Battling to find the Beauty
In 1861, Prosper Ménière, a French physician theorized that attacks of vertigo, ringing in the ear (tinnitus) and hearing loss came from the inner ear rather than from the brain, as was generally believed at the time.
The specific underlying cause of Ménière’s Disease is still unknown.
My first attack happened on a bus in London as I headed home. Waves of intensifying nausea, combined with a sense of not knowing — connection with myself, and where I was ebbed away. I tried to remember what I had eaten, and knowing I did not want to be sick on the bus.
Vertigo hit as I lurched myself from the bus towards the pavement. In that blink of an eye the world started to violently spin. I was lost, falling, vomiting, panicking and terrified.
As it started to stop, I just sat … leaning against a wall … the blur of movement became more focused … people walking past. Struggling to work out what had happened, searching mentally for moments of certainty, a sense of what time it was and where I was?
I could see my belongings scattered around me, I smelt of vomit, my hands were dirty. I was so tired, so so tired. From sitting to standing, slowly walking towards home using the buildings to steady myself.
At home, without any words, I fell straight into bed. The ‘horror show’ journey home from work … I could not answer questions, unsure of what actually happened, days of tiredness followed. It was that moment my life changed, I felt scared — afraid of myself and what dangers existed in an unpredictable ‘malfunctioning merry-go-round’ spinning faster than the speed of light.
Each day … the unease of ‘not knowing’ … negotiating the unsettling sensations of personal and public transport, navigating the ‘sensory overload’ of routine places, socialising with distorted hearing and intense exhaustion.
I felt I couldn’t go to the doctors; I didn’t know what to say.
Meniere’s Disease is … Invisible. Embarrassing. Difficult to Explain.
From my mid 20’s to mid 30’s:
- I looked fine when I did seek medical help; the regularity of asking for help labeled me as ‘delusional’, recorded in my notes as ‘showing signs of hypochondria’ and was prescribed pills for anxiety and other pills to help me sleep.
- The day I demanded to be referred to the Ear Nose and Throat department at the local hospital … the doctor agreed ‘ just to get rid of me’. I walked out thinking I had won a battle.
- It took 12 months to diagnosis. Meniere’s Disease is a diagnosis of exclusion. Every test; every result; every hearing test; every comment of ‘so why are you here; you are looking well’ … all shaping the armour I wore when talking to doctors. The spiral of tension grew alongside my increasing attacks. At diagnosis; I took the prescription and went home knowing this was it … for ever, a life of medication. I learnt that following all the advice, maintaining health to the best of my ability didn’t make a difference, neither did the self-sabataging years. Biology won every time.
- The medication prescribed prochlorperazine blocks the dopamine (D2) receptors in the brain. Dopamine is a neurotransmitter found in the brain that helps exchange neural-signals among the brain cells. It controls moods and behaviour. Working to check dopamine receptors in the area of the brain that controls nausea and vomiting. Blocking neural message from between the gut and the Chemoreceptor Trigger Zone (CTZ) of the brain. The blocking of the dopamine receptors also reduces hyper-anxiety and related psychotic disorders as the drug curbs the overactive dopamine in the brain. Prochlorperazine is the active ingredient in antipsychotic and antiemetic drugs.
- Looking back; I lived a medicated life to manage the violent and unpredictable ‘attacks’ of rotational vertigo, pressure and fullness in the affected ear, distorted sounds and progressive hearing loss … for approximately 10 years.
- It was hidden in my life, very few people knew. I learnt that there was no point saying anything ‘there was nothing to see’ and seeing is believing,
“Thank you for personifying something that is completely foreign to most people. Thank you for making something not fixable, in my situation, beautiful. I’ve never seen anything like this and I feel like your works should be displayed in every audiology office to bring the deaf/audio compromised folks something beautiful to sit with and fall into when all of the doubt and uncertainty is taking over. You have an incredible gift of healing. “
Silently, and unseen Meniere’s Disease consumes every breath and emotion. As my disease progressed, life shrunk to ‘existance’. I started to experience ‘drop attacks’ … I was a danger to myself and to others. Fear, terror burrowed into my bones. As the attacks increased, as I just waited, counting the minutes, hours or days before the next … my doctor asked me ‘how long are you prepared to life like this?’
I said yes to a labyrinthectomy, a surgical procedure that removes the balance center of the inner ear. I said yes because I was exhausted and desperate for anything other …
Desperation limits understanding, distorts decisions. I barely existed. I only heard that the unrelenting vertigo would stop, and complete loss of hearing. I believed it would cure.
I am still detangling the deluded decisions made after the operation. It took years for me to acknowledge that the removal of my inner ear, just created a different vestibular disorder.
I recently re-read my patient notes; my quality of life, the isolation and disability was comparable to ‘an adult with life-threatening illnesses’. That the daily, progressive and dangerous attacks of acute vertigo; reduced my quality of life even further, considered alongside my quality of life considered a ‘non-institutionalized Alzheimer’s patient or an individual with terminal cancer — six days from death’.
Meniere’s Disease; after the destruction of the inner ear; disordered vestibular system is still invisible, destructive, disabling and while officially deaf, I hear stubbornly perverse, rebellious, wilfully obstinate and screaming noise. Constantly.
Words barely skim the surface, so I doodle.
