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.