Using a stick (a cane, if you are American) outside for the first time is one of the harder transitions for someone with multiple sclerosis. There is a long period between needing a stick and actually buying one or accepting one from the physiotherapist or OT (occupational therapist); a new stick may lie hidden for a long time before being allowed out. Over a period of time we can get used to anything. There is a period, probably within the first two years, when people say they are fine about using it in familiar places, or in places where they know nobody; what they cannot bear is the idea of meeting an old friend or acquaintance who did not know about their MS.
This makes sense. Someone who knew you a long time ago has an image of you in their mind which clearly has to be updated every time you meet. Like ancient aunts who always comment on how tall children have grown: we have to process such changes, and they have meaning: for the old aunt, the meaning is about the passing of time, perhaps feelings, both good and bad, about being replaced in the world by a new generation. There seems to be a need to express this shock – even though we know the children may be scathing about it, just as we might have been when we were young. Did she think we’d have got smaller?
When we see an old school friend who has changed dramatically we have to process a complex set of feelings. There is always a shock when the world fails to meet expectations. This shock flits across the face. It includes a NO!! of some kind; a fending off of an unwanted reality: this is my friend and there is something wrong with them! We do not want the world to change; we certainly do not want it to change in a way we had not predicted, did not expect. People may raise their hands to ward off the view, both in the external world and in their minds.
As the person with MS, seeing this reaction to our physical appearance, we automatically recoil. It is painful to be seen as someone who has (or is) ‘something wrong’. If we were not expecting it we too may be thrown off balance – and if we need a stick, being thrown off balance mentally can threaten physical stability too. We may want to run as fast as possible in the other direction – and we cannot run. This is truly the stuff of nightmares. We are stuck in the middle of a devastating social encounter, having brought horror to the face of another person, unable to do anything about it except brave it out, suddenly brought up short with awareness of our own physical deficiencies; we cannot run and we cannot hide, just when we really need to do both.
Without a stick, we could hide; we could decide whether we want to tell this person about our MS or not; with it, our options are limited. We can lie or we can tell the truth – but how much of the truth, and what is the truth anyway? Telling someone you have MS is no easy business, and it changes from day to day.
The other person’s shock and horror also evokes the feelings which are aroused when the reality of MS first hit us ourselves. We identify with each other; the other person’s shock brings our own to the surface. There may well have been a moment for when we too felt such a NO!: when we were given the diagnosis perhaps; or when we had to tell our mother, our partner; or when a particular symptom could not be hidden for the first time. Or perhaps in bed at night alone and frightened about an uncertain future which was suddenly not taking the path it was supposed to take. When awareness breaks through denial, at first it feels much worse than reality; the diagnosis which is denied or minimised – ‘it’s nothing, I can forget about it’ – can hide a monstrous set of feelings – I’m going to be a cripple, no-one will love me, my life is ruined, I’ve lost everything, everything is wrong!!’. Over time it becomes clear what MS does and does not cause; friends stay, family adjusts in one way or another; the trials of living with MS are real, (illness makes people feel bad, in every (British) meaning of the word), but they are not horrific in the way it may have felt at first.
Encountering the other person’s shock can bring back for a moment the nightmares, the terrors of first discovering that you have MS. It threatens the often precarious balance which has been established in your own mind: it is OK to have MS, I can manage it – while being afraid that the terrors are lurking underneath, ready to pounce.
It is no wonder people are slow to take their stick outside, to brave a world which may not yet know ‘there is something wrong with me’.
However, once these encounters have taken place, they are over. The first shock, the first working through of old feelings has begun. The next meeting will not have the same capacity to knock someone off their feet. A new stage of acquaintanceship will have begun – and it is even possible that the stick might open up a conversation which is good to have.