When did you learn you had sudden sensorineural hearing loss?
I lost hearing in one ear in 2013—no known cause. In 10 percent of cases like this, it’s due to a tumor or head trauma, but most cases it’s pretty undefined and they chalk it up to an autoimmune reaction or some latent virus in your body being activated and attacking your inner ear cells. But they said I would learn to manage with hearing in one side and this only happens in both ears in two percent of cases. I did adjust, but then almost a year to the day later, I woke up and had no hearing in my good ear, which left me almost completely deaf.
Did you feel supported by doctors when you first learned of it?
I had really good, top notch care at one of the top five ear specialty clinics in the world. That said, there isn’t much known about this condition so I was sort of shooting in the dark. I can go on and on about this at another time, but I think most doctors are excellent. However, because they have to operate within our dysfunctional insurance system, we definitely have more of a “sickcare” system than a healthcare system and I don’t think people are able to get the best care/most cutting edge and/or preventative care because of it.
What has been the treatment?
When it happened in the first ear, I did the recommended treatment which is a course of high dose steroids and anti-inflammatory meds. When that didn’t work, I got three steroid shots directly into my inner ear. For some people, some combo of the above will bring back some hearing. For me it didn’t, so I moved on for a year just hearing out of one ear. When it happened in the second, I was left completely deaf so started the process for cochlear implantation surgery. I now hear with a cochlear implant in one ear (that’s where the bulk of my hearing comes from) and a hearing aid in the other to round out and amplify the sound.
“I’ve experienced every emotion. Shock, anger, sadness, bitterness. Eventually you have to figure out how to adjust and live with your new POV, and I decided to live my life as fully as possible.”
What kinds of emotions have you experienced?
Every emotion. Shock, anger, sadness, bitterness. Eventually though, you have to figure out how to adjust and live with your new POV/experience and I decided I would do my best to just move forward and live my life as normally and fully as possible.
Was it easy or hard to talk about your problem with friends/family?
I decided to be pretty open about it. It was out of my comfort zone to talk about this sort of thing, but I decided it could help if I was just really open about it. Sometimes it’s tough when I’m just meeting people. It’s a big thing and sometimes I do have trouble hearing, so it’s always that thing of figuring out how/when to reveal something so big but also tell them so they have the practical knowledge in case I need to ask them to repeat themselves or move somewhere quieter. It has made dating interesting (probably more so in my head) but it’s another thing I have to battle being a little self-conscious about even though I know deep down there’s NOTHING to be self-conscious about.
How does it affect your daily life, your work?
I had excellent results with the cochlear and I’m in the 99th percentile of success. I can function pretty normally. Sometimes it’s just harder to hear if it’s dark/loud/many people are talking at once/I can’t look right at them when they’re speaking. I do pretty well all things considered, but sometimes the exterior circumstances can make it a little more challenging.
What are some things you’ve been able to do to make your life easier with SSHL?
My cochlear implant particularly and my hearing aid changed my life. I wouldn’t be able to live an (almost) normal life without them.
“Sometimes it’s tough when I’m meeting people. It has made dating interesting. It’s another thing I have to battle being a little self-conscious about even though I know there’s NOTHING to be self-conscious about.”
How has this affected the way you treat/handle/experience other issues in regards to your health and lifestyle?
It’s made me much more conscious and thoughtful about what I put into and how I treat my body. It’s made me more of an advocate in my own health. I always seek out second opinions and talk to alternative practitioners and do my own research. It’s made me more mindful of my health in general.
What has been the best thing to come out of all of this?
One, the answer to my previous question, and two, it sort of woke me up and reminded me of my mortality. I’m still not perfect when it comes to not stressing/living life to the fullest but I definitely try to take the lessons I learned from this and apply them to how I live my life now.
How would Sollis be able to help you on your medical journey?
Navigating healthcare in the current complicated landscape is super stressful—especially if you deal with chronic illness. Having an extra resource in Sollis is invaluable.
Words to live by?
Life is so short. If there’s something you’ve always wanted to do or can’t stop thinking about—just do it. And think for yourself!
