It appears that although my fall the other day didn’t hurt me, it’s spin off did more damage than just break my crystal bowl. Adam is once again to be worrying about the “what if….?”, or “what might……?”, and any and every “But……” you can think of. It has even gone as far as him asking me when I was about to climb into bed on Tuesday, “How am I going to be able to go to work if you are going to be falling like that?”. One of the things that I thought was going to be curbed by my taking to wheels was Adam’s worrying about me. One silly little fall, in which I didn’t even receive a single bruise or the tiniest scratch, and we are right back at square one. What is so annoying, is if that silly little bowl hadn’t been broken, not only would he not know that it even happened, neither would anyone else. That is how minor and irrelevant it was, it was totally unnoteworthy.
One of the hardest things about living with chronic illness is not what it does to us, but what it does to those who love and care about us. Every day that we are ill, they suffer too, and at times, I think they actually suffer more. Not having ever been on the other side of this situation, the only thing that I can compare it to, is the love and caring that I had for my children when they were small. I can remember the feeling of sitting there beside them, so tiny and ill. Sitting there looking at them, stroking them, and feeling totally useless, as there was never anything that I could do. When my son was dying, I held him in my arms looking at this beautiful sleeping child and wanting to switch places with him. There was nothing anyone could do, and knowing that, just made all even harder. It has to be the point in my life where I felt the most useless and powerless of all. I may not be dying right at this second, but I can only imagine that daily, in a lesser way, that is what Adam goes through. For a long time, I thought that the fact that I could tell him, and that he could see, that I was fine, then he had to believe and really see it. He doesn’t do either. In his head, it appears that whatever I say, he decides for himself, what is actually happening. He has somehow decided that he is responsible for everything I do, and everything that happens to me, whether he is here or not. That it is somehow, his responsibility to protect me from an illness that no one can cure. I recognise that sort of madness, I recognise it because it’s called love and yes, it is adorable of him, but it isn’t required.
Love is like that, it is not only the most wonderful feeling that we can ever know, it also often, at the very same moment, the most painful and the most destructive feeling, we will ever know. Emotional connection and commitment are unbelievably difficult to control, in any way, even by ourselves. The chance of my being able to control someone else’s love is zero. Yet, it appears, that is the only possible way there is of putting his mind at rest. What more can I do than what I already do? I have shown him over and over that I am capable of caring for myself unless something unexpected happens. Which actually makes me identical, to every other living person on this planet. Just as you could fall today. I might not, it’s the luck of the draw and that is a reality that we all share, ill or not. But still, he thinks that he has to be here to stop things happening to me. Oddly, it has become worse in the last couple of weeks. It is as though my wheelchair has somehow woken him up again to the fact that I am disabled.
At weekends, if he was up before 11 am, I was sure, that there was pig flying over our house. The last couple of weekends, he has been up and about at the same time as me. He doesn’t fill up the bottles with coke and put them in the fridge, as he does during the week. no, he has been running back and forwards to fetch each glass as I need it, keeping me sat here, unmoving and unable to land up in any sort of accident. I haven’t said anything, what would be the point. He is going to behave like this until he manages to get the biggest thing that is missing from his brain in there. I am less likely to have an accident now, than I was a month ago, as now, I am sat down. When I do stand, the maximum steps that I take without sitting again, is 5. Five steps, where I am always totally surrounded by solid walls or furniture, which I can hold on to. It is all so back to front that I am at a total loss.
The most stupid part of all of this is a fact that I am sure he isn’t even aware of. The more I watch him worry, the more I see him scurrying around me as though I am made of porcelain, the more I worry about him. I know, because I always hear him, that he sleeps with one ear open and should I wake, he wakes. I know it is his nature to have a lazy streak, but here he is living totally out of his normal. Pushing himself every minute of the day and night, to be there in case I need him. I know that worrying isn’t good for anyone, especially when they do nothing else. Right now, he is doing absolutely nothing else. Instead of him now seeing what I see, someone who was pushing her luck daily, now safe and out of danger. My wheelchair has been like some kind of fluorescent reminder of just how ill I am. Granted, all the new meds will have brought that home to him as well, but he can’t stay like this, it isn’t good for him or me. Last night, he even apologised to me for the fact that for some reason beyond both of us, our oven wouldn’t light. It’s not his fault, what was he apologising for? That is a question that I do know the answer to, he apologised because he wasn’t able to make my world perfect. Sorry sweetheart, you can’t do that, my health has seen to that, not you.
The longer I am ill, the more I see just what my health is doing to him and that to me isn’t just wrong, it’s unfair. I tried so hard when I was diagnosed not to once say things like “I can’t cope, because of my health”. I don’t think that I can remember even asking for his help, until not long before my arm died and I became housebound. I didn’t do that because I was being strong or pig-headed, I did it as I saw no reason for his life to change, until it totally had to. I knew the day would come when his care would be needed, his freedom to be himself, to me was more important then, than my health. It was going to do whatever it wanted, so every day of normality for both of us had to be held onto, and enjoyed. To me, we are still less than half way there. Yes, he has to do a lot that I can’t, but I am still capable of being independent and I believe for the sake of both of us, that is how I should be. I don’t know how other people manage their health as in its impact on their partners, but I still see him as 100% that, my partner. He isn’t my servant to order around, and I hope I never ever do that, even by accident. He is slowly becoming my carer, but nowhere near the point yet, where he is my nurse. It is a relationship that is fluid and has to be, but it is also a relationship that is formed from love, and must never be seen as a duty, by either of us.
When you marry, you never look forward into your life together and see anything like the marriage we now have. We’ve only been married for 16 years, 14 of them has been spent with the monster of PRMS hanging over us. So in some ways, the time that most couples get to spend cementing their relationship has been spent with this added angle. For me, there is always going to be an unavoidable guilt, the guilt that told him once to go, as it simply wasn’t fair on him. Adam was just 21 when we married and I didn’t want him to look back and resent me. I doubt there is a relationship out there in our position, that hasn’t gone through all of these stages. Couples, who have worried equally about each other and wished the other could see it from their side. From what I have read, those who make it as far as we have, well they all have different ways of dealing with things, which isn’t really helpful. The truth is that relationship analysis is rarely of use, as no two couples, far less two people are totally the same. Love they say is blind, it has to be to survive the cruelty that life demands that it endures and still stay there strong and forgiving. If there is one thing that love and all emotions have in common, is they are anything but logical. On that basis, I don’t stand much of a chance changing his worry into settled and content, as all I have to fight it with is logic. I don’t have the answer, to stopping him from worrying about me every second of his life. If you do, please tell me, but I expect that the truth is, it’s just the way it’s always going to be, but hopefully, he will settle down just a little, soon.
Please read my blog from 2 years ago today – 01/10/2013 – Nature or nurture
It’s going to be a mixed up week and I know that already, simply because Adam was off work yesterday, with him working for the local hospital he gets the local holidays, I can’t even keep up with the….