All of us that have different types of disabilities at some point have gotten questioned by people. Questions such as “what happened to you or do you have an injury to your leg.” From small children or adults, right? I have. When small children come up to me and ask what happened, I don’t use the knowledge I gained or the fancy medical terms I learned because most are too young to understand, and the parents don’t want them to know yet, so I just keep it short and sweet.
As for the adults, I advance it. I say almost everything I remember……. or at least I try to.
When you get questioned especially by small children it’s hard. You want to tell them everything but then the parents come up and pull them away. I used to get nervous sometimes telling people because I used to make up stories that weren’t even true and give false information that wasn’t even right. I used to sit on my computer for hours at a time when no one was around researching my disability trying to understand, but eventually I gave up because google wasn’t helping much and trying to understand everything I was reading was giving me a headache.
The other day, a friend offered to take me to the bathroom. We were just walking and talking about different things. Then, she asked me an unexpected question.
“Jules, why can’t you walk.”
I was shocked and started to feel overwhelmed thinking of what I wanted to say in response. I knew she was curious and that’s ok, but I didn’t expect her to ask the question. Finally, in response I said cheerfully, “I can walk.”
She asked,” Do you use a walker because your legs hurt or something.”
I was ready to give a cheap one sentence answer. I honestly didn’t feel like explaining the whole story, but I knew she was curious and this was no time or moment to be cheap with my response. So, I took a breath and waited a few minutes to gather my thoughts. I found the courage at last and said an answer that even shocked me after saying it.
“I had a stroke coming out. and you know those nerve endings that attach to your neck? Mine stayed open and eventually caused my bran to bleed out. I suffered from a brain bleed called Periventricular Leukomalacia, it’s short for PVL. That’s the brain bleed name for Cerebral Palsy. I’m very able bodied, I just use a walker because my balance is bad.” Yup, that was me everybody, telling my story the right way with no false information or lies. I shocked myself a little, I couldn’t believe I just said that. I was so proud of myself.
Three years ago, I wasn’t educating anyone. I was in my doctor’s office, a nervous and anxious mess trying to keep myself together to be brave and strong to get ready to learn from an expert. I’ll be honest, I thought about backing out of it at the last minute, the way my body mind emotions and anxiety were reacting to the 7 to 8-week preparation process and all the things we need to do to prep for this appointment, it made me feel like I truly wasn’t ready to face the reality of my disability or what happened to me at all. But I’m so glad I went and did it. Without that informative appointment and my doctor’s knowledge I don’t think I’d be where I am right now.
Yes, there were times during the preparation process where I lost sleep, I cried, and my anxiety took over, but I’m still so glad that I went and learned the right way!
Parents educate yourselves. Don’t think your stupid for going to a doctor to learn because you don’t understand. Don’t think you’re a failure. The knowledge will come in handy. And you will be able to use your knowledge to educate people like my friend on your child’s disability. I promise it’ll be worth going to a doctor as doctors give you more knowledge on things then the internet does. So, if you need to go, go! Do it for yourself and the well being of your children!