Coping with my spinning world
Nicola Shulman
At first, I thought it was the weather: 11th April was the first fine day of the year. By that I mean the sun was out and high enough to emit a heat you could feel on your face, like a single-bar electric fire. I met an old friend for lunch in the local park. We took our trays outside and sat with the pigeons, screwing our winter faces up against the brightness and shading our eyes with chalky hands. The sunlight flashed on the boating lake, birds twittered from the great pendent lattices of the London planes. I felt great.
That evening, though, I was on my way to supper with some friends across London, and something peculiar was going on. I felt a bit sick, a little glassy and restless. As we got out of the cab I thought: that weak sun was hotter than I realised. I need some fresh air. I must go inside and sit down. No, thank you, just a glass of water. Why is everything in the room flickering and throbbing, I wondered. I really must go home.
But when I stood up the floor was gone. My feet passed straight through it, like when you miss-step on a dark stair and drop through space for an eternal second. I fell. The walls wheeled upside down, the ground liquefied. I vomited and clung to the bannister in the hall as to the rail of a pitching schooner.
Lord knows how we got back that night. My slightest movement set the world spinning unstoppably. The thought of traversing three whole postal districts, each of them mined with turnings and lane changes, made me gibber with fear. It took us two dreadful hours and a long stop at a mid-range Marylebone hotel. I remember crawling across the lobby
there, retching and groping at the furniture for support. The hall staff watched me with indifference, assuming I was drunk.
Funny, what one does in extremis. I took this as a slight; and, impelled by whatever it is that makes casualties in speeding ambulances check that their underwear is a matching set, I addressed the receptionist, who could not have cared less, in a bright and reasonable voice. ‘I’m not drunk,’ I assured him, without moving my face from the carpet. ‘There’s something wrong with my ears.’
I was right. As you may know, ‘Doctor, I feel dizzy’ is a sentence that doctors dread. Leaving aside the risible derelictions of the adjective itself, it’s a useless diagnostic clue. ‘Dizziness’ presents in dozens of illnesses, from fatigue to brain cancer. In the 1990s it was briefly in vogue as a symptom of CJD, and surgeries were overrun with anxious patrons of burger restaurants baying for blood tests. Most of them did not have CJD. But the increase in complaints led to an increase in diagnosis – and understanding – of the thing that had happened to me on 11th April. Two months later, at the London Hearing and Balance Centre, Professor Linda Luxon looked at her charts and explained that while I was enjoying my walk in the park, an otherwise symptomless virus had caused a catastrophic failure of the vestibular system.
The vestibular system lives in the bony labyrinth where the inner ear meets the skull. It controls balance. When it goes awry, your head movements deliver the wrong signal to the brain, with the result that the stable and solid visible world rolls off its axis. You cease to experience the effects of gravity.
Unlike most complex systems in your body – the lymph, perhaps, or temperature control – you can understand how the vestibular system works just by looking at it. Three little semicircular tubes of fluid – one horizontal, one vertical and one, yes, diagonal – act as spirit levels, working together with your eyes and the soles of your feet (hence the unsolid ground) to report on the position of your head. Honestly, it looks like something you’d come up with if you were making it yourself, in the garage. In fact, everything about the vestibular system and its remedies is strangely homespun. While other disorders get treated at cellular levels, with enzymes and nanotechnology, vestibular medicine seems stuck in the age of the brass syringe and leather pump, when contraception consisted in jumping off a chair. For example: one of the commoner causes of vestibular vertigo is the drifting of some minuscule crystals from their little stream-beds in the inner ear. The approved method for repositioning them is to sit the patient on the edge of a bed, rotate her from the hip and slam her, headfirst, at the mattress.
This dreadful procedure helps determine whether loose crystals are the root of the problem. If they are not, you can go – once the vertigo abates enough for you to leave your bed – and be tested on some steampunk-style apparatus: a chair that revolves in a cupboard; a plywood panel that tilts by four degrees when you stand on it. Like funfair rides for the extremely timid. Finally, a set of exercises are prescribed, with the aim of re-educating the brain to compensate for the lack of balance function. Most of them are versions of walking and moving your head at the same time. You practise them for (in my case) a year, then review.
In the meantime, what to do? Crossing the road – look right, look left, look right again – can take all morning. When you look right, the scene – pavement, road, oncoming cars – slips off the other way in a blur, like hedgerows viewed from a passing train. At last it settles, and you can look left and start it all up again, but by now there’s no point. You can go a few rounds with acupuncture. You should not, but you will, visit online chatrooms for ‘vertigo and dizziness’ sufferers. A dubious stratagem. People on these kinds of websites are, by definition, the uncured: a self-selected group whose lives are ruined by whatever ailment it is they’ve got. The people who got better don’t post on patient forums, because they’ve got lives to go to. These online guys, though, they’ve had vertigo for three, six, ten years. Tried everything. Eleven doctors in two years. They thought they were improving but then it came back worse than ever, with innovations. Oh Christ, you think. I did not know that dizziness had undone so many. I’ll never recover.
On the upside, there’s the kinship of someone else who knows how you feel. This is especially welcome when you have an ‘invisible’ illness like a balance disorder. Vestibular patients don’t have a very long acute phase – six weeks with your neck effectively D-locked to the bedsprings is, according to my GP, about as long as it gets. After that you can get about and converse, and look normal to people you meet – suspiciously normal, in fact, like someone lightly springing from a car in a disabled parking space. As a punter on ‘vertigo and dizziness discussion’ puts it: ‘The fact I look helthy [sic] on the outside just make it hard to explain sh*t. People be like, meh, just man up.’
Exactly so. But we on ‘vertigo and dizziness discussion’, we know how it is. Oh yeah. Like a low berth in a high swell, or the pavement’s spongy wallow when you step off a boat after a week at sea. We know we have ‘poor depth perception’, ‘brain fog’, ‘difficulty concentrating’, ‘short-term memory problems’. We creep about in grotesque carnival versions of our own homes, with distorted walls, rippling carpets, bouncy castle floors, slithering staircases that invert as we approach. We can’t drive or cook or shop, screens and pages give us headaches, sentences make no sense, there’s a migraine shimmer round the edges of words. We grope to explain our symptoms even to each other, because balance disorders affect cognition: ‘I can’t sort my thoughts’, we say; ‘I can’t think of words or get them out … words that usually flow are lost in my brain.’ For me, there’s a lenticular dimension as well, as if I’d put on someone else’s glasses. As if those glasses were dipped in oil. The world swims, but it also seems contracted and remote, withdrawn behind something I can’t slide away.
What dismays us most is the gap between the debility we feel and the trivial-seeming nature of the thing; a consideration that has given me pause (if it’s possible for a person in my condition to do more pausing) in writing about it. No doubt there are Oldie readers with worse illnesses, perhaps with pain or immobility uncomplainingly borne. I imagine them thinking this is a footling kind of trouble, just get on with it. Worse things happen at sea.
This is what happens at sea.