“no response right”

Yesterday was humbling. The type of day where it felt like I misheard most things and then respond in all sorts of odd and inappropriate ways in conversation because I’ve missed the cues. It happens. Lately, it’s been happening a lot, and that all the signs appeared to be pointing toward F**kThisShitImOut did not come as a complete surprise; A couple of weeks ago I received an audiogram (the personalized hearing report card you get after a hearing test that shows the type and degree of one’s hearing loss). And on this particular gram, my Audiologist wrote in his notes, ‘Poor word recognition left, no response right.’ Sitting together at his desk after the test, I began to sob. Grabbing a tissue, trying to compose myself, I couldn’t; it was as if the part of my brain that controls my emotions was seeking something and would not settle for any of my glossing-over, look-on-the-bright-side bullshit. And then I got it: I was reaching for grief. Grief from this painful and inevitable loss. Ah ha. Grief. I totally knew you were in there somewhere.

“You had no accurate responses to word recognition on the right.” I knew what this meant. I’d been expecting it. I have progressive hearing loss, and my right side has always been my “bad side,” but before that day I could always recognize some words. Without my hearing aids, which provide wobbly support on that problematic right side, those days are gone. Damn.

Very little grows on jagged rock.
Be ground. Be crumbled,
so wildflowers will come up
where you are.

You have been stony for too many years.
Try something different. Surrender.
(Rumi always seems to make the hard things sound beautiful)

I’ve always had a very complicated relationship with uncertainty. I’m drawn to bold moves and inclined to bravery, but I pride myself on doing these things having planned and always well-prepared. As expected, the false sense of control this gives me kicks me in the shins regularly. Like raising a child on my own: Prepared all the way (Hahahaha). But what I could not plan for is solo parenting with hearing loss. The latter part snuck up on me. There are literally no guide books for this. Believe me, I’ve checked.

I think about all the ways my hearing loss affects my child every day. The very long list of things I fret about in this area would easily fill ten thousand pages. At the root is the fear that as the only fully hearing person in our household that she is carrying an enormous burden and that it might be hurting her in all these yet-to-be-seen ways. She often serves as the bridge between me and the hearing world. I see her managing this delicate balance with so much maturity and grace it both fills my heart with a deep, perfect love and breaks it into a million, tiny pieces. She is ever-alert, always paying attention and at the ready to interpret, to step in when it gets awkward, to speak up for me when I’ve gotten it wrong, and to later fill me in on what I may have missed. Opportunities to daydream and not pay attention, to take a seat and leave me at the counter to order, to put on headphones in a public space and close her eyes and listen to music, to not do any of the compensatory stuff that makes life easier for me, do not come easily. I ask her about it a whole lot, the injustice of it all and how it makes her feel. She’s always calm, kind and gentle with her words. She’s good-hearted like that. I fantasize about developing the technology that would fill in the gaps and do all the work, so she does not have to. I daydream about the freedom I suspect she’ll feel when she moves away and goes off to college, and I encourage her all the time to push back, to rebel a bit, to stomp her feet and tell me how it sometimes feels like too much, that it’s unfair.

Last night when I was running carpool I missed something my daughter said to me by way of explanation, and not having context, I barked at her about the thing I thought I understood but didn’t. To me, it was not a big deal, just a brief finger-wagging mom moment, but it wasn’t that for her. To her, it was representative of all the big and small challenges we deal with every day, all the things I miss, and it was embarrassing and frustrating. When we were alone, she let me know how she felt with the rawest, most loving honesty I have ever seen come through another human. It was hard for her to say to me what she needed to; I’m pretty sure she’d rather eat glass than do anything to hurt me. But more than sting or sorrow, as unwelcome the circumstances that brought us this moment was, listening to her unpack her feelings and sitting with the discomfort of it all, I felt the tangled ropes of my own fear unwinding. She has an enormous heart, and she’s strong, and both will serve her well as she navigates her life. And maybe I can learn to relax without assuming this difficult thing we do is barreling her toward endless future sessions of the 50-minute hour. It might, but that will be for her to decide.

What It’s Like

1. It’s not quiet.

Most people think that deaf or profoundly hard-of-hearing people live in completely quiet worlds, that for them there exists a total lack of sound. And while that is true for some, that’s absolutely not the case for me. I hear sound. Constantly. The sound I hear during each of my waking moments is as if someone is blasting a hair-dryer right next to my head. It’s loud and dizzying and persistent, and if I let myself think about it, it will make me cry. Like right now. Lately, and always if I have a head cold or my allergies are acting up, the sound is a helicopter, with the whooshing sound of whirling blades in my head. Trying to decipher and make sense of all other sounds – the ones I want to hear – are on top of that; within the hierarchy of my cerebrum, the helicopter is first.

The medical term for this is Tinnitus, but that nomenclature has never seemed right to me. Tinnitus sounds tiny, like the sound a mosquito makes, small and annoying, and my sound is anything but small; it’s loud and overwhelming and brutally invasive [fun fact: the sound is at its loudest when I am not wearing my hearing aids, so at that end-of-day exhausted moment of relief when my aids come out, the helicopter goes into overdrive]. Someday I hope to make peace with this aspect of my hearing loss, especially because the alternatives are discouraging and dark, but I’m not there yet. My sound serves as a constant reminder of what is happening to me, how I feel my body is betraying me and I am powerless to stop it, and it’s crushing.

Continue reading “What It’s Like”

Why I Walk

On November 3rd I am participating in the Hearing Loss Association of America’s Walk 4 Hearing in Mesa, Arizona. This is an important event to me for a number of reasons and I’m thrilled to be a part of it.

Here’s why…

Did you know that one out of 10 people has a hearing loss? Chances are you know a few people with some degree of hearing loss. If you know me, you know at least one.

Untreated hearing loss affects overall health in negative ways – isolation, anxiety, depression, and now, a link between untreated hearing loss and cognitive decline. Yikes. Aging is hard enough, who needs that? But the good news is, certain types of hearing loss can be prevented, screened for, and treated, which makes the lives of those living with it a whole lot better. And that’s where this walk comes in. The HLAA Walk4Hearing brings people together in communities to create awareness about hearing loss, and since 2006, the HLAA Walk4Hearing has raised more than $13 million and has become the largest walk for hearing health.

Why I Walk

I am participating in the Walk4Hearing because this is a damn good cause and, honestly, I need to remind myself that I am not alone and something can be done to live well with hearing loss. I am excited about being part of a larger mission and meeting others who have hearing loss – their family and friends – learning from them and embracing the deaf and hearing loss community.

If you’re so inspired, please make a donation to my personal Walk4Hearing page. Your donation supports the Hearing Loss Association of America (HLAA) and local communities by providing information, education, support, and advocacy. HLAA represents the 48 million people and their families affected by hearing loss in the United States, but HLAA helps one person at a time. The Walk4Hearing is evidence of that.

I hope you will consider supporting or (better yet?!) joining me at the Walk4Hearing on Nov 3rd.

With gratitude,


You Only Make This Mistake Once

WAITER: "Hello, I'll bring you all some water, would you like anything else to drink?"

ME: "Sure, I'll have the house margarita with silver tequila, please."

WAITER: "Small?"

ME: [Huh. Do they come in sizes - like, can I actually get a Slurpee sized margarita?] "Oh! [perhaps a little too excidedly] Fun, I didn't know there were options, but I'll just go with your regular" [feeling clever, smiling] "school night and all."

WAITER: "Regular?" [looking super confused]

ME: "Yep!"

WAITER: "ohhhh-kaaaay. 'Regular' it is!" [chuckling audibly]

WAITER: [to the table] "Are you all afraid?"

ME: [Um, I don't think I heard him correctly, but since I definitely heard "you all", I'm pretty sure he's addressing the whole table so I'll just let everyone else answer... phew, thank goodness for other people at the table]


DINING COMPANIONS #2&3: [both laughing] "NO!"

ME: [Oh shit, what good are you people??]


ME: "Oh. Um. I'm not sure."

WAITER: [At this point likely considering whether he should serve me a margarita of any size] "OK, Well, would you like peas and carrots?"

ME: [God, how weird. I'm almost positive I heard that clearly, but it doesn't fit, so maybe I should ask him to repeat it. hmmm everyone else is saying 'yes' at my table and I definitely don't want peas and carrots, but if this is a thing here maybe my dining companions will let me have a taste of theirs.]"Oh, that's unexpected. Not for me, thanks, but I'm curious, so maybe they'll let me try theirs."

What was actually said:

WAITER: "Hello, I'll bring you all some water, would you like anything else to drink?"
ME: "Sure, I'll have the house margarita with silver tequila, please."
ME: "Oh! Fun! I didn't know there were options, but I'll just go with your regular, school night and all."
WAITER: "Regular?"
ME: "Yep!"
WAITER: "ohhhh-kaaaay. 'Regular' it is!"
WAITER: "Are you all related?"
ME: "Oh. Um, I'm not sure."
WAITER: "OK. Would you like chips and salsa?"
ME: "Oh, that's unexpected. Not for me, thanks, but I'm curious, so maybe they'll let me try theirs."

Making mental note: Next time order the Slurpee-sized marg.

Hello, Friends

Hi, thank you for being here. A little bit about why I’m here…  Due to an unfortunate genetic inheritance, I’m living with progressive hearing loss. I’ve learned that writing helps me process the wild, mix of emotions associated with my condition, so I am vowing to do more of it. My plan is that this blog will keep me writing regularly and cathartically, I think of it as the ex-lax of journaling.

I am also a mom to one child and an embarrassing number of pets. I love them all, but the child is by far my favorite. When I’m not working, parenting, writing, tending to a flock of chickens, asking my friends and family to please speak up, or chasing a puppy, I’m spending time learning ASL. It’s a beautiful language and it fills me with hope.

Photo: Jacqueline Warner