Rigmarole

The M.S doesn’t just steal movement and activities associated with movement, it interrupts other aspects of life: perception of time, language, private space/boundaries. There will be other illnesses that do exactly the same thing, but multiple sclerosis is the one I know about.

Perception of Time

My days are full of regular routines. I do the same thing, in the same way, in the same order, and probably the same time of day, every single day. The rigmarole I have to face before I go to bed this evening makes tomorrow seem a long way off. The rigmarole I have already endured today makes yesterday even further away. If I contacted you four to six weeks ago and you haven’t replied, it feels as if you have been silent for months even though in your busy life with family, holidays, travel and other occupations, very little time has passed. By now, I am at least 150 years old and when people suggest I might live another two or three, they are dooming me to another few centuries.

Language

In recent years I have been learning the dialect of disability. Unlike sign language, it does not have its own grammar and syntax, nor a particular pronunciation. Rather, it stretches the words of the mother tongue.

Thus, I say: “I stand up and walk across the room.” Now if walking means being upright and travelling from A to B, then yes, I walked. But if walking requires lifting one foot off the floor and bringing it forward, I did not walk. I stood up, turned around and slid backwards.

Then again, when you say you have cleaned your teeth, presumably, you mean you moved your arm so that the toothbrush traveled backwards and forwards against your teeth. What I mean is, that once the toothbrush is prepared and I have it in my mouth, I turn my head from side to side, so I move my teeth backwards and forwards across the toothbrush. This does produce the same effect but the words mean different things.

A friend who has to listen to talking books says she reads. I say I walk and I clean my teeth. We are using language out of habit and to be economical. To do otherwise would be pedantic.

The problem can also go the other way. I have said to a new carer: “If you go on doing it this way, you will make me spasm.” She retorts that she is not trying to make me spasm. In order to remove any suggestion of intentionality, I have to rephrase my remark: “Doing it this way will cause a spasm.” Spasms are vicious, like electric shocks and it is difficult to believe that my own body has become so inimical to me. Initially to my shame I was accusing my carers: “What did you do that for?” When I managed to hear what I was saying I could at least apologise. Spasms are an issue therefore, both for my use of language and the way the language is received.

Boundaries and Personal Space

My physical boundaries have been completely invaded. When I cannot dress myself, it would be foolish of me to complain about being dressed. But what I do complain about is people treading on my clothes, wiping sticky fingers on my face towel or touching the nozzle of my drink bottle. These seem legitimate causes of complaint. But lately I have noticed I am also protesting about the way people are removing my very fine hair from my eyes. My physical boundaries have obviously become even more sensitive.

But if they are sensitive, they are nothing in comparison with my psychological boundaries.
Because I am so encroached upon physically, my psychological boundaries go right to the edge of my tree-enclosed property. When you enter the gate, you enter my personal space. You are not given the chance to negotiate where in the room to position you chair so that you can maintain a certain individual distance. You are already trespassing.

To make it harder for you, there is also my much more conspicuous fragility. I have lost so much weight, it is harder to ignore. You have to decide whether to mention the weight loss or ignore it: if you ignore it, you have to decide what to do if I mention it. Are you willing to engage in a difficult conversation or do you think what is required of you is to cheer me up and distract me?

And to make matters worse, I write poetry. Poetry is condensed and cryptic and what is worse, it may well deal with personal feelings. It is a decidedly anti-social activity, which some people may prefer to ignore.

And then again, my hand, like Lear’s, “smells of mortality”. I am so compressed my oxygen intake is limited and so I have to live constantly with the knowledge that my own death could be imminent. As most of my friends are elderly, they also are facing their own mortality but may prefer not to dwell on it. But as another one of my traits is that I am very direct, you may find yourself partaking of a conversation which discusses what sandwich fillings are suitable for a funeral feast, or even whether it is appropriate to cut the crusts off the same sandwiches.

So when you come in the gate, even before you have rounded the flax, it is required of you that you take up a position relative to my directness, mortality, fragility and extended personal space. It is a very great challenge.

Multiple sclerosis has a lot to answer for.