There are so many things in life that we all make plans to achieve or attain, things that are often unspoken but are expected will happen, we find partners and our own homes, we work and earn money to afford our chosen life style, yet none are constant topics of conversation we are all aware of there existence. Within these expectations there are universal ones, ones that are there for us before we are born, we walk, we talk, we learn and we grew. As we grew we moved to the higher expectations and I suppose a good example is that of children. Our parent never sat down and decided to become grandparents as their primary goal, they simply wanted to be parents, but without it being said, we were born with the expectation that we would one day also be parents. Universal expectations cover so much of our lives and they are the ones that no matter how far back in human history we look, they are there.
These expectation are a good start for anyone to build their lives around but there is absolutely no reason to hold to them, should we choose not to. I, like many, without great conversations and extensive thought, followed and fulfilled those expectations, looking back I am amazed at how little thought really went into any of them. MS has made me realise just how much we take for granted, we act on enormous decisions, as though we had picking the answer by spinning a coin. I find that I now put more thought into standing up and moving, than I remember taking on how or where my baby would be born, I did what everyone did, no thought, just follow, I can’t do that any longer. Standing is a process that needs planning, why am I needing to stand, where am I actually going and what am I going to do there, is there more than one thing I can do at the same time, and do I have to actually stand at all, is the purpose of my movement a good use of my limited energy, is there a way to group things that need doing, into one session on my feet. I plan how to place my hands to aid my lifting myself to my feet, I place my feet in a position that should cause the least pain, then stand, steady myself for a second before taking that first step. My universal expectations no longer exist as they do for most my age, they stopped and where replaced with daily or even hourly expectations.
There is so much that has to be considered and analysed in just the simplest of actions, I no longer can do anything without thought, but because I have now been doing it so long is has become a habit. The calculations sometimes go wrong and occasionally I find myself standing in the hall in pain and unsure as to the action that I should do next. My body will be screaming stop don’t move, but I will be needing the toilet and to fill my glass with coke. Returning to my seat now could be worse than pushing on, sitting down now would mean having to stand again and complete what is needed. The choice is a hard one.
A progressive illness is filled with choices that others would never actually think about, and the word progressive is the clue to reason. Today I have my action plan for doing something and that plan works, tomorrow it may not and the process will have to be thought through and change. Everything in my life is in the now, as 10 minutes from now it will have changed. This level of thought applies to everything, what height my plate must be so I can move the food to my mouth and not drop it, how I get in or out of bed, it goes on and on and the changes continue to go on and on.
Free will and free thought are wonderful concepts, but an illness can remove both at the existence level first, and the levels of restriction rises as the illness progresses. I know there is a point when both will be a distant memory, if there are any memories at all and strangely as I move towards this I become less scared of it. I used to think it would be terrifying, but as I loose bits, and occasionally find them again, the fear has lessened and the acceptance has increased, just as the contentment to accept has.