The remarkable effect of having MS is that I can’t use my right hand to write and to feed myself; I am now totally dependent on other peoples’ hands and feet, to feed me, brush my teeth, to take me out for a cigarette and bring me in again. The carers in this home will organise the hoist to lift me up and put me into bed, and in the morning another team of carers will use the hoist to take me out of bed and sit me in my wheelchair.
I was originally asked to write about feeding and being fed but, actually I am also bringing in the fact that I can’t walk and, as a journalist, I can’t write.
It is really weird being fed; some people shovel the food into my mouth as fast as they can, as if they are aware of the twenty-two other people who need feeding, and not really picking up my vibes: different people do things differently. Many people keep a straw in my mouth in the hope that I will finish my drink as quickly as possible: of course it is up to me whether I suck in the hot chocolate or not! I find that being fed is an opportunity to stop thinking my thoughts and to spend my time with someone else. A few of the carers appreciate the enormous frustration I feel; it is a situation that is not of my choosing and I am totally in the hands of whoever comes to feed me. Attitudes towards cleaning my teeth also vary; much to my surprise, my key-worker, who has never done shopping for me, appears to love cleaning teeth, and does it very thoroughly; a lady carer is happy to be his deputy and will shop for whatever I need.
When I go out with friends or family and someone has to feed me, we are both aware that I have no choice in the matter. Once I went out with a friend and some other person paid our bill, which made me think that this man, who didn’t leave his name, understood how it must feel for me in my wheelchair, and for my friend who was feeding me.
It is four years since I left our family home for these four walls in the nursing home. My social worker and district nurse both told Adrian that he had done a fine job caring for me, and they suggested I move into a nursing home. I have decorated my room with pictures, so I can see all my children and my grandchildren in one area. I say the walls are the story of my life, including the large picture that my father made of black-and-white photos of his four children, as well as various other pictures and furniture from our family home in Falmouth Road; and now I have the painting of asparagus spears which Adrian gave me as a recognition of my invention of the “asparagus fest”.
I can use my mind to dictate this piece; I spend the afternoon and evening in my bed where I lie and think, and think…. I have a whiteboard on which Adrian puts up what I’m doing each day, and a second whiteboard which I call the “memory board” where I ask carers or friends to write down particular thoughts that I want to remember. I totally appreciate the commitment of my many friends who come and visit me: for most people it is once a week. On the downside, I have occasional days when no-one is coming, and then I will watch DVDs that I have been given, or sent by Lovefilm as organised by my older sister, Jessica.
Recently I went to lunch at Adrian’s new house. Our son, Jonathan, was staying there with his wife, Lori, and fifteen-month-old Alexia. We sat down for lunch, Alexia and her parents at one end of the table, and me and Adrian at the other end; while Alexia was being fed by her parents, I sat in my wheelchair being fed by Adrian. The story of the different ends of the table, I aged sixty-four having lived most of my life, and Alexia at the other end of the table with her whole life to live and all sorts of abilities to achieve, seemed poignant.
I described my illness as remarkable; I am touched and proud that my friends say I am remarkable. My being aware of myself, and the poignancy of Alexia and myself being helped at the ends of the long table, shows that I am able to see the realities of the remarkableness of my situation.
Mary Smith 18th February 2016