September is Childhood Cancer Awareness Month and the week of September 23rd-September 27th is Deaf Awareness Week. Junior Ashley Whigam shares her story all the way from losing her hearing to cancer during infancy through being a deaf student in high school.

I was born into the world as a normal baby. Everything was fine until I turned nine months old, when my parents noticed my eyes were oscillating. And things fell so downhill from there. I was diagnosed with a brain tumor. My tumor is right next to my pituitary gland, and right behind my optic nerve. In other terms, it’s smackdown right in the center of my brain. So yeah, pretty crazy right?

That’s exactly what my mom thought when she was told her third kid had cancer. I mean I would be totally at a loss for words if I was expecting my third kid to come out normal like the other two, only to have it blow up in my face. She was very sad and devastated. She blamed herself and thought of everything she could have possibly done wrong during her pregnancy. My dad was just as confused as my mom. He was very very sad, and he was also confused about why this was happening. My parents had the choice to take my tumor out, but I would go blind. So they chose the hard path: keeping it in and doing chemotherapy. It was never an easy choice, but they just had to put in the effort to make it the best one. And there were also the side effects of taking up chemo to count, like hair fall and fatigue (I had also taken up a diagnosis dizziness and giddiness test), but in all, I considered myself fortunate enough to be given chemotherapy.

I started my first round of chemo before my first birthday. Every week for 18 months. I went to the hospital. I had my blood drawn and then I saw the doctor. If my blood levels were low or something was wrong, I would have to get a whole bag of blood put into my body. That sounds kind of creepy, right? I had someone else’s DNA put into my body because it was so low and was not able to produce it by itself. Yeah, that’s messed up.

But what’s even more messed up is that we would be at the hospital for eight to 10 HOURS! I know sitting in a classroom for eight hours a day is boring. But can you imagine sitting in the hospital surrounded by the smell of chemicals with nothing to do? And the fact that the only friends you have with you are the doctors and nurses you have gotten to know ever since you started chemotherapy. Not to mention your lunch is a bag of crackers or an apple almost every day.

Since my tumor was in the center of my brain, my vision is messed up. I literally cannot see ten feet away. When I was younger, I had a lazy right eye. In order to make my lazy eye stronger, I had to patch my good eye with one of those giant sticky eye patches. It’s like wearing a giant Band-Aid over your eye and not being able to see as well. It ripped off some eyelashes and eyebrows when I took it off.

As for my hearing, the chemotherapy medication I took damaged my hearing. It was supposed to help shrink my tumor and it did for the most part, but it did more damage on my ears than my brain. So when I was three years old, I got my first hearing aids. And when I say they were ugly, they were UGLY! My ear molds were blue with streaks of yellow and red. As for my aids, they were the darkest shade of gray you could ever imagine. Think stormcloud gray times darkness a hundred times. 

In kindergarten, I started my third and final round of chemotherapy treatment. I went to Brook Park Elementary School. While it was a small school, the support and love from all the teachers there was anything but small. By this time, I had hearing aids to help me hear normally at home and in public. At school, both then and now, I have an FM system, which is basically a little touch screen on a necklace with microphone receptors. My teachers wore it then — just as they do now — and the receptors transmit whatever sound bounces off of them to my hearing aids so I am able to participate in class.

My FM system does grab peoples’ attention, and yes, I do get stares and lots of confused faces. From kindergarten to now, kids will always be confused. It’s not like everyone comes into the world knowing what hearing aids are the second they see them. Brook Park Elementary also put tennis balls on the bottom of all the chairs in my classroom so they wouldn’t scrape the floor and hurt my ears. They let me eat a snack and let me take a nap in the office whenever I needed it since I was so sick and tired half the time.

Making friends was hard but it was also kind of easy. Since we were so young, no one knew what it meant to be deaf or have a disability. So people did not know how to act around me or how to speak around me. But at the same time, it was so easy purely being a kid who did not know what it was like to judge someone. It was so easy to run around and play with people who didn’t care if I was deaf or not. When I was seven, I was in first grade. And after all the years of pain and crying and laughs and smiles and time-consuming appointments, I was officially cancer-free!

But that did not make my life any less hard. 

As I went through elementary school, people started to learn more about my hearing loss. Not being able to hear other students and not knowing what is going on became harder and harder for me. It became harder for me to make new friends because people didn’t understand what it was like to be patient and calm. They just wanted to be energetic and wild. I still had a good group of friends that understood what I needed and they were always including me and making me laugh. 

Things were quite normal for me up until fifth grade when it was revealed that I was super underweight. I weighed only 40 pounds. Yet another problem! I was told to stuff as much food in my stomach as possible to try and gain some weight. But did I do that? Kind of, I guess you could say. Don’t get me wrong, I LOVE food. Like, duh, who doesn’t? But the pressure to eat so much lead me to not eating as much and not gaining as much weight as my family planned, so I ended up getting a feeding tube.

Have you ever swallowed some spaghetti or eaten a mozzarella stick only to have the cheese or noodle get stuck in your throat? Yeah, that’s what it feels like to have a feeding tube. The tube goes through my nose, down my throat, and into my stomach. I know it’s gross. It’s almost as gross as the cans of liquid formula that were pumped into my stomach three times a day. It smelled like condensed milk that had been left open for way too long and was starting to rot. I had my tube for a few months so not a very long time. And yes, even though it was as disgusting as it was, I gained 20 pounds. 

So middle school, the time where you learn that you switch classes every hour or so — and you may be thinking, “Oh no, that’s got to be hard!” — well, news flash! It was stinking hard! I no longer had the same teacher all day in the same classroom. I now had seven new teachers and seven new classrooms filled with at least seven new faces per class. But that didn’t stop me from figuring out a way for me to adapt and learn the best way I possibly could.

One of my hardest struggles (and still is) was hearing all of my male teachers. Here’s the thing: if you are female, your voice is likely to be lighter and airy and so easy for me to hear. Now for males, their voices are as deep as a hollow endless void… AND I CAN NEVER UNDERSTAND WHAT THEY ARE SAYING! This was THE hardest thing for me in middle school

I never had a single male teacher in elementary school. In middle school, I HAD AT LEAST THREE PER YEAR. And it was SO HARD for me to understand what we were learning. For example, one of my social studies teachers talked a lot and his voice was a deep void that creates words and sentences I COULD NOT HEAR! So how did I learn about Napoleon and those crazy Russian guys? I had to have a teacher’s aide take notes for me on basically everything my social studies teacher said. A real pain it was! Most of my other male teachers were more than happy to take time in class to explain things to me and help me understand. That was all I ever needed to help me get through middle school.

I bet you forgot about my tumor now, didn’t you? It was back and causing me problems again! Yay! Again, my tumor was RIGHT next to my pituitary gland, which is in charge of sending messages to your body to grow and produce puberty hormones. My tumor was such an inconsiderate monster it decided to smash my pituitary gland system so now my body cannot produce hormones on its own. The solution? Growth hormone shots. Every. Night. In my stomach and in my lower back, I was poked and poked every night just so I could grow? Sounds like it should have worked, right? BUT NOPE! It did not! So after a year of being poked and stabbed my mom and I decided no more. To this day, I have to take estrogen pills every night. Not so bad but I do not outwardly appear up-to-date on my age and appearance either.

And now here we are! Present time! So what is it like to be a deaf high school student?

First off, it is hard. It is hard to hear and hard to make out what people are saying, especially in group conversations. It is difficult to hear videos and movies played in class, especially those without captions. Are you kidding? High school is just straight up hard! It is harder than it was in elementary and middle school!

No, it is not any different from going to class to class like in middle school, or having five male teachers a year. But in some ways, it has gotten better. In addition to my FM system, I now have a pass-around microphone! It’s basically a regular mic that is used in the auditorium when people are talking. Except it is for me. I named her “Carrie” as in Carrie Underwood. And Carrie makes me feel like I am part of the class and it helps me hear everyone clearly. Freshman year, I had Mr. Helgeson for English, and that was the only class I used it in.

It was always such fun when I would ask the class, “Who wants to be in charge of Carrie today?” So many of my classmates would get so excited to be in charge of going person-to-person with Carrie, making sure I could hear them. There was this one boy in my class who sometimes had a hard time concentrating, so more often than not, I would go to Mr. Helgeson before class and say, “I think he should be in charge of Carrie today,” and Mr. Helgeson would agree.

Sometimes when you have certain needs, you become hyper-aware of others and their needs without thinking about it.

It is still hard to make friends in high school, but the ones I have are the best and most special ones. When I was younger, I was never exposed to American Sign Language, so I didn’t know how to sign or how to communicate using a language that was made for me and the over 1 million Americans who know ASL. That was true until I met Annalisa Cinkay. She is the most caring, patient, and loving person I know, and when she found out that a deafie did not know anything about ASL, she immediately started making me watch YouTube videos with her and practicing with me. Soon I learned, and as I was learning with Annalisa, I started to bond with the lovely Sam Buoscio over how amazing signing is. I am forever grateful for these friends. Annalisa and Sam, thank you for exposing me to the art of signing and helping me learn something so fun and beautiful that I can use to help make every day a little easier for me. 

In high school, people are more educated and knowledgeable about what a disability is, but man… people are SO JUDGEMENTAL! Why are you judging me because of my disability? Why do you think it defines whether or not you should associate yourself with me? I am not insecure nor am I ashamed and try to hide it from people. I NEED people to know that I indeed have a disability and I have trouble hearing. Heck, if I didn’t they wouldn’t know and how would I be able to hear them easier?

Sometimes I think that people don’t want to be friends with me or just don’t want to talk to me because I need “special treatment” or they have to do certain things around me, and that is the biggest misconception someone can make about me. The only thing I need from people is time and patience. I need people to give me time to figure out what they are saying and to be patient with me. Sometimes I need people to repeat themselves once or twice or say something slower, but I do not need to be treated a specific way. Ultimately, I have learned that there are going to be people like that everywhere and there’s nothing you can do about it.

But what I can do?

I can appreciate the friends I have, appreciate the ones who have stuck by me through the years, appreciate the ones who have taken the time to get to know me and accept me for who I am, appreciate all the people who love me, and because of them, I am not ashamed or insecure. Why would I be ashamed? Yes, I am slightly broken and different from you, but it is who  I am. Why should I be ashamed of how God made me? I am His creation, and to Him and so many others, I am perfect. To those who judge me, your opinion means nothing to me. Why? Because I love myself too much to even care about what you think. 

Being deaf isn’t the greatest thing in the world. Sometimes I do get sad and I think, “Out of a million people why me?” and yes, sometimes I do wish I was a normal teenager with perfect hearing who doesn’t feel left out of every group conversation ever. But being deaf does have some benefits, such as turning your hearing aids off when you do not want to listen to someone. Heck, we have a whole separate language for us deafies to communicate with each other like secret agents. Not to mention the fact that we can customize our hearing aids however we want. 

And yes, I am someone who has been through a heck of a painful ride. But I BEAT CANCER! And yes, it was all worth it! The point is: yes, I am deaf and I have health issues. Yes, sometimes it sucks. But it is part of who I am. I am not embarrassed or ashamed to say I am a deaf cancer survivor. In fact, I am proud. I am proud of myself for how far I have come in this difficult world. I am proud to have a great group of friends and family that love me even though I am different from them. I am proud to have so many supportive teachers and administrators here at RB who will always support me. I am proud to be part of a school and a community that treats me as someone who isn’t defined by my disability . I am proud to be able to write and share my story.