Life With the Black Whirlies

I look much like your average person on the street. Chances are that if we passed each other, you’d take no notice. I’m average height and build, able-bodied, not too made up, not too sloppy. Another innocuous human body among millions. Only my body’s center of balance comes with a kill switch, and I have no control over when it gets flipped.

Because I look like your average person, if I were to stumble, slam into a doorway, or tumble to the ground, you’d likely think I was clumsy, maybe drunk, maybe on something. If I bailed on a social function or called in sick but bounced right back the next day you may start getting the feeling that I was a flake or even a fraud. It’s in our nature to make judgements on what we can observe and what we experience. That can make it difficult for those like me who have an invisible ailment.

There is nothing about my outward appearance that gives the impression that I’ve got a chronic illness. You’d have no idea from looking at me that my vestibular system and hearing is impaired, or that I hear a constant high pitch alarm every moment of the day. There’s a hidden malfunction within my inner ear. I have Meniere’s Disease, a rare and perplexing disorder that affects 0.2% of the population. It damages my sense of hearing as well as my sense of balance. Fortunately, I’m only affected in my left ear, but others in the Meniere’s community are bi-lateral, meaning both ears are impacted.

I’ve found a supportive community online where we can commiserate about our experiences and share information and suggestions. We can also learn more about how differently others in our community experience this disease. Over the last few years of navigating the information available, I’ve found that there are very few resources that help people understand what it’s like to live with Meniere’s. I’m going to devote the second half of this post to doing just that. Again, people have their own symptoms and experiences. These are mine.

Hearing Loss

Three and a half years ago, I had the sensation of water in my left ear.  I couldn’t understand what my son was saying if he whispered in that ear.  I couldn’t hear what was being said if I answered the telephone on that side.  I asked people to switch me spots at dinner tables so I could follow the conversations.  I thought that if I could only get my ear to drain, my hearing would return.  In September of 2018, I learned that my hearing was never going to improve. I had permanent, moderate to severe hearing loss in my left ear. Certain sounds became grating: poor acoustics in a busy restaurant, clanking dishes, even the sound of my husband enthusiastically kissing my left cheek. The fun and vibrant bars and restaurants that I loved to frequent became associated with struggle and discomfort:  The struggle to understand what was being said to me, the struggle to ignore the assault of ambient noise, and even the struggle to focus on what I was saying.

Several months ago, I made a major investment in a high quality hearing air. Since I have nearly perfect hearing in my right ear, poor audio would have been more apparent and bothersome. While it has made a huge difference, and I love it, it’s an improvement, not a fix. It’s not like putting on a pair of glasses that bring your vision back to 2020. I’ll never have great hearing on that side. The damage is permanent but the amplified sound does help me pick out words that I would have missed.

Tinnitus

For years and years, I made the same joke over and over: that people must talk about me a lot, sending my ears ringing.  I didn’t realize that the sporadic tinnitus I experienced was a harbinger of what would become my every day.  Every waking moment of the year, my left ear rings.  If only it would stay the same pitch and chime, maybe I could block it out.  Instead, it changes every few days.  From a high pitch screech, to a pulsing alarm, to a three toned chime, over and over, day in and day out.  The perceived volumes change too.  Sometimes it remains subtle, lingering in the background of my hearing.  Other days, it screams in my ear, drowning out my own thoughts. 

Fortunately for me, the hearing aid does seem to help somewhat. It amplifies ambient noise in my environment, giving my brain something to focus on rather than narrowing in on the same ringing din.

Ear Fullness 

This has been the easiest symptom to become accustomed to.  For the past three years, my ear has felt like it has water in it. I have the constant impression that it just needs to drain, or I’ve just descended in elevation and it needs to pop. The first few months, it was maddening. Now, it’s just the way my left ear feels. Sometimes it’s better, sometimes it’s worse.  I’m used to it.  It’s not pain, just a steady discomfort. It becomes irritating if I give it too much thought, so I do my best to try to ignore it.

Vertigo

Of all of the symptoms of Meniere’s, this is the one I dread the most. The other symptoms are unpleasant, but the vertigo is terrifying and the only one that poses a true threat.  My first attack is what sent me to the doctor.  I had experienced regular dizziness throughout my adulthood.  I have low blood pressure and a high metabolism, and just chalked up those dizzy spells to low blood sugar or light dehydration. 

In July of 2018, I was driving with my 4 year old son.  I reached back to hand him his water bottle and instantly it felt as if the entire world was spinning around me.  Fortunately, I was able to get my car onto the shoulder without incident.  My view of the street was simultaneously spinning, streaking past, and skipping across my vision.  I spent the next hour waiting for my husband to leave work and come rescue us, the world spinning all the while.  I was throwing up into one of the dog poop bags we keep in the car, trying to stay calm and reassure my frightened child that I would be okay.  I didn’t know if I would be.  Had I tried to get out of the car, I would have fallen.  It was another hour before I started to feel like myself again.  

These are the more classic vertigo attacks. There is relatively little I have found to ease them. I just hope they dissipate. My greatest fear is that they won’t and I’ll be locked in a violently rotating world for the rest of my life. It’s not very plausible that something like that could happen, but it’s a hard concern to shake when it’s happening.

I also experience drop attacks.  These come on without warning and I have yet to determine how to prevent them.  The first happened when I was a passenger in my dad’s car.  He was driving down a dirt road, when suddenly I had the perception that the car went over a cliff and we were flipping over the hood and onto the roof of the car.  I gasped and clutched the seat, feeling like it was real. It took me a moment to realize it was another vertigo attack of a different nature.  For the next 45 minutes, I sat very still waiting, hoping that it was over.  

I’ve also had a drop attack while standing.  I went to the stairs to yell down to my son to come up and brush his teeth.  This time, it felt like the entire house had been pulled by a ripcord.  It went spinning around me so suddenly and with such force that I fell.  I reached my hands out in front of me to catch my fall but went down hard to my right.  I hit my head on the counter and hit my knee on what I assumed to be the floor.  My 5 year old son called up to ask if I had fallen.  I told him that I had and that I was okay.  Just the day before I had taught him to call 911 in case I fell and wouldn’t answer.  I told him to keep playing downstairs while I cried on the floor. 

I haven’t driven a car any more than a block or two since that attack.  I have no idea how I would react if I were behind the wheel when an attack of that nature hit me.  My guess is that it would not be good.

Over the last month, I’ve had what I call flash episodes. They aren’t as extreme as my drop attacks, but are still intense. They pass in seconds, but I can have several a day. I typically recover quickly but they are always accompanied by a feeling of unease and anxiety.

Anxiety and Depression

These are not a classic Meniere’s symptoms, but from what I’ve seen from the online community, many with Meniere’s experience them. For me, there is a level of low grade anxiety that permeates my day. It’s impossible to forget that any moment, I could become a victim from an assault perpetuated by my own body. Vertigo episodes can be incredibly unpredictable and come on without warning. The anxiety heightens when there an increased level of risk: if I’m carrying my laptop, if I’m on a staircase, if I’m standing on something that puts me off the ground, if I’m participating in sports (which I still do). There is always risk in everything, but for people with vestibular disorders, the risk is increased.

Anxiety is the most extreme for the days and weeks following a major episode. I’m terrified that I’ll be trapped in a vicious cycle, or that I’ll somehow awaken it again. There is also the lingering fear that I won’t be released when it’s happening.

Another mental challenges that comes along with this disease is that it can be isolating. It’s hard to feel understood and supported when the people around you can’t truly understand what you’re going through. Even when we reach out to others in the Meniere’s community, we’re still alone in our experience. We do what we can to pick ourselves up and keep moving, but there are times where that can be difficult.

Mourning

This seems like an odd one, but hear me out. Getting diagnosed with a chronic disease is a blow. Knowing that you will live the rest of your life with a compromised system of balance (or the repercussions of invasive treatment) is not something you just get over in a day or two. For me, it was realizing that there were going to be some limitations in my life. There were going to be things that I wanted to do but couldn’t. Hell, I’ve given up driving. I haven’t driven further than a few blocks in 8 months. We live in an isolated neighborhood and if I want to leave it or run an errand, I have to ask a friend to drive me or pay for an Uber.

I’ve always dreamed of hiking the NaPali Coast in Kauai. If I have an attack on any number of sections on that trail, it could be a death sentence. I wanted to ski trees with my son when he was old enough. Now if I do that, it’s a major risk.

Because of this disease, I have to mourn all of these ideas I had about the life that I’d live. No, I’m not dying. And yes, there are still so many things to be thankful for. That doesn’t mean that I don’t have to reconcile my expectations with my current realities.

Support

It’s not exactly a symptom, but it is something that greatly impacts my life and wellbeing. Fortunately for me, I have a supportive family and great friends. Not everyone in the Meniere’s community has that, which makes this condition even more difficult.

I’ve always been a very independent person. Asking for help is not something that comes easily for me. In fact, it’s incredibly uncomfortable for me to do so. Having this disease doesn’t change that, it just makes it more necessary. Though it has yet to happen, there may be a time that I’m unable to make it to the bus stop to pick my kindergartener up. Having a supportive network of people I can call is a huge safety net as well as a comfort. I am so appreciative of those in my life that seek to understand what I’m going through and offer to help out. It makes a world of difference as I navigate forward through this.