I have a disability

A big change has happened in my life. Something that will affect the rest of my life, how I parent my children and how I communicate with people or how people communicate with me.

It happened a month ago now – I went to bed on a Saturday night like it was any other night. Nothing unusual or different about it at all. I slept soundly but woke up early with this sensation in my ear like I was under water. You know, the silence you experience when you go under the water and all you can hear are the mechanisms of your own body? It was like that. I was laying with my left ear into my pillow and I sat straight up in bed thinking, this feels weird. I got out of bed and began my morning ritual (coffee) without too much thought.

It was when I plugged my left ear with my finger to listen for the sound of the coffee being deliciously pressed into my cup that I realized it: I could hear absolutely nothing out of my right ear. NADA! If it wasn’t for the fact that winter colds were taking a brief hiatus from our household I wouldn’t have had the motivation to go to emerge in the first place. I would have just assumed ear infection or something, but no – I was healthy.

It was some scary shit, not gonna lie. When the doctor’s first impulse is to make sure you haven’t had a stroke you know something is up. Thankfully, no stroke. Just Sudden Sensorineural Hearing Loss. It’s a thing. A thing I had never even heard of until it happened to me. Mine was likely brought on by a virus. That’s all we know at this point and it’s just a best guess. After a month of specialists, MRIs, hearing tests and Intratympanic injections of dexamethasone I’m basically still in the same place – deaf. Or as my specialist likes to say, deaf as a post! In 1 ear anyways.

So, what I’m trying to come to terms with now is the fact that I’m living with a disability. Things that I used to take for granted are now quite difficult and overwhelming. I didn’t know much about how the ears functioned until one of them stopped working. Ears work together to send information into the brain. Not only do they hear what’s happened but they locate where sounds are coming from. Something that cannot be achieved with only 1 functioning ear. Yah, there will be no more Marco-Polo in my future! My left ear is now solely responsible for taking in all of the information from the world around me and quite frankly, it’s too much.

This transition is slow going and it’s very difficult when it comes to my kids. They don’t understand at all what’s going on. My youngest especially. When he yells and whines and screams and runs around, like toddlers do, I feel like I want to collapse into a puddle and just bury my head in the ground. It’s so overwhelming and overstimulating. When there’s more than one sound happening I feel like I’m in a gymnasium with all of these echoey sounds coming at me at once. It’s rough.

So, moral of the story is that I have a disability now and not only am I adapting to this big change but so is my family. My daughter learned the hard way that she cannot sneak up behind me because I have no idea at all that she’s there and I could just step back onto her foot and cause her to scream out in agony. Ugh, we were both in tears! My son is learning that mommy can’t answer him in the car because I can’t hear him clearly enough. My husband has really been incredible at regularly checking in with the kids to explain why certain things are tough for mom and that they can’t shout for me from random places in the house and that they can’t both scream and yell because it’s hard on mommy’s ear. He’s also learning to repeat himself or only talk when he’s right near me, not from other rooms anymore.

So to my friends and acquaintances – if you see me somewhere out in public and say something and I don’t respond, please know, it’s very likely that I’m just not hearing you. Loud places make it extremely difficult for me to hear anything at all, so don’t take it personal! Or just talk into my good ear…which is my Left!

xo Kristin

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6 thoughts on “I have a disability

  1. I saw you from a distance at the hospital a few weeks ago. I was hoping everything was ok. So sorry to hear this has happened to you. Stay strong! Everyone will adapt, and hopefully things will be less overwhelming for you.

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  2. Hi Kristin!
    Courageous as you are dealing with this doesn’t have to be a struggle. Your new normal is waiting for you….Whenever you are ready, there is a Phonak CROS system ready for you to try!
    Lara oxox

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  3. Hi Kristin. My heart goes out to you. i experienced sudden hearing loss in my left ear 6 months ago. I am also deaf in this ear. i am experiencing the same things as you – extreme sensitivity to sound and also the inability to hear with background noise, and also tinnitus and pressure in my deaf ear. It is taking time to feel better. take the time you need. I know it must be difficult with children…I am a teacher of 4 year olds, and haven’t gone back to work yet. But when I do, i will use my disability as an opportunity to teach the children the children tolerance and understanding. I hope you will start to adapt to your new situation. your body is going through a difficult time, and since there are no scars to show, i think it is sometimes difficult for others to understand what you are going through – hence, times can feel quite lonely. Take care, and I am interested in following your story. x

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    • Thank you so much, I’m so sorry I’m just seeing this now! it’s so amazing to connect with anyone who has experienced the same crazyiness that I have! I can absolutely understand why jumping back into work with a room of 4 year olds would be very difficult…one 2 year old is hard enough. Thanks so much for connecting with me!

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      • Hello again Kristin. Thank you for the comment. Yes, it really is good to connect with someone going through such a crazy and difficult experience. I’d be really interested to know how you are doing and if you have any improvements or are given any more information or help. Take care, and please don’t hesitate to contact me if you have a question or would like to speak to me about an issue with your hearing loss. Take care. Carly x

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