Chapter 1

Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning. Sir Winston Churchill, 1942
The diagnosis
Just another ordinary day, the alarm woke me reluctantly from an insatiable sleep and the countdown to get showered, dressed and arrive at work began. Following the usual robotic routine, I parked, swiped my card and climbed the stairs to my office armed with a very strong coffee; most members of the team already seated and working. I was not a morning person, never had been, even at university I would regularly skip early morning lectures and party late, often into the next day with my friends. It was a choice for me and thank goodness I chose to party whilst my body allowed because I couldnt do it now. My friends all managed to do both but I was different, always had been and this was merely another anomaly; study or enjoy being 18. Shocking really, that I managed to obtain a respectable 2:2; the partying degree it is said. Now I see why! Anyway, not much changed only the partying slowed down, almost fatally and failing to arrive at work was never an option. My desk drawers were well-stocked with pro plus, dextro energy tablets and red bull. I thought I was simply growing up, how could I know that my energy levels signified a serious complaint when everybody knows that the body declines after a certain age. The morning passed much the same as any other, work mixed with cheeky banter, jokes and the occasional rubber band flicking contest. Watching the clock the entire time, I hadnt achieved much but it was time to pack up and leave. Over the past year I had been passed like a hot potato from department to department within the National Health Service. Today, I had another hospital appointment, no doubt another Sorry Miss, havent got a clue whats wrong with you. another waste of time but I had started this quest and had to see it through. Even if it led me to the Psychiatric department, this mystery had got to the point where I even questioned whether the problem was just psychosomatic. Maybe it was just me who couldnt cope with this life, the same life that all of my friends and colleagues had to deal with? There were many times growing up when I had heard how tough life could be, perhaps this is what was meant. My quest had all started with a quite spectacular car crash, ironically and yet typically, right outside my family home. The previous day I had driven from Cambridge to Shrewsbury, at considerable speed and without fault. Not even a paint chip. The next day, returning home from the vets things couldnt have been more different. Slowing down, indicating to make a left turn into the drive, taking particular care not to topple the 2 family old English sheepdogs from the back seat, it happened. Like a disturbing Rutger Hauer film I once saw, a truck was approaching fast in my rear view mirror, dust clouds filling the air as the driver stood hard on his breaks but he had been driving too fast. It must have only taken seconds but Ive often wondered if Id only floored the accelerator, throwing my dogs off balance, would he have missed us? Suddenly I felt an incredibly powerful shunt forward and something smash into my face. The car shunted 180 degrees onto the grass verge and the engine cut out, before I registered that I had even moved forward. That was it, I wasnt

moving anymore and it was over. I looked at the back seat and both dogs looked back at me with confusion and shock but we were all OK, no blood, no broken bones. A very kind stranger appeared at the drivers side window and forced the buckled car door open to release me; totally flustered I fear that I failed to properly thank him. When the police arrived I learnt that the vehicle that hit me was a 32 tonne bulk carrier, my drivers seat had been ripped off the axel and the entire back of my VW Golf had been crushed up to the back seat. Thankfully, I had decided earlier not to put my dogs in the boot space. Every cloud has a silver lining and that was mine. First came the aches and pains from the crash, it was severe for 2 weeks but I wasnt unduly concerned and for my only worry, I had a sick note to give to work. The only lingering reminder was the pain. My back still hurt but that was common post crash and soon 1 Id be able to go a day without the full dose of co-proximal. A few months later, I woke for work with a numb sensation in my toes on both feet. Something had happened whilst I slept! Over the next few weeks, this sensation slowly crept up my legs and eventually stopped at my waist. This was different but didnt set off any alarm bells, it was a physical complaint Id never heard of and being considerably different to most people figured it was power for the cause. It lasted a few months and spent a few more to recede. The problem that had me sitting in a hospital waiting room, flicking through outdated magazines was a chronic backache and consequently a co-proxamol, TENS machine dependency. I couldnt stand the pain without them. After just getting interested in an article my name was called. Here we go I thought, expecting no answers. I walked into the neurologists clinic and took a seat. Dressed in a smart suit, looking every bit the up and coming young business woman, I sat in silence. The glasses pushed back, the silver haired gentleman flicked through my file which was worryingly increasing in thickness following each visit. The consultant was very calm, possessing a nonchalant manner but not cold or uncaring. He delivered his diagnosis by firstly explaining that my MRI showed some areas of scaring and I was shown how it looked. An opportunity for a future joke popped into my head, proof that I do have a brain and was then a little repulsed by the sight of it. It made me think of cauliflower which I really dont like, even when its swimming in delicious cheese sauce. As you can see, he continued, dragging me back to reality, in such a calming fatherly tone, there are a few patches of this scaring and we term scaring as sclerosis. As there are a few, we term it as multiple of sclerosis, Multiple Sclerosis. So there it was, an end to all of my questions. Life wasnt actually this difficult for everyone, I wasnt making it up either but the future was still unsure. A full diagnosis of MS the disease needed at least two separate episodes. If it wasnt a one off health problem there were no signs as to the diseases nature so you do have to play a game of wait and see. A 100% certain diagnosis requires an autopsy and I was in no hurry for that. It felt strange being told that life may be over but maybe not, although it is really the same for everybody else on this planet but being singled out made a difference. Nobody knows what tomorrow brings and looking back I would say thats a good thing in all aspects of my existence. When I left I didnt actually have any thoughts in my head, not even one, which is rather a rarity with me. I met the MS specialist nurse who tried to explain a bit more but I didnt take much in. As I left, she nicely finished our conversation with I hope I never see you again, we laughed and said goodbye. As fate would have it, we did meet again and I now consider her a friend. Walking back to my car I considered not telling my mother this news, as my grandmother lay dying from terminal cancer in a hospital bed, not far from where Id been
1

Co-proximal now removed from the market. Has anyone looked at this possible link to Multiple Sclerosis?

told this crazy story. By the time I reached my car I was laughing, it was ridiculous, it was a mad leap from back pain to a disease that conjured up mental images of wheelchairs, catheters and stressed speech. Not a thought that I am proud of and certainly not an accurate one but I would put money on it being how most healthy young people imagine MS. Its not publicised often and when it is, its always the worst case. Dialling home from my mobile, I imagined my mothers reaction to this news. The latest slice of insanity that hit my family, with a complicated medical history herself, she would laugh her socks off. As it happened there wasnt much laughter but we did attack the inadequacies of the NHS and the medical professions knowledge in general. Arriving back at work and asked how I got on, I sat at my desk ranting about my lack of a solution to my back pain and their ludicrous invention of a disease that I simply didnt have. This is how I felt at the time; the entire learned world had gone insane. Total waste of time for all but the people I had met were very nice. Now, I suppose that is a typical coping mechanism. That was pretty much it, case closed Until! Had a few years before I had to face the fact that they were right but by that time I had learnt how great and diverse the range of symptoms and severity are. When you walk out of that office dont go straight to the medical books. It will scare you to death and hang like a black cloud over the rest of your life unless you face it and deal. My advice would be to create your own strategy of coping and fighting back. As for not rushing to the library, I know thats a bit like saying dont look down during your first tightrope walk, but consider this; Multiple Sclerosis ranges from never having experienced to experiencing frequently within the symptoms, the only certainty being that you will have at least two and again severity ranges through similar extremes. The disease can range from simply having a label to being totally life destroying. One question springs to my mind, how completely and utterly pissed off would I be if I ended up lying on my deathbed, thinking about all the opportunities Id dismissed because of how I might end up. What a heinous waste of a life that would be. Never been a fan of regret and after all, life would be very dull without a challenge. For me, life has never been about simply existing, it is about experiences, feelings and sharing them all. My meaning of life is laughter! We only get one life they say, Im still investigating that one but just in case, a minute shouldnt be wasted. I am not trying to suggest that a human can or should remain insanely jolly throughout their affliction, it isnt possible but keep the reality or bottom line close to your heart. Each attack leaves you with some form of disability and you will grieve over whatever ability has been lost. It is a grieving process that we face, nobody has died but a part of yourself as you have always been is now gone forever. Never think that an enforced change alters who you are at heart or allow it to kill your dreams. As an individual you just alter how you do things. Even MS cannot touch your soul, lets face it, nobody actually knows where it is. Anyone who changes by ceasing to live has allowed the enemy to win the war and make no mistake, it is a war. The good news is that most attacks recede leaving only a trace of what they were. I say most because mine stay, it could be all? Maybe I dont have MS? You may do that a lot too! After I accepted that I had it, I decided to read up on MS. Book number one began well enough, a couple of pages of gentle introduction. I turned the page, began to read and then closed the book. I flung it on the adjacent sofa and walked away finding something else to do. It wasnt the thought of catheters or wheelchairs that appalled me, it was that my reaction was textbook. Disbelief, grieving, anger, and so on. I was always different, grew up in an exceptionally unique family, never followed the crowd and spoke my mind bravely from a young age. Now the word ordinary was rhythmically jumping out of the page at me. I didnt just get a second opinion, I got a third and only dropped it when my doctor pointed out that they probably all knew each other, as the consultant neurology community

wasnt that large. It was also highlighted that in professional circles it is unacceptable to contest a colleague. A little Dickensian but probably true. Its an expensive pastime but was a necessary one; it was my first step to fight the fear. Fight it, shape it and let it hang its head in shame because no matter how ingenious the strategy of your new enemy, it has failed and you have won. That was and still is my attitude to this day, fourteen years on. After you accept that the specialist has that title for a reason I suppose you think it may not be the big bad MS but a milder complaint in that field and lets face it, thats just your luck to have a complicated deviation. A maybe they were right creeps in and then comes the why. You reap what you sew? The anger at the injustice of it all is engulfing, why me? Ive never hurt anyone deliberately, stolen or lied, so what justified this future? As we travel through the education system, we learn how to behave and have faith that as long as you do not hurt another human, everything will be alright. Unfortunately, that just isnt true. In fact, sometimes it feels as though the lawless, cruel and selfish fare much better. This was the beginning of the collapse of the rules of this life as I used to see them. When all is said and wept over, ask yourself, why not you? Could you really choose another human to take it in your place? Obviously, I thought of child molesters and murderers but then came to my senses. Thats never going to happen. Textbook, bloody textbook! Reality is that its a lottery, at least as long as a cause eludes the world. I no longer question why, have created a belief system that puts me back in control and not a victim but only realised this as I began to write this book. I see it as an opportunity now, almost a second chance. A while after the shock receded and the fight took control, a fresh look at life developed. The grass seriously looked brighter, sounds strange but when rat race priorities are banished, things shuffle and highlight as being truly important. Think of it as a new start, not the end, I doubt anyones life is truly complete, sometimes shaking things up can introduce improvements. For my whole life I have searched for my raison dtre without success. Today I have found it, in the very last place I expected to find it. Its been difficult but I know its made me stronger and a more grounded person as time has passed. I think, as with any disease, it can either make you or break you and everyone has to confront it alone, whatever form it takes, but fight it together.