Nothing is better for helping you understand mental illness than waking up to find the floor isn’t where you left it. For years I prided myself on my brain: it delivered great GCSEs, studied for a degree, was uncannily helpful in “Name that Tune” quiz rounds, etc. Getting it to that state took a great deal of work: I’d read incessantly as a child, memorising everything I laid my hands, and then wrote and wrote so many ideas that the middle finger on my right hand is still deformed from hours spent turning out plays, essays and short stories. When I revised for exams I would forget to eat or drink for hours on end and I would joke: who needs a healthy body when you live inside your head? But all that reading couldn’t prepare me for putting one foot out of bed before crashing the other one straight into the wardrobe door. My legs felt like I was stood on a ship; my brain knew I was stood in my bedroom. Logically, I figured, an unexpected earthquake is happening in E15. Except it wasn’t the earth that was breaking, it was my well-manicured brain and I panicked.
Six hours later I stood outside the school where I work, doubled over, watching the pavement move towards me then waft away. I’d spent the whole day taking paracetamol and praying it would stop but to people walking past I looked like a young woman who’d had too much to drink. Honestly, I felt like a young woman who’d had too much to drink. The only time I’ve ever been violently ill from alcohol was after being plied with Absinthe by a mischievous Irishman whereupon I lost the next 3 hours. I retain now only the distinct memory of vomiting every 15 minutes as the room span around and I cried into a pillow. I hated that feeling so much it took me several years to drink more than 2 units of alcohol in one sitting and now, here I was, sober as a judge, and spinning nevertheless.
Work had to go. I limped on for a week or two but the word nausea doesn’t adequately explain the feeling of trying to maintain order among 30 students when your brain is convinced their desks are dancing across the floor. Imagine going ten rounds on the Waltzers before leading a game of musical chairs at a post-icrecream phase of a children’s birthday party and you might start getting close to how I felt. Mind you, being at home wasn’t much better. On one occasion the swaying was so strong I fell down our stairs; on another day I opened the fridge straight into my face.
The most unexpectedly dreadful thing was my sudden inability to concentrate. Reading was vomit-inducing: words bobbled as if on a bouncy castle and reading a newspaper left me with travel sickness even though I hadn’t left my own living room. To write I worked out that if I clung onto the table it tricked my brain into believing the room must be still, even if it didn’t feel that way. Listening to people speak was pretty difficult but I developed excellent powers of feigning interest even though ninety-percent of my brain was focused on keeping my body still and reducing the stomach flips. For someone who spends much of their time reading, writing and chatting, the inability to do any of these things was utterly demoralising.
After four weeks of non-stop woozy I finally got a diagnosis though I’ll admit it didn’t provide much comfort. Driven to despair by GPs who seemed baffled by my symptoms I stumped up the cash for a session with an Ear, Nose & Throat specialist. He marched me through a melee of tests all of which proved my senses to be absolutely normal. Then the doctor asked me to stand up, hold my arms straight out in front , close my eyes and while marching on the spot I had to count out loud: “One…two…three…four…”
On the count of forty-eight the doctor asked me to open my eyes. He was gone; I was facing a wall I had never previously seen. I spun around to the doctor now stood behind me. “What happened?” I asked. “Well,” he quipped.”I didn’t move the room.”
To this day I am baffled by how that was possible. I would have sworn on my life that I marched on the spot without moving – I never felt my feet move in any direction except up and down yet my body was now 5 paces to the left and turned 180 degrees. Clearly there was a problem.
The vestibular nerve runs from your inner ear through to your brain carrying messages about the direction o your body. If you sway left or right, fluid inside your ear canals brush nerve endings that then send a message along the vestibular nerve and into your brain so that the muscles in your legs, arms and abdomen move to correct the swaying and keep you in an upright position. This is how humans can stay upright, just about, when stood on a rocky ship. In my case the nerve was damaged, likely inflamed, and this was causing problems with the messages. It is the same system that causes short bouts of vertigo but the fact that I’d had the dizziness for such a long time was a concern. The most likely cause was inflammation from a virus or bacterial infection; more serious was the remote possibility of a brain tumour and most bizarre was that calcium deposits had floated into the ear canal and were now causing an impact quite disproportionate to their size. Finding out would take time and chances were it wouldn’t be a quick cure. Throughout all my consultations I was told the effects would likely last a minimum 6 weeks.
For three more weeks I would wake up to find the world still moving. Sometimes it was oddly comforting. When lying in bed at night it would feel as if I was being gently rocked to sleep. I also became accustomed to the ground moving and found ways around it. After a few weeks I bought a walking stick to help with walking in public. The third leg added stability and reducing my lurching (something I was terrified of when waiting near train platforms) and it made people less likely to assume that the cause of my dizziness was substance abuse.
More and more I thought about people who suffer chronic life-changing illnesses, especially ones that can’t be seen such as Tourettes or Schizophrenia. How I wished I was afflicted with some visible sign of illness: an eyepatch, a cast, even the walking stick at least made me feel like I was ‘explainable’, as though people saw it and knew I needed a bit of help and that was okay. The problem with mental illness is that you don’t have the luxury of a visual cue with which to shorthand your disability. In desperation, during the final weeks of my illness, I quipped that if it didn’t soon get better I was going to create business cards to hand to people as an explanation for why I was constantly grabbing the wall.
As the weeks wore on I also kept thinking about the many students I had taught with various forms of attention or hyperactivity disorder. Although I had developed good relationships with many such students I’d always been a bit sceptical of their ‘so-called illnesses’ and a voice deep inside me had long questioned if it wasn’t just ‘bad behaviour’ dressed up in a polite modern term. But now, without my ability to read, or concentrate, or even just stand still, I found myself empathising and internally apologising for ever thinking otherwise. Facts were, no matter how hard I tried to ‘pull myself together’ or ‘make myself read’ it was simply impossible and that impossibility was boring and frustrating and lonely, and sometimes those feelings conspired to make me think and behave in ways that I’m not proud of. I became whiny, and difficult, sometimes even downright rude and I hated myself for it even more. Not only could I no longer think properly I even struggled to be a nice person; learning that about myself was a major disappointment.
This experience doesn’t mean I now believe every child ever diagnosed with a conduct or attention disorder has been correctly assessed nor am I excusing horrendous behaviour because of mental illness. But I do look back at my scepticism and I think: If I could so quickly lose my ability to read, write and concentrate, is it beyond belief that this is what happens to other people? Given how off-kilter the world looked to me, is it possible that other people who fail to behave normally are also experiencing something similar? It is so comforting to believe that we are in control of our brains that suggesting otherwise can make us feel irksome. But the brain is an organ just like any other in our body. With good reason no-one tells your liver to pull itself together or demands your broken arm to reset itself. Neither is it reasonable to believe that all people with mental health problems are either making it up or have magical capabilities to overcome the issues for themselves. Sometimes brains go wrong and if you don’t believe that it’s probably because you haven’t experienced it. And while that makes you more lucky than it is currently possible for you to imagine it also means you must work harder to diminish that sceptical scathing inner voice who tells you that mental health problems aren’t real.
In the third week of July I awoke ready to find out the results of an MRI the doctor had ordered just in case of a dreaded (but highly unlikely) brain tumour. As I rolled out of bed I customarily clung to the bed and as I began walking towards the hallway I felt horribly sick. My legs felt like I’d just walked off an ice-rink. I went to groan and complain about the never-ending spinningness when I realised that nothing was moving – nothing, except for me. The sick feeling was my brain trying to re-adjust to things not moving and by the time I got to the doctors office I knew that my scan would show no tumour. After nearly 7 weeks the messages were getting through and I had my brain back.
It’s now a year on and besides for one small relapse the world has stayed remarkably still. My only sadness was that I had become so used to being rocked to sleep I found stationery snoozing quite difficult to achieve in those first weeks of stillness. Slowly, however, my brain became so readjusted I no longer really remember what the swaying felt like or how it was that I could suddenly bank to the left without even trying. What I can remember – and what I expect I will never forget – is how frustrating and lonely it felt to be in a world but not the same world as everyone else. On reflection the people who best help with the lonelineness and frustrations of that situation were the people who remained patient, asked questions, allowed me to slow down conversation, made text bigger when I needed or gave me breathing room to do things in my own time. Now when I meet a student who seems overwhelmed by the school environment I try to do the same things for them and have found that many students – whether labelled as AHDH, ‘difficult’ or otherwise – can do remarkably well if one thinks about what they might need given that the world will look just that little bit different for them.
Vestibular neuronitis is a horrible name for a horrible infection. I hope never to have to fight it again. But even worse was my realisation of my own prejudices towards mental health; a prejudice that I hope to keep fighting for a very long time to come.
7 thoughts on “What My Ears Taught Me About Mental Illness”
Beautifully, affectingly written. (‘Moving’, you might say… if you were someone with an inability to avoid any opportunity to insert a terrible pun…) I didn’t realise it had gone on for quite that long, or that you’d been teaching for weeks with it! You’re an actual, bonafide trooper.
For what it’s worth, physical illnesses and disabilities are often invisible too. I get death glares every day, frequent verbal abuse from strangers and have been assaulted more than once for using mobility aids (cane & wheelchair) while looking healthy on the outside. I have Ehlers-Danlos syndrome type 3 – devastating, incurable, untreatable & completely invisible in itself – and rapid-cycling bipolar disorder. I haven’t been able to work for 8 years now (I’m not quite 27 yet).
It’s not really a mental illness though – mental illness is depression, schizophrenia, bipolar etc. This is a neurological condition…huge difference.
I think this is a tricky area as someone who has previously been diagnosed with mental illness but suspects that it was not easy to tell whether this was a result of physical illness – afraid most GPs are just not good at this and will always take the easy route IMHO. Brave of you to blog about it and pay for specialist advice. The general point, which I am discovering having engaged more with health issues in education, is that everyone deserves a right to be understood for their specific situation, but there is no guarantee that others will be able to deliver this understanding. Life is unfair. I hated this concept until fairly recently and as a child used to write essays about rising up with my peers against over directive parents. Makes me smile now.
Agree with everything you’ve said here. That it had a physical cause did, and I hate to admit this, caused me a sense of relief – as if somehow that meant that I hadn’t caused it myself. But that’s a really ridiculous way to think about mental illness because even if it isn’t a *physical* issue we have to remember that our thoughts ARE part of our physical make-up (if you see what I mean?!)
What I do hope is that people get better at bearing with and *trying* to understand illness even though you’ll never understand fully. Or at least just appreciate you can never understand fully.
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