Of all my posts, I have a feeling this will be the most difficult one to write. I’ve struggled with figuring out how to write about the period of my life that I can barely remember.

I find it both frustrating and creepy that people who’ve known us since we were born know more about our first few years of life than we do ourselves.

Most of us don’t remember the day we took our first steps.

Most of us don’t remember the day we said our first word.

We don’t remember our most significant physical milestones. ­­­­­­­­­­­­­­­­­­­­­­­­

Personally, I wish I could know what it felt like to be in the room when my parents received my official diagnosis. I’ve read several blogs/social media posts by special needs parents who explain what they went through after receiving their child’s primary diagnosis. I’m sure that my parents shared a lot of those same feelings. But I wish I could have been there to hear how the doctor gave my parents the news. I want to know the exact words he used to explain the diagnosis. I want to know the exact words he used to explain my prognosis.

The memories I do have of the first five years are consumed with physical therapy and medical procedures. Throughout these early experiences, I was not the “brave” little kid with a disability that the media enjoys showing at least once a week to make people feel better about their lives.

I hated getting fitted for new orthotics. One time my mom bribed me with candy so that I would be good and cooperate for the orthotist… luckily that time it wasn’t my regular orthotist and since I thought the new man was cute I gladly cooperated.

At night, I had to wear an AFO with a knee immobilizer on my left leg to stretch out the tight muscles in my calf until I was about eight years old. The brace forced my leg to be entirely straight. Just like the orthotics I had to wear during the day, I hated wearing it. Most nights I either went out to my mom to complain the brace was hurting me and sometimes she would let me take it off; or I would choose the sneakier route and just take it off once she left the room.

I hated going to the eye doctor and to this day I still prefer the dentist over the eye doctor any day. I remember going to the eye doctor and refusing to cooperate when they had to put eye drops in to dilate my eyes. My mom ended up choosing my glasses for me because I didn’t want to wear glasses at all, so obviously I was not interested in choosing a pair myself.  

I remember getting my second set of Botox injections to help decrease the spasticity in my left calf. Honestly, I don’t know why anyone would choose to get Botox injections in their face of all places because that is the most painful injection. Shots don’t bother me now because in my mind, nothing is worse than Botox injections. Whenever I hear or read the word Botox, I just flashback to lying down in the doctor’s office and crying in pain as they injected the toxin directly into my muscles.

While these memories of the first five years are vivid, they’re also filled with the pain that I felt during that time. There was so much I didn’t know or couldn’t understand at that age. I didn’t know why I had to wear orthotics every day. I didn’t understand why I had to go to PT while everyone else I knew didn’t. I didn’t know why I had to wear a cast on my left ankle for a few weeks when my leg wasn’t broken. I remember another girl at my preschool asking me if I broke my leg because I had a cast on and all I could say is no because I didn’t actually know why.

In retrospect, I realize just how unhappy I was for a child that age because I couldn’t comprehend why I was treated differently than others. That’s why it frustrates me so much that I can’t relive these moments with the understanding and perspective I have now.

What’s most frustrating is that I don’t know exactly what caused the brain damage. My mom said the doctors told her I may have had a stroke (the most common cause of hemiparesis/hemiplegia), but the neurologist who confirmed my diagnosis wrote in the report that the damage was more consistent with a brain infection. As someone who constantly goes to Google to look up the answers to my random curiosities, not knowing the answer to the question of what damaged my brain will always bother me.

The most significant challenge with having a physical disability is typically not the physical impairments themselves, but the mental health problems that are caused by the stigma surrounding disabilities. While my disability affected me physically in many ways when I was younger (and still does to a lesser extent), this post highlights that starting at the age of 5 or even younger, I struggled with my self-image. I hated my body. I thought I was ugly because I had to wear braces. Later I will write a post dedicated to my mental health struggles, but I hope this post shows that while you may think the child with a disability is “inspiring” or “brave” simply because they are walking with a walker or leg braces, they may be fighting a much larger battle against their own thoughts.

I want to end this week’s post by putting in a prayer request to those of you who pray as part of your faith.

I follow many special needs families on social media, and one family I’ve been following for a couple years just experienced a major heartbreak with their daughter, Evanna. Evanna has a congenital heart defect that cannot be treated or cured with a heart transplant. Within the past year they traveled to Stanford twice to have two open heart surgeries that were meant to significantly improve Evanna’s quality of life. While both surgeries seemed to be a success, the family just learned that Evanna no longer has blood going to her left lung, meaning that only her right lung is supplying oxygen for her body. You can follow their journey on Facebook: https://www.facebook.com/theirvinehome/ or Instagram: @kierrairvine. Please keep them in your thoughts and prayers. Evanna’s mom is specifically requesting prayers for guidance and peace.

“I can only note that the past is beautiful because one never realises an emotion at the time. It expands later, and thus we don’t have complete emotions about the present, only about the past.” 
― Virginia Woolf

For those of you who know me, you are probably wondering why I used a term typically associated with math or science as the title of my blog. But asymmetrical is a fitting way to describe life. Life is not even. Life is not equal. When we’re excelling in one area of our lives, we’re struggling in another area. Life is not organized into equally designed parts. Life is messy and filled with asymmetries.

This title describes my life particularly well because from day one I’ve experienced asymmetry. The bones on the right side of my skull fused together too quickly leading to a condition called right coronal craniosynostosis. Although I had surgery at four months to correct this, my skull has never been symmetrical.

I have a disability called left hemiparesis which means the left side of my body is weaker than the right side – from my toes to my eyes. As I’ve gotten older, I’ve become more aware of these asymmetries. Since high school I’ve been self-conscious of the difference in the size of my calves. My right looks muscular whereas my left is scrawny. My second year of college, I started focusing on the fact that my left eye wanders outward, especially in photos and late at night.

Lately, I’ve been focusing more on the size of my calves than usual, which inspired me to start this blog. Once someone told me that I should go to the gym to build more muscle in my left calf. Oh, if only it was that easy. Once I had a guy on the street say to me as I was walking by him: “Hey miss! You need to pull that foot up more!” (I’m sorry but don’t you think someone who looks about 20 years old would walk like a typically developing person if they were physically able to???) Anyways, moving on. Within the last year I’ve been able to start shaving my right leg in the shower while balancing mostly on my left leg AND without holding onto the wall or a railing. THIS IS A HUGE DEAL FOR ME PEOPLE. Before this I always thought I’d have to hold onto something while I shaved my right leg. Once I realized I reached this milestone, I was super happy for myself. It meant that my left leg was the strongest it has ever been. But I felt there was no one to share in my happiness and celebration.

Moments like these, where I remember most people don’t know what it means to live life with this type of disability, motivated me to start this blog and share my story. I don’t want pity. I want understanding. Most of my life I’ve felt off-balance – often literally as balance issues come with having hemiparesis. As someone with a semi-visible disability, in certain areas of life I can blend in with people without disabilities, but in other areas I can relate more to persons with disabilities (PWD).

This won’t be a blog just about my life with a disability. As someone who loves reading, I will talk about literature and maybe even review some of the books I’m reading. As an English teacher and someone passionate about public education I will write about issues in education and maybe share some of my lessons that went over well with my students.

[My first few posts will summarize what my life has been like so far as someone with a documented disability, but after that it will be more random; some posts might be book reviews/literary analyses while others will be my thoughts on education, disability rights, faith, and other issues that are important to me.]

“No human face is exactly the same in its lines on each side, no leaf perfect in its lobes, no branch in its symmetry. All admit irregularity as they imply change; and to banish imperfection is to destroy expression, to check exertion, to paralyze vitality. All things are literally better, lovelier, and more beloved for the imperfections which have been divinely appointed, that the law of human life may be Effort, and the law of human judgment, Mercy.” ― John Ruskin