I have tinnitus in my left ear. It wasn’t always like this, but it is a fact of life I have lived with for the last year plus, and something I do not enjoy but eventually came to accept. Overtime, I have learned to both live with tinnitus, which I developed through Ear Kiss Syndrome, while also maintaining faith and hope it’ll go away—and have seen real results.

Tinnitus is an interesting phenomenon. A buzzing in the ear that many people experience after concerts, my brother complained about having it in both of his ears as a result of some medication he was on for a while. We tend to honor things mostly if we can see them, and second if we can touch them. Tinnitus cannot be seen or touched, and even more interestingly, it can only be heard by the person experiencing it.

To explain tinnitus, I turn to Mayo Clinic:

“There are tiny, delicate hair cells in your inner ear (cochlea) that move when your ear receives sound waves. This movement triggers electrical signals along the nerve from your ear to your brain (auditory nerve). Your brain interprets these signals as sound.

If the hairs inside your inner ear are bent or broken—this happens as you age or when you are regularly exposed to loud sounds—they can ‘leak’ random electrical impulses to your brain, causing tinnitus.”_¹

Tinnitus is a result of “changes in neural circuits in the brain brought on by hearing loss.”² Essentially, as a result of the damage to the neural circuits that interpret sound, the brain creates a new sound that only you can hear. That’s to say, it’s not that the ear starts producing the buzzing sound or that there is an actual buzzing sound. More than that, the ear’s new lack of ability to perceive and process sound causes the brain to step in and create this buzzing sound to compensate for the perception that was lost.

Tinnitus literally exists only in your mind. It is completely a matter of perception. Wow.

Just imagine being ruled and potentially ruined by a sound that exists exclusively in your head. The sound is there with you in every moment of your life, from the moment you wake up to the moment you sleep, from the moment your kids take their first steps until the moment you die—at least potentially. Even when you wake up at 3am because you need to go to the bathroom, it’s there.

I developed tinnitus through a bit of a freak accident. It is amazing to me that not many people talk about the kiss of deaf, or Ear Kiss Syndrome. Dr. Levi Reiter is one of the only audiologists that I have found to be doing any research about it, but it is a real thing, as others have talked about it, and I know from experience. One day last summer, I was hanging out with my husband on a Saturday morning, and while playing around, my husband kissed me directly on the ear. It immediately produced a ringing sound. I mentioned it and my husband felt taken aback to have caused that so immediately. I told him I was sure it would go away, just like all the ringing I experienced in my ears while being an avid concert goer in my 20s, and we left it at that.

It was a few days later in which I started to get concerned about the ringing, which was quite loud. I mentioned it to my manager and coworkers as something that was concerning and bothering me. I eventually would google what happened to me and found a few articles on Ear Kiss Syndrome. I got a recommendation for a doctor and went to see her knowing I had Ear Kiss Syndrome and planned to request a steroid shot as I had read that helped someone who had gone immediately to the emergency room after being kissed on the ear.

Despite the fact that this is a very real occurrence, many ENTs and audiologists do not believe it is possible to lose hearing based on Ear Kiss Syndrome. Unfortunately, the doctor I saw was in this camp, and despite the fact that I had read the articles on Ear Kiss Syndrome and knew it was possible, she convinced me otherwise, that it was more likely that I had some congestion in my face and the kiss had moved it in a way that I was now experiencing tinnitus.

This led to the delay of my treatment of Ear Kiss Syndrome as I took some medicines for congestion. By the time I finished the medicine and the second she recommended, and I did the audiology tests, she finally realized my situation was serious. Perhaps she believes in Ear Kiss Syndrome now. My reaction was no shit Sherlock. I was hard on myself for letting her convince me of something other than what I knew to be true, and for letting her convince me that Ear Kiss Syndrome does not exist when I know through experience it does. Perhaps it was because I wanted to believe it wasn’t serious. We had lost valuable time. The ear generally needs to be treated quickly. 

After that, a part of my life that I really disliked began. I met with my naturopath, Dr. Stella Park, and she knew what Ear Kiss Syndrome is. She recommended some herbs that would increase circulation in my body that could help the ear, and some other things. She also recommended hyperbaric therapy in conjunction with steroid shots, the same ones I had asked for initially. 

I hated hyperbaric therapy. It made my skin look amazing, but I hated the break in my routine to go there everyday, I hated putting on the clothes and the rush, I hated sitting in the tank with strangers watching a dumb movie. It sometimes got hot so I hated sweating. Everything about it I hated. And, I didn’t even feel like it was helping.

Meanwhile, I hated the injections, though less, because they actually worked. An injection to your ear is likely a sensation you haven’t experienced before. It was incredibly painful, especially the first time, when the doctor learned I needed more anesthesia than most people. Each week for three weeks, between the hyperbaric therapy, I got an injection to my ear, and each week, the volume went down a bit.

I haven’t mentioned how I felt much during this. My mental health was significantly suffering. The sound to me was unbearable. It was almost painful. There are different types of sounds that create tinnitus and for me it was a high pitched, shrill sound that made me feel insane. I found it extremely difficult to go about my life with it and there were many mornings my husband had to pick me up off of the floor of our closet, crying. I tried to find a YouTube video of shrill sounds to help people around me understand what I was experiencing, but people would request to have it turned off right away. No one tried to listen to it for an hour or even five minutes to understand how I may feel. 

I was completely alone in this experience. That was one of the hardest parts.

Even though many people experience tinnitus, it can vary by person in sound and severity, and even then, since it exists in only our brains, no one can experience it with you. Tinnitus doesn’t just sound ugly, it is very isolating and lonely to experience.

My work was suffering and I developed depression. My whole life, accompanied by this sound, seemed to have a gray haze over it. Nothing I used to enjoy was enjoyable for me, from the mundane to the special. I lost interest in things I liked. I didn’t want to see anyone. I cried constantly.

Dr. Stella Park had mentioned that there was also a spiritual component of my Ear Kiss Syndrome and the tinnitus, which was that I was feeling unheard in the world.

It is therefore funny, perfect, and strange that it was tinnitus that caused me to be diagnosed with autism. 

One in ten adults in the United States suffers from tinnitus, for some reason or another (not all experienced Ear Kiss Syndrome). That’s a lot. I also learned that for most people that experience it, it just fades into the background of their life. Only 7.2 percent of people consider it a big or very big problem. 

I am generally a resilient person, so I was genuinely confused as to why tinnitus was appearing to be a big or very big problem for me. I found the sound unbearable. And it was my husband, who was still relatively new in my life and obviously very close to me, who suggested I might be autistic. 

I didn’t take this well right away but eventually, one day, when he mentioned it again while we were walking in the street one evening, I was hit with a ton of bricks as I googled autism and immediately knew I had it. The description of autism was everything I had ever struggled with in life. It was so refreshing to find out there was a word for this differentness I had always felt but was told existed only in my head—like the tinnitus itself. I was told that I was like any other person in the world and my problem was that I just thought I was different and now I knew that isn’t true.

Not only had the tinnitus produced by the Ear Kiss Syndrome created the stress needed to expose the fact that I am autistic, but the changes to my routine and my discomfort with the hyperbaric therapy also exposed it. Autistic people even sometimes have altered responses to anesthesia. Everything clicked.

In this way, I owe tinnitus a great deal of gratitude. Processing the fact that I am an autistic individual was a whole other beast and a story for another day, but overall I am grateful to have found out that I am, and oddly, despite my adversarial relationship with tinnitus and Ear Kiss Syndrome.

Two psychiatrists would go on to diagnose me with autism after that. I eventually lost my job—which at the time was a big part of my daily routine, my identity, and my pay of course—due to a variety of reasons. 

Tinnitus and Ear Kiss Syndrome severely altered the course of my life, in ways I am still unpacking.

It has been a little over a year since I developed Ear Kiss Syndrome and the sound in my ear has become my constant companion. I have tried to befriend it, with mixed results. All western medicine doctors in the west told me that it was permanent, but I have found practitioners of more alternative or eastern practices to be more amenable to the possibility that it is not so permanent.

The steroid injections helped get the volume and pitch to a state in which I no longer wanted to hurt myself. While not serious in my thoughts, my mind produced alongside the tinnitus the fanciful idea of that. The injections helped enough to take that away.

Later, while traveling in Egypt, an ENT told me I had two years to try to recover the ear. She gave me some medicines that were anti-congestant and which I swore helped lower the volume further. She also told me of a device that would go in my ear and I think would produce the types of sound my ear had lost and that it should bring some of the sound back. I never got a chance to fully understand this device, what it was, how it worked, and if it really did, because it apparently was designed custom to the ear, and I only found out about this option the day before I was supposed to leave Egypt. Really, I was a bit skeptical this could work, but it did amaze me and get me thinking that not all healthcare practitioners agreed that Ear Kiss Syndrome was permanent.

Back in Mexico, some months later, my husband would meet a Japanese man in the street and decided to talk to him. CDMX has some ethnic mix to it, but seeing a Japanese man just walking in your neighborhood is not that common. My husband, like many Latinos, has a fascination for Asian cultures, especially Japanese, so it wasn’t hard to talk to him. It turned out Yoshi owned an acupuncture studio, called 佳 Asia Acupuntura (Yoshi Asia Acupuntura), and had moved to Mexico specifically to practice acupuncture in CDMX. He has been here for seven years. 

I started seeing Yoshi for a variety of reasons and mentioned my ear. He has paid specific attention to it and I have noticed the volume go down a bit after every session, much to my pleasant surprise, bringing me a great deal of joy and additional hope. 

Hope is an important idea. Once in an assignment from my life coach, I had to ponder the meaning of the word hope in correlation to faith, as well as the definition of faith. What I decided is hope is an expectation of a positive outcome, often the exact outcome you want for something. Faith places your fate in a higher power with the belief that what will happen will be positive for you, even if it is without expectation as to exactly how.

Generally, I prescribe to faith as the opposite of hope is hopeless, meaning one can oscillate between both and feel a great deal of negative feelings when they are not getting the result they expected. 

In the case of Ear Kiss Syndrome and my tinnitus, I have both hope and faith. I have faith it’ll get better, though I have been unsure about the process as to how, and at any given time just followed what appeared in front of me, like making an appointment with an acupuncturist when my husband met him. But beyond that, I do have hope. I believe in hope because I am a spiritual person. I don’t think God would bring me to a situation like this and leave me here. I believe God is capable of all things and much more—including the things doctors who prescribe to western medicine say are impossible. I have complete faith and hope that my Ear Kiss Syndrome will heal completely, that my ear and brain will return to normal, and one day, I will be able to experience silence again.

It is a strange thing to not experience silence, no matter where you are or how quiet you are. I sometimes try to place my attention on my right ear and better hear through it to hear silence. But silence is the absence of sound. It exists in juxtaposition to it. I cannot hear silence because there is a constant sound in my left ear. I haven’t heard silence in over a year. At best, sometimes, I imagine how it may feel. Not in a bad or saddening way. In a way that a faithful person experiences something that isn’t there yet—with complete belief that it already exists even if not there yet.

The most recent improvement I have experienced in my ear came extremely miraculously, yesterday. 

I had a huge fight with my husband. Like our worst fights, it started first thing in the morning. The details of the fight and how it transpired are not important. The main point I was trying to make was that I felt unheard in our relationship. This reached a breaking point yesterday because I, usually a quiet, composed, rational person, did a lot of loud, uncomposed, irrational things. And you know what, despite the fact that it was an ugly fight and we did not feel good during it, it felt good. Because I realized that besides the fact that I had something to say and I said it, we live in a society that cares so much for social niceties, order, and rule-following when it comes to everything including communication, that experiencing my own voice and how loud it could get felt strangely liberating. 

I screamed and I yelled and despite the ugly fight I was not upset because I felt like I was in full expression of myself and that I was using my voice in the way it was designed. Humans are able to yell and increase their volume because they are supposed to. After everything I went through, with the tinnitus, autism, losing my job, and more that is unrelated, I was feeling figuratively and physically muted as a person. I deserved to scream given everything that happened to me. Yelling and screaming at my husband yesterday to express my point made me feel heard but also human and so alive and real. We made up later that night but the positive impact of having expressed myself remains.

I am not sure if it is just tinnitus through Ear Kiss Syndrome, but for me, usually, the sound of the tinnitus is lower in the morning. This has always been the case. It is much more manageable at the volume and I’ve always wished it could stay the same volume as it is in the morning. I do not know why as I wake up and go about my day it gets louder.

I was telling my husband after my second acupuncture appointment that the fact that it gets lower in the morning means it is not as permanent as the doctors have said, and gives me hope that this Ear Kiss Syndrome can go away completely.

And you wouldn’t believe it, immediately after the fight, the volume of tinnitus went down.

I sort of can’t believe it, so I am being patient to make sure the volume is stable, but today, especially this morning, its volume is the closest thing I have experienced to silence in over a year, and that gives me a lot of hope. Dr. Stella Park was right. There was a spiritual component to it that made it real, of me not feeling heard in the world. 

Sometimes I think silence in my life must only really occur in my dreams. I wish I could notice it enough to enjoy it, but that is not how dreams work. I sleep with an air purifier on as that is the most silent part of my day here in CDMX, and since I can’t actually experience silence at this time, the air purifier covers the noise in a way that I find pleasing enough and full enough to fall asleep.

Tinnitus altered the course of my life. I was Big Tech Sarah at the time and while I knew there wasn’t a ton of meaning to my work and life, I didn’t know what more there was. I liked the cushy salary, the people I worked with, the nature of the work I did, and the lifestyle that was produced by all this. When I started 2023, there was no part of me that expected life to take the turns it did, developing tinnitus and finding out that I am an autistic individual. I knew that one day I would have to figure out the greater purpose to my life, and that when the time to do that appeared, I would know to follow the thread to where it was supposed to take me, but it hadn’t happened yet. 

For me, Ear Kiss Syndrome and tinnitus ushered in a new part of my life that I didn’t immediately gravitate towards, much less like, but at the same time, I feel like I am currently experiencing a lot more about what it feels to be human, including being delicate, fallible, changeable, and imperfect. Not being able to experience silence, and experiencing screaming. And for all of this I am grateful.

I don’t know where Ear Kiss Syndrome and tinnitus will take me next. I cannot say this journey, between the hyperbaric therapy, the being fired, the depression, and the doctors has been easy, but so far, it does feel worthwhile.

Like all “negative” things in life, sometimes we have to experience things that aren’t comfortable to teach us things we need to know, things that could bring us comfort. Duality is in everything—sometimes to get someplace you want to be, you have to go someplace you don’t want to be, because much of our understanding of what is good in life is from experiencing what is “bad.”

I don’t know where Ear Kiss Syndrome, tinnitus, autism, and all the things I have learned about will take me next. But I am excited to see.

1. Mayo Clinic. (n.d.). Tinnitus: Symptoms and causes. Mayo Clinic. Retrieved September 3, 2024, from https://www.mayoclinic.org/diseases-conditions/tinnitus/symptoms-causes/syc-20350156
2. National Institute on Deafness and Other Communication Disorders. (n.d.). Tinnitus. Retrieved September 3, 2024, from https://www.nidcd.nih.gov/health/tinnitus