The normal

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.

13 Responses

  1. Pam June 17, 2016 / 10:17 pm

    Lisa, thank you so very much for sharing. I have tinittus very bad and last weekend someone kept talking to me, I said a couple of times I was having a problem hearing her (in a noisy room) and I remember thinking that I really need to learn how to lip read. I also have Hyperacusus which Is basically being very sensitive to certain noises, especially repetitive noises. I just want to scream it bothers me so much. These are both neurological, from what I understand. You sharing about your struggles made me start thinking and putting two and two together, so am thinking perhaps these things are mast cell related for me. I only tell you my story to let you know how your story helped me see that mine could likely be mast cell related, which in a weird way helps. Thank you, my friend. I am so very thankful for you! ❤️

  2. Nathaniel June 17, 2016 / 11:14 pm

    You may not hear me (well), but I hear you.

  3. Jana B June 17, 2016 / 11:50 pm

    Lisa, thank you from the bottom of my heart (or from the inside of my ear drum) for writing this!!! You might have just saved me from losing my hearing! Thank you a thousand times over! I’m so sorry to learn what you have gone through, but you are educating others and your painful lessons will teach people for many years to come. I was diagnosed with POTS first in February of this year, and went through a battery of tests, one of which was a vestibular test. This came back abnormal, and it was suggested by the dr who read the test to seek treatment for possible loss of hearing and balance type problems. Even suggesting I need equipment at home to get around safely. My POTS dr who received the report said, “Nah, you don’t need that. Anyone I’ve ever sent on to get help for that says it doesn’t help at all.” Meanwhile I’m realizing I’m not being able to hear very well, and my seven year old daughter was even pointing it out to me just yesterday. I was dx EDS and MCAS in March soon after my POTS dx. I tend to lose my hearing as if I’m under water or in a tunnel when I stand up, probably from my POTS issues. Not sure if it’s related or not to the other hearing loss that seams more steady instead of this “stand up/lose my hearing” type situation. Now, I’m going to go get checked out thanks to you! I appreciate more than words can express how much your blog with your vast wealth of knowledge has helped me slowly navigate this new diagnosis of MCAS!

  4. Carole Reed June 18, 2016 / 4:40 am

    Lisa, you are simply amazing! Thank you for what you do for all of us.
    Carole Reed

  5. becca June 18, 2016 / 8:16 am

    While this is not an Inspire type message exchange, please allow me to tell you, in case you haven’t tried it or not on a high enough dose, what spared me from ostomy, keeps my colon functioning and controls dysautonomia including blood pressure to some degree:
    Mestinon/pryidostigimine
    My disease, however, is less severe than yours.
    I’m interested to find another person here with hyperacusia.

    • Lisa Klimas June 18, 2016 / 10:36 pm

      Thanks for the tip. I tried mestinon previously and it didn’t seem to hurt, just didn’t help. But that was a while ago, I will add it to my list of things to consider.

  6. Kathy June 18, 2016 / 9:32 am

    Lisa,
    You are incredible and brave. I have hearing loss in one ear, that is mild. But in general most people sound muffled, like they are mumbling.
    I love it when I am home alone and turn up the TV loud!!
    I can’t imagine how scary this kind of profound hearing loss must be.
    I understand about not having hearing tests. I am having some truly bizarre symptoms now ; hearing chimes when I shake my head and hearing orchestral music at times. Like I am going to tell a doctor that!!
    Thank you so much for helping us all.
    Kathy

  7. becca June 19, 2016 / 8:51 am

    If you do decide to try Mestinon again, (perhaps a higher dose than last time?) this is a reminder that you have to “rest” the medication once a week. Since I know you understand the action of this drug, Lisa, you’ll understand the body’s “catching up” with it. I go off it every weekend to keep up its effectiveness.

  8. Karen Neill June 22, 2016 / 11:05 am

    The power of the mind to adapt is remarkable, isn’t it? I can only imagine how frightening it would be to have a sudden onset loss like that.
    Of course, with my background as an SLP, I’m always very curious about people’s communication. I’m sure you’ve considered a cochlear implant in the ear with no hearing. What are your thoughts?

    I’m also curious to know more about tinnitus in MCAS. I have BP sensitive tinnitus, and my aunt has constant, painful tinnitus. Do you know if it is a warning sign for future hearing loss, or just another fun aspect of this illness?

    Karen

    • Lisa Klimas June 22, 2016 / 12:55 pm

      I am not interested in a cochlear implant. It was discussed early on but I’m not a good candidate and I have adapted now.

  9. Angelica Heavner June 25, 2016 / 7:16 am

    Hi Lisa. A few things I would like to say. One being congratulations on speaking up and telling your story. That takes courage and strength that you definitely have. Remember that and you will beat the rest.
    Two, you had said something about about EDS but didn’t really make it clear on the context. I ask because my youngest has EDS with a screwy hearing issue. Like you we have pretty much given up on hearing tests because they don’t listen to us a do them correctly. He knows how to “trick or screw” the results. He has, like you, intermediate hearing. He can’t block outside distractions without blocking all sound til loud enough to clear the wall ( hearing specialists explained it like that when he was 4). He does coping skills that was noticed during the testing that helped. He moves constantly. Not up and running around, just something simple, leg shaking up and down, he pops his thumb joint in and out of its location (drives me crazy a he is paying for it now with early onset arthritis). The specialist said it literally vibrates his eardrum to allow him to hear what is going on around him. We were told it was rare side symptoms of his EDS. He also has double vision (both eyes are clear, they literally focus separately), add that in with dyslexia and school was a blast.
    Was wondering if it is normal or typically for these to go hand in hand. Trying to see if they may have missed a diagnosis or not. Wouldn’t surprise.

    • Lisa Klimas June 25, 2016 / 4:10 pm

      EDS causes conductive hearing loss, when the pieces needed to transmit hearing aren’t touching so the vibration isn’t passed.

  10. Aimee St. G. June 30, 2016 / 8:19 pm

    Thank you for posting this! My doctor believes my symptoms are consistent with MCAS, and I’m seeing an allergist to confirm in a week and a half.

    I’ve had intermittent hearing loss for as long as I can remember. People always joked that I had “selective hearing”, which made me feel horrible, not only because of how dismissive it was toward my condition, but also because it implied that I was making it up. As with all my symptoms, my hearing loss has gotten worse recently, to the point that I have to watch someone speaking to accurately discern what they are saying. This makes for some frustrating/embarrassing phone calls in my profession as a pharmacy tech.

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