Relationships

One of the hardest effects of MSA to take on board I have found is the way the disease changes perceptions.  It is a test for friends, family and professional colleagues because the physical changes over time are profound, but apart from that not much have changed, I still think I am the same person I have always been more or less.  Just because I have difficulty talking it doesn't mean I have nothing to contribute.  Just because I find it difficult to walk when I go for my hospital appointments I am put in a wheelchair and pushed.  On the work side of things I have seen and experienced the good and the bad.  My closest colleagues have been good by treating me in much the same as they always have yet making allowances especially over travel and number of meetings, using conference calls and Skype instead.  I experienced the bad when a consulting contract with a charitable organisation was coming to an end                     and I was in discussions with the chairman about renewal. I mentioned my health problem, not least because he had told me he had been diagnosed with Parkinsons and my contract was not renewed.  I think it is the ‘damaged goods’ syndrome, nobody wants ‘damaged goods’.

Often people don't know how to treat somebody like me and at times I feel like a stranger in my own land,  particularly in familiar social settings with people I have known on and off for years.  It seems that the physical manifestation of MSA dominates and shapes the way people react to me.  Generally, the reaction is to help with things like getting out of a chair because they can see that I am struggling. They don’t realise that it is important to do it myself as part of my fight against MSA, however long it takes and difficult it is for others to watch. Other examples have been, when I get on the Underground in London.  I always get a seat because I'm bent over even though I might not want one because I only have one or two stops to go.  On one occasion I was standing on Pall Mall about to hail a taxi, when a smart young man raced across the road to me and asked me where I was going and could he help!  He was very insistent I needed his help.  I managed to persuade him that I knew what I was doing, but who knows what his motives were. Feeling vulnerable seems to play its part too.  Again I was on the Underground on the platform at Kings Cross waiting for a train when suddenly I was pushed in the back by a young black man, who shouted ‘get out of my way old man’.  I was pretty scared because platforms are narrow on the Underground and my balance is not good.  More to the point I was upset about being called an old man!  After all I am only 63 and I don't feel like an old man, but the physical effects of MSA make me look much older than my years - bending over, saliva dribbling and continence problems.  This is a pretty bad example of behaviour, but I have been pushed and shoved so many times I have lost count when walking on pavements in cities and towns.  Everybody is in a hurry and I am a slow walker now.

I can see from my family’s point of view [see picture underneath without me I took the photo] that they have known me as a mountain walker with lots of energy, working hard and living a full life gradually turning into the opposite with an assurance that it will not get any better.  But I still feel I am me the person I have always been, trapped inside a body that is going wrong and there is very little I can do to stop it.  This changes the relationship dramatically from being an independent contributor to dependent.  This is hard for everybody involved and one of the ways of counteracting it I have found is to talk about it rather than bottling the frustration up - life is now too short to mess around!