Knowing Who You Are

A huge part of acceptance is knowing who you are and being confident with that knowledge. I’m not sure I really did know myself before my illness hit and it damaged my confidence and self-esteem very badly. I had been very proud of working on my local newspaper and enjoyed my life, going out with friends and racing from place to place in my little Fiat Cinquecento – the first new car I’d ever owned. I had to adjust to not working and seeing people every day, learning to drive an automatic car that I leased from the Motability scheme, and needing help with everyday tasks such as cooking, shopping and sometimes even washing and dressing.

I felt myself detach from my body. This was both a physical and mental phenomenon. I could see the full pot of tea on the table and my mind was telling me to reach for it, but the arm just wasn’t listening (sometimes I would get an ‘intention tremor’ where the messages got completely confused and I would try to grab the handle several times in a juddering movement – rather like a physical stutter). I would have to concentrate very carefully on putting one foot in front of the other, and every journey was tiring. There was also an emotional detachment; my mind didn’t want anything to do with my body. My body had broken and I couldn’t accept it as my own any more. It didn’t move in the natural way it once had where memory simply clicked in and my muscles worked accordingly and I could break into a dance or even a run. I couldn’t even stay upright on a bike. My brain apologised for my body on a daily basis, as if it was a naughty child I hadn’t learned to control yet. Sometimes, I simply wanted to leave my body on the floor where it was, having a tantrum, and walk away.

I did all the things a person with MS was supposed to do. I walked with my stick or crutches. I took my medication, went to the therapy centre, and my old life simply disappeared. Occasionally, good friends would snap me out of my auto-pilot by forcing me to do something. My friend Jo would ring me up and ask me if I wanted to go to the pub.

‘I’m on crutches’, I said.

‘Well I think they’ll fit in the car’, she told me

We went for lunch at a pub I used to work in and saw some of the old regulars.

‘We thought you were practically dead’ they said. It was always hard to see people who had known me before, but sometimes even worse to meet new people who asked the typical questions.

‘What have you done to yourself?’

‘Nothing, I haven’t been well so I walk on crutches’, I would reply.

‘Nothing serious I hope?’

‘Well, it is actually, its multiple sclerosis’; this would always signal the end of the conversation.

Another exchange at the hunt ball left me completely lost. A man I’d never met before who I knew was in an open prison for fraud asked me what I did.

‘I don’t do anything at the moment’, I said and explained I’d been ill.

‘Nothing?’ he asked incredulously, ‘if I did nothing I’d go mad’.

All the way home I’d seethed, wishing for a timely Winston Churchill style comeback. At least my nothing hadn’t landed me in prison! Other reactions were based along the lines of how lucky I was not to be working.

‘Wow, retired from work, how’d you manage that at your age’?

‘I was medically retired, I have MS’.

‘How lucky are you’.

Similarly annoying was the line:

‘You look alright to me’ – this always seemed to stir up a wellspring of sarcasm.

‘So, all those trained neurologists and doctors must be wrong. Wait till I tell them’.

It takes an awful lot of confidence and self-knowledge to have an invisibility disability. You have to be self-aware, assertive and able to stand your ground. You have to be able to ask for help when you need it and be prepared to disclose your illness and withstand other people’s insensitive and often hurtful reactions. Even recently, at a party, a friend of a friend asked how I’d been doing recently. I was in the midst of a relapse, having sleepless nights with intense pain and using a crutch to walk with. I thought he was really interested as he sat next to me to talk about his heart problems and we compared medications and treatments.

‘But you’ll get better?’ he asked.

I explained that with MS you never really get better. Every individual has their own pattern but I tend to have huge peaks and troughs, from walking wounded to completely stuck in bed. He looked shocked by this and then said he was going to the kitchen to use the salt and pepper. He avoided me for the rest of the night.

In the early days I had none of this confidence. The others I knew with MS were my confidence because they understood without explanation, didn’t ask stupid questions and hadn’t known me before. With the therapy group I could say I felt like crap, because everybody did. I could help around the centre without inviting question or upsetting my benefits.

I still felt a part of me was missing and the most important part – the part that made me who I really was. I had become a disabled person instead of a person who happened to have a disability. The MS set me apart, subsumed my personality, and I had let it happen. I buried myself in a new identity – a disabled identity – so I didn’t have to grieve for the old me and all the hopes and expectations I’d had.

I have never been a very good judge of what I am like. I recently did one of those silly literary quizzes on Facebook – the ones that ask which star you look most like, which Jane Austen hero should you marry or which character from Winnie-the-Pooh you are. I know how rubbish they are because one said the actress I most looked like was Emma Watson – Hermione in the Harry Potter films – and I am old enough to be her mother. I loved the book Little Women when I was little. It was the first book I read when I was about 9 years old and finished the reading scheme at school. When everyone else had reading to do the teacher would let me go to the school library where I could check out any book I wanted and then sink into one of the bean bags and read it. I liked to quiet of the library, the smell of wood polish and slightly musty books, and the fact that I was set apart from all the others in the classroom if I’m honest. It made me feel I’d achieved something special and even at the age of 9 this was important to me. Little Women was the first book I chose to read in the library and I fell in love with it immediately. Of all the March sisters I wanted to be Jo – the brave, literary tomboy. I loved Jo because she didn’t want to be a ‘lady’ and she was creative, always writing books and plays up in her garret and she also had the courage to know when something wasn’t right for her. In the second book Good Wives she turns down Laurie’s proposal of marriage because she knows he is not right for her, even though they are great friends and everyone expects it. She has the courage of her convictions. When I came across the quiz that asked which March sister would you be I fully expected to be Jo. I answered all the questions and came out as Amy!

Now I’m not saying that such quizzes are accurate assessors of personality – they are just a bit of fun. Yet, this was so contrary to what I imagined I had to read the result fully. Amy is my least favourite March sister and always has been. She is silly and pompous, always trying to better herself and be a proper lady. Amy is too proud of her looks and her accomplishments. She is spoiled and wishes she were rich. She does not want to share her Christmas breakfast with the poor Hummel family and when all the girls decide to buy presents for Marmee with their Christmas money, she saves some for herself so she can still have drawing pencils. She is selfish and very hard to like. I was really offended to be thought of in this way and had something of a virtual ‘flounce out of the room’ where I was disgusted and thought about removing the result from my timeline.

Yet the more I thought about it, the more I thought the quiz might be right. Amy is all of the things I’ve listed above, but I started to realise we did have a lot of the same characteristics. Just like Amy I had gone to a school where most people were middle class and definitely better off than we were. A lot of my friends had ponies, went on holidays abroad and had parents who were doctors or solicitors. I had found it very hard to fit in and be one of them – never realising I could just be me. I also liked to excel at things like Amy and make things special or look the best I could. In the hospital my named nurse had written in my notes that I was ‘fastidious’ about the way I looked and that I needed support to maintain my high standards of personal grooming. In the second book, Amy gets the opportunity to travel with Aunt March where she grows up an awful lot, especially after the death of her sister, Beth. The new grown up Amy is more confident and accepting of who she is and the family she has come from. She still likes to make the best of herself, but is less vain and proud of her own appearance. She still wants to achieve things and have accomplishments, but she is willing to work for this and swallow her pride more. Eventually, she marries Laurie and Jo is surprised by the young woman her sister has become when she returns from Europe. Maybe we weren’t so different.

I had ideas about myself that were, in some cases, completely contrary to my true self. It is very hard to look at yourself and see everything – the good and the bad and accept who you are. Acquiring a disability makes it even harder because your ideas about yourself can easily be shaped and distorted by attitudes and ideas about disability, the things people say to you and a completely shattered body image. Part of acceptance is being able to do this and form a confident, self-aware person. I want to get back to my true authentic self; to accept every part of me including my slightly defective body! Wish me luck.