Walks, runs, relays, ribbons, wristbands, and bracelets, it’s almost endless the means by which people concerned about serious illnesses attempt to increase awareness of the plight of those affected by afflictions such as heart disease, diabetes, Multiple Sclerosis, and cancers of all types. And deservingly so; few things are more heart-wrenching than seeing someone in the prime of life saddled with crippling illness, or worse, through no fault of their own. I’ve given in the past and will do so in the future; I hope you have and will do likewise.
Increasing awareness is an important first step in attacking any problem and critical when it comes to disease research because it not only generates a concerted and compassionate public ready to battle the affliction but, more importantly, helps turn on the cash spigot, both public and private, required to properly do the research to find treatments and even cures.
The problem is, however, not every sickness, especially many chronic illnesses unseen from the outside, are nearly as well-known to the general public as other, more frequently-discussed ailments. It’s difficult for people to understand how harshly someone is being impacted when they cannot see what an individual is going thru, when there is no scar, no cane or crutch, no visible outward sign. But these illnesses can be just as life-altering. They just don’t get the publicity and, thereby, don’t get nearly the attention, nor funding, that other diseases receive.
For example, did any one of you know that this is Balance Awareness Week? Did you even know such a thing existed? Does anyone care? I don’t blame you. Besides a roadside sobriety test, I suppose, when’s the last time anyone really thought, or cared, about their balance?
Me either. Until a few years ago, that is, when, after going thru a series of tests following some hearing difficulties, I was told, “You have Meniere’s disease. We don’t know what causes it. There are some things that we can do and some things you have to do, but there is no cure.”
Trust me, things got real serious, real fast.
But what is Meniere’s disease, you ask? Well, Meniere’s is a highly complex and rare vestibular disorder affecting the inner ear that causes a serious disruption in an individual’s balance, hearing and quality of life by causing sudden and unexpected severe attacks of violent rotational vertigo, a feeling of fullness and pressure in the affected ear, a loud ringing known as tinnitus, and progressive hearing loss, as well as nausea, cognitive impairment (brain fog), fatigue, anxiety, and depression. Other symptoms include insomnia, migraines, hyperacusis (an aversion to sudden or constant sounds) and photophobia, or an inability to withstand bright lights.
That’s what the books will tell you; let me break it down for you, first person style. Here’s what a Meniere’s attack does to me: First thing I’ll notice is a sweat will break out…that’s a sign that trouble is brewing. I’m lucky and may get five minutes warning; many people get no warning. Or maybe I’ll awaken at night and sit up and – Presto! – the room starts spinning. Either way, it’s grab the trash can that I always keep nearby and get to the bathroom as quickly as possible, stumbling if able to walk, crawling if unable to stand, by now, dripping in sweat and fighting back nausea as my body reacts to the situation by thinking it has been poisoned as a result of the mixed signals that my brain is receiving from my faulty “radar.” And from that point on there may be hours of throwing up and lying in pools of sweat on the bathroom or kitchen floor – or even the back yard once, alternately burning up or freezing, unable to open your eyes, praying that you’ll pass out, or soon feel better or maybe just die, sometimes just crying. And with every attack more and more damage is done to your hearing and you become progressively deafer in the affected ear. In my case, I am now effectively deaf in my right ear.
I’ve also had to eliminate all salt, caffeine, and most processed foods from my diet and I try to drink water and must take a variety of medications to deal with issues such as migraines and insomnia from the tinnitus, which is like having a smoke alarm going off in my ear 24/7. I also wear dark glasses when out and rarely leave the house without earplugs because, as odd as it is to be going deaf, there are some sounds that seem so loud that they are painful and, thus, need to be blocked.
There are also circumstances that I have to avoid, such as large groups of people. Two, three, four people talking and I’m fine, as long as the environment is quiet and I position myself properly and utilize a little lip reading, but more than that and all I hear is a room full of Charlie Brown’s teacher, “Wah, wah, wah, wah.” Weather changes, more specifically, barometric pressure fluctuations can also bring on migraines or bouts of nausea and periods of instability or imbalance. My plans can change on a dime, literally on a moment’s notice.
So while the odds are that you’ve never even heard of Meniere’s disease, there are folks out there living a nightmare. And the worse news is that, over the past several decades very little progress has been made in finding either the cause of or a cure for this illness, which some doctors have called the “worst thing you can get that won’t kill you.”
That is no understatement as back in 2000, researchers at the University of California-San Diego published a study entitled “Impact of Meniere’s Disease on Quality of Life” which highlighted the severity of the disease’s impact on the physical and mental health in Meniere’s patients. This study found that the quality of life of a Meniere’s patient, while not actively experiencing vertigo, was comparable to adults with life-threatening illnesses such as cancer and AIDS, and, even more shockingly, that during periods of acute vertigo, their quality of life dropped considerably further, putting it on par with non-institutionalized Alzheimer’s patients as well as with cancer and AIDS patients, six days from death.
Worst of all, while you have probably never heard of it, it appears the government seems to prefer to ignore Meniere’s as well, despite the fact that it is a listed official Social Security Impairment which strikes roughly 0.2% of the population, approximately the same rate as Multiple Sclerosis does. Unlike MS, however, which received $98 million in research funding from the National Institute of Health in 2016, Meniere’s was awarded its normal total governmental research support: zero. Zilch. Nada. Nothing. No dollars. Not even one.
Now I don’t want to appear to single out MS; Keith Stromberg is an outstanding advocate for that insidious disease, and while I wouldn’t wish Meniere’s on my worst enemy, I wouldn’t trade places with Keith for anything, and I certainly don’t want to belittle his efforts or the impact of MS of people’s lives. It’s just that the rates are very similar and it’s easy to see how disheartening this funding imbalance can be to a Meniere’s sufferer. This disease came from out of the blue and basically stole my life. There’s not a single aspect that hasn’t been altered since it came along. I stay tired simply because my body is constantly fighting the mixed signals my brain is receiving and ceaselessly trying to find its “center” of balance, as though I’ve spent the day walking a tightwire. I usually can’t sleep without medication because I have a steam kettle whistling in my ear day and night, and will have until the day I die they say—unless they find a cure. And that’s hard to do on pocket change these days.
So, yeah, Meniere’s is life altering. In every way. And I’ll apologize up front if I’m a little testy at times from lack of sleep, or frustration, or simply due to that screaming in my ear that never really goes away, or maybe just because the weather is changing and a cold front or rain is approaching. Likewise, excuse me, in advance, if you walk up on my right rear and start talking and I appear to ignore you and possibly even look down at my phone and maybe even walk away. Truth is, I probably never even knew you were there.
I can assure you, going deaf is not the way to win any popularity contests.
But I suppose every cloud has a silver lining and the bright side to single-sided deafness is I don’t have to ever worry about buying high end audio equipment or surround sound again; my ears are stuck in the stone age, and my TV will forever more be displaying closed captioning. Plus, I only have to plug one ear when political ads are running, and simple positioning can serve to effectively mute someone should that become necessary.
Lastly, there is an old saying that, “Everyone is going thru a battle that no one else can see.” And the key thing to take from all of this is that we never really know what someone is going thru, simply from their outward appearance. Just try to keep that in mind and treat everyone accordingly, with patience and understanding. The Golden Rule goes a long way.
Remember: Tomorrow it might be you.