D Day
I first wrote this piece for an adult English course several years ago, where students were asked to reflect on an important moment in their lives. You know the kind of thing, getting married, having children, et cetera, et cetera. Today is World M.S. Day and having a particularly crappy day physically, with some pretty painful physiotherapy in between, I've had cause to reflect on what this means to me. So I've revisited this piece, tweaked it a bit to make it less academic and here it is.
I first wrote this piece for an adult English course several years ago, where students were asked to reflect on an important moment in their lives. You know the kind of thing, getting married, having children, et cetera, et cetera. Today is World M.S. Day and having a particularly crappy day physically, with some pretty painful physiotherapy in between, I've had cause to reflect on what this means to me. So I've revisited this piece, tweaked it a bit to make it less academic and here it is.
Like most people I imagine, there was a point in my life when I believed that I could not, nor would not ever be happy again. That came in 1994. The year that Wet Wet Wet held the number 1 spot in the charts with‘Love is All Around’. Also the year that Oasis released their debut album, ‘Definitely Maybe’. I hated both. 1994. I was twenty-one in 1994, young, lively, and definitely full of it. I had a boyfriend, I was working, and attending a local college on a day-release scheme aimed at providing me with good qualifications. In short, I was busy. Too busy for this. I had big plans, big dreams; aspirations of joining the RAF, of having a life where I would travel, experience new things, meet new people, and have a career that would mean something. I can’t remember anything else except that it was a year that effectively split my life in half. Life before and life after.
In the August of 1994, I had gone to the local hospital outpatient department, hoping to find out the extent of what had been happening to me. No, not hoping, since it seemed hope had deserted me and life felt pretty bleak; this was a need to know. As I walked through the doors, the waiting room was painfully quiet, ‘cept for the gentle whirr of the cooling fans. There were only a few people sat in the room and although one or two were reading, most were looking at the floor, apparently locked in their own thoughts. I took my seat and as I sat there lost in mine, it was as if the dreams and the aspirations had all disappeared. Instead, chaotic jumbles of thoughts were going through my mind, as if a tape was being played in my head. Rewind. Stop. Play. Pause. Feeling sick, nerves clawed at my stomach and I recalled the abject terror felt during my first test, a CT scan of my brain. Was my time up? Then I remembered the physical release of breath, and the immediate relief felt at the news that there were no 'lumps in my head’, as my consultant had put it. Yet, just as physical and as immediate, fear had returned, coursing icily through my veins. The relief short-lived, I had asked myself, and him, the question, ‘If it wasn’t that, then what was wrong with me?' The thoughts took me to where all this had started, on the floor where I had fallen unable to move, then shifted to just a few days later when I had finally plucked up the courage to see someone.
That had been in February 1994. Bizarre, frightening, and sometimes even comical, my body had experienced a range of symptoms. In the space of a week, I had lost the use of my left side and the sight in my right eye, yet still I had tried to tell myself that it would pass and that I was being daft. Eventually though, I had then gone to see my GP, but half expecting to be told that it was ‘something and nothing' or 'a pulled muscle'. I suppose I was in denial but I expected anything but the deeply attentive expression he wore, as he asked question after question. And nothing so serious as to warrant the prodding and poking that can only be described as alarmingly thorough. Afterwards, I had sat there, silent and numb, while he made an emergency referral for me to see Dr Boldy, a consultant physician. Dr Boldy was an immaculately dressed, tall man with impeccable manners, but in that first meeting, he had also prodded and poked, asking endless questions that had seemed rudely invasive. I had been asked to strip down, to underwear only, so that I could be examined. There had been an almost incessant stream of requests as I was asked to look straight ahead, lift my arms, bend my knees, to stand on one leg, then the other. Pins had been jabbed at my skin, cotton wool had tickled my feet, whilst glaring lights had dazzled my eyes, first the right, then the left, and back to the right again. This was all just a part of the barrage of tests that I was to endure, some repeated over and over. As weeks went by, the tests became more involved, the procedures more sophisticated. A lumbar puncture, where a hollow needle was inserted into my spine to draw off cerebral fluid and which had left me both sick and bedbound for over a week. Then came an a visual evoked response potential that had involved glueing electrodes to my scalp. This had taken less than an hour to perform and had messed my hair for days, but what did personal appearance matter now? There were many more tests, all interspersed with treatment such as physiotherapy, occupational therapy (which seemed to have nothing to do with occupation…), hydrotherapy and steroids, the only drug treatment available at the time. Then finally came the big one, an MRI scan, one that would invariably change my future for ever.
Some time later, I don't know how long, I stumbled out of the hospital, my eyes blinking in the glare of the sunshine. Pricked with tears, they burned and I pressed my lips together as I struggled to keep a hold on myself. M.S. Just two letters that could mean anything, anything at all.
Marks and Spencers.
Mulder and Scully.
Mandy and Simon.
M.S.
M.S.
Multiple Sclerosis
Multiple Sclerosis.
Multiple Sclerosis.
Just two letters that could mean anything. Yes they could but in the space of this short sentence my whole life had changed. In disbelief, my legs sagged and after sinking down onto a bench, my composure cracked. Choking back sobs, I buried my face in my hands. I let the hot tears fall, not caring where I was or who saw me. I don’t remember getting up or going home. I don’t remember telling my boyfriend. I only know that I did. People have since told me that a positive attitude was essential (of course, they were right) but their faces were grave. Some told me that I was lucky, that ‘it could be worse’, but there were tears in their eyes. Some didn’t say anything at all, and so-called friends were suddenly strangers. The ‘experts’, these being the people who had heard something on the radio, or had read something somewhere, asked if it was 'that yuppie flu’. Others offered ‘helpful’ solutions. Apparently snake venom was good to try. Where was I going to find snake venom? I'm terrified of snakes. Work became something of an impossibility due to both the unpredictable nature of the disease and the lack of support from employers. The possibility of children was a no-no, owing partly to a disastrous decision to get married on the strength of fear and us both being unprepared for what M.S. would throw at us, and later to a diagnosis of endometriosis that had progressed too far. People have treated me with pity, sympathy, hostility, suspicion, contempt, judged me as not being capable when applying for jobs or training, yet viewed me as work-shy, a benefit scrounger, draining the country's hard-earned resources.
Yet, in time my sight came back and I regained most of the use of my left side. New friends arrived, indeed a new partner and with them, returned my bolshy character and a much-needed sense of humour. Different treatments have come to the fore, all helping to control the bizarre nature of the disease. The tape is still playing, for life with MS is a continually changing journey that is sometimes terrifying, and sometims frenetic, but never, ever still. It's true that dreams have been broken, but new ones have been made. Different aspirations can be aimed for so that life retains meaning, and more importantly, hope. And nearly twenty years later, that is my coping mechanism. To take each day as it comes, one day at a time. And to try and remember always; I have M.S. but M.S. does not have me.
