“GOD, YOU’RE SO DEAF!” This is a common phrase my husband has said to me for years. Constantly I am shouting, “What!?” convinced the person is mumbling, the TV is too loud, the AC is drowning out their voice. He even joked I didn’t have a “hearing” problem, I had a “listening and paying attention” problem. But I did listen, I tried so hard to listen. Denial ain’t just a river in Egypt, or so they say. My ears worked just fine, dang it. Now leave me alone.
Last summer I took my almost 1 year old daughter with me to visit my sister. I noticed I could not understand a word my brother-in-law was saying. Not one word. Weird? A few weeks ago I went on a walk with some moms and there was a truck making white noise in the background and I could not hear one word. But everyone else was carrying on like they didn’t notice the truck. Weird? I would get furious watching The Walking Dead because I couldn’t hear Rick or Negan when they had an epic conversation. “Turn it up!!!” I shouted. “It is up, you are just deaf!!” He shouted back. Angry, I started googling hearing loss, for fun. I didn’t have it though. Obviously. One big thing that kept popping up was if you have hearing loss in one ear only, it could be a brain tumor. While watching TV, I started covering one year, and then the other, to see if one was worse than the other. That was when I realized my left ear WAS making the TV sound more muted, more under water. Well crap. Dr. Google told me I had a brain tumor. I laughed it off, but secretly I became a little worried. Maybe it was finally time to see a doctor.
I was only in my primary doctor’s office for a few minutes. She asked me what brought me in and I said I noticed it was harder to hear out of my left ear. She gave me a face, and then checked inside my ears. “Well, I was really hoping for a large piece of wax in there, but we aren’t that lucky. Now I need you to get a brain MRI.” Wait, what? A brain MRI? Was Dr. Google right? I slowly asked, almost too afraid to know the answer, “Is this because of a possible acoustic neuroma?” Hesitantly she answered, “Yes. There is a chance it is something else, but right now that is most likely what you have.” I most likely have a brain tumor? I most likely have a brain tumor. Dr. Google warned me about this moment, but hearing a real life doctor say it is much worse. She also gave me a referral to an Otolaryngologist saying, “However this turns out, he will take care of you.” I put on a brave face until I reached the parking lot before breaking down into tears. I texted my husband with a summary of what the doctor said, followed by:
That night the two of us spent hours researching acoustic neuromas. The symptoms fit perfectly. We looked at our insurance plan, figuring out how much this whole thing was going to cost. When it comes to brain tumors, acoustic neuromas aren’t a death sentence. They are a very slow growing benign tumor found just at the end of your ear canal. As it grows it slowly disrupts your ability to hear and sometimes your balance as well. Because I am young, they would most likely do surgery to remove it, but radiation might be an option as well. The hearing loss I have in my left year would probably be permanent, and there are some side effects like long term headaches, balance issues, possibility of cancer growing back in its place, lifetime MRIs to make sure it doesn’t come back, etc. The more I read the less it intimidated me. I was going to get through this. The scariest part was when I thought about something going wrong and Torey growing up without a mother. I couldn’t let that happen. I cried almost nonstop for the first 24 hours, then on and off for the next 24. I told a few people about it and most of them said, “I am sure you will be just fine.” Just fine? Were they clairvoyant? The phrase “just fine” infuriated me and yet it was said often from the people who knew. “Just fine” is if you fall and scrape your knee, “just fine” isn’t used in reference to “most likely” having a brain tumor. I felt like no one understood. Like they thought I was blowing this out of proportion. I decided to keep my feelings to myself. I started to obsessively want to meal prep and made 6 different complete crockpot freezer meals. My husband asked me what caused this sudden motivation, the last time I did this was right before giving birth. I really thought about it and realized it was the “keeper of the house” inside of me that wanted to continue doing my job. Even best case scenario I still had a few doctors appointments coming up this month, so now we didn’t have to worry about dinner on those long nights. He got upset at me, grumbled that he knew how to make food and we would be “just fine.” There that stupid phrase was again. I wanted to punch “just fine” in the face right about now. I vented to my friends and many of them took his side. Once again I felt alone. At least I had all this yummy food to be alone with.
The next morning I scheduled my appointment with the specialist. I couldn’t get in for another week. The waiting was the absolute worst. I just wanted to know. Even if I had a tumor, I just wanted to know. Two days later I finally stopped crying enough to call to schedule my MRI. I was proud I lasted the entire phone call without getting choked up at all. I pretended I was ordering pizza. From then until my specialist appointment, I ate everything I could put in front of my face. You could say I am an emotional eater. It also was both a blessing and a curse that my appointment was on the same day as the big presidential election. When I was tired of thinking of one horrible problem, I would shift my mind and think about the other.
Luckily my husband was able to take a few hours off work to watch our daughter while I went into my appointment. There was no way I would be able to handle a wild active 1.5 year old while trying to take hearing tests (those are supposed to be silent, right?), and talking to my doctor about my fate. First I met with the audiologist who did a hearing test and two other quick tests to test my middle ear and…something else? It was kind of fun pushing the button when I heard the sound, pretending it was some type of weird game instead of my fate. I left the sound proof room and sat in her little office. “You have severe hearing loss in both ears.” What? This time, I think I had a listening problem. No way. Your test must be wrong. Maybe I did the test wrong? My right ear is just fine thank you. She didn’t say much else besides, “The ENT will go over your results with you shortly, you can go back to the waiting room.” I texted my husband and sat there for 30 painstaking minutes until the nurse called me back in. My doctor was short and to the point. “You have severe hearing loss in both ears, significant enough to be a candidate for hearing aids.” Again, why are you saying these words? And hearing aids? Like an old person? “Your hearing loss is backward from most people, being that you can’t hear the low register but your high is ok (the inability to understand my brother-in-law, Rick, and Negan were starting to make more sense). There is something weird going on in your middle ear. How is your quality of life? OK, right? We will wait on the hearing aids and retest you in a year.” Then he stood up to walk out. Trying to quickly gather my thoughts, “Wait! So, you don’t think this is an acoustic neuroma?” “Because it is in both years, it is highly unlikely.” And then he made some joke about elephantiasis I couldn’t hear under his breath. Damn you low register hearing loss. “Wait, so, will it progress?” was the only other thing I could think of to ask as he was already halfway out the door. “Don’t know, we will test you next year.” Oh ok, thanks for the reassurance. Can we talk about beside manner?
I stumbled to the parking lot where my husband and daughter were waiting for me, still confused as to what just happened. Severe hearing loss? Future hearing aids? Possibility of it progressing? The words from the doctors kept circling in my brain. I decided to post about it on Facebook, mostly because I didn’t want friends and family to think that if I had asked them, “What?” a thousand times I wasn’t listening to them. The response was very positive, and I got many “You can do this! You are so strong!” Many people knew someone who had a hearing aid, and that was supposed to make me feel better because “technology has come a long way.” Some compared hearing aids to glasses, a “simple fix.” Why weren’t these words making me feel any better? This felt like a much bigger deal to me than others were making it out to be. I confessed to the few who knew about the possible tumor that I secretly wished I had the brain tumor instead. They were in shock, some laughed and called me dramatic. “I am so glad you only have hearing loss!” they cheered. You may be thinking I’m crazy too, but hear me out. I was prepared for the acoustic neuroma. I had read everything there was to read and I was ready to face it. I knew my options, I knew my prognosis, I knew my future quality of life. And now? All bets were out the window. I could lose more of my hearing, heck, for all my ENT knew I could lose it all. No one knew what was causing my hearing loss. I knew nothing of hearing aids. I hadn’t researched for this. This was not what I was expecting. I was in shock and really all I wanted was for someone to tell me, “Wow, that is horrible. I am so sorry.” I needed to deal with my pain before I could feel grateful for “only having severe hearing loss that who the heck knows what is causing it or if one day I will be deaf.” Once again, I decided to keep my feelings to myself. No one seemed to understand. (If you are one of my friends and thinking I could be talking about you, please know I don’t mean to offend. I truly am thankful for your kind words and having such supportive people in my life. I was just in the grieving process and not ready to accept your words of encouragement. To be honest, I’m not sure I am ready even now, but more on that soon.)
My shining light, the one person who seemed to truly understand my weird mix of emotions, was my good friend Sara. Her job is to teach and help children with hearing aids. She reached out to me and asked if she could help. She understood my fear and uncertainty when I said I would rather have a tumor. She acknowledged that what I was going through was scary and sucked. She said it wasn’t just like putting glasses on, I wasn’t “so lucky to just have significant hearing loss.” Besides all of that, she also gently urged me to go against my ENT’s advice and to get the hearing aids now. With her support, I scheduled an appointment with my audiologist to have a hearing aid consultation. She checked in on me, rooted for me, and gave me advice on the process. I really can’t thank her enough.
I don’t know my father well, but two of my aunts on his side messaged me soon after I posted about my hearing loss on Facebook. They said that my grandmother and her sister both had a disease called otosclerosis, they both had surgery and had hearing aids. I went straight to google. Otosclerosis is a genetic disease where the bones in your ear, the bones crucial to hearing, start to slowly fuse together. It happens so slowly that it takes a while to notice you have hearing loss at all. Sound familiar? It is also common for it to get dramatically worse right after giving birth, having something to do with the hormones in your body. Sound familiar? Because it is a dominant gene, if my father had it I have a 50% chance of getting it, if he didn’t I still have 25%. There it was. The most likely cause of my hearing loss. The good news? It usually stops progressing after your mid to late 30s. I’m 28. I still have some time, I still may get worse, but there is a (hopeful) end in sight. I may not go all the way deaf after all.
My husband came with me for my hearing aid consultation, mostly because we were worried about the price and he is the financial one. My audiologist agreed that she strongly recommends me getting hearing aids now. She explained that if you go long enough not hearing a certain frequency your brain forgets how to listen to that frequency. Also, why should I continue to struggle? She went over my hearing test in detail, something my ENT should have done but did not. She explained what the ENT meant when he mentioned I have something weird happening in my middle ear, which is actually an indication of otosclerosis. She mentioned I can later get a genetic test to know for sure and surgery may be able to help in the future, but the kind of hearing loss I have means I will most likely have hearing aids forever. She showed me the different types of aids, and said that luckily for my type of hearing loss I have quite a few options. (Reading this back months later I have realized how wrong this statement is, but you can find out more about that later.) She said the two styles that will work best for me is either the kind that loops behind the ear, or the type that goes inside your ear and is invisible, each having their own positives and negatives. There are three basic levels of hearing aids, starting at a simple model and then the highest model has fancy programs that can tune out white noise, pick up sounds coming behind you, and much more. The next step is to have her submit our claim to insurance, they will respond back with how much they will cover, and then we can choose the type of hearing aid after that. We most likely won’t hear back for another 6 weeks.
We really don’t know how much insurance is going to cover. My husband thought he found a quote online, but what the audiologist said was much different. If insurance doesn’t cover anything, the highest model is about six thousand dollars. Our insurance should cover at least part of that, but really it is up in the air for now. My husband and I have talked about different scenarios for models, depending on how much insurance will cover. We thought I could get away with the lowest version, because my hearing loss “isn’t so bad.” The day after my test I went on a hike with Sara, and she answered even more of my questions. She recommended getting the highest model, reminding me that I do in fact have severe hearing loss. There that word is again. Severe. I am obviously still living in Egypt. She also read my hearing test (I got a copy from my doctor), and gave me a bunch of advice and tips. She also prepared me for the future. She laid her hand on my arm and told me it was OK to grieve, that I should grieve, that I have lost a part of me, an important part, and my life will never be the same. I started crying. That is what I have been waiting for someone to tell me. That is exactly what I was feeling. Grief. I was going through the steps of grief (I still am) and didn’t even notice. This is why the positive words of encouragement weren’t connecting to me, it was like saying, “Your beloved dog died? Well at least you don’t have to feed it anymore! You are so lucky, it could have been so much worse. At least your kid didn’t die!” She reminded me that this isn’t just like putting glasses on. There is going to be a lot of work ahead. Once my aids come in I will need to get them adjusted a few times. The kind I get may not work well for me and I’ll need to get a new pair. As my hearing loss continues to get worse, I will need to get them constantly adjusted. Listening through a hearing aid isn’t like seeing through glasses. You have to re-teach yourself how to hear. It sounds different, feels different. It will take a long time to adjust. I may never adjust.
I am still trying to re-imagine my life with hearing aids. My “aids” as I am calling them. How can a mom have aids? A teacher? Isn’t their main superpower their supersonic hearing? Maybe I can get my audiologist make a special “teacher/mom” program when I need to hear whispering and gum chewing behind my back. When I am driving in the car I always have my daughter with me, but one night I was alone. I decided to blast my music, trying to see if I could hear the bass that I just thought all recent songs were lacking. It turned a Carried Underwood song I knew like the back of my hand into a whole new song! There were drums I didn’t hear, bass I didn’t hear, even some singing I didn’t hear! Maybe life won’t be so bad with my aids if I can fully appreciate Carrie’s music again. This makes me wonder what else I am missing. I guess we will soon find out…well, in approximately 2 months…
To read about my (failed) journey with hearing aids, click here.
To read about the advice I have for people with Reverse Slope hearing loss, click here.
6 thoughts on “Diagnosis: Severe Hearing Loss”
You’re a strong, confident mama! I know you will get through this time with much strength. Please let me know if I can help in any way. I can try and help you with Torey so you can do any appointments needed 🙂
You are so sweet, thank you so much! So far my husband has been able to take off to watch Torey during appointments, but if something happens I will let you know.
I don’t really know what it’s like to “lose” the ability to hear things I could before, because I’ve had my hearing loss since birth, and have never heard any differently. (borderline mild/moderate in the lower frequencies with my left ear also having some high frequency loss) However, I can relate to being worried about losing MORE of my hearing, and gaining a more severe loss. I also have similar worries about my eyesight.
I get that it’s a big thing for you, but remember you’re not alone. Seriously, you’re not! According to various statistics I’ve read, there are approximately 38 million Americans with mild hearing loss to total deafness, and the population of the state of California is 38.8 million. That means that there are nearly as many deaf and hard of hearing people as there are in the most highly populated state! Low frequency hearing loss is one of the rarest configurations of hearing loss… but then, I happen to be one of those who has low frequency hearing loss, so…
There are various fb support groups that focus on hearing loss– I’m only involved with one of them, HEAR YA NOW (the YA stand for Young Adults), which is geared towards adults ages 18 to 40 (I’m 18, btw). You can ask questions about stuff to other people with hearing loss, and there are a few audiologists who’re part of it too. I can’t promise anything– but it is nice knowing there are people I can talk to about it who actually get it. Up to you, of course, I’m just letting you know about it…
Thank you very much for sharing your story. I hope all goes well. 🙂