Five Minute Friday! True

Truth: I didn't write this in 5 minutes...I wrote it over several hours. It's a guest blog on a cochlear implant forum. However, I copy/pasted it in less than 10 seconds. Hope that counts! This is my true "back story."

Life: it’s so full of irony!

As a young woman in college, I majored in Deaf Education. I wanted to teach sign language to sweet little deaf children. After graduating in 1984, I taught one year (high school, definitely not sweet) and then stayed home to raise my own children. 

Fast forward to 2009 and I’m nearly deaf myself!  I was teaching 8^th grade language arts (regular education and also not sweet) and having a hard time understanding the students. They were tired of repeating themselves, but I was convinced I had a classroom full of mumblers. A visit to the ENT proved otherwise: I had a mild to moderate hearing loss in one ear and mild to profound sloping loss in the other. My mother has worn hearing aids since her 30s, and I assumed hearing loss was another trait I inherited from her. Most of the traits have been good ones; this one was bad news! 

Most of us trust our doctors or other health care providers. I was the same. When the audiologist recommended a particular hearing aid, I bought it. She said amplifying the ear with the sloping loss wasn’t necessary. She had the audiology degree, not me, so I deferred to her judgment.

Because of my background in Deaf Ed, I knew enough to know hearing aids are not like glasses. I would not be fixed; however, I was very disappointed with how I understood with the aid. Sure it helped, but not at the level I had hoped for. Teaching was becoming more difficult.

I continued to go back to the audiologist periodically for adjustments and tests. Each time, I was hearing a bit worse. I took comfort in the fact that “at least I’m not as deaf as mom.” Within two years, my worse ear dropped off the chart in frequencies over 500 Hz. 

At this point, teaching was getting difficult. Some 8^th graders are very sweet, but many think it’s hilarious when the teacher cannot hear without 2-3 repeats. Some of them were really nasty. The job I once loved was becoming the most stressful part of my life.

In March of 2013, I woke up one day feeling like I was talking into a barrel. I figured I must be sick or something—I felt like all sounds were muffled. I knew I just had to have fluid in my ears because I couldn’t even hear the beep of my hearing aid changing programs. A quick check at the doctor was disheartening; my ears were clear. Overnight, my hearing had dropped 20-30 dB across the board.

The doctor looked at me and said that it was time to see a neurotologist and discuss a cochlear implant. I told him that cochlear implants were for “really deaf people.” He smiled sadly at me and said, “You are a really deaf people.” 

So, I went to see one of the leading CI doctors in Atlanta. He looked at my audiogram and said that if I tested like the previous one indicated, I would be a CI candidate. Then a key learning occurred: he looked at my hearing aid and said, “Good grief, what are you wearing?? This is a piece of crap!” Wow…it was a very expensive piece of crap. How are we, the general public to know better? I trusted my ENT and his audiologist, but they are not experienced with late deafened adults. Most of their patients are hard of hearing elderly. How did I know that I needed something bigger, better, stronger, etc? I tell those I meet now that they must do more hearing aid research. It’s important to see not just your ENT’s audiologist, but an independent one. See what is out there. Try them out for a bit. I figured when my doctor told me all of this he was gearing up to sell me a really expensive hearing aid. I braced myself.

The doctor came back after the battery of audiologist’s test. He said there was no point in buying more hearing aids—my speech discrimination was so bad (4% and 8%) that I needed a CI.

I decided to do the surgery after school was out. In the meantime, I tried to finish the year strong. I used my spare time to work on learning sign language again. I was so glad that if anyone in my family had to go deaf it was me, since I already had the background to help me communicate.

My surgery was July 3. The procedure went well, and I was home later that day. The longest period for anyone who receives an implant is the time between surgery and activation. I chose to implant my better ear. Many people think this is a bad idea. They worry that something could go wrong and then they have nothing. My doctor thought I’d get the best results with my good ear, since the bad ear was so, well, bad. It had been several years since I’d heard anything, so I followed his advice. The interim was very, very quiet.

I requested the Advanced Bionics audiologist to attend my activation. Not only did I have the clinical specialist there, I had two AB support staff attend because they were in town and loved to see activations. I tried to keep my expectations low and my hopes high. But frankly, I just had a feeling it would go well.  I’d read many activation stories about late-deafened adults and knew I had a chance for a “rock star” activation.

The room was a little crowded with the three AB reps, my audiologist, my husband, and my son…but we were all so excited. I started off listening to tones that sounded like drumming, and then I heard some beeps. It was time to switch to voices. My heart pounded in anticipation…I just knew I was going to hear from the get go! But I didn’t. I heard what reminded me of a super low-budget  60’s sci fi flic. I took a deep breath and tried not to let my disappointment show. I knew hearing with a CI was a process, and it looked like it would be a longer process.  This was apparently going to take a lot of work and rehab. The two audiologists continued to program and change settings. I listened to beeps and sounds. But what was that?? That sounded like a word! There it was again! It was a word! It was loud and high pitched (helium infused??), but it was speech!! OMG! I heard, I told them. I heard my husband. I heard my son. I told the audiologist I didn’t need her to sign because I could hear her! I could hear everyone in the room! They told me I was a rock star—and then they passed out the tissues. I clearly understood every spoken word.  Yes, it sounded like everyone was breathing helium…but I could live with that. It was speech—and I heard it. I could hear.

This would be a happy story if it just ended here, but it didn’t. The next day was my son’s district Eagle Board, where they would decide if he had met the requirements to be awarded scouting’s highest honor. My husband and I sat in a room while our son met with the board for about thirty minutes. Then, we were ushered back to join him. Something had happened that morning. The helium was gone. Voices were not quite normal, but they were pretty close to it. I walked into the room and stood with my husband and son. One of the men on the board addressed us and said “Congratulations! We are proud to award Scott Joiner the rank of Eagle Scout.” And I heard every word.