It has been about two years since I was diagnosed with mixed Reverse Slope Hearing Loss caused by Otosclerosis. Since my disease can get worse with pregnancy and hearing aids failed me, I decided to just sit tight and wait until I was done having babies before jumping back into the mess that is my hearing loss. I just had my second and last child two months ago, so I decided to schedule an appointment with the only Oto specialist I could find that my insurance covers that is close to me. Very long story short, I had my appointment today and it was horrible and a waste of time and money, so I will be looking for a new doctor. It takes months to get an appointment with ENTs, so it will still be a few months before I can start moving forward with looking into getting a stapendectomy or trying to find an aid that works for me, or both.
Until then, there were a few things I wanted to update friends and family with:
First, about a year ago I wrote a blog for Hike it Baby regarding both hiking with a hearing loss and hiking with someone who has a hearing loss. Even if you don’t hike, please read it. I am very proud of it. I brainstormed with other friends who are Deaf/Hard of Hearing and it is a great resource on how to interact in general with me and other people in the Deaf/Hard of Hearing community.
Second, my hearing has, without a doubt, gotten worse since having Tatum. There was a 50% chance of this happening so I was expecting it, but it is still hard and frustrating to deal with and come to terms with. Though my blog for HiB has more detailed tips, I want to stress a few things here. If you interact with me in real life, there is a big possibility that you still might not notice I have a hearing loss at all. But to reiterate, I have a hearing loss that was considered “severe” two years ago, and has since gotten worse. I rely heavily on lip reading, so when you talk to me it would substantially help me if you face me when you talk to me, make sure there is nothing covering your mouth, and project your voice. I am sorry if I have ever come across as rude in any way, please don’t take it personally. I withdraw from situations when I have given up trying to understand people, whether it is their volume, too much background noise, can’t read their lips, or something else that is getting in the way. If you can, please don’t whisper or talk in hushed tones around me, even if you aren’t talking specifically to me. Because of my anxiety, when I can’t hear people I assume they don’t want me to hear them and/or are talking about me. Eventually I stop asking people to repeat themselves because I go to a dark place and assume they know I can’t hear them, and they don’t care. Living with a severe hearing loss and relying heavily on lip reading is mentally and emotionally exhausting. Just imagine: Sound gives me 30% of what you are saying, lip reading gives
me another 30%, and then I am left using reasoning, guesstimation, and facial expressions to come up with the other 40%. Now imagine doing this during a group conversation, where while my brain is still trying to process the last sentence you said, someone else is saying a new sentence that I have to process as well. Now factor in background noise and objects blocking the mouth, and I think you can start to understand how challenging this can be. It is literally mentally exhausting to have conversations, and I cannot tell you how many times I secretly hold back tears out of frustration and disappointment in myself. I beg you, please take it easy on me and help me understand you. I want to know what you are saying, and I hope you want me to know what you are saying too.
I will update once I find a new ENT and get a new hearing test. Until then, thanks for following my journey!
PS: I forgot to mention. I am still amazed at how many strangers over the last two years have shared my blog and reached out to me. They stumbled upon my blog while they were searching for answers for their own loss and tell me how much my blog has helped them. Because of my little blog I have found a small but strong community of others who truly understand what I am going through, and I am very grateful to have them in my life. Since I have been able to help others, I will continue to write about my hearing loss journey. If I can help one person, it is worth it.