my story, my song

My Story, My Song.png

I spent the past week at one of my favorite places in the world- I went to camp. Throughout the entire week I heard messages and devotionals that moved me and pulled me closer to Christ. It is camp tradition to have a bonfire on Friday night. We sing a few songs and some of the campers talk about what they learned this week and what they are going to change when they return to the real word.

As I sat on a log in the fourth row back, I listened while every one else sang Blessed Assurance. I have heard this song thousands of times before, but that night the words spoke to me in a way they never have before. The chorus goes like this:

“This is my story, this is my song
Praising my Savior all the day long.”

I was not praising God because I don’t like the way my story has been written so far. I was not praising God because I was mad at Him for my circumstances. I was not praising God because I didn’t think I had anything to praise Him for.

Part of learning to praise God despite my circumstances is to accept that it won’t change. Part of accepting that my circumstances won’t change is to share my story with someone else.

So, here we go-

This is my story. This is my song.

My story began in January 2000, but I’ll start in the fall of 2005. I was 5 years old, getting a routine check-up before kindergarten at a new school. When the audiologist tested my ears, she noticed something – I was completely deaf in my right ear. She explained to my parents that it could have happened when I was born, they just didn’t catch it until later. I was only 5, so I didn’t fully understand what it all meant. I just wanted to know when we were going to McDonald’s.

Being half deaf is not as tragic as it sounds, especially since I don’t know anything different.

Now, fast forward to summer 2015. I was 15 and vulnerable. I struggled with the fact that all the other girls were prettier than me, taller than me, and smarter than me. We went to the beach that summer, and that made all of my insecurities even worse. (To this day, I hate the beach.) During vacation, we had planned a trip to see Fort Sumter in South Carolina. My dad loves history so he was super pumped about it. We drove from the beach to Charleston, and somewhere along the way, I got sick. I was dizzy. I couldn’t walk in a straight line. We all blamed it on car sickness, and waited for the boat to take the next round of tourists to Fort Sumter.

Our plans changed a little bit when I got sick the gift shop. My mom forbade me from getting on a boat, so she tried to exchange our tickets while I apologized to my dad for ruining vacation. We got back in the car and drove back to the hotel, where I took a 7 hour nap in the middle of the day.

Two days later we were home, I was still dizzy, but now my ear was ringing. Everything sounded fuzzy and far away. My mom took me to the ENT. After doing her usual routine twice, the specialist still didn’t know what was wrong. She told us that if it was what she thought it was I would need shots in my ear drum. These shots could either solve the problem or take away all hearing in my left ear, leaving me completely deaf. She sent me to Pittsburgh that same day because she wanted a second opinion before she did something so risky.

For two hours I sat in the car contemplating what my life would be like if I was completely deaf. I would have to learn sign language. I wouldn’t be able to play the piano without doubting every note I played. I wouldn’t be able to watch musicals. I wouldn’t be able to find a guy who loved me enough. There were so many things that I wouldn’t be able to and I thought my world was ending. I was 15 and every single dream I ever had was crushed in one day.

When we got to Pittsburgh, the ear specialist I sent to was not what we were expecting. He talked on his phone the entire time we were with him. He accused me of exaggerating the details for attention, because I’m a teenage girl and that’s what we do. After my parents yelled at him, he agreed to do some tests. I had to go back the next day to start, but it would take a couple of weeks before we had answers. The next day was the first day of sophomore year.

I left 4 hours early to get a hearing test. Another hearing test. And another hearing test. They all seemed the same, but apparently they were different. I went to Pittsburgh a few times a week for more tests that I didn’t really understand. I had to get shots. I had to get an MRI.

I cried myself to sleep every night for months because I didn’t know what was happening. I stopped praying. I hated sleepovers because my ears were always ringing so bad, I didn’t understand what anyone was saying. I didn’t want to talk to anybody. I hated going to piano lessons.

About three months later, I was diagnosed with Meniere’s Disease- an inner ear disorder that causes episodes of vertigo (dizziness) and ringing in the ears. These episodes could come and go, they could last forever; it’s different for everyone. I’m not dying, so it could be much worse. There’s nothing they can do about it. It typically occurs in patients 50-70 years of age. I was 15.

Meniere’s disease doesn’t only affect someone’s ears. I let it change the way I see myself from bad to worse. I let it take away the little confidence I had left. I let it change my friendships. I let it replace my passion and fire for piano for fear that I’ll never be as good as someone with two fully functioning ears.

I’ve learned to deal with Meniere’s Disease, but it’s still a struggle. It’s not what I had planned for my life, but it’s what God had planned. I’m learning to praise Him for my story. I’m striving to make the chorus of Blessed Assurance my anthem.

This is my story. This is my song.

Praising my Savior all the day long.

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