How My Life Was Tripped Up By MS: Chapters 3 and 4, Adulthood and Living With MS

Following on from ‘Lundy Bay’ and ‘Childhood’:

I hope these descriptions show that I was a child with get-up-and-go, and this progressed later as I grew older, when in my early twenties, thirties and forties I became involved with various things.

My gusto showed itself when I had four children, whose interests were always paramount.

Our first child, Barnaby, was born in 1977. Two years later we had a second son, Henry, and he was followed by Jonathan and Oscar. People have often asked me did I want a girl. The answer is I am very proud of my sons, and now they are of a marrying age two of them are married, one with a son, one has a girlfriend and a son in tow, and the fourth has a girlfriend who is the youngest of four children! So they bring plenty of female company for me and talk which does not involve football…

Soon after Barnaby was born I became a National Childbirth Trust antenatal teacher which I did for some years in the evenings. I studied for it while Barnaby had his afternoon sleep.  During half-terms I sometimes went on writing courses with the Aarvon Foundation (which is where Wendy Cope was first discovered). One of the courses I went on was on poetry. I had never written poetry before but I came up with the following:

The Broken Record

Living with death leaves a shadow on life
It makes the light lighter and the dark brighter.
Life’s cycle is a balancing act whose wheels turn unguided.
Both beginning and end are a chance encounter
And yet no circle has a beginning, or an end.

The record can be cruelly smashed
Its circles jaggedly broken, the song stopped.
My song still sings yet the circle is not round
My mind goes round while sedately I sit being pushed around.

Whose life is like the wheels on the bus turning round and round?
More often the straining up hill brings laughter and tears,
Surprises and the unplanned for bring the shine to life
Even if the bright black record should suddenly break.

November 1997

When I read it to the other participants, they all clapped. The person running the course said this was a very rare occurrence. I went on to write more poems.

When Oscar was about two I read in the Independent newspaper that the Humanist Society was looking for more people to become officiants for them. I thought this was an interesting idea and so applied. A few days later I was rung by an officiant to say there was a funeral to be held in Truro two days later and as she couldn’t make it she wondered if I would go. She added that the difficult aspect of this funeral was that it was of a baby. With my experience as an antenatal teacher I did not feel so daunted. Two days later, having previously talked to the parents, I was able to do it. It was a very moving experience when the undertakers brought in the small white coffin but I felt able to speak to the parents and two grandparents who were there. We were all very moved by the whole experience and they all gave me a hug and a kiss when they left the crematorium.

I did a Humanist wedding on the cliffs near the Minack Theatre. Adrian drove me there and I wore a brown cord cloak. I led the bride and her father to the spot where the groom was. It was a magnificent sight. The bride was a photographer from London and the groom was an attractive pirate from Penzance. People were very complimentary about how I conducted the wedding and we all went for a lunch afterwards. People found it hard to believe this was my first wedding.

Later as a Humanist officiant I found funerals easier than weddings to hold; maybe that is because I did more funerals.

Somehow I also found time to study a course which led to a diploma in human relations and counselling skills. This was a Jungian based course which I found interesting coming from a strictly Freudian background. What I learned from the diploma contributed to all the other interests I fitted in – the antenatal work, the Humanist activities, and my writing.

A few years after the LundyBay incident, I again fell, this time on the pavement while trying to run after Oscar. I severely hurt my fingers. I went to my GP who suggested I went to Bridgewater for an MRI scan. This was a relatively new procedure but I was told that I had MS. My father said he had been told not to tell me by other doctors and so when we got married, he couldn’t tell Adrian as he didn’t want to plant a secret between us.

Learning to Live with MS

I had learnt to cope with the fact that I wasn’t told for many years that I had MS, which may show a philosophy of acceptance in my character. It certainly angered Adrian’s parents that he was not told. George, Adrian’s father, wrote an angry letter to my father, who was very upset by it. After a few years my father-in-law wrote a conciliatory letter to my father which pleased my Dad, and then the in-laws joined us again on holidays with my family.

My gradually progressing MS cut short many of the activities I enjoyed. Luckily I have a group of loyal supporters and friends who are prepared to take my dictation when I want to write articles or letters or emails to people. I am often published in the local MS newsletter.

As part of my get-up-and-go-ness I used to drive our car. Soon I bought a car which had automatic gears and the mobility centre gave me an accelerator and brakes that I could work with my hands. I would drive around with the wheelchair in the boot of the car. Once, when I was in the countryside, taking Jonathan to his girlfriend’s house, I realised that if I ran out of petrol I had no way of getting some. My arms were also getting weak so I could not turn the wheel without help. My husband and sons pointed out that I shouldn’t be driving any more. I enjoyed the freedom it gave me but I was relieved when I gave driving up. Now we have a car that I am not insured to drive.

Having MS has meant accepting all sorts of situations. For many years I could not face the fact that I was disabled. Denial of the realities is a way of dealing with them.

When I became wheelchair-bound I felt very envious of people who had been swimming, so I came up with a plan that, with the help of two strong men and someone to look after the wheelchair, I would go down to the beach at Daymer Bay in my swimming costume and then the men would carry me out of the chair and into the sea.  I could swim using my arms and Adrian always stayed near me.

Swimming at Daymer Bay

Close to our house in Truro was a swimming pool with a hoist and a changing room for the disabled, so on Sundays Adrian and I often went swimming; on other days I sometimes went with carers; swimming involved an able-bodied person lifting me out of the wheelchair and into a hoist chair, then they got in the water and the swimming pool staff worked the hoist which lifted me up and then lowered me into the water. I didn’t like adults staring at me but children inevitably did so I used to wave to them and they waved back. I swam backwards using my arms with Adrian or a carer going ahead. I did a number of lengths and then Adrian or the carer would signal to the pool staff to lower in the hoist chair and he would sit me on that and they hoisted me out of the water. After the swim I felt much more energised.

During my forties and fifties my MS had progressed so that I could not move my feet or legs, and my hands and arms won’t necessarily do what I want them to. This made cuddling Adrian both in bed or out of it very difficult. I can no longer have sex and this has caused both of us great frustration. It did not surprise me when Adrian told me he had joined a national newspaper’s soulmate scheme and two weeks later he said he had found a soulmate called Kim. He didn’t tell me much about her except that they emailed each other and sometimes talked on the phone. During my respite periods of about a week he would go and visit Kim in her own home. He met her two grown-up daughters and some of her friends. Kim is the same age as me, our birthdays being about a week apart and we are both quite eccentric people though intelligent. (Kim is not a blonde bimbo!) I suppose really we are well-balanced, both of us being able to live in this strange relationship. Adrian also told me that she was married to a Cambridge University don who sounded cold and uncaring, much the opposite of Adrian; a few weeks later Kim became fully separated from him.

After each respite break I found Adrian much more content so I always felt that Kim was a bonus to my life. Kim never seemed to try and come between me and Adrian so when the boys inevitably asked what I felt about this situation I was able to say that I felt that Kim was a positive addition to our life.

At first I had not wanted to meet Kim but a year or two on I realised I would like to meet her, putting a face to the name and giving her the opportunity to do the same. When we first met at my nursing home Adrian was present but we immediately seemed to get on. The next day I rang Adrian and asked him to bring Kim in again. That time I told her when I had interviewed people to be my carers I asked them to be my hands and feet as they were no longer working. Now I realise that Kim went for walks with Adrian, went bird-watching and took him to concerts and films, none of which I can do. As he put it, she cared for him. Kim is very sensitive and is clear she cannot replace me and does not want to.

Hearing about how Kim and I managed to get on so well, my friend Simon exclaimed “If you read that in a book you wouldn’t believe it!” You have read it and it is true.

As I cannot walk or stand now it is a relief to me that all three of my older sons remember me playing tennis in my early forties although my youngest son, Oscar, aged twenty five, says that he cannot remember me walking. For many years I used to push a pram or pushchair; I remember thinking that when my youngest son didn’t need his pushchair any more I might find walking a problem. In fact I tripped over a number of times and then used a walking stick which later had to become two walking sticks before I needed a wheelchair. For a while my husband helped me to stand in a standing frame but it became too difficult for him to get me out of the wheelchair and into a standing position. Now I rely on physiotherapists and carers to bend my legs and massage them to keep the blood flowing and the muscles and tendons in working order. I also do exercises with my left arm and my shoulders and parts of my face to maintain what control I have. Luckily my brain is still working, I can talk and swallow, see and hear.

I have also been able to develop my own eccentric artistic genre by having one carer who decorates my finger- and toe-nails. I asked her to write on my toe-nails “Hello Felix” and “Hello Rory” when my grandsons were born. Being a grandmother is a mixed blessing for me as I can’t get on the floor with Rory, aged nearly eighteen months, and Felix, who is nearly fourteen months old. (This statement begs many questions as Rory has a number of problems because he was born prematurely. Felix is a lively, alert, young chap. They both should have been born in April 2011. Our hearts go out to Sally and Henry, Rory’s parents, and if they lived closer to us we would have been more involved and able to help).

toes rory

toes felix

When Henry and Sally got married I had their names written on my finger-nails. One year I decorated a Christmas card with my toe-nails saying “Happy Xmas”.

toes christmas

Many friends and relations who were sent this card felt the need to respond so wrote or rang to comment on it, and a number of friends have told me they still keep this unique Christmas card!  I am hoping for more five-letter named grandchildren in the not-too-distant future!

I did not want to have a large sixtieth birthday party and I decided to invite two of my oldest friends called Jonny, who lived next door, and Alice, who lived round the corner from us, and who both knew each other. We had an amusing ramble about our memories.

On the actual day, in October 2011, that I was sixty my four sons were with me and I told them whatever happens I did not wish to end up in a nursing home. Two months later Adrian had reached the end of his tether and we were advised by our district nurse and a social worker that he had done more than his fair share of looking after me and I should apply to go into a nursing home. In February 2012 a room was available at a Truro nursing home which was considered to be the best in Truro so we took the place. Now Adrian lives on his own in a large house and I live in this nursing home. Though he often visits me we both are finding it very hard living apart.

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One Response to How My Life Was Tripped Up By MS: Chapters 3 and 4, Adulthood and Living With MS

  1. Charles Butchart says:

    Thanks for your latest blog, Mary. It is a wonderfully positive and honest piece – I can’t think of anybody not being helped by reading it, whatever their circumstances. Well done. Love, Charles

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