Until five years ago, my Friday nights tended to follow the same pattern. I would be partying hard at the Sanderson or Toast, hanging on to a cosmo with one hand and a Silk Cut with the other. Business was great, my world found me funny, gorgeous, entertaining and, oh yes, did I mention smart? I liked to think I was the epitome of modern woman: independent, vibrant, successful and nobody's fool. I loved life and it loved me.
It was on the Monday morning following one of these Fridays that I found myself in front of a GP I had never had cause to see, with a severe case of sudden double vision and a numb arm, only to be told with considerable condescension that I was an alcoholic at 29. I admit I liked a drink as much as anyone, but you would not catch me splattered across the front pages of the Sun, my skirt tucked in my knickers, staggering along Croydon High Street on Saturday night.
So I sat opposite my GP in a tiny, white room with the latest government health poster on sexually transmitted diseases hung distractingly behind her while she thumped the reflex hammer she had just whacked off my knees against her desk. She suggested I was an alcoholic on the back of one or two business lunches a week and as many nights out. I gave her medical expertise 30 seconds' serious thought before leaving the surgery deflated and without so much as a prescription for how to deal with sanctimonious doctors. Two weeks later, and nearly £1,500 poorer, I was staring at my MRI scan while a private neurologist told me I had multiple sclerosis. I knew it wasn't the drinking - so somebody pour me a glass.
Despite the shock of the diagnosis, my initial concern was for my twin. I wanted him to be unaffected. We were, and are still, very close. He is my rock and when I start to slide towards negativity and self-limitation, he has a wonderful way of giving me a good kick (some things haven't changed). He was the first person I told. Calm and positive, and privately devastated, he responded to the news by arriving at my door with a bottle of Bolly and more cigarettes. In contrast, when I told my partner of four years, he asked if he should stay as my care partner. Hello? I hadn't realised there were any plans to leave. It was the beginning of so many ends and the start of a very different life I had never asked or planned for.
At the time, I ran my own business commissioning music for broadcast (and two other companies belonging to my business partner), worked out every day, including three-mile runs around the Serpentine and went to two sessions a week of wildly strenuous capoeira. I drove a shiny, silver Mercedes SLK (how I miss those heated seats, but hey, they only give you piles anyway), had my West End apartment and an apartment in France - not bad for a hard-working girl from a broken home and a council estate.
Within 18 months my partner had left, and my relationship with my friend and business partner had broken down too. I was rapidly sliding into a depression marked by bouts of heavy drinking (my GP should have seen me then!). Driven by a gut instinct that there was more to life than profit and cosmopolitans and a sense that this downward spiral of self-abuse would end very badly, I decided I could no longer continue with the business and one day literally lay down the office and car keys on my desk, said goodbye to the staff and limped away; my foot had just started to develop a neurological drop. Many people with MS claim they never succumbed to colds or viruses and certainly that was my experience. I still think that I was born a superhero, just that someone has nicked my powers of late. The reality of living with the disease, however, has been quite different. I have not had the good fortune of a benign or occasional flare-up of MS, but an active, petulant, will-not-be ignored, relapsing-remitting kind. It has chipped away at me on each visit, leaving deficits and a bewildering sense of "Where will it end?". I have not run for more than two years. I use a walking stick, though lately it's bilateral crutches as my legs refuse to work from the knees down (I have foot drop, which means that the foot drops and does not pick up off the floor properly), and numbness and ataxia of the right leg and arm. Just great when a very hot bath feels freezing and doing your makeup is a feat comparable to a specialist performing open-heart surgery. Did I mention the spasticity that means I shuffle like a robot? Or the fatigue? I feel as if I have gone 10 rounds with Mike Tyson just trying to put my knickers on.
Diagnosis, as is common, came at the prime of my working life. At that age, permanent health insurance, mortgage protection and critical illness cover just do not feature in your monthly outgoings list. They certainly didn't in mine - I'll have another cosmo please, or how about the latest Louis Vuitton handbag? Life cover became as expensive as a mortgage.
Two months later I had moved back home to my parents and rented out my property, only to be told by the employment office that I was not entitled to any help beyond six months' jobseeker's allowance. I would need to sell my home to qualify but even then I would be expected to live off the equity first, so I spent a year living off my savings and trying to work out what I was going to do. Eventually, the savings ran out, and when I was no longer footing the bar bills my friends drifted off. I ended up temping for a while to keep my head above water. These days, I have what I like to call a "portfolio career". Encouraged by my twin, I have gone back to doing what I love and never had time for - making music, rather than selling other people's - and I have started to write. To pay the bills I work part-time in a bank.
Like so many young people with MS, my career prospects seem to have hit a wall. Fatigue limits the hours I can work and my sick record is not pretty (although my usually sympathetic boss seems strangely pleased by my latest symptom, a numb mouth). When I did ring the disability employment adviser, set up by the government to get more disabled people back into work, to explain that I needed a job that involved less mobility, the person on the other end of the phone wailed, "Michelle, there just aren't jobs out there for 'normal' people, let alone people like you." People like me? Hmm, I'm not sure what she meant by that but can only assume: superhuman, intelligent and sexy.
I want to put a positive spin on this but there are enough jolly articles on the internet about miracle cures and "I became a better person with MS" stories put out by the various MS organisations. I didn't become a better person. I have become a considerably poorer, more humbled, frightened person. I am in my early 30s. I do resent losing the capacity for personal grooming, to earn a good living, to be a pop star or athlete (if I wanted). And more than anything, I resent having fewer choices.
But a couple of years ago, I did meet someone wonderful in a recording studio. Cris is a music producer who encourages me to be creative, and to be the best I can, to live in the now and whose love has proved unconditional. More importantly, Cris took me on with MS and makes me feel that I'm perfect as I am, even though my body - and possibly my future - so clearly isn't.
Finally, after friends, lovers and others ran out at the beginning, I can still type and read. Small pleasures for my simple world, so maybe I did become a better person after all. But I still think MS sucks.
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