think of the word freedom, what comes to mind? A lot of things. Freedom can mean all sorts of things. And everyone has their own definition for it. You may be wondering though, “What does it mean to you Juliana?”
Well, for me honestly, it means having freedom to talk about my disability and educate others when they ask about it without feeling like I don’t know what I’m taking about. Yeah, at this point your wanting me to explain a little more, right? I will. I promise once I’m done you’ll have a better understanding of my personal meaning of freedom.
See, I spent a total of 16 years not knowing the truth about what had happened to me. Every time someone would ask what happened (it was mostly small children that would come up to me and ask) I would feel completely overwhelmed and reply with either, “I have a leg injury,” or just a straight out, “I don’t know.” I would also make up stories and give false information to adults who would ask as well. I would tell them, “I have a disease called Cerebral Palsy. If you get a cut on your hand and shake mine, you can catch it.” Then I would feel like total moron because I knew this wasn’t true. There was a whole lot more to the story, but we didn’t know how we could get the whole story.
At home, when no one was around I would be by myself on my laptop. I would spend hours and I mean hours researching and trying to understand my disability on my own. When I would type in questions in the Google search bar such as, “what is Cerebral Palsy.” Or just Cerebral Palsy, I clicked on the first few websites that came up, those websites were full of information and medical terms that I just couldn’t wrap my head around. Eventually, I gave up researching because Google wasn’t helping, and I wasn’t getting anywhere. Little did I know, a year into treatment for my anxiety, I would have to learn about it in a way I never imagined. So early into treatment, at only 16.
My therapist asked my mom and I if I had neurologist. We both said yes, we told her that I’ve been with her since I was first born and that I don’t go for regular checkups, only as needed. She looked up at me, “would you want to compose a list of questions to ask her. “She asked “Um sure.” I hesitated because I knew this was about to go somewhere I didn’t want to go so early in this treatment game. We composed a list of questions in 10 minutes. I was given the option of keeping the questions handwritten or I could take them home and type them up.
“I’ll type them up.” I said
My therapist ripped off the piece of paper that had the questions on it. She handed them to me,” I’m going to give you these to take home and type up.” I nodded my head as if to say ok. Then she looked up at my mom and said,” would you be willing to make the appointment.” My mom agreed.
My heart dropped in my throat,” yup this is going to a whole other level, and yes I’m scared.” I thought
We all spend the next 8 weeks preparing for this appointment. From telling each of us what we had to do to me practicing the questions every night (even though I could bring them in with me) I was also thinking the three of us could take turns asking the questions…. nope.
I was the one who was going to be asking the questions and talking to the doctor with my parents and therapist siting listening and asking backup questions if they had to. My heart was sinking now, being a sensitive person who cries a lot, especially when it comes to my disability, this was going to be hard. I was also told that the conversation between the doctor and I was going to get recoded- I really had to try to keep it together. How the heck was I goanna do this.
The day came. My anxiety was off the wall, my emotions were running extremely high and my nerves were driving me crazy-just what I needed. Driving up to the appointment I was ok, but when we walked in the office, it hit me for real.
I ‘m actually going to do this.
I can’t believe I’m doing this.
I also called my aunt every day, I would say to her “I’m going to the neurologist in a few days for my consultation.” Hoping that on the day if my appointment, she would call me to wish me good luck…. she didn’t, I kept waiting for that call during the 15 minutes we were all siting in the lobby doing updated paperwork, it never came through.
I didn’t show it, but deep down I was mad.
It was time for me and all of us to go in the room. I was antsy, not knowing what to expect. I mean yeah, I know she’s a doctor who knows her stuff and all that, but I still expected cheap, short answers to every single one of my questions.
I didn’t get those kind, though.
I got raw, honest, no crap and real answers to every question.
It still took every ounce of energy in me not to cry. Especially when she was telling my story.
After we were done though, I couldn’t help but still be mad at my aunt for not calling me. I had every right to be mad honestly, I called her every day and remined her over and over that I was going to this appointment and expected her to call me. She didn’t. Yet, she expected me to call her after I got out to tell her how I did.
I remember walking out into the lobby, burying my face in my therapist’s chest, I started to cry.
My doctor let me know something that made me forget about the betrayal and anger I felt about the fact that my aunt never called.
“Can I tell you something.” She asked
“um…. sure. “
“I’m proud of you.”
That’s it. After hearing that all my anger was washed away, and I walked out of the office happy/
It meant a lot to hear the doctor that I’ve been with since I entered this world say she was proud of me. Sometimes, you may think people aren’t watching you, but the truth is, they are.
Having the freedom to talk about my disability the right way has given me the ability to educate others when they ask, I feel like I know what I’m taking about now, I don’t have to sit at a computer for hours educating myself. When I talk about it now, it’s unreal to hear myself say it, even using the medical terms.
Don’t ever be afraid to go get educated by a doctor if you need to. It doesn’t make you dangerous, it doesn’t make you weak. It only makes you stronger as a person. And you never know who’s lives you will touch with your story one day. So, if you need to go, go! It will give you more freedom then you could ever think.