You would think once you have an illness like MS your time would be spent mainly trying to keep yourself as well as possible and learning how to handle all the different symptoms, that would be a logical course of action, but life isn’t logical. I touched on this yesterday when I mentioned the standard reaction from others when you fall in a public place, but that isn’t the only reaction that makes it just that bit harder to handle. Once I had gotten over the initial shock and grieving process I decided to get on with living, my MS is progressive and the change in pace was the reason that the medic eventually realised exactly what was wrong. It is only in the past 5 years that I have become housebound and my path here was very mixed, with periods of good and bad health, but I was very aware at times of the way others reacted to and treated me.
At first when I could still walk, I was given a walking stick which I was really pleased about once I got past that initial denial of needing it, but as I said yesterday, people on the whole became more helpful, as with everything in life there were those who had the opposite reaction. My dexterity has been bad for a long time so doing things like paying for shopping, carrying things and still using the stick at the same time clearly had problems. I lost count of the number of exasperated sighs I heard from people behind me in a queue, as I tried to get change out of my purse and not loose my stick while doing so. Frequently the volume would increase if I dropped my stick and those responsible for their impatience, never thought of picking it up for me, they just tutted and watched as I tried to retrieve it without falling over myself. On only one occasion do I remember someone coming to my assistance whilst giving the tutter a lecture on manners, which didn’t go down well, as they left the shop they announced that if I couldn’t manage on my own I shouldn’t be out on my own.
As my walking got worse, we managed to convince the NHS to give me a wheelchair but they would only give me one that I needed someone to push me in, I thought it would mean that Adam and I could go out together. At first it seemed like a great object, not pretty but useful, my relationship with it was short lived. I had heard tales of people sitting in chairs being ignoring and others only speaking to the person pushing it, well the stories are true. I tried hard to make myself seen and acknowledged but speaking only cause more problems, my stuttering and word lose only compounded the impression I was completely useless. I found the whole experience degrading and soon saw it only as something to be used in an emergency.
When eventually I did get my freedom of a manual chair, the majority of people at last saw me again as a person, but I could still be ignored and tutted at. Although my freedom was limited by a world built for able bodied people I managed quite well. I occasionally would get stuck, I mean really stuck and as hard as I tried there would be no way round the situation. I then again became invisible. Surprisingly many people would walk past, on the odd occasion I tried to ask for help I found that I was still invisible until eventually someone would hear my call and then more than one would hear and come to my assistance.
It may sound as though I am painting a picture of a world you don’t know, believe me I am not. There are many many wonderful, patient and helpful people but then there is a small section of society who have no understanding and no knowledge of their effect on those who aren’t blessed with perfect health and perfect bodies. If I wasn’t a bolshie determined person I would have retreated into my home and my own world long before I had to. I fear that there are at this second, many people who have cut themselves off, simply because dealing with these people makes life harder than it already is. I would love to take them put them in a wheelchair with their legs strapped to stop them getting out, a brace in their mouths so it would be difficult to speak, then dump them in a city center all by themselves and see how they get on.