Meniere’s Disease and Mercy
January 13 2020
What does mercy mean to you?
Strictly speaking, mercy applies across differentials of power: when those who hold it show virtues such as kindness, compassion and forgiveness to those under it. We might see mercy as one of the great tests of our free will: we don’t have to act this way, but, for whatever reason, we choose to.
We might, for example, put that spider back outside instead of squashing it (or we might not, let’s be honest). That would be mercy. But that’s an easy one. What about to other humans, where any talk of power can quickly become vexed and political. To show mercy is to exercise power, to acknowledge you have power.
Mercy becomes tricky when we consider the related virtue of justice. If you believe that justice exists in the world, then where does mercy fit in? If justice is getting what we deserve, then would mercy not be getting more than we deserve? How can it be just to receive more than you deserve?
Practicing mercy can be fraught, especially for the more cynically minded. Isn’t it ultimately better for a child to punish them strictly, even ruthlessly, rather than to go easy on them? Can we really justify giving money to a homeless person when we suspect it will be spent on smokes or booze? Should we really practice that most difficult of virtues — forgiveness — to people that we aren’t sure are deserving of it?
Mercy is tricky. Placed alongside the more straightforward virtues, you might even say that practicing mercy is a tough sell. Perhaps that is why it is often assigned more to divine sources of virtue, rather than earthly.
And this leads to perhaps the more difficult question: how is mercy exercised upon us? Do you feel like you have been granted mercy in your life: by family, friends, strangers; even by more ambiguous concepts such as Mother Nature, the universe, or, if you are so inclined, God?
I have asked a lot of questions there, sorry. I don’t really have answers to any of them. What I would like to do is share my experiences of how I have seen mercy manifest in my life. If we are able to perceive mercy in our lives, all around us — dropping ‘as the gentle rain from heaven’, as William Shakespeare suggests — then perhaps we can find the reason to practice it ourselves.
I have had Meniere’s Disease for almost 3 years. It came in a flash: I was, one minute, at work, feeling mildly dizzy and realising it would be a good idea to go home; to half an hour later rushing through my front door to the toilet — as far as one can rush with intense, head spinning vertigo — and being violently sick into the porcelain.
The experience was at once harrowing, bizarre and strangely transcendent. Harrowing, because Meniere’s attacks are best described as like the aftermath of a heavy drinking session, exacerbated perhaps by a most unwise pull from a joint (they don’t say ‘beer before grass, your on your ass’ for no reason), yet without the safety and security of cause-and-effect in knowing that you have arrived here by your own doing and that it will sure enough soon pass.
Yet it also soon transformed into more. As I was lying on the fold out couch recovering, and my air conditioner proceeded to poor water on me from the heavens — which I later learnt was due to a conveniently-timed blocked filter — I felt like something greater was at work.
It took another two similar attacks, the last one requiring an ambulance to be called, to get myself checked out by an inner ear specialist, whereupon I was diagnosed with the medical head-scratcher that is Meniere’s Disease (MD from hereon in, because with spelling like that, who doesn’t love an acronym).
It was around this stage that I started writing about MD — in fact, it was one of the main reasons why I started ‘blog’ writing in the first place. This was the first in series of positive life changes and realisations — ranging from minor to existential — that occurred only because I had MD. This disease has been, in its entirety, by far the most important and persistent life lesson I have encountered.
The first time I wrote about MD, it came from the perspective of the massive wakeup call it gave me about how we understand health and wellbeing.
When I was first diagnosed, I was close to hopeless. Conventional medicine is almost stunningly unhelpful towards MD — not from lack of trying (I hope), but because they simply do not understand what its root cause is. The treatment I received from the specialist was unhelpful to the extent that it bordered on cynical: shopped around to a series of other specialists for routine checks to confirm something that was essentially self-evident, and then, roughly $1500 later, sent away with some anti-nausea tablets and advice to eat less salt until my next check up.
The only source of hope came from a session with the ‘fringe’ treatment of cranio-sacral therapy. It was, for reasons I didn’t understand then and only slightly understand better now, a distinct turning point in my battle with MD. More broadly, it was a catalyst for opening my eyes to the mysterious self-healing potential of our bodies, which conventional medicine often acts to hinder rather than assist.
Looking back now, while I was trying my best to be hopeful, the underlying tone of my writing was of being pissed off: at medicine, at the disease itself, at the world for giving it to me.
The second time I wrote about MD was from a far more optimistic angle — helped by Meniere’s diary that I had started to compile detailing the gory details of every attack. I was able to see the remarkable synchronicities that were occurring throughout my vertigo and nausea attacks, where they would occur in almost the precise window that would minimise the impact on my life.
The disease, with the suffering and soul searching it necessitated, was also triggering a quite profound spiritual transformation in me. While I was certainly healing, in that the attacks were becoming less frequent and severe, I was able to witness myself be more detached and aware during the height of the attacks. I was more accepting that there must be a reason for what I was experiencing, and more aware that — as tempting as it is to think otherwise — this kind of suffering was not actually unique to my poor self.
For reasons that are many and perplexing, suffering exists in our current world as a near-universal human condition, and to experience it acutely provides a pathway to a form of empathy that cannot be faked or imagined.
When my MD was at its worst, I suffered largely alone. My family knew and helped, and my mum in particular (who has also struggled through vertigo issues) was fantastic in taking care of me. But I shared what was happening with hardly anyone, aside from some general mention of vertigo and nausea, and had no interactions with anyone else who suffered from the disease.
I eventually started a blog primarily as a way to articulate what I had learned, and was still learning, from the condition. It was also a bit of a Hail Mary mixed with some wishful thinking: what if the point of it was to share it with others, and once I do this it would disappear? Of course! Spoiler alert, it hasn’t, but it has certainly set me on my way towards being a writer.
Writing is the closest thing I have to artistic expression, the next closest being the 5 chords I can play on guitar. After several years of toiling away in the straight jacket of academic writing, my blog posts allowed me to try and shape my writing as works of ‘art’: pieces created to evoke a particular experience from anyone who had the time to immerse themselves in my writing, rather than just convey information.
The problem was, as is the case with most people who decide that they are artists, there weren’t many people interested in it. My ego suffered. It was getting slightly ridiculous how much effort I put into blog posts that a handful of people were reading, literally going over every word and punctuation choice until I was satisfied. It soon dawned on me that if I was going to compromise my writing, and I wasn’t, then the only option to justify the time I was putting in was to take my writing to more people (enter: Medium!).
But back to MD. I find it odd now that I didn’t even consider that there was an MD community that I could be a part of. In fact, it now seems utterly ridiculous: something to do with my belief that this was wholly my own personal journey to pass through and survive; mixed with a dash of self absorption and the sense of satisfaction gained from the thought that no-one else could possible relate to what I was going through.
Coinciding with the decision to be more active with promoting my writing, I started to look around for other bloggers who had been writing about MD. Eventually, this lead to join a few Facebook MD support groups.
These groups are complex online spaces (although, what online spaces aren’t these days).
They are, first and foremost, an incredibly valuable source of mutual support and advice. It was from posting there that I found out that it was not just salt that was a significant trigger for many, but also sugar, alcohol and — to my horror — caffeine. Commenter after commenter provided their experiences with caffeine, the most helpful of which reassured me that decaffeinated coffee actually isn’t that bad. I am now, to the shame of my former self, a decaf drinker (with soy no less, thanks to my parallel discoveries about the dilemmas of consuming dairy).
As these groups became a constant presence in my Facebook feed, my initial want to have this suffering all to myself shifted to relief to know that there were hundreds of others dealing with this condition. In fact, not just many, but most of them seemed to be suffering to a greater extent than me.
And this is where I am forced to return to the subject of mercy.
At times, these groups can be almost overwhelmingly sad, even heartbreaking. People post in the midst of attacks, utterly hopeless and bordering on suicidal, reaching out to the only understanding portion of humanity that they have access to at this time; a fact that will resonate with many people with chronic illness, one of the main complaints is a lack of understanding and empathy from family and friends.
One wonders how many have not made it, lost to the world and the group, immediately replaced by more and more new members, remembered only through the occasional memorial from one of their loved ones, thanking us for doing all that we could.
I have thought about leaving these groups a few times, wondering whether it was counter productive to my healing to have to constantly bear witness to the disease in this way. There are not the occasional posts from other frustrated members, pleading for the space to be more positive and reassuring; less hopeless.
But these groups, with their same questions repeated over and over yet received with the same forbearance from those wiling to share their experiences again, their same frequent bouts of depression, punctuated by measured inspiration from group Admins, and redeemed by often sublime moments of meme magic from those who have maintained their sense of humour. These groups are a constant reminder of the mercy that Meniere’s has granted me.
While certainly hard earned, the lessons that MD has given me are numerous. Because of it, I am a far healthier person: I have quit not just caffeine but also alcohol because of MD, and am a borderline salt Nazi. Because of it, I am (or trying to be) a writer. Because of it, I am a much more spiritual and virtuous person.
Yet I have only been granted these lessons through a particular exposure to MD: one that was both harsh enough for me to undergo the type of suffering necessary for these transformations, but also merciful enough to never overwhelm me. To never leave me sinking in a haze of interlinked and inseparable nausea and depression — where you realise that physical and mental health are but two sides of the same coin.
But why was I granted this mercy?
What would justice be in this situation? What do I do, through my own free will, that causes me to not undergo the constant and acute suffering from MD that others experience? Can I really believe that everyone single one of those souls stuck in the depths of Meniere’s misery have sunk there from decisions of their own making?
I still have vertigo and nauseas attacks. I occasionally still experience battles with poor mental health. And even if I can’t compare it to the general populace — not that there is anything more futile and misguided than comparing our sufferings — I can always refer back to my fellow MD warriors.
I could suffer MD for the rest of my life, and I can be reminded that it would be just, if nothing else. To suffer less, to have more than that, would be mercy; it would be more than I deserve.
Can we live in a world where the default mindset is to give people more than they deserve? Maybe — although it may still be a little way off. Maybe the mystery of mercy is that to do so is as much for our spiritual benefit as it is for those on the receiving end: that is, we don’t have to justify it at the receiving end. Maybe Shakespeare was right that, as mercy falls down upon us, ‘it blesses him that gives and him that takes’.
