About ten years ago, I started to notice that I couldn’t hear very well. Rather, my husband commented that it seemed like I couldn’t hear very well. We had just returned from Ethiopia with our two new babies and life was crazy and I was in the middle of being diagnosed with Lupus and so my hearing issues took a backseat for awhile. About a year later, now with my Lupus diagnosis, I went in for an extensive audiology screening in Berkeley and my results showed that I had mild hearing loss. I was 36 at the time, so a mild loss was concerning and a little odd. Hearing aids were recommended only if I wanted them. I didn’t. There is/was no history of early hearing loss in my family and I wondered if this was all in my head.

Time passed.

Five years ago, I decided to return for a hearing screening and received the same diagnosis. Mild loss, both ears (although I always felt like my left ear was SO much worse). Again, hearing aids were suggested only if I wanted to. I still didn’t. So I didn’t. Also…hearing aids are STUPID expensive. So if I wasn’t being told that I absolutely needed to have them then I wasn’t going to buy them.

My lupus worsened. I needed chemo infusions every 4-6 weeks at the hospital and eventually changed meds to a shot that I gave myself every single week. I hated those shots. The meds I was taking damaged my liver, made me tired and caused me to pick up every single cold or virus that went through my house because my immune system was so suppressed. It was a lousy time in my health life. LOUSY.

About two years ago I completely changed my diet and started juicing and over the next six months was able to wean myself off of all of my medication and within about 8 months was fully in remission for Lupus and Rheumatoid Arthritis. Pretty amazing stuff, right?

Except.

My hearing worsened. It was little things at first. I always struggled to hear my girls, especially my youngest. If people weren’t in front of me I had a very hard time deciphering what they were saying. If there was any background noise or distraction, things sounded far away or garbled. I stopped wearing ear plugs at night (sometimes Sam snores but mainly I wore earplugs to make everything silent) – this one was a dead giveaway. My world was becoming quieter and I just wasn’t aware. I completely stopped watching TV. At all. If Sam or my family was watching a show or a movie I rarely if ever joined them. Why? Because I couldn’t bloody hear! Sometimes I would ask to turn up the volume but honestly it felt silly and made me feel bad and so I stopped even asking and stopped participating. My world was becoming quieter and quieter. Again, I hardly noticed.

Then the ringing REALLY started.

I had experienced ringing (tinnitus) in my ears for years but in 2019 it really jumped up in intensity and frequency. Over the past five months it increased even more. What once occurred once or twice a week became a dozen or more times A DAY. Sound would also cut out in one or both ears for about 10 seconds at a time and then fade back. This was the worst.

I finally made an appointment to go see my general doctor. I didn’t say anything to Sam because I wondered if what I was experiencing was just in my head. My doctor confirmed that there was indeed some hearing loss and referred me to a new audiologist. Then I told Sam.

The night before my appointment I had a sinking feeling about how this hearing screening was going to go. I just had a feeling that things were worse than what I was expecting and so I asked Sam to come with me the next day to the appointment.

My screening was about 45 minutes long and within ten minutes I knew things were not going well. I was clearly missing whole sections of the sound tests (you push a button when you hear a sound or a tone and I could tell there were big gaps in tones where there shouldn’t be). The doctor then screened me with some instruments and tests I had never had before; another giveaway that things were not going well. This time, we had the benefit of my test from five years ago to compare things to.

When the doctor came back into the sound booth she matter of factly explained that I had mild to moderate loss in both ears and there had been a significant decline in my hearing from my test five years ago. She felt strongly that my hearing loss was a result of Lupus. Even though I am mainly in remission, Lupus did a number on my ear canals and the nerves that make my hearing work and contributed greatly to my hearing loss. She said that I was missing at least half of all sound (I hear 52% of sound in one ear and 48% of sound in the other) and that my world was indeed becoming much quieter. She said it was time for hearing aids. Not a suggestion; a must. My hearing would continue to decline and hearing aids would not bring back my hearing, only magnify the sound I could currently hear. It was not a good idea to continue in my quiet world with intense ringing; the hearing aids needed to happen.

Not gonna lie, I cried. Sam listened intently and asked great questions and when I finished crying my tears I asked some questions as well. The doctor was first rate. I’m so glad she was the one to really diagnose me.

For about a week after this appointment I was completely down in the dumps. I would cry for no reason. I mourned my hearing loss. I mourned that I was going to wear hearing aids. At the age of 44 I was going to look like an 80 year old with hearing aids! Yes, my vanity got the best of me but I was sad. Sam cheered my on, my girl friends rallied and lifted me up. There was talk among my besties about chalk painting and lighting up my hearing aids. Those are my girls and I’m so lucky to have them in my corner. The sadness continued but I acknowledged it and even welcomed it; you’ve got to have your mourning period.

On January 24th I went in and got my hearing aids. I went alone to this appointment and knew I was most likely going to walk out with hearing aids. I was resolute and told myself that it was OK to be sad, OK to mourn. The funniest thing was that as soon as those aids were in my ear and I COULD HEAR FOR THE FIRST TIME IN AGES I was happy. The sadness quickly dissipated and was instead replaced with newness and excitement and disbelief. You guys, there is SO much sound all around us. The world is LOUD. And I had not been hearing it! I had no idea how much I was missing until I walked through Costco, through a parking lot, listened to my car, heard the birds, ordered at a restaurant and heard my own voice through hearing aids for the first time. SO. MANY. SOUNDS. It was an overwhelming experience for the first three days. So much input, so much over stimulation, so much noise.

So now I am on this new journey, one where I can hear and participate. It took about two weeks for me to really adjust to not only the immense amount of sound but also to having something pretty deep in my ear canals 16 hours a day. It’s a big adjustment. It took time to learn how to turn up sound and turn down sound. My brain is still learning to sort out important sounds from the unimportant sounds. Each day new patterns are being formed. I was told it takes about four months for the brain to start to adapt to hearing aids and I can tell that will be the case here.

The excellent news is that I LOVE my hearing aids. I also love taking them out at the end of the day and basking in a 50% decrease in sound around me! Without my hearing aids sound is extremely muffled for me; I didn’t realize how bad it had become until I got my hearing aids. I have been stunned to listen to songs that I have heard a hundred times and pick out notes and instruments I never heard before! Or the sounds my car makes. Or the birds. Or wind. So many new to me sounds. I love my hearing aids.

Hearing aids are still stupid expensive and that HAS GOT to change. I mean, seriously. It’s one of our five senses! We have cheap eyeglasses for vision loss why can’t we have inexpensive (great quality) hearing aids? WHY?!?!?!

I wrote this post mainly so that I would remember my feelings on something that has been a tough at times journey. The day I found out about the severity of my hearing loss I wrote the following post on Instagram and Facebook:

” I’ve had something on my mind for awhile and I think it would help me (and maybe someone else going thru it?) if I finally just start talking about it.

I have been gradually losing my hearing over the past nine years. There is no family history of hearing loss and my doctors have felt from the beginning that mine is a result of Lupus (#stupidlupus). Originally I fell into the mild hearing loss range back at the age of 35…but when I was retested last month I have now moved into moderate loss in both ears. I took it hard and was grateful to have brought Sam with me to my audiology appointment. Always have a friend or family member with you at the doctor when you aren’t going to have good or easy news; it helps a ton. I was told that at this point I really do need hearing aids. I am 44.

Today at my hearing aid appointment I found out that I only hear 52% out of my right ear and 48 % out of my left. That threw me for another loop that I just haven’t been able to see past yet. I have ringing in my ears most of the day and usually 5-10 times a day have a different tone of ring that blocks out all sound for about 10 seconds. This has been increasing with time.

I’m going to be wearing hearing aids soon and I’m both sad and relieved. It is genuinely difficult for me to hear and I recognize hearing aids will help. I’m also 44 and hate thinking about how much worse this loss will get. I find it ironic that for many years as a pianist and a singer my best talent as a musician was my ear. It was my superpower. I could pick out notes and phrases and only need to hear them a few times before I had it down cold. I could always trust my ears.

I’m a fairly strong person but knowing that I am losing my hearing has been very difficult for me to accept. I’m just…sad. I’m hoping that in a week or a month or sometime later this year I’ve put the sadness away and am just embracing my fabulous computer-chip-in-my-ear life…but right now I’m having trouble seeing that. SO. If you are familiar with hearing loss or have a friend or family member in the same boat send me some of your good vibes and advice. I would say that I am all ears but that is literally a lie :)”

I was really lifted up by the comments and messages I received from this post from people I know and people I don’t know. I’m not one to publicly seek out praise or help but on this occasion I did and I’m so glad. I really needed the support. Every message, every comment helped me feel less silly, less alone, less vulnerable.

The ringing that I was experiencing still occurs but now that I am hearing actual SOUND again I only notice the ringing maybe 25% of the time (especially if it is really loud). That has been such a comfort. Tinnitus is the worst and while there is no cure for it, hearing actual sound does distract you from hearing it as much.

If you think you have some hearing loss get it checked out. Don’t push it off for another day or think it is in your head. It probably isn’t just in your head, there probably IS something going on. And take it from me, having hearing aids helps a ton with hearing loss. It doesn’t fix every kind of hearing loss but it has helped with mine and now I want to shout from the rooftops that they really make a difference! So, if you can’t hear your kids (which sometimes is a godsend) or if you find you are relying on subtitles on your tv at home or if you are constantly asking people to repeat themselves or worse, you just smile and nod and act like you heard what the person said (I did this ALL OF THE TIME) you maaaaaaaaay want to get that hearing checked :). Just a friendly PSA :).