My life is neatly divided into two: before March 2013 and after. The enemy arrived unseen and swiftly pulled the rug out from under me with such brutality my life changed in a heartbeat and I will never be the person I was before. I had heard people describe that defining life-changing moment as it happened to them but we never think it will happen to us, do we? Until it does.
I often look back at the old me as I was before. I was 41 years old. Turning 40 hadn’t been much of a milestone, just an excuse for two parties and a fabulous holiday. I didn’t feel old. I had been married (not my first rodeo!) for a little over a year and we both had busy jobs in London. I had great friends and my lovely but challenging rescue dog. I was always going somewhere or doing something, never still.
Then, on that day in March 2013, everything changed and suddenly I was struggling with the biggest fight of my life. It is a fight I have never talked about until now, and a long and lonely one. Now I am out the other side – for now. Like all good villains, I’m sure it will be back. And this time I am ready and waiting.
I passed out at work, mid-conversation with a colleague. I blamed low blood sugar – I am pre-diabetic. I carried on working. (I am self-employed with a very strong working class work ethic: if you can breathe and walk, you can work. In fact, as I type, I am recovering from two slipped discs. I am very scornful when employed people take a day off sick for a cold.) But the sensations got worse. The ground became like the roughest of ocean passages, throwing me from side to side. Stairs were moving targets in a bizarre funfair ride. Getting out of bed brought nausea and panic. I had to grab onto walls, other people, anything to stabilise myself. It was in a constant nightmare world of dizziness, vomiting and terror. I was crippled by the sensations, unable to walk unaided, get dressed, get into the shower, make a cup of tea, leave the house, put down food for the dog. As the world swam and swayed around me, every tiny movement triggered the movements. I didn’t know it until months later but I had, in that second, for some still unknown reason, suffered brain damage.
The doctor (mis)diagnosed me with an inner ear disorder and told me it would get better. It didn’t. After three weeks off I returned to work because sick leave wasn’t a luxury I had – and this was a whole new kind of terrifying. Rush hour London did its worst. Public transport, challenging at the best of times, took on a whole new dimension. The motion of buses and trains was unbearable. Crowds jostling and traffic rushing past was deafening and disorientating. I couldn’t stand in queues or use stairs. The court stairs felt like Everest. Looking down at my phone triggered an attack. So did looking up. So did bending down. Once I was in my seat at work I was OK but having to stand up and bow to the judge was a Herculean effort after which it took a long time for the world to steady itself again while I stared at my screen and waited for everything to stop spinning.
And nobody in the medical profession listened. I couldn’t understand what had happened to me. The internet was a swamp of unhelpful information, friends and colleagues were (mostly) very sympathetic but caught up in their own lives. The world rushed about its business leaving me struggling in its wake, incapacitated by a body that couldn’t steady itself in a world which listed and span and lurched.
All the joy leached out of my life with every ounce of strength going on stupid tasks like putting on tights or getting out of a car. Move, stop, wait for everything to steady itself. Deep breath, start again. My back, often painful, was now in constant agony from being thrown out by my uneven gait. High heels, dancing, flying in a plane, drinking a glass of wine, even looking up at the sky belonged to the old me. The new me was 41 – and suddenly, since that fateful moment, inexplicably disabled.
The poker player in me knew I had been dealt this terrible hand, but how I decided to play it was my choice. I had to stare the enemy down and not give in. A close friend had recently been diagnosed with a life- limiting illness and faced it with such courage and strength that I knew I could too. I reminded myself constantly that others were always worse off. Every day I wrote down three things for which I was grateful. (Wow, was that a struggle at times!) I had my family and my dog and my friends. My brain was still sharp, it was just my body that was failing. I could still work and as long as I could work, I was OK. I still wrote my newspaper column. I was still a wife and a friend and a daughter. “I’m still me” I reassured someone at least daily as they watched me struggle with the little things I once took for granted. I didn’t want anyone’s pity. And I made sure I still laughed as much as I could when at home or with friends, even when I didn’t feel like it. Laughter is so healing.
With one exception (at work of all places) I never cried in front of anyone. My tears of frustration (never pity, self-pity is an ugly and destructive emotion) came when I was alone in bed at night. The uncertainty of if I would ever walk properly, drive, be able to put something in the oven, the sheer helplessness of being cut down in my prime. But in public I smiled, put pictures on Facebook, went to work, dressed up and went to friends’ 40th birthdays and watched others drink and dance and remembered when my life was like that. I tried to do as much as I could at home. So what if it now took me thirty minutes to get dressed? I just had to get up earlier. Loading and unloading the washing machine piece by piece, sitting on the floor, took forever – but I could still do it. If doing something took me 20 attempts, I had to suck it up. I have never been patient and it nearly killed me, but I had little choice.
And, as with any hidden illness, people judged. I was berated for using the disabled toilets and called lazy for getting the lift up one flight of stairs at work because to the casual observer I looked fine. I think people assumed I was drunk a lot of the time. (Which, incidentally I hadn’t been since 2005) My condition – and my emotional pain – were hidden to everyone. On a good day I managed to walk unaided for a few steps. On bad days I was crippled.
A couple of months into my illness, I had taken a deep breath, sat my husband down and told him to leave me. I couldn’t see him becoming my carer after 18 months of marriage. Pushing me round in a wheelchair so soon was unthinkable. He married a strong-willed, feisty, active woman who never sat still for a minute and who was full of life, a woman who now couldn’t even put on her boots. (He told me I was being ridiculous and that he never for a moment contemplated it, although it must have been impossible for him dealing with his job and my very exacting standards at home!) We began to think about moving to a house more suited to my needs with an eye level oven and walk-in shower. I knew the next step was using a wheelchair to get around quicker and easier and had started to get my head round that. The thought of it made me feel sick. But if I ever I thought “why me?” I caught myself and batted it away.
Then came the breakthrough. After five months of being treated like a hypochondriac by my then doctor, I saw another GP for something unrelated. After seeing me limp slowly along the corridor and struggle to sit down he immediately admitted me to hospital for tests. He later told me he feared I had MS. (It turned out we all thought that, but it was too terrifying to put into words).
The hospital neurologist I saw had, by chance, been trained on the small, specialist neuro-otology unit in London which dealt with cases like mine, headed up by a professor who was the world leader in vestibular damage. I had a brain scan and six months after my world first tilted, I was at the London Hospital of Neurology where the specialist team ran a massive battery of tests. I was overjoyed and grateful that someone could help me escape this crazy spinning world I was locked into. I wasn’t alone.
I hadn’t thought much about the tests that day and felt so confident I sent the friend who had loyally accompanied me away after a couple of hours. As soon as she left, the torture started. I was hung upside down in a harness, thrown off the end of tables and pushed to limits beyond what I thought I could endure. Hard enough for anyone able-bodied, for me in my moving upside-down-sideways fairground world nightmare I thought I couldn’t stand it. But I persevered with each one: my determination to find out what was wrong with me overrode the tears and the near vomiting (I wondered what the bucket was doing there at first, most people throw up). I wasn’t prepared for the chair tilt. I was strapped down into a terrifying executioners’ style chair which rotated and bucked and tried to throw me out while electrodes attached to my head watched my poor brain try to cope with the sensation. More than once I thought I was going to die. Last came the waterboarding in a soundproofed room: tied to a gurney to restrain me, blindfolded and with brain wired up, I had first hot and then cold water poured into my ears and over my face to disorientate me. You get ten attempts at this test. I took four before they got a reading. Someone was screaming for their life somewhere nearby: sheer raw terror. “Oh, that was you” said the clinician “That’s why the room is soundproofed”. After that, nothing has ever terrified me as much.
When I got my diagnosis in hospital that day the tears of relief flowed. I wasn’t going mad, I had suffered brain damage. Nobody knows how or why the vestibular nerve damage happened, but the most important thing of all: they could help me.
Then came the hard work. I began painstaking specialist physiotherapy to retrain my brain to let me balance – and walk – again. Every six weeks in London for nearly three years I saw a physiotherapist who took me through the simplest and stupidest of exercises of things which I had once done all day every day effortlessly but now seemed impossible. Walking in a straight line. Looking up at the ceiling (this triggered an episode so awful I had to lie down for 15 minutes to stop the room spinning and the nausea). The tiniest of head movements. Exercises to be repeated five times a day at home, making me feel sick and shaky and terrible. I frequently had relapses when I was back to square one and took to my bed and cried angry tears of frustration. But slowly, slowly, I improved. I could close my eyes for five seconds whilst standing without falling over. My walking stick was used less and less until the physiotherapist banned it. (I hated her some days but she was right). The DVLA finally agreed I could drive on good days and that was another joyous moment. We don’t treasure our health and freedom until it has suddenly gone.
I started cautiously flying again. Going through the airport security scanner and leaning down to take my shoes off was a nightmare. The tilt of the plane at altitude saw me staggering off at my destination disorientated and struggling: fine when travelling with friends or with my husband, a nightmare on business trips coping with suitcases. But I did it again and again in the self-belief that I would get better.
My determination to not let my disability define me and my sheer stubborness began to win through. Every time I went for my physiotherapy session I visited the hospital chapel and gave thanks that I was getting better. My strong, unshakeable faith was tested to the limit but it hung in there, through every huge setback. There were more low points: my disability registration was refused on a ridiculous single point. Pretending I was coping fooled everyone, even the DWP! In Barcelona on a girls’ weekend I just couldn’t manage the narrow spiral staircase at the Sagrada Familia to get up to the views, or even to look up to the beautiful ceilings. Once again, I sat on the sidelines, left behind.
But I made the choice to see myself as lucky: lucky to get the specialist help I needed and lucky that I was going to make it through. And defeated, the enemy slowly began to retreat.
Early in 2017 I had my last session of physiotherapy and then I was, on a wonderfully happy day in March that year, four years after my nightmare began, discharged from the neurology hospital – for now. This condition is mine for life and it may come back at some time in the future. But this time I’m ready for it and I will beat it again. I can, on a good day – and they are mainly good days – look up at the stars. I can fly in a plane and recover within a day or two. I can drink again. Three years ago the idea of decorating was a distant dream: I now hop up and down off ladders and paint walls and hang wallpaper. There are some things I will never do but skiing or zip wiring aren’t essential to my daily life. I’m working on getting back into high heels and then the gym. And a huge hurdle: last month I walked calmly down the evil glass spiral staircase at work. It might not have seemed impressive to anyone watching but for me, I felt as euphoric as if I’d completed a black ski run.
I haven’t danced for a long time – I look back fondly at my wedding tango and my salsaing days and my three years of singing and dancing to entertain guests in cabarets as a holiday rep. I remember hugging a crocodile and swimming with elephants and dating very unsuitable men and getting a tattoo after losing a bet with a barrister in court and taking huge big risks. I look back at the girl who did crazy stupid things without even thinking about a day when she wouldn’t be able to walk – sober – in a straight line without falling over — and I know she is still in there. And she’s a fighter with a great support network – and a very lucky one.
Enjoy life and never, ever take anything for granted. I’m lucky to have a second chance.
Note from Rebecca: Thanks for reading. It has taken me over a year to publish this since it was first written in draft. I’m doing so much better now. I’m back in my heels on good days. I’m going back to the gym soon and getting fit again. And I can look up at the stars!