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