So, I’m Going Deaf

deaf-queer

One of my earliest memories is being held and soothed by my mother as I howled in pain from an ear infection. I came to know well the whoosh, whoosh cadence of my pulse registering with an eardrum that was already stiffening, soon to be less like a tympani and more like a djembe left out in the rain.

Another early memory is of my father walking next to a surgical gurney as I was wheeled into the OR. By the time I was 10, I had undergone 5 surgeries related to my ear problems. In truth, many kids who were growing up in the early- to mid-1980s had ear tubes. I had them 4 times before saying no mas, and by the late 1980s, it was revealed that the surgery was used too much and was a profit generator. For me, though, it was the only way to stop the ear infections and allow me to swim. I had wax earplugs for the pool which would get caught in my hair, but I didn’t care; as a kid, I loved to swim, especially in live water. I once nearly drowned in Lake Michigan being pulled under by a current, but I was such a strong swimmer and had taken so many lessons, I was able to save myself. I didn’t tell my parents until years later. Nothing was going to take away the joy I felt in being in God’s swimming pool.

When I refused the ear tubes, I was told that I would likely start to go deaf when I was in my 40s. I thought that I might have manufactured that memory, but today I learned that I didn’t. I have lost about 50% of my hearing. There are two types of hearing loss: conductive and nerve. The former concerns the entire system that conduct sounds waves to the brain for interpretation; it can be corrected or addressed in many cases. The latter, however, cannot. I have both types. I also have all three types of tinnitus. Since I was 25, I’ve heard a constant, high-pitched sound that never, ever goes away. I have become quite adept at pushing it into the background; I almost always have ambient noise around me, as it helps in the process. The second is like crickets chirping, and it originates from a vector in the middle of my head; sometimes the Doppler Effect kicks in, and that’s when I have balance issues. The third is the return of my old friend whoosh, whoosh.

Last week, for the first time ever, I had all three at once, and my left eardrum burst for the umpteenth time. I don’t even feel it anymore. The penultimate time it burst, the doctor was like, “How can you not know you burst an eardrum?” I said, “It is amazing what the human body and mind can get used to where there is no choice.”

Here’s the deal: essentially, my eustachian tubes collapse. With my eardrums being so stiff, fluid does not make it through the mechanisms cleanly until everything is clogged. Then, the fluid begins to ossify, becoming like ancient honey; that builds the pressure in my ears, which blows out the eardrum. This also causes nerve damage.

I am losing my ability to hear low tones at a fairly rapid rate. Today, I have a rather painful procedure done in the office: the fluid was cleaned out, my eardrums were perforated, and a tube was placed on both sides. Right now, my hearing is rather cattywampus and so is my balance. In about 6-8 weeks, I go back for another hearing test. We should then be able to determine if we’re dealing with primarily conductivity issues and to what extent nerve damage plays a role. I’m looking at deafness around age 60. 

A few people who have known me a long time recently said, “I had no idea you dealt with serious ear issues.” For someone who shares as much as I do, I’ve not written about it because I have been: a) so used to ear issues that I take them as a matter of course; b) using humor to deal with a serious situation that I didn’t necessarily want to face; and c) still trying to figure out what it means to live with bipolar disorder, so hearing loss wasn’t even on my radar. But recently, it has become really bad. I guess it is time for me to be honest about it: it is exhausting and frustrating and frightening and intimidating.

But I am very calm right now. I know what is happening. Knowledge is good; I felt the same way after the bipolar diagnosis. Now I know. And there’s hope and options, and now I have a really great reason to finally learn ASL. A friend wrote on my FB wall that my diagnosis is a reminder that they need to learn ASL. I read it and burst into tears, sitting in the parking lot of the ENT office, filled with love and joy and appreciation because I am so blessed. I am going to play guitar and sing, I’m going to go to lectures and friends’ poetry readings. I am going to stand outside the church and listen to children laugh in the playground. I am going to recite Shakespeare and ask people to tell me that they love me because I want to hear it all. I want to hear it all and record it in my heart and when I need to, put it on the phonograph in my mind and listen to it over and over.

So, I’m going deaf. But I feel like I’ve never heard better.

2 thoughts on “So, I’m Going Deaf

  1. I’m sorry to hear of your hearing loss, etc…Im on a similar path..have had tinnitus, vertigo, burst eardrum, etc and I should be doing more about it but I’m sailing along so far. Molly GunderKline, Theresa & I did many children’s music w/Sunday school w/ASK. I think it would be great to teach them this ‘new’ language again. Maybe Molly would come do it again or SoulStirrers could…
    Listen to the wood thrush too.
    Libby

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