Alternative Joy

It is hard for me to put myself in the place of a carer but I have tried often when I have seen the pain in Adams eyes, as though just looking at me is causing him pain and the tears are just below the surface. I don’t remember what the conversation was the other evening that brought that look to him, but I knew at that second he was in more pain than I was and it started me thinking.

I have often said that I felt it was harder to watch what is happening to your loved one than it is to actually live it, and that really is the truth. It is hard to find the words to use so that I can express this totally so bare with me as I work this through. Over the last few years were I have had to learn to deal with loosing my old life and adapting to one locked in a body that has little resemblance or little of the abilities we all take for granted, I have found there is something inside me that has guided me through the whole process. I know totally that in this I can not talk for others but I feel I have seen it in others so maybe many of us feel this way. The step by step lose of my health, my mobility and my body have been equally stepped by a feeling of peace, acceptance and understanding, explaining that is harder than it sounds. If I had been told that I had to stay in the house for a week, lets say 15 years ago I would have been climbing the walls in a couple of days, pacing round the house staring out the windows and looking for an escape route. Yes I was a normal human easily aggravated and determined to have my life my way. My pain tolerance was no different from others and having a tooth ache, would have sent me running to a dentist, seeking relief. I wasn’t a quick tempered person so that hasn’t changed much, but I was easily frustrated if I couldn’t do something, as I was used to succeeding at most things I tried, failure to me wasn’t an option. So I was a normal standard human, so yes if the rug had been pulled out from under me as that point and I had woken to find my life as it is now, I am 100% sure I wouldn’t have been able to cope, I would have been angry and unable to deal with the pain and totally unaccepting of sitting here day in day out with no escape, but that wasn’t what happened.

The process has been slow and has taken me gently to where I am now, everyday has been a slow step, not seen by others. Everyday I have changed just a little more and I have adjusted, I have learned. Adam like any carer can’t see those tiny changes, those tiny steps that allow me to continue to the next one, after the next one. To someone outside my body they would still be seeing themselves taking a huge crash to where I am now. I never took that huge crash, the biggest was the days I heard the words but by the point of my diagnosis I already had started the path of adjusting. When you as a viewer hear the diagnosis you feel a pain that I never did, as inside I already knew, I already had made adjustments and changes.

As time moved on yes you as a carer watch the pain and the difficulties, but you don’t see the strange things that the human brain dose, you don’t see the gift that it gives to someone who has to live it. Where it starts or how it happens I am not sure but there is a peace that starts to grow, I didn’t go looking for it, it appeared by itself. It is almost as though we have an alternative setting that kicks in and it carries you through the pain, gives you the escape route of sleep, removes the hard edges of everything by removing them and locking your memory to forget. Pain is something you handle when it happens and then you move on, quickly forgetting the last bout and strangely not fearing the fact it will all happen again. Frustrations have become short lived and there again you learn to find other ways. As time has gone on there is a magical change, one that changes us inside, one that allows us to accept each new thing as it comes, but I know it is hard for others to understand how this can be the case, but it is. I am at peace in a way I have never known before and I have seen that in many elderly people and others who like me have a chronic illness. Yes there are the bad day, the horrid days, the times when suddenly it all explodes and the world feels like it is out of control, but every time it happens the peace returns.

I know it is hard to watch someone you love struggling day after day, but look in there eyes when they are sat still, do you see anguish, do you see pain all the time, no. Take away the difficult short spells each day, the spells when the spasms stop me in pain, take away the difficulties of walking to the kitchen or back, the exhaustion and the confusion, over all of it only part of my day, the rest, the rest is peaceful, the rest is still very much living and very much worth having. I truly believe it is harder to watch all those things than they are to live, trust me when I say that the over riding emotions that life has given me is one of peace and happiness, the other things well they are the difficulties of life, just in a different more personal way.

As I said at the start I can’t talk for everyone but I am sure you have seen what I have written here in others because I have and I really do believe it is all part of being ill that we find an alternative joy to life and a peace that until you feel it is hard to understand.