Back to Basics

Back to Basics

I teach my Recovery Writing group different ways of keeping a journal. We do all the creative stuff such as exploring feelings and expressing them through different forms of poetry and creative writing. Every technique we learn helps us to understand ourselves better from something as formal as creating Haiku to something as simple as writing a list. There are times, in recovery, when only the simple stuff will do. When you are unable to face what has happened, when it is still too recent to make sense of it, or when you simply lack the motivation to embark on a complex piece of writing. So, at the beginning of a course I give out a basic set of questions and answers to every member, that covers how the writer is feeling, what they’ve been doing, and ask what they need to do for their recovery today. For the last six weeks I’ve been in that place – where the new recovery is so raw that it is enough to get through every day minute by minute.

I have been so shocked by the death of my friend and the sudden breakdown of my marriage that it has been very hard for me to do basic everyday things. My head has been such a jumble of unanswered questions and emotions that I have needed this basic list to get by. My usual chatty and detailed writing style had deserted and although I knew it would be beneficial to write every day – even if only for clarity and catharsis – I just couldn’t seem to make a start. I would sit up in bed with my journal and my pen and write precisely nothing. It was easier to read, maybe because it would block out my feelings and replace the jumble of thoughts with another story that was not quite as painful as mine. I started to read old journals. Journals I had been writing in every night throughout my marriage. I would write every night because I often couldn’t make sense of what had happened, but also because my husband came to bed so much later than me and I had private time to explore my feelings. Reading my old journals made me cry and really brought my emotions to the fore. I could see what a rollercoaster I’d been on emotionally and showed me how I’d tried so hard to make sense of someone else and neglected my own needs. I saw how the regular reminders of what was wrong with me had eroded my confidence and left me so confused I didn’t know what was right and wrong anymore. How had I let myself get in this mess?

Only by reading the old diaries could I remember that I was a strong person who had overcome so many obstacles. I remembered my illness as something that happened to me and not something I had created, or wallowed in. I reminded myself of all the things I’d achieved despite the illness and how much I had to look forward to. I remembered how hard I’d worked to care for my second husband and how I’d supported him right up till his death, because I loved him. I had started to believe that someone finding my illness ‘difficult’ was understandable and even acceptable. I had kept thinking to myself ‘if you love someone you care for them naturally’ and worried that my illness made me essentially unlovable in some way. I had started to settle. Yet, in the back of my mind and in my journals was the hidden truth – he didn’t care for me because he didn’t love me. Receiving the letter that ended our marriage was one of the hardest things I have ever had to deal with, but at least it told me the truth. He didn’t love me. I could then start to heal and realise I didn’t do this wrong. That hidden thought in the back of my mind – ‘surely love isn’t like this’ – was answered. It wasn’t like this, because for him this wasn’t love.

So, I can begin to write and continue to heal. Each day I ask myself what I need to do to get through it and I am not so hard on myself. Some days I do really well and achieve everything I set out to do. Other days I want to hide on the couch, by the fire, with a good book and the company of my dog. Whatever I need to do that day I am easier on myself and let it happen. I try to keep to the basics – take my meds, eat well, and walk the dog. The rest is a secondary consideration. I have released the pressure on me to be perfect and get everything done and there are some benefits to living alone. If I don’t feel like cooking I can just get some fresh soup and bread. I can leave the ironing hidden in the basket at the bottom of the wardrobe and watch a good film instead. I can accept help where it’s offered and if someone wants to do my garden, or my cleaning or cook me a meal I enjoy the support and don’t feel like a failure because I’ve given in to my illness. I am able to feel ill and say so, without worrying that someone will leave. He left already.

I am back to basics. Simple, tiny little cautious steps towards my new life and new writing.

I Lose a Friend

 

I was lucky to grow up in a family where sickness and disability were just part of life. I don’t mean lucky in that bollocky way where non-disabled people look at the disabled and say ‘I’m so glad you exist, in order for me to stop sweating the small stuff and appreciate my comparably fruitful life’. I mean it was so part of everyday life that it seemed normal; it seemed normal because it is normal. In reality there is no polarisation between disabled people and ‘normals’, we’re all just on one big long continuum. Also, I am aware that there is a big debate on the semantics of this, but I cannot be bothered to get into a long discussion on the merits of ‘people with disabilities’ over ‘disabled people’. My uncle was just my uncle – the fact that he walked with a stick because of a severe spinal injury was just part of who he was. One of my aunties has severe epilepsy and can go into a fit in the most unfortunate places – when standing on a glass table, in the front seat of the car and most memorably when in labour with my cousin. The ensuing panic over whether she had the right baby caused by her completely blanking out the whole labour and also because my cousin had a distinctly blue tinge because he was deprived of oxygen. This was pre-Avatar, so blue people were even more startling.

In a large family, such as we had, the law of averages would dictate that some of us were either sick or impaired in some way. When I was 12 one of my cousins developed leukaemia and died at the age of 19. This was a huge shock to me at the time, but still seemed like part of life in all its rollercoaster glory. When I was eventually diagnosed with MS all of this experience probably stood me in good stead. I did a little of the ‘why-me’ soul searching, but even at the age of 21 I knew that sometimes shit just happens to people. People like you and me, good people, bad people, tall, thin, short and fat people – sometimes shit will happen to all of them. Life is random and chaotic that way, it does not discriminate and nor does it persecute; it just is what it is.

School was segregated when I was younger. In the seventies and eighties the special school reigned supreme and during my education at primary and secondary school I never remember sharing a classroom with anyone who could be described as disabled. It wasn’t until my sixth form days of the 1990s that I had my disabled consciousness awakened by my friend K. K joined us from another secondary and was the only visibly disabled person in the whole school. K had cerebral palsy, in the days before it became the trendier CP, although sometimes, if asked, she would say ‘I’m a spastic’ in reclamation of the term just abandoned by Scope. That would shut people up fairly quickly. K walked with a three wheeled walking frame that had a great little basket for carrying books, treats and all the essential stuff. I don’t think I fully took on board how hard school must have been for K until years later when I had my own mobility difficulties. The to-ing and fro-ing from one classroom to another, sometimes right across campus was always a struggle. K was known in the yearbook as the girl who finally got our headmaster to spend some money so she could have ramped access to the main buildings. There were times it must have been hard to sit in the sixth form block all through dinner watching people flit in and out to shops and sometimes all the way into town to chat up unsuitable boys and surreptitiously eat chips while trying to hide from our deputy headmistress who thought eating in the street tantamount to Satan worship. I think I treated her sometimes like a permanent fixture we all revolved round like satellites – I moaned at her about men, shared celebrity magazines and books, and generally treated her like an unpaid agony aunt. The sheer tedium of listening to my constant ‘on again off again, are we friends or lovers’ relationship with one particular sixth former can only be imagined. It is incredible how self-absorbed you can be when you’re 18.

As I got older, and certainly when I had my own diagnosis, K became my disability guru. She was clued up and smart about what it was like to live in a world of ‘normals’ who think they’re a completely different species. This was all new to me. I couldn’t believe that where I’d once had loads of friends, I now had people who cried when they saw me, who didn’t invite me to their parties ‘in case it reminded me of how I used to be’, or who even crossed the street because they couldn’t think of a thing to say. I kept a strong core of friends that could be counted on one hand and K was definitely one of the closest. We still bonded over TV shows, music and books but also over a love of men; the yummy Michael Hutchence being a particular favourite – oh how we wanted to be Kylie and become corrupted by him, preferably while he was wearing his brown leather jacket with a bare chest. K politicised disability for me, helping me understand why it wasn’t just a medical issue but a social and cultural definition. Even before my second husband she taught me about the social model of disability, the history of oppression, cultural representations of disability and why sometimes it just plain sucks to be viewed differently from the rest of the world. I took K’s recommendation of ‘Skallagrigg’ by William Horwood as my main text for my English dissertation. The storyline of Esther, a young woman with cerebral palsy, was obviously close to K’s heart and we spent many hours discussing plotlines, ideas and representations.  It was no surprise to me that I got a first – I had learned from the master! Even when I moved to Milton Keynes, she would come down on a bus for the weekend and stay at the nearby hotel, spending many happy hours watching films, eating ‘carpet picnic’ and discussing life. I visited her in her beautiful new custom built flat and caught up on our new TV crushes, went out for posh coffee and discussed the problems she was having with the eating disorder she had developed. She described it, with typically intelligent self-awareness, as a leftover from rehabilitation where putting on weight was a huge no-no for mobility and eventually caused moving and handling problems for those caring for you. She was also switched on enough to know that it was a reaction to the lack of control wrought by her deteriorating disability. Eating was just about the one thing she could control, until she couldn’t.

As you may have imagined by my use of past tense, my friend K died last weekend. I had been so caught up with my own domestic tribulations (my husband moving out) that I had not checked my answering machine messages. Our most recent contact, as she veered between nursing home and hospital, had been mainly by text and messages via Facebook. There had never been an opportunity to visit that suited us both, either I was busy or ill or she was, but we were in touch frequently. We had particularly enjoyed the recent revival of our shared taste in men when she joined my ‘Weird Celebrity Crush’ page on Facebook and we realised that if we’d ever gone on the prowl together we would be constantly fighting over the same man! She joined my book club from afar and read along on her kindle when she could to participate through messages and a lot of my friends became her friends online. I was shocked to see a voicemail message from her on my phone because we didn’t communicate that way and also because she preferred not to use her voice, which she was struggling to control more and more. As soon as I heard her mum’s voice I knew something terrible had happened. It came from leftfield. By virtue of having a disability and the work I have done with disabilities I do have friends who are very, very sick some of the time so it did not surprise me that someone had died, just that it was her. I realised that I thought she’d be there forever, hanging on, just like she did in the sixth form. I felt I had neglected my friend and was sorry for myself. I was also sad at all the things I had experienced that she had missed out on. I was sad I never got to say good bye and tell her just how much I loved her sense of humour, the naughty twinkle in her eye when we talked about boys, her tactful way of challenging me when I talked bollocks and her openness and honesty about her life. I will miss her more than these words can say.

 

 

MS and the other 'M' Word - Part 2

MS and the Other ‘M’ Word – Part 2

I can’t believe how long this first step of acceptance takes. When I teach my writing course we go through these steps over a 6 week session, but it’s taking me much longer. One of the writing exercises we do is to make lists – it’s a very hard exercise, but I guess I’m doing the same here, just in a different form. Instead of listing each loss, event or thing I’ve done wrong I write a blog instead. In order to accept what has happened to me in life I need to face it, look at it there in black and white. I’ve not finished yet but I am getting better.

I recently had an interview to continue my counselling training with a diploma. I was here last year and decided to a PhD instead, although that hasn’t worked out. Last year when making applications I was asked the same question I was asked when interviewing this year.

‘Do you think your illness will impact upon the course?’

Last year I was almost offended by the question. What does my illness have to do with my skills and abilities? I thought the two things were separate. I didn’t realise how far I’d removed myself from the body I’m in. I didn’t get a place. This year when I was asked the same question I thought I might as well be honest – if they reject me on the basis of my answer then maybe this course and profession is just not right for me.

‘It would be wrong of me to tell you won’t affect the course. It will have some impact, but I still feel I can do it’.

This time I got the place. She said I wouldn’t have been accepted if I’d answered differently. They don’t like to accept people who are in denial about things I guess.

Thinking about my marriages I have to admit that denial played a large part; although without it I don’t think I’d have ever got married a second time and I wouldn’t have missed that for the world. Most of my relationship with my second husband Jez is detailed in the book ‘Happy Endings’ but it is fair to say that if I’d thought long and hard about what we were doing it might have all turned out differently. I don’t waste time regretting or rehashing stuff anymore – I had good therapy for that – but I do wonder where I found the bravery. One of my tutors at university talked to me when Jez was in intensive care with pneumonia and she wondered how I could manage to watch someone deteriorate and possibly die from a disease that I also had. She called that bravery, but I think the bravest thing was marrying him in the first place. I have often thought of Jez when I hear the Coldplay song ‘The Scientist’ and the line ‘nobody said it was easy/ but no one said it would be so hard’. Part of me understood fully what I was signing up for – I even wrote in my diary about my misgivings – but decided to follow my instinct and even after only a few weeks of knowing him, my instinct told me I couldn’t be without him. The decline of our life together was nothing to do with our relationship, but entirely to do with MS and the way it removed my husband from me slowly piece by piece. We were gradually separated by equipment, carers, hospital stays, more equipment, and separate beds and eventually in the last months he was alive living entirely separately. By this point I was at my lowest ebb, exhausted, guilty and full of grief. I thought about the irony of my situation and sometimes wondered if this wasn’t some sort of cosmic joke; after my first marriage ended, karma was trying to teach me a lesson by making me the carer this time. Every time I fell short I thought of every time I’d shouted at my first husband with frustration – here I was getting a taste of my own medicine.

 

Of course one year later I met my current husband and this is where the writing becomes difficult and I kept putting off the blog. As I’ve said before my husband and I joked about Henry VIII’s marriage record. One divorce and one death: we used to joke that he was either going to be beheaded or out live me I know the one he was hoping for. If I’d been finishing this 3 weeks ago I would have said that we were together for life. I married my husband knowing we were each other’s hope for the future. When we bought our house he commented that it was a place he could die in, which sounds terribly morbid, but I took to mean that he was in this for life. I could actually visualise us being old together here, watching the seasons turn, welcoming his grandchildren and growing old and crotchety together. 3 weeks can change your whole life. I now know he did not understand the MS – could not understand the unpredictability of the illness, how I could be well one day and stuck in bed the next. He sometimes thought the illness was all in my head and other times was shocked about the sudden changes in my life. He found it hard to see me as a whole person, with the same thoughts, feelings and desires as anyone else. It seems I could not be a wife in the full sense and also be ill; the two thing are mutually exclusive. The problem is I don’t change. When I am ill people change towards me, my thoughts, feelings and desires do not change. I am still me. I am still trying to get my head round all of the implications of this and what is going to happen to me next. It seems that whatever I do I will be doing it alone.

I have to wonder if I have been in denial about the realities of my marriage, or whether it genuinely is a complete shock from out of left field. All I know is that now I have another recovery process starting and I am in transition, again.

 

MS and the Other 'M' Word

 

When people ask I say I am taking the Henry VIII approach to marriage – I stole it from Peep Show, but it seemed appropriate. The way of remembering Henry VIII’s wives and their fate is to look at it in the following order – divorced, beheaded, dead, divorced, beheaded, and outlived. I am on my third marriage and have managed divorced and dead so far – hubby No 3 is of course hoping to skip a beheading and move right on to outlived. Of course people have difficulties in marriage anyway, because a lifelong relationship with another person takes an awful lot of work, but MS has loomed large in my marriages and has its own unique effects on a relationship.

In my first marriage I was young, naïve and had only been diagnosed a few months before we met. At this point in my life I felt like MS was the end of the world. It had lost me my job, my relationship and most of my confidence. I couldn’t see that I was any use to anybody and was totally confused about where I was going in life. In fact I had pretty much accepted I was going nowhere. I had my benefits sorted, I was living at home and I thought I’d accepted the changes that had happened in the last year. I thought ‘okay – so now I’m disabled and this is the life disabled people lead’. I was involved with the MS Therapy Centre and resolutely dropped out of the world of the ‘normals’. I met my first husband at a friend’s 21^st birthday party. She was at an agricultural college and her boyfriend was on the rugby team. I had been to watch the rugby team play and she introduced me to one of the team members who she thought might be my type. In retrospect I was grateful for any sort of attention. He knew about the MS and it didn’t seem to bother him. I thought he was fine with it, but really he hadn’t understood the enormous effect it could have on a relationship. I couldn’t expect him to understand it, because neither had I. We went from dating to living together and then two years after we met we got married. Just two weeks before the wedding I had a miscarriage and I went through the wedding day in shell-shock. At the same time my brother and his girlfriend had their little boy and my granddad died. It was a rollercoaster of a month for all the family. The miscarriage was horrible and although I’d never thought that carefully about having children I now wanted one. I knew it would be hard, but knew other women with MS who had children. I thought it was probably best to have them as soon as possible in case my illness got worse so we moved into a new home and carried on trying. I miscarried again 6 months later, twelve weeks with twins. No one talks about miscarriage. It had probably happened to some of the women around me, but the only ones who seemed to talk about it were those who could say that since then they’d had children. I had a D and C operation, caught an infection and couldn’t get out of bed. I was in agony and I realised my husband was just not up for this level of difficulty so soon. He would come in from work to a desperately sad woman in pain, in and out of hospital and unable to do anything round the home. He started to come in from work and sit in his chair for an hour, staring at the TV and not cooking the tea. After a repeat operation to sort out the infection I came home from hospital to a mess in the flat and a husband who didn’t want to engage with me at all. I needed to be looked after for a few days but I felt he couldn’t cope. I asked if I should go home to my parents and before I’d even gone to the phone he was packing my bag. In retrospect I think we were both depressed.

The situation only worsened when I fell down the stairs and broke my collar bone. I was already routinely walking on crutches and now I could only use one to lean on. We had to apply to our local council for rehousing and were offered a house with a stair lift on a run-down estate in town. We took the house because we were desperate and in debt. We both spent money to cope with our situation and cheer ourselves up and one income was not supporting us both. The house needed so much work doing to it, we had a decorating grant that covered one room but we had no carpets, most of the rooms had no curtains and several were not decorated – the stair well still had graffiti on the walls. The next door neighbour played loud music, sometimes all night, leaving me exhausted and sleeping during the day on a day bed in the living room. I hated it. Eventually we found a ground floor flat under our old one with a small garden and I became much happier. I started to work part-time for the mental health team and took counselling qualifications, but my husband was struggling badly. He had been fired from two jobs in succession within his probationary period and had started a job in caravan sales that was dependent upon commission. When I relapsed he simply did not cope and my parents were doing more and more for me, creating resentment.

He meant no harm and there was no malice in him. He simply did not know how to do things. If I was taken into hospital he wouldn’t know what to put in the bag so I would find an assortment of mismatched and sometimes totally inappropriate pyjamas, hairspray and face cream but no toothbrush or deodorant. He wouldn’t always come to visiting because he was concerned that he had only just got in from work and needed to eat. When left with the cooking at home he could only cook what I called ‘brown food’ – breaded chicken pieces and hash browns that could go straight into the oven. He wouldn’t touch cheese because he didn’t like the feel of it and he wouldn’t eat tomatoes, yet he would eat a pizza that had both on. It seemed that whatever happened his needs had to be accommodated first. I took this to be selfishness but only much later in the marriage I realised he had his own disability. He had dyspraxia, not often heard of then and usually misunderstood. I thought it was something like dyslexia, but then realised that it affected all co-ordination and learning. I read a book on adult dyspraxia and realised that this explained everything; the rumpled clothes and shirts that always seemed to be working loose from his trousers, tripping over steps and into furniture, the inability to plan ahead and only remembering half of a shopping list. I was expecting him to do something he simply could not do. Once I had been so frustrated that I’d thrown a full tin of cat food straight at his head! Now I knew he would never manage – he was not being selfish; he genuinely only had the capacity to look after himself. Asking him to look after me was like expecting me to climb Snowdon on two crutches. It was never going to happen.

 I knew now that the situation could not continue and eventually I plucked up the courage and asked him to move out. I understood that I was to blame for not taking into account how he would cope with the illness. I did not want to make the rest of his life so hard and I couldn’t stand the feeling of being so alone in a relationship. We were both upset, but agreed after a few weeks of separation that a divorce was probably for the best. He had felt so much better since returning to his mother’s and was looking for work. I felt a huge relief that we weren’t together anymore, but sadness and a feeling of failure stayed with me.

After the divorce I knew that I did not have the usual luxury of falling in love and expecting love to carry a marriage through the tough times. Anyone who was going to be with me needed to understand MS and all of the pressure that such an illness could put on the relationship. Put simply, love would not be enough; I needed a man to see past my disability, but also to understand exactly what our future might be with MS as the third wheel. I needed someone clear-sighted enough to be realistic and strong enough to love me anyway. It was a tall order. I learned that romance is not enough. I had to consider someone’s character, our compatibility and whether the partnership would work beyond the first infatuation. I told my friends that I didn’t think I’d ever live with anyone again. It was too much to ask of another individual and living with me and the MS would ruin any relationship. I gave up on romance and then met the biggest romantic of them all.

 

Disability Top Trumps

I have been watching a lot of the Paralympics coverage on Channel 4. I am so pleased they’re making such a big deal about it and although I could probably argue till doomsday about the semantics of their coverage, it does seem to be making people sit up and take notice. I am hoping it can undo the negative press people with disabilities have been receiving for the past couple of years and show people that disability is very varied, and that each individual has something to offer even if they do need some support to achieve their aims. I have been fascinated with Lexi – the computer programme that explains to the viewer the differing categories of disability in each event and how those categories are made up of people who may be visually very different but have similar needs. In between watching I have been publishing my book to Kindle and the two things in conjunction made me think about those differences, even between people with the same disability, and how that translates to racing together, working together or even living together like two of the swimmers who have been competing this week.

When I was first diagnosed with MS and started walking around with sticks occasionally, I thought that being disabled was being part of a club. I thought there’d be a welcome, a sisterhood or kinship. I didn’t know then that disability was more than just one big homogenous lump! I had to learn that the category ‘disability’ is made up of individuals – people with varying disabilities but also differing characters, outlooks and even different feelings about being called ‘disabled’. I was shocked one day when trying to get across the road at a very busy crossing; I met a girl in an electric wheelchair coming the other way. I was struggling with two sticks and looked up and smiled – I thought we shared something, struggling in the mass of people and trying to get by. She looked at me and said:

‘Get out of my way Grandma!’

Some people are not arseholes because they are disabled. They are just arseholes, regardless. There are divisions and splits between different groups and categories of disability and there are differences in perception from the able-bodied community. In my experience, the public at large understand a disability they can see. Just like the ubiquitous wheelchair symbol, the public like to see an aid or adaptation that denotes disability. Anything will do really – a hearing aid, a stick, crutches, walking frame and the wheelchair. All of these mean you are automatically classified as disabled. Of course there are still those ‘what have you done to yourself?’ type questions where the individual is expecting to hear you’ve sprained your ankle or broken your leg. Then the awkward exchange where you either lie just to get out of there, or you tell the truth and watch them squirm.

There is a sort of disability ‘top trumps’ at play here. I don’t know if you remember top trumps but my brother and I used to play them all the time, so much so that we started to know which card in the pack automatically trumped others without checking. For those of you who don’t know about them, they are a pack of cards with a theme – cars, monsters, superheroes – and each card would have categories and a score for things like weaponry, speed, stamina or sneaky things like cunning. The cards were shuffled and dealt out to players and then turned over one by one. One player would pick a category where the score would ‘trump’ all the others and then would win those cards. The player with the most cards at the end of the game would win. A few years ago I bought my nephews the top trumps of farts and pooh, which lead to a very amusing Boxing Day afternoon. I am embarrassed to say I think I was more amused than they were.

Disability top trumps are a bit like that, but without the cards. I have lost count of the amount of times I have been stood in agony in the Post Office queue and seen them let someone in a wheelchair to the front of the queue. Outside I am smiling with everyone else, but inside I’ll be screaming ‘at least they’re sat down!!’ My pain condition means I can’t stand or walk for long periods without feeling like someone is pouring boiling hot water down the backs of my legs. If I am holding something like parcels for a long time pain radiates across my shoulders and lodges in the backs of my elbows. The best way to describe is like toothache, except it’s all over my body. Imagine a migraine in your lower back and you’re sort of there. However, there is no outward sign of this. On days where my balance is pretty good and I don’t need a walking aid I have to decide whether or not to take on anyway just so that people understand I’m struggling. So anyone with a walking aid trumps the person with a limp and anyone in a wheelchair trumps all! So what is it like when two people with disabilities live together?

I lived with my second husband for six years. We both had MS but his was primary progressive and mine was relapsing/remitting. He had many outward signs of disability, even when I first met him. He was a permanent wheelchair user, had difficulties with speech and upper body movement and had a blinding ability to push to the front of any queue. In many ways his disability completely trumped mine, but when you are living together permanently the niceties and politeness shown in the post office queue disappear quickly. Jez had no pain at all and took very few drugs so he would be the one to get up in the morning and make breakfast until I had taken my meds to reduce my pain and stiffness. People would stare at us when out shopping, not just because they were bloody rude, but because often I would be walking along next to a man in a wheelchair who was carrying all the bags. People would look at me like I was the laziest cow they’d ever seen. Of course as he got worse the tables turned and I found myself getting out of bed at 6am every morning to start a morning routine and in the years until he died his needs trumped anything my illness had to offer. Even to the extent that when I collapsed with a gall bladder attack I realised it would be impossible to have the gall bladder out and carry on with the routine at home. Colds, sniffles and stomach upsets were trifles next to a man who couldn’t breathe or feed himself. Yet, on some days I had to play the trump card of the bad back. One morning I had a twinge in my lower back as I was hoisting my husband out of bed. It was a Sunday and we didn’t have care on a Sunday so we could spend mornings together without interruption. Of course this meant I did the two hour care routine alone but we’d managed to get a good system going and it didn’t usually bother me, considering I could spend the rest of Sunday on my backside reading the papers and watching the rugby. On this day though the twinge was a bit sharp. I’d been sleeping some of the night on our sofa bed because Jez’s leg spasm was keeping me awake during the night. While Jez was in the bathroom I started to bend down and fold the bed back up. I was fine until I stood up, my back went and I fell back down onto my knees. I stretched out on the floor to reduce the spasm, but nothing was working. I managed to stand up and carry on the care routine. When Jez was finally up and in his wheelchair I fell back into the bed he’d just come out of and couldn’t move. This was one day when my disability had to come first – it forced its way to the front of the queue. After breakfasting on crisps Jez decided we needed help and rang my parents to tell them he’d ‘broken his wife’. They took to two hour trip to rescue us both and got a very nice doctor to come out and give me an injection into my back.

It also felt weird when I was awarded a Disabled Student’s Allowance and had a library assistant, who had a limp. I felt a complete prat following someone, visually more disabled than I am, round the library and loading her up with books and photocopying. Invisible disability like mine rarely falls into proper categories – the social model of disability is used for this type of assessment and the assessor looks for the ‘lack’ that can be mitigated by either equipment, money or an assistant. My disability fell more easily into the realm of sickness than impairment – no amount of equipment or money could help when I am in relapse and completely unable to get out of bed. How do you mitigate muscle fatigue, chronic pain, or sudden blurred vision? It is impossible to measure or quantify. I have been referred to by people with ‘real’ disabilities as a fake or phoney ‘spaz’ – people are naturally suspicious of something they can’t see. I have to ask people to have faith in me – to accept that how I describe it, is how it is.

Now I live with a ‘normal’ and this brings its own difficulties. It is easy to fall into a lazy way of living, where my illness trumps everything else. There are times when I take what my other half does for me for granted – every morning he brings me a cup of tea and my meds so I can stay in bed until I feel I can get up, he does all the fetching and carrying, errand running and all those little nagging jobs around the house. I have to make sure I am not the only person allowed to be ill in the house. When he had a minor operation and got an infection I made sure I looked after him – if I am having a good spell at times like this I take over everything so he knows that I appreciate all those times he’s done it for me. So, a chronic illness like mine always trumps the able-bodied, but is looked upon as trifling by those with severe disabilities or impairments. Acute illnesses in the house like flu, food poisoning or viral infections have to come first, but if you have a headache or a cold you’re on your own. My day to day chronic difficulties have become our normal – but an acute episode of illness can be so severe it trumps everything. It may be strange, but it works for us. I wonder what Channel Four’s Lexi would make of our categorisations?

 

 

 

Where I Publish a Book About Death and Name it After a Sex Act

I have been quiet for a few days because I have been busy trying to format my book for Kindle. This is not as easy a process as I imagined and I’m sure there are plenty of terrible mistakes here, there and everywhere. Finally though, it became more important to get it out there and finished than it was for it to be perfect. I have been writing the book on and off for the past two years and just felt, as part of recovering, that now was the time to let it go into the world. It was a difficult story to tell and I still have some misgivings about some of the things revealed, but now it is out there and I can’t get it back. It is a strange feeling – almost a physical relief to actually let it go. One of the things I discovered during the writing of the book is how hard it can be to let things go.

My second husband (yes, I am aware I sound like Elizabeth Taylor) died back in 2007. He had a very aggressive form of primary progressive multiple sclerosis – not like my airy fairy benign kind. I read afterwards in an MS handbook that people do not die of MS but there is a very small minority, about 2%, that can develop lesions in the brain stem leading to issues with swallowing and even breathing. This was Jez, he always did want to be one of the elite. His breathing and swallowing became so bad he was constantly aspirating fluids. In 2005 he had to have a PEG feed inserted so we could give him liquids, food and medication directly into his stomach. We also had to learn as a family to provide suction – putting a tube down his throat and suctioning secretions and saliva he had been unable to swallow. Eventually after a nasty bout of pneumonia and peritonitis he decided not to continue with feeding or treatment for infection and he died within a few days.

Every year around the anniversary of his death I would find myself getting stressed, introverted and a great wave of sadness would roll in and threaten to drown me. Of course time improves these things, but every so often, after weeks of not thinking about it, I am still shocked by the sudden wave of grief that arrives unannounced and unwanted. Sometimes, it lasts a few days and other times it is momentary but it is always a deep well that obliterates all other thoughts.

In films about grief there is always a rite of passage – something our main character does to achieve what the Americans call ‘closure’. I kept waiting for this closure to occur and for me to be ready to get on with life. I realised, as with most things in life, there are no set steps or patterns to follow. Many people do feel they are on a pre-ordained path or that they are walking their walk in a certain way but I have never felt like that. Life has always been a puzzle to make sense of, a muddle that needs untangling, only for another muddle to appear in its place. When I was young I thought there was a definite path, that one day I would wake up and be a grown up and know how to live life. I am in my late thirties and now know that everyone is just muddling on in the best way they know how. It seemed like this with grief. I know, as a counsellor, that there are stages of grief but going through them is not a tidy, chronological or linear process. I could easily have whipped through denial, anger and acceptance all in the space of an afternoon in various orders. I scattered Jez’s ashes and felt no different, I had holidays and formed new memories, I moved house twice and still had nothing near what I would call closure. I figured that one day it would all fall into place and thought that in the meantime I might as well just get on and try to live life. In films all of these experiences would have elicited a breakthrough or highlighted a way forward. I even watched one film with Jennifer Aniston and Aaron Eckhart where he was a motivational speaker – making money out of grief and closure without sorting his own head out. It turned out he had to release a parrot into the wild? Why doesn’t Jennifer Aniston make better films?

So I have been getting on with life – finding a path of sorts and walking or wobbling down it on crutches. It was suggested to me that I might like to write a book about it but I wasn’t sure. I love writing but didn’t know what difference it would make to get it all down on paper. Who would want to read it? Also, if people I knew did read it what on earth would they think? I started tentatively but then really enjoyed it, spending whole days tucked away into my reading room, tapping away at my laptop. Sometimes I cried, sometimes I laughed, but the process of writing did a few things. It helped me identify how I was feeling and how I’d been feeling at the time, when I’d been using sheer determination and gallows’ humour just to get through the day without letting Jez see how scared I was. He was scared enough, without me adding to the problem. I wanted him to feel that someone had it in hand. So it’s been an experience, not always a comfortable one and this week I finally self-published on Kindle.

However, Jez had to have the last laugh. When I used to say something particularly stupid, or had a blonde moment, Jez would roll his eyes and call me a bear of little brain. It turns out he was right. I was deep into formatting on Friday and I had to make a final decision about what to call the book. I wanted to call it ‘Tide Mark on the Bridge’ after a quote from a letter in Patricia Duncker’s book ‘Hallucinating Foucault’. It seemed to represent a lasting mark on the soul; where the waters have receded but it is clear that something has been survived. Yet I was scared of copyright issues. I had tried to gain permission but received no reply and didn’t want to run the risk. I had been struggling for days to think of a name and in re-reading the book at the last minute I realised I’d written a lot about the idea of happy endings and fairy tales. So completely unwittingly I chose the title Happy Endings. For me it represented a lot of things: that death was a happy ending for Jez who was suffering, that we expect marriage to be a happy ending when in fact it is only the start of the story, and whether there could be a happy ending for me after what had happened. Hours later, after publication, I did an Amazon search for the book and then realised what a mistake I’d made. Pages and pages of erotic fiction appeared – with interesting graphic covers. It was only then that I realised I’d missed the euphemistic meaning of ‘Happy Endings’. So that is how I named a book about death after a sex act. It’s amazing how many books have been writing about erotic massage, who’d have thought?? I desperately wanted to get the book back and change it back, but the more people I’d told about the stupid mistake the funnier it became. Everyone who had known Jez was quick to point out how hilarious he’d find it. So, ‘Happy Endings’ it is – who knows I might even sell a few extra copies! There are going to be some very disappointed people out there.

http://www.amazon.co.uk/Happy-Endings-ebook/dp/B0094GZGUU/ref=sr_1_1?ie=UTF8&qid=1346590986&sr=8-1

On and Off Again

My relationship with my illness has been like that of a couple who have one of those on again/off again relationships. You know the sort of relationship I mean because everyone knows a couple who does this. They’ve been going out for a long time – they may even live together or be married. They potter along peacefully for months and then an argument occurs and it’s all off. There are tears, recriminations and the injured party tells all their friends complete horror stories about the unreasonable behaviour they’re been putting up with for so long. More than anything there is a need to justify the split and explain how terrible it’s all been. Then, inexplicably, sometimes after months apart, comes the news that they are suddenly reconciled. Cue the awkward social engagements where you have to make small talk with their newly reinstated partner without letting on that you know he cleaned out the joint account to put the money on a horse, or the one excruciating occasion when I had to endure a long car journey with someone who’s unreasonable and kinky sexual demands I was only too aware of in lurid detail. We often wonder why our friends take these partner’s back but there are many reasons: seeing what it’s like in the single world can be enough to make anyone revert to previously unwanted domesticity, familiarity can have a strange draw, it’s just too daunting financially or emotionally to complete the split, or finally that however dissatisfying or frustrating, it is the comfort of a well-worn relationship that drags a couple back together. Whatever the reason, friends of these couples hate the awkwardness and drama of living in the orbit of these couples.

My relationship with MS has been on again and off again. I veered between retreating into it and then ignoring it altogether. I have a personality of extremes – it is all or nothing for me. Rather than the on and off relationship I am very definite about what I want and don’t want. If it has deteriorated to the point of leaving I would imagine I’d left for a good reason and no amount of financial or emotional hardship will make me go back. However, I couldn’t outrun or walk away from MS. It was here, inside me, causing havoc and no matter how much I didn’t want it, I couldn’t divorce it. I resented it.

On a purely factual level my illness has been on and off. Back when it was first diagnosed it was there on my notes. Like a black mark that never goes away. I didn’t understand the significance of this until I saw a financial advisor about getting a mortgage. I couldn’t insure the mortgage with a payment protection plan purely because of MS. I was indignant and with all my new found knowledge from the MS Therapy Centre I said:

‘MS does not shorten life, it’s a degenerative disease but it’s not terminal. People don’t die of MS’.

His tone remained remarkably casual when he replied:

‘I know. It’s just that people with MS tend to commit suicide’.

There’s really no answer to that. I found I couldn’t start life insurance, or health insurance to travel abroad without stumping up a hefty premium. It was like a big banner unfurled across my brain saying in giant red letters.

‘THIS SHIT IS SERIOUS!’

Then a new neurologist came to the hospital in the late 1990s. He was going to gradually work his way through all people with neurological problems so we had input on a regular basis. Up until 1997 we’d had a visiting neurologist every now and then. I went for my appointment with trepidation because there were new drugs out there, interferons that could probably change the entire outlook of someone with MS. I was quite keen to talk about these drugs because I’d stabilised quite well and wanted this thing stopped in its tracks. I was confused by the questions he asked.

‘How long have you been using a walking stick?’

‘Do you really need it?’

‘Tell me what’s been happening’.

What was happening was that I had MS. I’d been told I had MS. It was like he’d missed a step or not read my notes. He was talking about having MRI scans, lumbar punctures, and all the tests I’d already had. I asked about the drugs.

‘Well let’s see what the results say first and then we’ll move forward.’

This was the start of two years of uncertainty while I travelled from rheumatologist, haematologist, and neurology to try and find out something we already knew. He kept justifying this on the basis of being thorough and since was no single test to confirm MS, all this was needed to rule everything else out. We got no further forward, except a possible positive result for Hughes Syndrome and then one for Systemic Lupus, but then when the tests were repeated there was nothing. I was completely confused by this point. My MRI showed the one single patch or lesion in the brain but nothing new. The neurologist concluded that it might be a very benign form of MS but that he suspected something else. He told me to take a soluble aspirin once a day and come back if I continued to have problems.

So, it seemed like MS was off again. I told people at the MS Therapy Centre what had happened. Some had similar experiences and were sympathetic, others were more hostile – they had always thought I didn’t have the same thing they did. Family were supportive and my GP was positively enraged that I had MS on my medical records, but that now this man was trying to overturn it all without any real new knowledge of what was causing my illness. I told friends but I really should have kept my mouth shut. Some were suspicious and thought I’d obviously not had anything wrong all along. Others clearly thought I was some sort of mental case who ‘thought’ they had an illness. I was so desperate that I actually asked the neuro if he thought I was crazy. I felt so ill I didn’t really care what was causing it; I simply wanted it to go away. I asked him to refer me to a psychiatrist if he thought it was all in my head. He looked startled and assured me there was something physical going on; he just didn’t know what it was. I was at the limits of medical science, but medical science never accepts its own limits; if they can’t see it or preferably measure it then it didn’t exist.

I saw a third neurologist in Milton Keynes after I moved there in 2001, but he was equally non-committal. All my GPs were treating me as if I had MS and all my medications were treating the symptoms of MS: tablets for pain and muscle spasm, tablets to regulate an overactive bladder and others to calm the strange nerve sensations. Yet, neurologists still seemed very keen on passing me from pillar to post. I had another MRI scan which was sent to a panel in Oxford. Half of them thought MS was the likely diagnosis whereas the other half felt my ‘lesion’ was an abnormality in my blood vessels – merely superficial and not the cause of any of my symptoms. The possibility of ME or Chronic Fatigue Syndrome reared its head a few times but was then dismissed. My joints started to swell and become painful and again I was sent to a rheumatologist. He assessed my joints and suggested injections into the joint with cortisone for my shoulder and hip. He diagnosed bursitis but suspected an underlying Connective Tissue Disease such as Lupus or Sjogren’s Syndrome. I started to have problems with my stomach and gall bladder – extreme pain and bloating, burning sensations and the inability to eat without feeling sick. I had an inflamed gallbladder and some form of infection and had to be treated in hospital and then for a month at home with high dose antibiotics. There was no explanation for the symptoms and the source of infection was never found.

Every time I saw a neurologist he or she would want to repeat the same test over and over again. Everyone had their own opinion and by this point I was being treated for possible MS, Mixed Connective Tissue Disease and eventually Chronic Myofascial Pain Syndrome. All anyone would agree on was that there was some type of auto-immune disorder affecting all my connective tissues, my joints and my central nervous system. Some tests even showed a swelling in the brain and a build-up of pressure in spinal fluid (it was only when I had a lumbar puncture and fluid was released that my symptoms improved) but I still sit here today as something of a medical question mark.

This was taking a terrible toll on me mentally. I simply did not know how to manage this constantly changing situation. Once told I might not have MS I should have been happy, but I couldn’t be happy because I felt my security and certainty taken away from me. I was concerned that if it wasn’t MS was it something worse? I worried that I would lose my financial security because I was seriously struggling to work even part-time with my symptoms. I couldn’t claim benefits as a question mark and if the medical profession thought I could live a normal life why couldn’t I? I felt like a hypochondriac, a fraud and a parasite. I was cut off from my support network of other people with MS because I now wasn’t one of them. I wasn’t one of the well either because I still fell over on a regular basis, fell asleep at the drop of a hat, walked with a stick and generally looked anything but normal. I had nowhere to fit in. The brisk medical viewpoint left me with no option – if they couldn’t find what this was it must be nothing. I was obviously overreacting and needed to pull myself together or pull my socks up and do whatever other people in this situation did – I decided to get on with life. I tried and tried to be normal, but kept slipping back into the arms of my illness. If I’m truly honest I’d got comfy there. Also I worried that eventually it would show its teeth again, even worse than before, and would take me by surprise. I weaved in and out of my ‘disabled world’ and the ‘normal world’ like an addict who can’t give up their chosen drug. One minute I hated being ill and threw myself into beating it, overcoming it with sheer force of will. The next minute I couldn’t live without it. It was all or nothing; a relationship gone bad, but comfy as an old pair of slippers.

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.

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.

 

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!