I Get An ‘F’ for Acceptance

I thought I was an A* student in acceptance – this is typical me, I like to excel at things. It was only recently I learned I was pretty crap at it actually. There is a family story that when I was very small and my rabbit died my parents let me have a look at him. Apparently I put on a very sad voice and said:

‘Ahhh, poor bunny’, and then, ‘can we eat him now?’

Okay, so I was a disturbed child, but to me this was the normal run of things, the circle of life (except without Elton John). One of my early memories is sitting on some sort of stool and chatting happily to my day while he gutted rabbits and threw their intestines into a bucket. This was clearly not disturbing to me, probably because it takes a lot to put me off chatting. Also, when you’re that small you think all families are like yours and living out where we did there was no one to form a comparison with. I remember thinking that stomach contents look a lot like Heinz vegetable soup and have never been able to eat it since.

We didn’t eat bunny, because he was a pet and not a wild rabbit which were fair game, along with ducks, pheasants, partridges, the odd pigeon and a few other things I can’t remember – probably because they were put into pies so their origins weren’t immediately obvious. I was brought up in the ways of the Lincolnshire countryside and knew that some animals were pets and others were dinner. Although we did eat chickens, when they’d stopped laying, but they didn’t have names so that’s ok. The point is, when you have animals, you learn about life and death fairly quickly. There was bunny and then a succession of other animal deaths over the years and we learned to accept this; it was sad but then you had to move on. One day you are here and the next you are not. We learned that foxes eat geese, but not Gregory Peck because he was a kick-ass goose who could take on a Mini. We also learned that if a large rabbit keels over stone dead in the night it would have probably been better for Albert the guinea pig not to have been under him at the time. My childhood memory of the royal wedding on 29^th July 1981 is forever tainted by the spaniels eating one of our chicks in the middle of the ceremony.

After all that you become accustomed to death and accept what life throws at you fairly readily, or so I thought. When they told me I had MS I had a few moments out in the corridor, staring at a wall. Then I figured nothing was going to change if I carried on sitting in the hallway staring, except for looking like a candidate for a section, so I got up and drove to work. This should be some clue as to how well I was doing mentally, but I had no idea how nuts it was at the time. I spoke to my manager  and she asked me if I wanted to go home for the rest of the day. I couldn’t imagine how that would help so I just sat at my desk and carried on. I carried on when it became a struggle to walk from the car park to the office, and when I realised getting up the stairs was becoming a problem. I even carried on all afternoon when I lost the use of my left arm. I could do everything with my right after all. My manager had to tell me that there was no more room for to work at the paper because I couldn’t manage. They gave me a month’s pay and that was the end of my full time working life.

Then I just stopped. My mind was busy and chaotic. My body was tired and simply could not do anymore. I discovered I could not dance anymore. At my brother’s wedding I had to be carried up two flights of stairs to the reception. I felt embarrassed and awkward. A couple of years earlier I’d been another girl altogether. I fondly remembered leaping athletically in and out of my beloved mini, cycling seven miles to work or doing a late shift at the nursing home and then going out to a club till 2am. In hindsight maybe I wore my immune system out!

I had to find my place in a new world – a disabled world, or what Susan Sontag called ‘the kingdom of the sick’. I had to learn how to be ill the only way I could, by copying someone else. I had to find some ill people to copy. Where did they hang out?  I wasn’t sure where to look, because ‘disabled’ was a whole new concept to me. I might as well have been told I was a unicorn (a crippled unicorn with its horn hanging off, but still a mythical sort of beast). To me, people with disabilities were obviously and visually disabled. I could see someone was blind because they’d have a white stick or a guide dog. I thought all people in wheelchairs simply couldn’t walk, but had no idea about the myriad of complex conditions and diseases that caused the ‘not walking’. I remember visiting a disability resource centre to meet a famous wheelchair user and being totally shocked to see them get up out of their wheelchair. She even went up some stairs – I thought ‘there’s a benefit review waiting to happen’, but I also learned that some people who play wheelchair basketball are not everyday wheelchair users. They actually climbed into a wheelchair to play a sport. I started to realise that this disability business was more complex than I could ever have imagined.

While I was really struggling, I didn’t really see myself as disabled. I knew I had a disease, but diseases usually get better. I understood being ill as a halfway stage; you get better or you get dead. I didn’t know you could be permanently in-between. I had gone from being a vital twenty-something to a person who could be knocked clean off her feet in a department store by a pack of unruly old ladies. To be truthful, they weren’t really unruly, just a bit ‘pushy’ and ‘shovey’ as if they assumed the gangway was purely for old people and us youngsters should either disappear or do what I did and plummet headlong into a rail of Country Casuals. I took to keeping a stick with me, because it warded off marauding geriatrics and meant that people would let me in front of them in queues. During one particularly bad relapse I took to using a foldable wheelchair, but this was always a case of taking my life into my hands, or rather, leaving my life in my husband’s hands as he tipped me headfirst down kerbs and into gutters. Apparently, everyone doesn’t know that you do this backwards.

I felt I’d done everything I could to accept it, but part of me did see acceptance as failure and giving in. I was caught up in all those great warlike metaphors of illness where someone automatically becomes a ‘victim’ or a ‘sufferer’ who is ‘bravely fighting’ their illness. Steeped in media coverage of other sick people that involved battling, not giving in, and surviving I thought that was the way to respond to my diagnosis. Anything less would be letting the disease take over and allowing an illness to run your life is the worse crime of all. I was caught in the medical perception of a chronic illness – something was wrong, it couldn’t be fixed and I was perpetually broken in some way. However, I had also been left in no doubt that I was responsible for my own broken-ness. I had to fight it, preferably with a smile on my face, and not let it affect my life. No wonder I was confused.

It wasn’t until this year when I went for counselling because life was just becoming too difficult that I realised I had never, in fifteen years, accepted anything at all. I dutifully filled in my well-being questionnaire and had my first session. It was in the second session that the counsellor pointed something out to me. At the bottom of the wellbeing test there was the following question:

‘In the past week have you engaged in behaviour that is damaging to your health or wellbeing’.

I had replied ‘never’ unfailingly for both my initial assessment and my appointments. She wondered if I’d understood the question and I said yes, of course I had. The question was for people who take drugs, or drink or self-harm and I never did any of those things.

‘What about if you have an illness and you are behaving in a way that might make your condition worse?’ she asked.

I went away and thought about this. How could I be doing anything to harm my health? My health was screwed so anything I did was negligible. I started reading a book about recovery and the penny finally dropped. I wasn’t different to people who drink or take drugs. I was exactly the same. I had an illness. I knew I had an illness and by all accounts that illness was getting worse. Yet, I had signed on to study a PhD telling my faculty that I didn’t expect my health to cause a problem. I had been regularly pulling all day sessions in the library without eating properly and studying all day at home when I wasn’t at university. I would struggle and walk all over campus without thinking for a minute that maybe I should think about a wheelchair for such long distances. I was often so stressed I was forgetting my tablets – leading to late night begging phone calls where I scored drugs from fellow MS people who were managing their illness an awful lot better than me! These are the many ways in which I was not accepting my illness:

·         Taking a train down to London and walking all the way from the Southbank Centre to King’s Cross station and panicking like mad when I was still not at the station twenty minutes before my train, wondering why my legs were getting slower and slower.

·         Seriously considering buying a house over three storeys where the kitchen was at the bottom and the only toilet was at the top.

·         Ignoring the fact that my weight was creeping ever higher and I wasn’t attempting to do any exercise or eat sensibly until the neurologist pointed out I probably needed to lose around six stone ‘but anything would do’.

·         Eating foods I knew aggravated my condition such as cream or strawberries – even though they made my tongue swell up and my mouth sore.

·         Forgetting to order my medication so that I spent a whole weekend wide awake, running for a wee every five minutes and in terrible pain leading to a week long recovery period.

I was not accepting the reality of my illness. A wide friend had said to me when I relapsed the previous year – ‘remember to look after your baseline’. I couldn’t imagine I even had a baseline I was erratic. I didn’t know it was possible to find one! Anyway, I had very important things to get done. I couldn’t keep ‘pandering’ to my illness. I realised I had been equating looking after myself with weakness, but I was actually making my situation even worse. I would often start sentences with ‘I don’t know what’s wrong with me, but..’ and then relate a story where it was blatantly obvious to anyone listening what was wrong with me. The same thing that had been wrong with me for fifteen years, plus I was a bit of an idiot!