My Very Own Personal Dizzy World

“I’d much rather be dizzy than be deaf.” That’s what “Andrew,” a deaf person told me one day. I was utterly flabbergasted. “I want to hear music,” he continued. I had no words for him, but I didn’t want to argue with him, either. He obviously had no clue regarding my world of dizziness, or as I call it, “Dizzy World.” Oh, Andrew, there’s so much I want to tell you.

You have absolutely no idea what you’re saying. If you only knew the hell I’ve been through since I was a teenager, what I’ve dealt with on a daily basis to some degree or another. At times, the vertigo has been so bad that it debilitates me, and I can do absolutely nothing — 24/7 for months at a time. What? 24/7? How do you sleep? Well, I don’t. 

I’ve also struggled with a lifelong sleep problem that got progressively worse as I was growing up. It spun out of control the summer before my senior year in high school. I hardly ever slept for weeks at a time. That, along with the dizziness, marked the beginning of what would define me, in part, to this day. That doesn’t take into consideration the severe TMJD (Temporal Mandibular Joint Disorder), a torn ACL at age fifteen, plus my own deafness. (See "Mwahmwahmwah, Wah Wah Mwah" to understand life as a HIP (hearing-impaired person)).

Back to my spinning world.

I remember my very first vertigo attack when I was seventeen, the summer before my senior year. I was trying to participate in school activities while working a summer job as a dishwasher, which soon proved to be too much. I was always hungry because there was no food in the house, so that only made things worse.

It had been a busy Saturday night at the restaurant. By 2 am, it was beginning to slow down. I was standing by some shelves when suddenly the room spun violently around me. After the spinning subsided my head hurt, not like a tension headache, but more like my head was going to implode from the intense pressure.

The lightheadedness persisted for the next few months, along with the many sleepless nights. I’m not sure when that particular episode completely went away, but that, coupled with the hunger and the relentless insomnia had adversely affected my health.

An ENT doctor prescribed a medication and said that if it helped, the problem was in the inner ears. It wouldn’t be until many years later that I would find out what specifically was wrong with my inner ears. The medication helped, but not without the unwanted side effects, namely the flushing, much like what Niacin does. The medication was soon taken off the market.

For an explanation about how the very complicated vestibular system works, I refer to a brochure provided by the House Ear Clinic entitled “A Discussion of Dizziness,” which states the following:

“The human balance system is made up of four parts. The brain acts as a central computer receiving information in the form of nerve impulses (messages) from its three input terminals: the eyes, the inner ear, and the muscles and joints of the body…[and] the soles of the feet.” 

When one part of the vestibular system is damaged, the other parts work harder to compensate. I had a birth trauma and was expected to die. My head got stuck in the birth canal, and I lost oxygen for 10 minutes. To this day, no medical doctor has ever acknowledged or confirmed that the birth trauma and vestibular dysfunction are related (though I know deep down inside that they are).

Three chiropractors, however, have absolutely concurred that my medical problems are directly related to the head trauma. One said emphatically, “Your birth trauma has everything to do with all of your medical problems.” I have a visible bump on my forehead (my battle scar) that is consistent with a head trauma. It makes complete sense. How can it not be? 

It was and still is hard for anyone to make the connection because, other than the deafness, I otherwise appeared completely healthy. To complicate matters, my older sister was born almost completely deaf, but with no head trauma. In addition, my father went deaf later in life. He said it was because when he was in the military, he had to lie next to a buddy and count the number of times he blinked as he repeatedly fired his weapon.

My hearing loss was dismissed as hereditary. 

A picture trying to convey what dizziness is like.
The following two paragraphs are my opinions: I [emphasis on I] believe my struggle with sleep, which also began at birth, was a direct result of the trauma. I’ve been in hyper alert mode since birth. I’ll be writing a separate post about sleep in the future. Other consequences were numerous behavioral problems as a toddler, including trichotillomania. I’m told I was pretty a difficult child to control.

The rest of the symptoms associated with the trauma would trickle in over the years. For those symptoms to appear, they needed a catalyst. It came in the form of stress — lots of it! 

People who have never encountered vertigo try to compare it to something they have experienced. Some say, “It’s sorta like being drunk!” Well, no…not really, although to others I might appear to be drunk. “Oh! It’s like being on a merry-go-round!” Well, kinda, except it’s not so merry, not in the slightest way. In fact, it is absolutely debilitating! Rollercoasters? Well, sorta, but again, no fun at all.

I’ve tried to understand other people’s handicaps and disorders. I can put a blindfold on and experience what a blind person “sees.” To know total deafness, I can sit in a soundproof room and listen to silence. Most of us know what burning feels like because we’ve all been burned to some degree. (If you haven’t, go put your hand on a hot stove, and you’ll find out very quickly. Never mind.)

With dyslexia, however, no matter how hard I try, I simply cannot understand it. I read the book “The Gift of Dyslexia” several times. It’s still hard to comprehend “dyxlesia”. . . I mean, dyslexia! It’s much more complicated than just flipping the letters around. Only one with dyslexia can understand the very complicated and individualized disorder that is vastly different with each person.

Likewise, how does one go about explaining something so abstract as dizziness, vertigo, and oscillopsia? How do you explain what being high on marijuana is like to someone who’s never been high? Like dyslexia and being high, the only people who understand vertigo are those who have experienced it — even if an episode lasts just a few seconds.

At my disability hearing, we submitted what we called the “Dizzy Scale,” in which I rated from zero to nine how I felt at any given time. We compared it to a leveler tool used in construction. 

Leveler
When the little bubble is right smack dab in the center, an object is perfectly level, or in my case, a zero on the Dizzy Scale with no balance or visual disturbances at all. 

I’m never a zero and haven’t been since I injured my knee in gymnastics at age fifteen. Remember, there are multiple factors that go into the complex vestibular system. My ears were already damaged from the trauma (at least that’s what the homeopathic doctors and I believe). The knee injury only made the balancing act more difficult. Bye-bye, balance beam.

At my very best, I’m always a one on the Dizzy Scale — no exceptions. At times I can walk perfectly straight; then, all of a sudden I might stumble into a wall. I frequently lean to one side. Because of numerous injuries to my left knee, I have little faith in it. As a result, when I lean to the left, I don’t confidently put my left foot out to correct the leaning, causing me to fall into the wall.

Staying perfectly balanced is exacerbated by the fact that both of my feet are slightly supinated, meaning I walk on the outsides of my feet. I was born pigeon-toed, so I wore corrective shoes as a toddler. It is believed the shoes may have over corrected, which threw my feet outward. Walking in heels? A bit of a challenge. 

At a level one on the Dizzy Scale, the world doesn’t shake or spin, nor do I feel spacey. My head doesn’t hurt, meaning it doesn’t feel like it’s going to implode. I feel pretty good; I call those my “up” days.

Let’s talk about proprioception. According to Sonoran Sun Pediatric Therapy, the definition is as follows:

To put it simply, proprioception is the sense that tells the body
where it is in space. Proprioception is very important to the
brain as it plays a big role in self-regulation, coordination, posture,
body awareness, the ability to attend and focus, and speech.”

With respect to proprioception, my right hand, left hand, and right leg are fine. My left leg, however, has problems, my foot in particular. It doesn’t know how close it is to a wall, so when I go around corners, my left foot  tends to get caught, and I end up tweaking my already-damaged left knee.

I have to be especially careful in certain areas of my house. Because I know I have difficulty, I normally push away from the wall, something my vestibular physical therapist doesn’t want me doing. She doesn’t understand. If the knee wasn’t a problem, then I wouldn’t be touching the wall. It’s the knee I’m trying to protect.

Moving on up the Dizzy Scale…At a two, I feel kinda spacey. It’s an annoyance, but I can still function and have a relatively good day. Level three: I've never been a blob inside a lava lamp, but that’s one of the ways I describe what it’s like to be a three on the Dizzy Scale. Another way to describe it is to imagine you are a spaceship going . . . "where no man has gone before!" *Swish swish* (Can you hear the music?)

Only you’re traveling at the speed of… a snail…while the stars are revolving ever so slowly in front of you. Are you visualizing it? No? Well, try harder. In my case, it seems as though my eyes are in the back of my head looking right through the stars revolving in space. If you were looked into my eyes, you wouldn’t see any movement, which is called nystagmus.


Another blurry picture of me.
Until a few years ago, this was how I felt most of the time, which is quite good in comparison. Because my eyes don’t move, I can still focus. It is my normal when I am not at a one or a two. I might not feel well, but I can still function. To you, it might be the equivalent of having a cold or a headache. It’s a nuisance but you can still go about your business, right?

Here’s another way to describe a level three. Imagine driving down a winding road in a convertible on a nice summer day with the top down. While going 40+ miles per hour, you’re singing along to the music on the radio and chatting with someone in the passenger seat. Piece a cake, right?

Now envision driving during a snowstorm at night. The top, of course, is up. I have to slow down to 10 miles per hour, turn off the radio, stop the chatting, and focus on the driving. I can still drive and get to my destination. I just have to con-cen-trate. That’s how I am when I’m at a three on the Dizzy Scale.

Next on the scale are numbers four and five, which is a combination of the lava lamp or Star Trek-y feeling and what is called oscillopsia. Have you ever watched a video where everything shakes? Well, check this video out: Oscillopsia. Here's another way to understand. Lightly put your ring fingers on your eye lids and move them around. I really dislike movies where all the scenes bounce around. They really need to follow the K.I.S.S. rule (Keep It Simple, Silly). I haven’t been at this level for a few years now. Whee!

A six and seven on the scale is mostly oscillopsia. I liken it to a bobblehead. An eight or nine on the Dizzy Scale is full-fledged vertigo where room completely spins, like my very first episode the summer before my senior year. 
Sometimes episodes last just a few seconds or a few minutes; sometimes they drag on for months and months and months! To get a taste of what vertigo is like, click on this link: Vertigo. Don't get dizzy!

Getting around at home without falling over and stumbling into walls is far beyond challenging. I have to use the walls and furniture to steady myself. At times, I must resort to crawling. I don’t even attempt to go outside, especially at night since I have no “compass.” Freshly fallen snow can be beautiful to others, but to me it’s a dizzying piece of space. 

I can do nothing besides lie in bed all day. I can’t even sleep it away since it keeps awake. I never know how I’m going to feel on a day-to-day, or even a moment-to-moment basis.

Remember early on when I said that it would be years before I found out what was wrong with my inner ears? In 2015, an ENT doctor ordered vestibular testing, which included, among others things, putting warm and cold water in my ears (water caloric test).

Below is the 4-page vestibular report plus the doctor assessment. I've obliterated the names of doctors, audiologists, and externs for privacy reasons. I have to warn you, though. These are medical documents, so, unless you're a doctor who specializes in hearing and balance, you probably won't be able to make any sense of it. I can't.

Just for your information, currently, I don't have a printer. Because of COVID-19, I couldn't buy a new one, nor could I go to the library, so I couldn't scan them into my computer as a one 5-page document (link). Instead, I had to take a picture of each page individually with my camera, then upload them onto my computer. Each individual page, minus the first page, is as follows:


The reports determined that there is extensive inner ear damage, especially in the left ear. To help me (and others) understand my condition, the doctor gave me the “bucket analysis.” He said that everybody has an imaginary “bucket.” For most people, that bucket is maybe a third of the way full. When we add to it the everyday stresses of our lives, the bucket fills up. Because of my damaged ears, my bucket is already nearly full. Any kind of stress will make my bucket topple over. Remember the catalyst I mentioned? Stress!

Sadly, the ENT doctor said there’s nothing that can be done. “It’s a dead end,” he said. Well, that explains all those years of torture. Another ENT specialist told me to keep active, so, when I feel well, I make sure to get up and do my core exercises. I really do not want to end up like those old folks who just fall over, so I do what I can with what little I have to keep my muscles stretched and toned.

I asked the doctor if I could still ride rollercoasters. He said to do whatever I can handle. So long, rollercoasters. I loved river rafting, too, but I doubt I’ll do that again. I’m so glad I went in 2009. I had a ball! It was nice knowin’ ya, white water.

2018 fan favorite, KellyCup MVP
I should mention that in the year 2000, I had the same vestibular testing done when I lived in California. An ENT doctor in Burbank ordered the tests but told me that he just couldn’t figure it out, so he sent me to a doctor at the world-renowned House Ear Clinic in Los Angeles, experts in hearing and balance. 

I visited this office on two occasions; both were a bit unpleasant. The first time, the doctor walked in, introduced himself, sat down, and began to read the reports. He look at the first page, and then looked at me with his eyes wide open. Then he read the next the page and looked back at me again in disbelief. After looking at another page, he looked back at me in complete astonishment. After looking at the last page, he was completely astounded. He said that according to the test results, I should be lying on the floor. (I happened to be feeling pretty decent that day.)

Then he finished by saying, “No wonder you’re so weird.” (Oh! That is a trigger word for me, but I didn’t have the strength to call him on it. I really wanted to punch him.) Because I was feeling pretty well that day, he sent me on my way but said that if I got dizzy again, to call the office, and they’d get me in as soon as possible.

Well, the next round of dizziness occurred within a year, so I called, but I couldn’t get in for a while. (What does the phrase “as soon as possible” mean anyway?) By the time I did get into the second appointment, the episode had subsided, and I was, once again, feeling pretty good!

There’s a law out there that my episodes seem to abide by. I don’t know what it’s called, so I’ll just call it the “by the time you finally get in to see the doctor, you’re feeling better” law. It’s similar to the “noise in the car” law. We’ve all had that experience where we hear a noise, and by the time a mechanic takes a look, it disappears. Well, if there isn’t a law, there should be one. Frustrating.

At the second appointment, the doctor was sitting about six feet away from me while two externs stood on either side of him.The three of them alternated between looking at me, looking at my chart, and talking among themselves. It was beyond impersonal. I felt like I was nothing more than experimental rat under observation. They might as well have just put me in a cage. 

The doctor never, ever told what was wrong, and I was incorrectly informed that I couldn’t have access to my medical records. As a result, I tried to find meaningful jobs thinking I was going to get better. Had he told me that my inner ears were permanently damaged, I would’ve applied for disability back in 2000, but he didn’t. I continued to look for high-paying, creative jobs not knowing my ears weren’t going to get better, but those jobs were always out of reach.

I’m a natural introvert, pretty shy, and tend to be a loner. I normally enjoy the company of myself, but chronic dizziness, anywhere along the Dizzy Scale, is extremely isolating. I feel very lonely and alone. I’m reduced to just a mere existence. When it lingers on for months on end, I truly wish I wasn’t alive. 

I can honestly say that it would’ve been better to die all those years ago than to survive and live with a life that can be so debilitating at times, especially when I just can’t seem to get any medical doctor to acknowledge that the dizziness and the trauma are related. Talk about being invalidated.

If you’ve read this far, you’re probably wondering, If she’s so dizzy, how can she even write this? Well, since I move up and down the Dizzy Scale, I tend to be productive when I’m at the lower end of the scale. Of course, I haven’t been a zero since the knee injury at fifteen. For the last few years, I’ve been feeling pretty darn good -- mostly a one and two. Yay! Stay that way! Stay! Stay! Stay! I cherish those days or weeks when I can think clearly and be productive because I never know when I’m going to go back in the cage.

I wholeheartedly believe that I've been in an upswing because I've been on disability for the last three years. In addition, I've not worked a stressful, full-time job for seven years. If I get pushed out into the job market again, I'm fairly certain that would only exacerbate not just the dizziness, but also the sleep problem and TMJD as well since they feed into each other.

My last vertigo episode lasted a whopping year! It started in August of 2015 and finally started to abate by the fall of 2016. I’m in respite from full-fledged vertigo, but I just don’t know how long will last. At any rate, I tend to be more productive when I feel better. 


So…

You say you’d rather be dizzy than deaf? Well, sir, let me tell you something. Vertigo will destroy your mind and your ability to concentrate. When the world is spinning, you won’t have your faculties. I can pick up a pen and not know why. I’ve incorrectly paid the house payment to the city. You won’t be able to walk to the mailbox without looking like a stumbling drunk. You’ll lose your dexterity and coordination. You’ll constantly drop things. You’ll do things you don’t normally do, like put your hearing aid in the refrigerator! My spinning world makes me feel trapped with no place to go. My head is in constant pain and feels like there's this enormous pressure from all directions. Yet I may look just fine to you.

I’ve been dismissed by medical doctors. Family members have invalidated me. Employers won’t want you. Co-workers will ostracize you. “Friends” will abandon you. I’ve been called buffet of unflattering names. I’ve been excluded from social gatherings. I’ve been accused of lying and exaggerating. People who haven’t experienced vertigo can’t even begin to try to comprehend. 

By contrast, being totally deaf doesn’t hurt. You can walk. You can run. You can lift. You can think. You can even dance. 

You got on disability on the first try just for being deaf when there are numerous high-paying jobs that a hearing-impaired person can get — postal delivery, Fed Ex, UPS, warehouse work. In my opinion, deafness is comparable to not having a college degree or a high school diploma. 

I know someone who used to work at a beer canning company who made $28 an hour, plus time and a half, working 12-hour shifts. Let’s do the math. 

8 hours x $28 per hour = $224 per day PLUS
4 hours x $42 per hour = $168 per day

$224 + $168 = $392 per day 
$392 x 5 = $1960 per week
$1960 x 52 = $101,920 per year

Wow! Over hundred grand and it doesn’t even require a degree. One of the small requirements is the ability to stand on your feet pretty much the entire time, something I can’t do, but you can.

If you had the ability to experience just an excerpt of what I what I’ve dealt with since I was a teenager, you’d gladly eat your words. I promise you. I know without a doubt that you’d much rather be deaf than to deal with all the “drama,” the word you so callously slapped upon me. I'm beyond certain that you’d be eternally grateful that you’re just… deaf. You’ll be on your knees thanking God that you can’t hear music.

I hope this post wasn't too much to handle? I it was, never fear. The next one will be on the lighter side. Till next time, take care.








Comments

  1. I'm reminded of some lyrics I wrote in a song called "Sugar Coat."

    As if it’s just a game
    My heart rolls the dice
    I’m dizzy with that dame
    I put all my fears on ice
    And I swear in God’s name
    I’m in paradise

    A rare instance when dizziness is a good thing!

    ReplyDelete

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