In Part One, I shared the story of what actually happened to my ear. Here’s the rest of the story (with apologies to Paul Harvey).
What I Learned Through This
I’ve been dealing with the whole left ear thing for about 6 months now, and I’ve learned a few things in that time:
- SSHL can hit anyone at anytime: One of the ways I’ve always handled situations is to get as educated as possible about the topic, so I’ve read a LOT about SSHL and know there’s nothing I could have done to prevent it. It just happens. So sleep well tonight, everyone!
- Hearing loss has been tied to accelerated mental decline: This was surprising to me, but after reading about it, it makes sense. I notice I’m more withdrawn in group situations, and I still have one great ear! Imagine having almost no hearing. Experts think that the gradual withdraw from all social situations impacts brain stimulation, which can accelerate dementia. They aren’t sure yet, but the National Institute of Health has a study that will be completed in the next few years that should shed some light on it.
- Hearing aids are wicked expensive and seldom covered by insurance: My hearing aids will cost more than $3,000. If I was under 18, they’d be covered by insurance. For adults, there is very limited support. Even Medicare doesn’t cover hearing aids fully (if at all). I’m lucky to be in a position where I can afford them (as well as the constant purchase of batteries). The fact they aren’t covered, and yet may help those suffering from cognitive decline, really bothers me. Luckily, Costco and other discount offerings are available for some models. [Note: In a kind of cosmic circle of life, my mom reminded me that my late Uncle Billy had multiple patents on hearing aid technology. It would be kind of cool if his work ended up in my ears.]
- Diagnosis and treatment took a lot: All told, I had 1 urgent care appointment, 3 specialist appointments, 1 MRI, 1 CT-Scan, and 1 hearing aid fitting. Oh, and I still need to actually GET my hearing aids, then do a follow up, and get yearly checkups. All of these appointments have happened at different times and at very different locations (opposite ends of town). Because I have good insurance and a job where I’m allowed to leave for doctors’ appointments, this wasn’t (much of) a problem. My out of pocket was negligible (yeah – even with an MRI and CT-scan). I can’t imagine what I would have done if I was in an hourly position trying to juggle childcare and no sick time, making $11/hour with a high deductible healthcare plan. We really need to work on this as a society and not make basic healthcare something that can threaten someone’s job and/or financial security just because they need to go to the doctor.
- The reactions of others were surprising: When I started sharing the diagnosis and ultimately the prognosis and need for hearing aids, I got different reactions. Some people chose to make a joke (note: probably not a good idea to make a “what?” joke to a person who just told you they are now deaf in one ear). My guess is these people didn’t know how to respond. Other people reacted like I told them I had a serious disease. I appreciate their sympathy and concern, but felt like it was out of place. I’m not dead. I’m not kept from doing what I like to do. I’m going to be okay. Really.
- It’s still pretty freaking annoying: If anything, my left ear is an inconvenience to me. I get frustrated sometimes – I can’t sleep on my right side and hope to hear anything, like an alarm, so I have to be aware of my sleep position. And the tinnitus gets annoying sometimes, but I’ve already adjusted somewhat. It’s tiresome to have to use my right ear for phone calls because now I have to hold the phone with my left hand but write with my right hand, which means I drop the phone. A lot. This may be one of the things I’m most looking forward to fixing with hearing aids. It’s the little things.
Why I Shared This Story:
A few reasons. It’s a quick way for me to update people I know but don’t see on a regular basis. It’s a way to help people understand why I may not have been paying attention to them in a crowded setting. I didn’t find much shared from people who experience SSHL, so maybe this will help someone else who finds themselves in this situation. Sharing my story is also a way to help people realize that health stuff hits people anytime, anywhere, for no real reason. So if you’re one of those people who blame people for their health problems, you’re likely to hear from me…and it won’t be pleasant.
I also thought it would be good to shed some light on the challenges of ongoing healthcare for a non-life threatening issue. Loss of hearing in one ear is hardly comparable to cancer, MS, ALS, or any of the other thousands of health issues facing millions of people every day. It does require treatment, though, which includes follow-up care. Does the fact that you can’t immediately notice I can’t hear out of my left ear impact the way you’d react to my requests for time to see the doctor? It could. Do you have an employee who misses a lot of time for doctors’ appointments? Do you find it suspicious? I bet someone in the office has made a joke about job hunting about that person (or even me, for that matter). Our health issues are supposed to be confidential, but make no mistake – people who are managing health issues KNOW others are judging them and often share details they’d rather not share just to avoid the ongoing bullshit and side-eye they get from their coworkers or boss.
I also shared this story because I was surprised at what I learned about hearing loss and mental decline, particularly in the elderly. I hope the National Institute of Health’s study points to some tangible actions we can take to help mitigate this and maybe throw some damn funding towards helping more people get GOOD hearing aids who need them. Technology has improved tenfold (my hearing aids will have an iPhone app), but prices have not come down. Yes, technically you’re getting more for your money now, but that money is a pretty high amount, especially for those on a limited income.
I hope to get my hearing aids fitted some time in January 2018. I’ll keep you posted on what that process is like and how they impact my day-to-day.
In the meantime, sorry if I was only half-listening to you the last time we spoke.
At least I have an excuse. 😉
2 thoughts on “My Left Ear (a story in two parts): Part 2”
Thanks for sharing your story Mary. It is an interesting look at society and how we treat medical conditions in the US.