Trying to Have People to Understand What You Go Through.

March 29th, 2016, 11am

It was 8°C with broken clouds. The breeze was gentle.

I am supposed to wear an AFO every day. An AFO is a brace that holds my ankle at a 90-degree angle and it’s super uncomfortable. I stopped wearing it a few years ago and as a result, my ankle is a mess. It’s now so tight that it won’t bend to 90-degrees and my foot is never flat.

A few days ago my foot was at a really strange angle and it hurt so I put on my AFO. Since the style now is colourful leggings I pulled a pair over my leg brace. I then realised something, it wasn’t as uncomfortable as it normally was and it took me a minute to realised why. I wasn’t wearing stiff skinny jeans over the brace today, so it wasn’t compressing my leg at all.

We had company over for Easter Dinner that day which consisted of my aunt and cousin. After dinner, my parents and my aunt were discussing their different growing old pain. They were 10 minutes into a complaint contest about their back, foot, and neck pain, and forgetting things and I was just sitting there listening and drinking my tea. Suddenly my mom looks at me and goes “We really shouldn’t be talking about this in front of you should we.” My aunt then asked me if my medical friends and I ever discuss our pain and craziness. I just said that if things catch on fire then explode, then and only then we will discuss it. The rest of the time we talk about regular things. I was then asked to give an example of an explosion. I stood up and said “When someone dies or gets too close to dying. That’s when we discuss it” I just laughed because people have always done that to me. Complained about a sprained ankle or snoring, and I’ll be in the corner praying that I could run fast enough to sprain my ankle, or breathe normally to have snoring be my biggest problem. The fact that she acknowledged it was new, though. It normally goes ignored.

I was sitting on the floor talking to my mom later in the day and I tried to explain why I was so excited about the leggings. She just laughed at my excitement. It wasn’t a cruel laugh, it was a good-natured kind of laughing at my giddiness and it didn’t bother me because I probably sounded goofy. When she calmed down I looked at her and said: “You know, if a child is born with medical and physical problems, they should make the parents where and use and devices that the kids use, so the parents would better understand our complaints.”

My mom never got my complaints. My belief is that if a parent is forced to use the same devices and be told the same lines of “It’s good for your health”, “You’ll stand better if you keep it on, you can keep up with the other kids if you keep it on.” My favourite is “We’ll give you candy.” It was all lies. Nothing worked. At the very least it kept it from getting much worse. If they knew what we went through, maybe they’d better understand us. They’d get why we are tough, yet complacent.

Trying to get understanding is all I want in life. I don’t want to be judged because my spine bends, or I don’t breath, or because I don’t eat. I just want my different experience looked at and thought that she has something to add to this conversation don’t ignore her or her story. That would be understanding.

Victoria and David Wade said thanks.

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Mariah Hillis

History buff living with chronic health problems. Lives life to the fullest, and dreams the biggest dreams, despite not being able to breathe in her sleep.

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