Saturday, March 29, 2014

Sudden Hearing Loss- a first post

On January 18, 2008, I woke up in the morning and realized that I had lost most of the hearing in my right ear.  I was just 49 years old.  I also noticed upon waking a loud buzzing noise which I later came to understand is called tinnitus (I say TIN-u-tus, others say tin-EYE-tis...take your pick  ;)

Over the next three days, I essentially experienced a seventy-two hour panic attack. I snapped my fingers near my ears over and over again - testing -, asked myself if I might be having a psychiatric breakdown, wondered if all of this could be a bad dream. I went to a otolaryngologist (the medical doctor we also call an ENT), had audiology exams and a brain MRI to rule out a brain tumor. I was eventually diagnosed with sudden sensoneurial hearing loss.  It is also known as sudden deafness. It happens mostly to people between the ages of 40 and 60, and usually only happens in one ear. The cruel trick is that it can feel as if both ears are going out, hence more and more panic. Because it is classified as a medical emergency AND there is no real understanding of its causes, sudden hearing loss also creates anxiety and panic in the doctors and professionals who treat it; they feel helpless to help their patients.

I was sent to the top doc in the San Francisco Bay Area. I thank him.  And I thank the amazing friends, pastors, family and various professionals who helped me through this time. It has been the biggest personal challenge of my life. I believe it also may turn out to be my largest life lesson (and greatest joy? We shall see!).

I haven't written much  about this before, but today is the day. This morning I found an article in the New York Times about hearing devices, and the article spurs me to ponder out loud a little bit. Why have I not written about it? For a variety of reasons, but chiefly because hearing loss is viewed as something that mostly happens to old people. It is therefore (especially for us very self-conscious Babyboomers) viewed as embarrassing in some way, a sign of aging. That my own hearing loss has absolutely nothing to do with aging perhaps places me in a position to advocate for others. Whatever the cause, hearing loss isolates a person, causes communication to break down just at the time a person needs increased support and connection. We have a lot of work to do.

So the article above makes complete sense to me: I predict that soon, hearing aids themselves, not just the amplification devices the article talks about, will begin to be camouflaged as Bluetooth devices. Our vanity as a generation could be a whole separate series of blog posts. For now, though, the article stirs me to reflect on my own hearing loss.

Six years later and I am becoming a bit more sanguine about what was at the time an outright emergency.  It was a time in my life of enormous stress; it was also the time of my menopause. I have a close friend with the same condition and we debate about what has caused it. Stress? Hormonal changes? There are cases to be made and she and I intend to keep researching. It turns out that the medical profession does not know what causes sudden hearing loss. There are lots of theories, there is no consensus. My doc at UCSF sits back on his stool,shrugs his shoulders and says "we really do not know what causes it."  That is a very hard thing for an expert to admit, but it helped me when he did. For me, hearing honest news is better than pretending. It leads me to a place of eventual acceptance and healing rather than a place of discouragement and shame.

There is a lot I will say in the future, but today is the day to "come out" and admit publicly that I have some pretty severe hearing loss in my right ear. I continue to work on understanding this condition and am trying some different new approaches.  In the meantime, I position myself to sit so that I can hear, I try and practice asking people to repeat themselves when I don't understand, and I am becoming an advocate for hearing loss help. Oh, and I am wrangling to purchase another hearing aid (I had one but lost it after three years when I traveled to South Africa.). The one I need will cost $2,800 (which is 50% of the "list price"). All I can say is that I am glad I only need one!

 I will leave you with one startling you want to know why our dear elders most walk around with outdated and old-fashioned hearing aids, if they have the devices at all? It is because Medicare does not cover ANY of the cost of the devices, not one cent. And most insurance is the same: nothing. We've got to change this, for them and for the rest of us.

Since January 18, 2008, people have been saying to me "there is something you don't want to hear, something you are trying to tune out. " I actually believe that there is something I am supposed to be listening for and seeing in a different way. Six long years later I am still looking and listening. And I expect to see and hear. And that is the best news of all.


  1. I was born not hearing at all in my left ear. Being partially deaf has not included feelings of shame for me as much as frustration, but because it's a condition I've had all my life, I have what are, for me, unconscious coping mechanisms. For example, I'll always walk on your left or sit on the left side of a room so I can hear in my right ear. In a restaurant, depending on the acoustics, I'll either sit on the left side of the table or I'll sit next to the wall so sound can bounce and I can hear. Either way, I know there's a lot I miss -- including hearing in stereo, which I've never had so I can only imagine what it's like to lose that ability -- but there's also a lot I appreciate and enjoy. For example: peace and quiet. The ability to sleep on my good ear and not be awoken by random sounds in the middle of the night (that can also be a curse, because I'll hear things after the fact and can't identify what they were or where the sound came from.)

    Regardless, hearing loss is no small deal. In the end, though, I'm grateful for what little I have and even more grateful that this is the least of my disabilities. To be truthful, I think I'd far rather lose my hearing than my sight.

  2. Janet, thanks for this...I had no idea! I think it is interesting what we learn to cope with...either "born" to it, or learned later on. For me, it has been a life-changing experience and one which has opened me up in compassion. And, I truly love that my friends say "STACE! TURN UP THAT HEARING AID!"