Personal Blog

The Gift of Sound: Part 1

The Gift of Sound is dedicated to my dad, who’s love shines brighter than the sun.

During this time of year everyone has their minds on cooler weather, fall festivals, pumpkin spice, horror movies, haunted houses, and halloween parties. While I enjoy some of these as well, I always reminisce about the year 2008. October 31 to be exact, and no, not because of Halloween. I lost my sense of sound and became deaf when I was just eleven years old. I gained it back five years later. This is my journey.

Hearing Loss

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The Beginning of an End

My story begins during an ordinary day at home. Ok, maybe not completely ordinary. Due to a lung infection from my Cystic Fibrosis, I was currently taking a home IV medication twice a day through a PICC. The medication was called Amikacin, and just like all medicine there were several side effects, including hearing loss. Unfortunately, my doctor did not inform me of the ototoxicity before I started this medication. It wasn’t long before I began noticing a difference in sounds. For instance, I would be watching TV in the living room as I realized I could no longer understand my dads voice while he was in the kitchen about tweleve feet away. I felt like I was constantly repeating, “What?” This was not normal. I knew something was not right. I quickly told my mom, who was a nurse. She researched Amicakin, and saw hearing loss listed as a side effect. She immediately scheduled an appointment with audiology for a hearing test.

I had never been in a hearing test booth before. It was dark and claustrophobic. I was a little nervous. What exactly did I have to do in this small room full of speakers and gadgets displayed on the table and across the walls. I squinted uncomfortably as the audiologist pushed small cushioned ear buds far into my ear. She closed the heavy metal door of the sound proof room and appeared in the window on the other side. She began announcing a list of words and I confidently repeated each one. I also pressed a button each time I heard a beeping noise. When it was finally over I was proud of myself. I did good. I thought, “Maybe I can still hear after all!”

Signs of Hearing Loss:

  • Muffling of speech and other sounds
  • Difficulty understanding words, especially against background noise or in a crowd of people
  • Trouble hearing consonants
  • Frequently asking others to speak more slowly, clearly and loudly
  • Needing to turn up the volume of the television or radio
  • Withdrawal from conversations
  • Avoidance of some social settings

I remember talking with another audiologist while the woman who performed my hearing test spoke with my parents in a separate room. I entered the room a short time later to see my mothers face as red as a cherry. She tried to be brave for me, but I knew something was wrong. I was scared. I didn’t know it at the time, but my life would never be the same again.

My hearing test results showed mild hearing loss. The next thing I knew I was getting a mold of my ear canal to be fitted for hearing aids. With great enthusiasm, the audiologist brought out a case full of all the cool colors and designs I could choose from for my hearing aid ear molds. My anxiety wore off as I sat there debating which color I wanted. I decided on a clear earpiece embellished with many different colors of glitter. They showed my artistic personally perfectly. Later on, I received multiple compliments on how pretty they were.

It was challenging and frustrating getting used to wearing hearing aids. The sound sure wasn’t like before. I heard robotic voices and sounds. Every so often I cringed uneasily at the ear piercing noises of things accidentally being dropped on the floor, sudden laughing, coughing, or even the TV. I hated these new hearing devices at first, but when I realized how much they actually helped me, I never took them off. In fact, my mom never knew this until now, but one summer afternoon when my sister and I took a swim in the backyard pool, it wasn’t until I fully submurged myself under water that I realized my hearing aids were still attached to my ears! Thank goodness they still managed to work after drying off.

Losing Hope

Unfortunately, my life with hearing aids didn’t last long. It had been close to a year since I had stopped taking the medication (Amikacin). My lungs were progressively worse. According to the infections disease department at my local hospital, the only mediation to treat this rapidly growing infection was, you guessed it, Amikacin.

The disappointment seemed never-ending. I was at yet another sick visit with my doctor when I told him “I would rather have a lung transplant, than to take this medicine and be deaf” In my opinion, becoming deaf was the worst thing that could happen to me. Losing my sense of sound. How could I possibly go on with my life? My doctor told me, “We need to work on getting you better right now. We are not to the point of transplant yet. You are not sick enough” I fiercely held back tears wondering if my life could get any worse than this. I always tried my hardest to show my family I was strong. I could not cry in front of them. I could not show them I was weak and ready to break for all to see.

I gradually lost all of my hearing over the course of six-eight months. I will never forget the day I placed headphones over my ears to listen to music and realized I could barely hear anything at all. I felt like I had shattered into a million pieces. There was no way I could possibly put everything back together. My heart skipped a beat, my mouth was suddenly dry, and there was a big lump forming in my throat. I wiped my tears away as my dad came to my rescue and gently rubbed my back just like he always does when I’m in distress. I could see the pain in his eyes as he told me, “Everything will be ok” I didn’t believe it. I don’t think I had ever been so devastated, than I was in that moment.

Learning to Adjust

During the five years I was deaf I became quite skilled at lip reading. My family and I took sign language classes from an ASL certified interpreter, Sharon, who I still happen to be friends with today. I had no choice, but to adjust to reading the very fast closed captioning on TV. It’s definitely not easy being a deaf teenager. It was very difficult to make friends, because people, especially kids, don’t know how to talk to someone who is deaf. I didn’t want to be labeled, “The deaf girl” I was never included in any conversations. I felt awkward dancing at school dances, because I couldn’t hear the music. I couldn’t talk on phone. Not many of my friends had cellphones to text when I had first lost my hearing back then. Smartphones didn’t exist yet. My access of daily communication was gone. I felt alone. I couldn’t relate to the hearing and I couldn’t relate to the deaf community. I didn’t belong anywhere. My teenage self had no visions of a happy ending. Little did I know, my life was actually about to get worse a year later when my doctor informed me I was in need of a life saving, double lung transplant despite the continued use of Amikacin. In the end I was deaf for no reason at all.

Continue reading The Gift of Sound: Part 2

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11 thoughts on “The Gift of Sound: Part 1

  1. Hello everyone. I’m Amber’s mother Tracy. I must say Amber remained so strong through everything. But that doesn’t mean it was easy. Along with Amber we were all devastated and at a loss as to what to do. I always tried to include Amber in conversations especially when the family came together to celebrate holidays. I tried to let her know what others were saying to keep her “in the loop”. I don’t think I’ve ever felt so helpless in my life. As a mom I was supposed to make everything better but I could only sit back & watch. And pray! I prayed a lot. I asked God to take my hearing and give it to Amber. But we all know it doesn’t work like that. I’m so proud of the woman Amber has become and how she courageously faced each obstacle in her life with her head held high. I’m so proud of my baby girl. She is such an inspiration to everyone. Myself included. I love you more than you know!

    1. I took it for a strain of a highly resistant mycobacterium. I can’t remember exactly what it was.

      1. Wow! We are like twins in such unfortunate circumstances. I’m grateful to have found someone like me. I’m not so alone anymore.

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