Mixed Messages

 

I mentioned that I blame neurologists for my inability to accept Multiple Sclerosis but I guess there are many reasons. It’s just that neurologists are the first port of call for someone like me. I had no other experience – except what they were telling me. I was called back to see my consultant after my GP let the news slip. He told me that keeping the diagnosis secret from patients was a thing of the past. He used the typical cliché that ‘most people with MS lead relatively normal lives’. Relative to what? I’d only been diagnosed for a short time and already I was using a stick, losing my job and had spent several weeks, after a bad lumbar puncture, crawling round the house on my hands and knees because every time I tried to stand up I felt dizzy and vomited. This might seem to relatively normal to them, I thought, but it was far from normal for me.

I was never told how to manage or deal with the information. These were the years before MS Specialist Nurses or proper, focussed, rehabilitation units. I had a physiotherapist at the hospital that walked me up and down the corridor to see whether I was ready to go home or not. Once I was at home I was on my own. Luckily I found a good MS Therapy Centre who gave me information and support. Here were my people – they would teach me how to do this stuff.

This is where all the mixed messages began. The neurologist told me I should just carry on with life as I was and put the diagnosis to the back of my mind. Apparently some people never had a relapse again, so it was best not to change your whole life when you could probably manage perfectly well. Then I got fired and I didn’t know what to do next. I kept telling work that the neurologist had told me I would recover just fine, if only they would hang in there and wait. I wanted to see a Disability Officer at the employment service – it was their job at the time to give employers advice on how to adapt the workplace to accommodate their employees. Work sacked me a fortnight before he was available.

My next step was to find another job, but when I finally saw the disability officer he had a whole other plan for me:

‘you don’t want to be working do you?’ I couldn’t work out whether this was a statement or a question. So, I assured him I did.

‘no, you don’t understand me’, he replied ‘ you don’t want to be working’. So, it was a statement. He showed me how to make a claim for Incapacity Benefit and Disability Living Allowance.

I kept thinking there had to be something the hospital wasn’t telling me, because everyone else’s advice was completely contrary to theirs. I was assailed by kindly people sending articles on the newest drugs and therapies; anything from the new beta-interferon drugs to alternative therapies, bee venom, and some strange mix of vitamins and diet coke that seemed remarkably improbable. The rehabilitation team of physiotherapists and occupational therapists were telling me I should use a walking stick because my balance was off, I really needed a special kettle and a board to sit over the bath to help me get into the water without losing my balance. Yet, the neurologists were telling me that my type of MS should make very little difference to my life. So I figured that if everything wasn’t okay, there must be something wrong with me; it was all in my hands - as long as I kept determined and positive I could keep well.

Some of the things said to me at this point in my life were truly baffling:

‘oh what a shame, she was so pretty’ – of course if ugly people develop a life threatening illness that’s ok? Also, simply by developing an illness I was immediately thrown into a different category of person because pretty and ill are apparently mutually exclusive.

‘my aunt/brother/cousin knows someone with MS and they go sky-diving/bungee jumping/marathon running’ – this could be any combination of distant relative and daredevil activity, but the gist is that a degenerative illness has been the making of them. Maybe this was meant to be inspirational, but I would sit and smile while thinking ‘well, isn’t that nice for them’.

The worst thing anyone said to me in those first few weeks, happened when I did venture out to a wedding reception with some old friends from school and my friend Jo – the one person who could be relied upon to treat me normally. We were at a table with a few girls from sixth form, trading stories and catching up. One of them had brought a boyfriend with her and he was an outsider really, not party to the teachers we remembered like the ‘Starry-Eyed Raz Baz’ who had very jazzy glasses and a shiny suit or Mrs. Lightfoot who had the reddest hair and the highest heels I’d ever seen. At one point he disappeared, probably to get away from the endless stories, and my old friend leaned in towards me conspiratorially.

‘Could we not talk about your MS in front of Richard? His mum died of it’. Then Richard returned and she carried on talking as if nothing had happened, while I felt like I’d just disappeared.

She wasn’t the only one though. Friends, even long standing ones, seemed to have no idea how to treat me. My work friends had been my going out friends. There were three of us working in the features department of the newspaper and we were all around the same age. We shopped together, lunched together and went out clubbing together. Sometimes, we would be hysterical with laughter in our corner of the office and I was convinced that our boss would take to separating us all like naughty schoolchildren. In the long summer I had away from work they came out to visit me, but something had changed. It was maybe me, but I felt like a pit stop or even worse a ‘pity stop’ –something they had to get out of the way, a duty visit, before they could return to their normal lives of having fun; a life that had been mine only a few months previously. Another friend had a hen night, but thought ‘it wouldn’t be my sort of evening’. A few months ago it would have been exactly my sort of evening. I didn’t know whether I was offended or relieved. Was it not my sort of thing because the MS had changed me or was it that I was so embarrassed by my MS and the difficulties it caused I would rather not participate in the world.

How could I expect my friends to understand what was happening when I had no way of understanding myself? Although it was probably not the most important thing to be worrying about when I’d lost my health and my job, I was also worried about my love life. Pretty much immediately as I was diagnosed I finished with my boyfriend of the time. He’d been ill before me and diagnosed with a form of arthritis. As soon as he’d found out what was wrong with me he’d been very supportive and said it made no difference to the relationship. We could have a life, he said, there were benefits we could claim and although we wouldn’t be able to have careers or work we would have the bonus of spending all our time together. My reaction to this was an almost physical suffocation. I felt overwhelmed and panicked – my throat went tight. I imagined a future of nothing but daytime television and trips to the supermarket. He seemed ready to roll over and accept the kind of life I was fighting against. I had been told to fight and I was going to fight. I was going to have this normal life I’d been promised.

Around this time an old friend came back from university after finishing his degree. We’d been very close through sixth form, and had even applied for the same university with this romantic notion of making a new life in Liverpool, living in the halls of residence opposite Penny Lane. Then, when we both failed to get the grades he went to his second choice university and I decided to take a year out. I jumped at the chance to see him again, partly out of excitement after not seeing him for so long, but I think partly out of a need to remember who I was, to see myself as he saw me, before the illness. It wasn’t long before we were seeing each other regularly and I threw myself into the romance of it. He was always full of ideas and plans, to be a musician or a writer, and this was the life I wanted rather than a life of disability, adaptations, crutches and pity. I thought this was a perfect end to a difficult time of my life; with this relationship and the determination the neurologist wanted me to have, I could walk away from MS and become something. It was the happy ending I’d been looking for. We only briefly talked about the MS and then we concentrated on simply having a good time. He’d caught me at a good point in my illness. I was walking better and with a bit of rest during the day I could easily stand the odd late night or a drink here and there. I thought we didn’t discuss the MS much because he saw past it and still saw the girl he used to know. With him I was still me and we had so many other things to talk about. I thought the MS didn’t matter because he loved me. Then one evening, he was late for a date, because he was in the pub with friends. Being stupid, I went to look for him, and he’d had quite a lot to drink. In my car he held my hand as I drove:

‘I don’t have to tell you I love you’, he said.

How I didn’t just drop-kick him straight out of the car I don’t know.

‘Mum was talking to me late last night’, he carried on, ‘she wanted to talk to me about how serious this MS thing is and what it could mean in the future’.

I was angry that his mum had tried to scare him. This was me, a person, not some dangerous animal to be avoided at all costs.

‘but I told her not to worry. Because we’re just having a bit of fun aren’t we?’

My happy ending ended that night. I had lost my health, my job and all sense of who I was as a person. Now, my so-called normal life had none of the things in it that most people took for granted.