In the spring of 2009, I realized I wasn’t hearing as well in my left ear. Shortly after that, I started having balance issues. Literally would just be walking and would tip over. I went back to see the same ENT and got a hearing test that confirmed that I had some hearing loss in my left ear. I was referred to a specialty hospital and diagnosed with Meniere’s Disease. They prescribed a blood pressure medication to decrease the pressure in my inner ear.
In September, I got another hearing test. My hearing loss was worse and now noticeable in both ears. I was rediagnosed with autoimmune inner ear disease which is a real thing but they very poorly understood. I tried several meds, including high dose steroids. By November, I was getting steroids injected into my eardrums and could no longer understand speech.
The panic was immediate and fierce. I obsessed over my hearing and what I could and couldn’t hear. The world became strange and threatening. I had never understood how much we use sound for. We use it to tell how far away things are. If they are moving. How fast they are moving. If someone is upset. How hot water is coming out of the tap. The size and structure of space.
The speed with which I stopped understanding speech was staggering. I had no idea how to function in the world with significant hearing loss. I didn’t know about video phones and deaf alarm clocks and doorbells that turn on a lamp when someone rings it. I didn’t know about hearing aids and cochlear implants and a million other things. And I didn’t know how to sign.
As soon as I realized my hearing was never coming back, I focused all my available energy on learning ASL. I learned a lot online and by watching ASL interpretations of music on Youtube. (Warning: A lot of resources labeled as ASL are not ASL. They are other sign languages or poor fabrications. ASL is not a signed code of English, it is actually not even based on English.) I learned about resources for late-deafened adults and groups to practice ASL. I made Deaf friends and learned about Deaf culture.
I got lucky and the injections preserved some hearing in my right ear. My left ear hears nothing. My hearing fluctuates in my right ear, mostly as a function of blood pressure. With normal blood pressure my hearing is not great, but it is much worse with higher blood pressure. This means that my hearing can change rapidly which is both disorienting for me and confusing for people around me. Fluctuating hearing loss is like a fast track to people think you’re making it up.
I had several hearing tests over the years and stopped getting them because I was accused of inventing my hearing loss due to its inconsistency. Less than a month before I was diagnosed with mast cell disease, a neurotologist told me I needed to see a psychiatrist because I was faking. I called her bluff and saw the psychiatrist.
Halfway through the appointment, he said, “I don’t know what you have but you have something. If you’re faking, you’re not doing it right. You’re working and adapting to the world around you.” He wrote a letter and no one ever questioned my hearing loss again. I haven’t had any more hearing tests and I never will. I will never try to get a hearing aid again.
A couple of weeks after that appointment, I was diagnosed with mast cell disease. Mast cells are involved in sensorineural hearing loss, mast cell disease is associated with auditory processing disorders and EDS is associated with conductive hearing loss. My hearing depends on reaction, blood pressure, medication, a million things. The reason it seemed so irregular was because it was. Like everything else that mast cell disease causes. It is less variable now that I am managing my mast cell disease.
It has been six years since I lost most of my hearing. It doesn’t affect my day to day life terribly anymore. There are sounds I haven’t heard in years and will likely never hear again. Music sounds different. Speech sounds different. I can lipread okay if I know what the context is and I can see the face of the person speaking. In the last few years, my hearing has stabilized enough that I can hear on the phone if there is no background noise. I don’t sign every day anymore so I’m not as fluid as I used to be, but my ASL is good enough to be understood and to understand. All my devices have long since been closed captioned. I sit in the corner in public places, my deaf ear to the wall. I sit at the end of the table during meetings so I can look at people when they talk. The white noise that surrounds me when background noise is high is no longer disorienting. It is just part of me.
Losing my hearing was the original wound. It was the first thing I lost that I never got back. Long before I was having pieces of me removed, I went to bed one night and woke up with hearing loss.
Last month, a nurse said to me, “I would have never known you have trouble hearing!” She exclaimed it, eyebrows high, like it was a compliment. It doesn’t feel like a compliment.
There are things about my life that I think I will never get over. I am having some really serious lower GI issues right now that were supposed to be alleviated by the last few surgeries. Just thinking about it is upsetting and scary. Like I can never accept these things as my normal. And if I can’t accept them, this fog of despair will just get closer and closer until it smothers me.
Six years ago, I was struggling to sign and understand speech. I thought I would never be able to accept having severe hearing loss as my normal.
But I did. I sing in ASL while I’m in the shower. This is my normal. I don’t know how yet but I’ll get over everything else. And then that will be my normal, too.