The “I’m Sorry” Years

Middle school. For most of us these two words conjure up difficult, awkward, and cringe worthy memories that we wish we could forget. I must laugh at the reaction I typically get when I tell people that I’ll be teaching 7^th grade. Many people end up saying that middle school was the roughest time for them or that they were “so awkward” in middle school.

Middle school for me was a time of increased awareness and anxiety.

Gym class was always my worst nightmare in 5^th grade as that was the time when my physical challenges stood out. As part of a warm-up, we had to skip one lap around the gym. I hated skipping because I physically couldn’t do it. I couldn’t jump twice in a row on my left foot which was required for skipping. So instead of skipping correctly, I did my own version of skipping. I always ended up being one of the last people to complete the warm-up laps, which included jogging, karaoke, running backwards, skipping, and galloping. Sometimes I acted like I was tying my shoe and would skip one of the laps so I wouldn’t be so far behind. Some days I lied to my mom and said I felt sick, so I didn’t have to go to school because I just didn’t want to go to gym class that day.

During the time I was in 5^th and 6^th grade, more adults began asking the questions that classmates had asked me in elementary school. “What’s wrong? Why are you limping?” “What’s wrong with your leg? Are you okay?” To adults, I usually responded with, “Yeah, I’m okay. I was born like this.” To which they always responded: “Oh I’m sorry.” I never know when these moments are going to occur. One of my soccer coaches in middle school didn’t ask me about my limp until after our last game of the season. My 6^th grade teacher asked me months after the school year started.

In 6^th grade, I learned that I had a disability. After my IEP case conference, I read my annual IEP for the first time because I was curious. For the first time, I read words like “hemiparesis,” “craniosynostosis,” and “periventricular leukomalacia.” I kept these terms in my head. After learning that I had a disability and the name for it, I went to google for answers, but there weren’t many. When I searched hemiparesis, most of the results came back with sites for hemiplegia and cerebral palsy. But that’s not what I had.

While I found many YouTube channels and blogs by moms of children with physical disabilities – specifically CP – I couldn’t find a blog by a person with a physical disability. I hoped that if I could just find someone who shared the same experiences as me, I would feel better about myself.

Instead, I started feeling sorry for myself.

Going into 7^th grade, I thought that if I could make the school soccer team then I would feel better. But after only a few practices, I was cut from the team because I couldn’t keep up with the rest of the girls.

Finding out I had a disability in the spring of 6^th grade and not making the soccer team at the beginning of 7^th grade, made for my most difficult year of school. My self-esteem hit rock bottom. That year I didn’t play rec soccer in the spring because I was too scared. That year all I wanted was for my hair to be naturally straight because I thought that would solve my problems. That year I felt like the only people who cared about me were my friends.

In the spring of 7^th grade, I went to an optometrist for the first time instead of my normal ophthalmologist that I had been seeing since I could remember. The eye doctor prescribed glasses and recommended that I try patching my right eye two hours a day to help strengthen the muscles in my left eye.

I hated this. I tried getting the trendy frames to make me feel better about having to wear glasses, but that didn’t work. I still hated how they looked on me. Because my mom made me, I attempted to wear the eye patch for two hours a day after school. But I hated every second of it and took it off after only 20 minutes. I felt stupid. Inferior. After one of my sibling’s friends made a pirate noise at me while I was wearing the patch, I refused to wear it again.

Towards the end of 7^th grade, I sat in on my first IEP conference. During the meeting the school district representative asked whether I sat on the first or second level of the computer labs. I told her that I usually sat with my friends, so typically the second level. I thought that was a stupid question. As far as I could remember I could always easily walk up steps. I thought to myself “Why wouldn’t I sit on the second level if I wanted to?”

AND YET. She put in my IEP that I should be seated on the main level of any classroom that had two levels and I should be seated at the front of the class. There was no point in me being in that meeting if she wasn’t going to listen to what I said. (As I’m writing about this moment, I’m fuming because this still infuriates me to this day.)

8^th grade was a much better year. Although I didn’t make the soccer team again, I stayed on as a manager and made the best of the situation. I was the editor of the yearbook. I gained more friends and more confidence. Throughout the year I slowly began to accept that I had a disability.

That year in gym class, we simply had to jog for a set number of minutes as a warm-up. By the end of the semester I could jog a pretty steady pace for the total 12 minutes, and I ran a mile under 10 minutes for the first time that spring. I know that seems super slow to most of you, but that was fast for me. When it came to physical activities, I tried as much as possible to stop comparing myself to others and instead focus on beating my own self.

However, there were still moments that made me self-conscious because I still didn’t want people to learn that I had a disability.

In algebra class, the teacher told me I could take extra time on one of the tests if I needed it. Since I didn’t want to be treated differently, I rushed through the test and earned a D rather than taking the extra time and getting a better grade. I thought if I took extra time on a test that meant I was dumb. At the end of the year he had me take the ECA (End of Course Assessment) in the special education room, so I could use the extra time if I needed it. Again, I hated being treated differently than my peers, but it did make me feel a little better that another classmate took the test in the SPED room with me. It’s ironic because we ended up finishing our tests before the rest of the class, so we got to just hang out in the hallway and talk while we waited.

The difficult memories I have from those four years made me scared to teach middle school. But after working with 8^th graders last fall I realized I love the relationships that a middle school teacher can form with their students. Now I want to be the teacher that I needed as a 7^th grader. I want to make sure my students are given the opportunity to use their voice when it comes to their education. I want them to feel seen, heard, and represented. Most of all, I want them to know that they matter just as they are. I never want any of my students to feel as alone as I did during middle school.

In last week’s post I mentioned that children need to see themselves represented in the media and the people around them for children to believe that they belong in the world. On August 5^th, 2019 we lost Toni Morrison. Through her writing she allowed black people to feel heard. She empowered black people to speak up against the injustices that they face every day. She gave them the chance to be represented through her writing. Prior to writing this, I read a thread of tweets by a woman who said her black friend who was raised by a white family didn’t read a book by a black author until he read The Bluest Eye in college. According to the woman’s tweet, he told the class: “I didn’t know Black people could write like this” (@sjjphd via Twitter).

I will never know what it feels like to be a black person in America. But I do remember feeling so alone in middle school because my experiences as a PWD weren’t represented in the books I read, the movies I watched, or the blogs I could find on the internet.

Representation matters.

“I tell my students, ‘When you get these jobs that you have been so brilliantly trained for, just remember that your real job is that if you are free, you need to free somebody else. If you have some power, then your job is to empower somebody else.’”
Toni Morrison

The Elementary Years

Since this post deals with my experiences in elementary school, I thought I’d share my education timeline that I created for a graduate course last summer: https://www.tiki-toki.com/timeline/entry/1060748/Personal-Education-Timeline-of-Kimberly-Schultz/.

In contrast to the years leading up to Kindergarten, my memories of K-4^th grade are mainly positive as I experienced a lot of growth in those years. I graduated from PT before I started Kindergarten. I had the last of my three eye surgeries during the fall of Kindergarten. I stopped having to wear my orthotics during the day in 1st grade. And I stopped having to wear my AFO at night during 3^rd grade.

As the years progressed and I got older, I felt like I could blend in more with everyone else. Without braces on my legs, it wasn’t immediately apparent to people that I had a disability. I earned good grades and made friends at school. I played all sorts of sports, including soccer and tennis.

But every so often there were moments that punctured this sense of normalcy.

In 2^nd grade, a friend told me that one of our classmates said I was handicapped. Just like when the girl in preschool asked me if I broke my leg because I had a cast on my leg, I didn’t have the language to respond to that comment in a constructive way since I still didn’t realize that I had a disability. Lacking the knowledge and language to explain that I had a disability that made the left side of my body weaker, I responded by saying “No I’m not. Does it look like I’m in a wheelchair?” Today, I realize how that comment was ableist and regret having said it every time I think of this moment.

One time in 4^th grade as our class was lining up after a bathroom break, a classmate asked me if I limped because I broke my leg. This time I simply responded no.

One boy often teased me because of my gait. One time at lunch during 4^th grade, he was sitting next to me and asked: “Why do you walk like you’re crippled?” For a second I sat silently not knowing how to respond as usual. But I finally responded by asking “Why do you talk like you’re on crack?” I hate that I responded this way. In the moment, I was trying to deflect and save face in front of my friends, but there is no excuse for responding this way.

I remember someone once saying that you never forget the moments when someone said something to hurt you; and you never forget the moments when you said something to hurt someone else. They are right. The moments where my insecurities got the best of me and caused me to put others down have never escaped my memory.

Besides these rare moments, I loved school and I loved learning because it came easy to me. Academics were the one area in life that I could truly excel and feel confident about myself. Although I was always playing some type of sport, I was never athletic like my brother, and though adults always said I had the prettiest hair, I never thought I was pretty. All I wanted was to look like my sister with brown straight hair. Looking back now, I realize that I internalized this idea that if I couldn’t prove that I was smart, then it meant that I was worthless because I wasn’t athletic or beautiful. I would never admit that I was wrong when getting into a childish argument with my siblings because to admit that I was wrong meant admitting a mistake. Admitting I was wrong meant admitting weakness.

I titled this post “The Elementary Years” not only because it’s about my years in elementary school, but because those years were a time of simplicity for me. It was the time period in my life where I experienced the most surface levels of what it meant to have hemiparesis.

I no longer had to go to therapy, and I stopped having to wear braces to school. Yes, I still struggled with having to wear the AFO at night up until 3^rd grade, but most days I could still feel like everyone else when I was at school.

But I had yet to learn that I had a documented disability. I had yet to confront how having a physical disability affected me socially, mentally, and emotionally. I had yet to come to terms with the fact that I did not, and would never, run as fast as my peers.

It was a time of innocence and naivete for me. I thought since I stopped having to go to therapy and I stopped having to wear braces that I had “overcome” whatever made me different from others in the first place. That whatever it was, it was something that I simply grew out of in 8 years.

Reading posts from special needs moms about when their child asked the question: “When will I stop having cerebral palsy” or made comments along the lines of believing that they would simply grow out of their disability, makes me realize that this is probably common among those of us who have had a disability since before we can remember. The adults, and even older siblings, in our lives don’t wear braces or go to therapy. Besides the elderly, adults we see on TV don’t use wheelchairs, walkers, or crutches. They don’t even have a limp. If children with disabilities don’t see an older person who looks like them and shares their experiences, then it’s easy for them to think that people who are older simply can’t have a physical disability.

If a child can’t see themselves represented in the world around them, then it’s easier for them to believe that they don’t belong in the world as they are; that to belong in the world, they need to fit the media’s definition of what it means to be “normal.” In my case, I denied that there was anything wrong with me during elementary school. I hid from anything that suggested I was different. While at the time, it made me happier and seemed to make my life easier, hiding from my differences and my identity made things worse in the long run.

“Your memory is a monster; you forget—it doesn’t. It simply files things away. It keeps things for you, or hides things from you—and summons them to your recall with will of its own. You think you have a memory; but it has you!”
― John Irving, A Prayer for Owen Meany

The (Mostly) Forgotten Years

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

Why Asymmetry?

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