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 21st 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.
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