audiology

My Personal Hearing Loss Story

This might be a bit of a bore, but I just got hearing aids and there are a lot of people shocked to learn that I have hearing loss. Shoot, even I am a little surprised in some ways. So here is the story start to finish.

When I was a little girl my parents took me in for a hearing test because it didn’t seem like I was responding as well as I should. At the time I was diagnosed with stubborn toddler syndrome. In other words there was no sign of hearing loss.

I never struggled in school or carrying on a conversation so the idea of hearing loss didn’t come up again. In high school I realized that I couldn’t hear really high pitches that my friends could hear, but that’s not a big deal.

When I was 20 (2002) I had a bad episode of vertigo and experienced ringing and stuffiness in my left ear.

I expected it to subside, but when it didn’t I found an ENT and had a hearing test done. Their report showed mild hearing loss, but I was told there was no remedy and to just play music to distract me from the ringing. It was such a discouraging consultation considering I had no insurance at the time and shelled out $350 for the exam. I just wanted some answers. I wanted help.

Fast forward about 10 years (2012) and my daughter SJ was diagnosed deaf.

Her hearing loss is genetic, but we were told that J and I are both carriers of the genetic mutation. So it’s recessive. We have no history of deafness in our families.

In the mean time my hearing seemed worse, but I put my needs on the back burner. I thought maybe I was imagining it because there was so much focus on hearing loss in our home. I was always misunderstanding people or not hearing them at all. One day my sister in law asked if I ever considered getting hearing aids. I dismissed it because compared to SJ I was hearing just fine. I was in denial.

However three years later (in early 2015) I bit the bullet and decided I would have another hearing test done. I went to a GP who referred me to an audiologist. The audiologist tested me in a sound booth and the results showed that I had moderate to severe hearing loss on the left and mild on the right. I had so many questions for the audiologist, but she had no answers. She said that I needed to see a different doctor. They told me they would call me and they never did. I could have followed up and been more assertive, but I had three children plus one on the way and again I put my needs on the back burner.

After Elle was born she failed the newborn hearing screening. I swore she could hear because she flinched and startled to noise. Yet she failed the screening over and over again. Sadly, I knew this meant she would eventually be deaf like her sister. HOWEVER, the genetic test (which takes about 6 weeks for results by the way) showed that her hearing loss is different than SJ! Her hearing loss is still genetic, but it’s generally a mild hearing loss. None of us saw that coming. The geneticist said the only way this is even possible is if either the mother or father also have this hearing loss. I voluntarily suggested that it was me. Basically between SJ’s DNA and Elle’s DNA they uncovered the missing link to my hearing loss mystery. So they ordered a genetic test for me just to be sure. I got it back a couple weeks ago and it confirmed that I do in fact have hearing loss due to genetic mutation (I know that sounds weird). I asked about why it didn’t show up as a real problem until later in life and so far no one has an answer for that.

Regardless, now that I had it in writing with DNA evidence I was ready to do something about it. I went back to the same doctor, and was sent to another doctor, and then to the audiologist and was tested AGAIN and FINALLY got my hearing aids. So even though it looks like this diagnosis and treatment came from out of nowhere it’s kind of been leading up to this point for a long time.

So that’s the back story. I have a daughter who is deaf, a daughter who has mild hearing loss, and between the two of them I finally recognized that I have moderate hearing loss.

Of course everyone wants to know if it’s related to gender at all, but it’s not. That part is completely coincidental.

I am still getting used to the devices, but I do feel like I can hear a lot better with them. That does not mean that I hear perfectly though, so please be patient with me if I am not understanding or if I have to ask you to repeat yourself. Thankfully I have been reminded by several professionals that no one hears perfectly so I don’t need to feel bad.

This whole hearing loss journey has been a wild ride, but I at least we’re getting somewhere.

This Time is Different

I sat in the exam room with a tightness in my throat. I had felt fine, but as the reality of it all sank in the emotions rose up. I began to cry hot tears. I felt the need to apologize because I don’t like making other people feel uncomfortable. The audiologist responded in a firm voice ” Do not apologize.” She told me that I was completely entilted to respond any way I wanted and that just because I have been there before that does not make it any easier.

This was what happened a week and a half ago at Elle’s ABR hearing screening. As you can imagine this means that the results were not good. I thought Elle could hear, and I was right. She can hear. She responds to many different sounds, but she still has hearing loss and it’s in both ears. I wasn’t going to talk about it until I knew more, but I am ready to talk about it now. Especially since I just got off the phone with the early intervention specialists who are ready to come over and set up her first IFSP. SJ has an IEP which is an Individualized Education Program because she is in school. Before that you have an Individual Family Service Plan which is when case worker helps you come up with appropriate strategies or goals for your preschool age child with special needs.

So just like that Elle has Special Needs. She is 6 weeks old and already considered delayed because she can’t hear well. I am being blunt, but don’t worry. I am not concerned for her. I think labels are silly. I remember when I was being interviewed for a research study and I was asked how I felt about my daughter’s “exceptionality” and I said “Excuse me? Her what?”. “Exceptionality” she repeated. That’s what they are calling it now. I laughed at such a desperate attempt to not offend. I am comfortable with hearing loss, deafness, disability, exceptionality whatever you want to call it. It does however mean our calendar, our budget, and even major life decisions like where to live will look different over the next few years because of this.

Hearing that my daughter has hearing loss is so different this time. I continue to process a myriad of emotions. On the one hand Elle’s hearing loss is mild. It’s complicated and I won’t go into all the details, but that’s good news. SJ’s hearing loss was profound. At least by the time we found out it was. When Elle had her appointment J explained that we speculate SJ had previously had more hearing, but then lost it over time. He asked if that could happen with Elle. The audiologist said it certainly could. That’s a hard fact to swallow. I don’t know if I should assume the worst and hope for the best? I have a lot of questions for her ENT.

On that note, the fact that we already have an ENT, an audiologist, a school, and a support group in place is awesome! With SJ I was given a stack of books for parents of deaf children and I felt completely overwhelmed. This time is different. I have a newborn instead of a toddler. I live in Ohio rather than Kentucky. I will be dealing with hearing aids rather than cochlear implants (at least for now). I feel fairly equipped, but also uncertain.

I have so many questions and other concerns, but I will have to wait another month to even talk to certain specialists. The day of Elle’s hearing test was the first day of Christmas break for the kids and we went right into all of the Holiday gatherings. First was celebration with my family followed by a week of festivities with my in laws. That was actually good timing though because I had no obligations and have been pretty much distracted by Christmasy things. However now we prepare for evaluations, testing, hearing aids, and therapies. It’s really happening. I am doing okay, but I am also a bit of a basket case from time to time. Elle on the other hand is doing great. She is such a precious treasure and we all adore her.

I know many of my family and friends are going to be finding out about this for the first time. I didn’t know the best way to deliver this announcement. It’s not dreadful news like a terminal illness or something, but it’s not like announcing a pregnancy either.

I hope you’ll bear with me as I navigate this new journey because it might look similar, but this time is different.