I heard a line on TV the other day, “hope is a tease, only there to protect us from accepting reality”, I had never heard it before so it had an impact on me that I didn’t realise at the time. I guess the fact that I actually remember it says something about that in itself, I don’t remember much that happens on TV, even storylines evade me and don’t even bother asking me the names of the characters in even my favourite programs, as I don’t remember any. It was the fact that hope life positive word that I had never heard any argument against that made it stick in my mind and made me wonder just how I really felt about it. To me having hope isn’t about accepting reality or not, it is that strange little thought that runs around in my head from time to time, but it isn’t hope of a cure that I hold on to, it is the hope of things not getting any worse. I have spoken many times about having to accept your illness as then you can get on with living with it and I still hold onto that as one of those ultimate truths, but like everything else acceptance has it grades.
We have no choice once there isn’t just a diagnosis but clear signs that they have it totally right, as that is your first hope, that just maybe, maybe they haven’t got it totally right. I knew what PRMS meant, but I also knew how hard it is for them to be able to pinpoint which sort of MS you have as they normally need a clear history and wait until they can see for themselves just what is happening before they put the final label on you, in my case they had me medical notes for the previous 10 years and what I told them about my health prior to that, so for them to tell me categorically that I had PRMS, well it held the hope for me that they were mistaken and time would show that, it didn’t. My first hope dashed, well next was that the I might be lucky at least with the speed that it moved, not that I really knew how fast it possibly could move and I still don’t, so that was a blind hope to say the least. Blind or not, I kept holding on to it and I kept hoping, even when I land up unable to eat, then virtually unable to walk, in fact, even now I still hold onto it. When no one can say to you this is the path that your illness will take, there has to be hope, as there are so many different things that could possibly happen that you look at the list and you instinctively can’t stop yourself looking down it selecting out the ones that you really don’t want to happen to you. It is like the opposite of a child standing in a sweet shop, you are looking at things so far from normal life and so horrific is the idea that any of them can happen to you, that you don’t pick the ones you want, you pick the ones that you don’t think you could bear and hope they will never happen. What I didn’t know then was that the list I was looking at was just the tip of the iceberg, the full list was and still is nowhere that I can find, but everything that happens to me, in agreement with the Neurologist and others with the condition, is out down to my PRMS.
Most conditions have their good and bad days, good days, well they speak for themselves, but the bad are the ones that make you wish for any relief and fill you with a desire to find relief and to just be in peace. No matter how dark those bad days get, there is one thing that you can’t help holding onto and that is the memory of the good ones and the hope that when you wake the next day, it will be a good day. The reality is you can’t change whether or not a day will be good or bad, but that is probably when hope means the most, as it is the thing that keeps you going and makes you push through those bad days, even when they roll into weeks, there is still hope that there will be more good days. There is one joy of PRMS that no one tells you about and that is just like RRMS after a relapse what has happened during it can improve, not go back to where it was, but it can improve enough for life to settle back into a more or less normality. For me the best example of that was my left hand, it totally died 8 yrs ago and now well other than the fact it isn’t as strong as it was and causes a lot of pain, it is almost as functional as it was before. If there is one thing that gives you hope, is the fact that you can improve and that has become my root to hope ever since. I know thought that that hope is time capped, nerves can regenerate to some extent, mostly they bypass where they went wrong and form new pathways, but your body can fix things that appear unfixable on the surface. Unfortunately, it has been the only thing that has healed, but even once is enough to make hope a reality all of its own.
I can see why someone might think of hope as a “tease”, but to actually believe that to me makes them the biggest pessimist on the planet. It sounds like a deep and thought out statement, something that might make people see them as intelligent or one of the philosophers of life, I would say that it actually just makes them a pessimist, take away hope and you are taking away one of the fundamental tools in our very limited toolbox that lets us live as well as we can for as long as we can. Clearly I am one of life’s optimist, but it is far more than that, I actually believe that to survive and keep surviving you have to hold on to something, even if it is something that can be argued against. Hope doesn’t stop us seeing reality, it allows us to accept it at the pace we are ready to and for one, well if that is all it does, it is extremely important. Reality isn’t that hard to accept at all, I have done it at every step along the way, accepting and readjusting as and when needed, hope is like a wonderful warm blanket that caresses us until we next have to adjust again.
Read my blog from 2 years ago today – 21/03/13 – Parallel situations > http://bit.ly/XrThLF
I am in a sort of not really bothered to do anything today, mind you many would say I don’t do anything any day. I guess on some levels that is right and even I know that. There is always a danger of that feeling settling in for anyone who has lost their job, but if there are other reason to compound your ability to find new employment, life becomes much, much harder. Employment isn’t just about money……..