It doesn’t matter how much they love us, or we love them, it is inevitable that at some point in any relationships, one or both will do something to hurt the feelings or the other. Add in chronic illness and it’s not only inevitable, it is unavoidable. There could be loads of reasons as to why this happens, but what matters the most is that it’s dealt with and we all move on. The reason that I have heard the most puts the onus on us, the ones who are ill, as we are supposed to become more emotionally sensitive, to the actions of other. Although there may be some truth in this, and undoubtedly, when you are in increased pain, things are said that probably shouldn’t be, just ask anyone who has had a baby about that one, but I think it actually goes a lot deeper, and mainly in the opposite direction. There is one undoubted fact, people in general, don’t know how to act around or interact with, those who are chronically ill or those who are disabled. For some reason, that I can’t put my finger on, other than a total lack of understanding or applied thought, they feel they have to act differently and totally miss the most important fact, we are still people, the people we have always been.
Adam and I have only been together for 2 years longer than I have been diagnosed with PRMS. In the 14 years since then, I am sure that almost daily we have annoyed each other almost equally, but clearly, I this post isn’t about who is hogging the remote control today. When you suddenly become ill in the eyes of others, which is what happens the second that you get a diagnosis, it subtly changes ever single conversation or act, from that second on. Most of it is well-intentioned and often quite sweet and helpful, but occasionally, it makes you want to scream. Normally, when you actually do, they are totally lost and look at you as though you have fallen off the Christmas tree, as they have no idea what the problem is, or there even was one. Which is exactly what happened the other evening just after, we had been to the kitchen to sort out my night time meds. For over a year now, Adam has now been responsible for all my meds. I have made so many mistakes, that I asked for his help, so I didn’t spend another night crying and unable to work out why I was in so much pain, simply because I had muddled up my meds yet again. Eight o’clock arrived and he jumped up picking up his boots that would have otherwise blocked me from getting to the door in my wheelchair. He danced around the living room shifting other things, that didn’t need touching, then he did this odd little body swerving act at speed so that he, could get to the kitchen first. Funnily enough, I can switch lights on and get into the room without out him preparing the whole journey for me. As I was entering the kitchen, he once more jumped out of what he thought was my way, then he did this odd act with the bottle of coke he was holding, as he thought that somehow he was once again in my way. The whole thing meant that I landed up running into the kitchen cabinet, which if he had just acted towards my presence as he would have done when I was on my feet, wouldn’t have happened. He has been doing this odd behaviour ever since I have been back in my wheelchair, and it annoys the hell out of me.
No matter how well intended these odd actions are, they came across to me, as highly patronising, rather than helpful. In fact, his desperation to help had once again made my life harder. His distracting behaviour meant I didn’t pay full attention to the line I was taking to enter the kitchen. Catching my wheels on the cabinet, meant I was caught and getting free, took ten times as much effort, than my normal gliding entrance would have. I know perfectly well that they aren’t intended that way, but that evening was the final straw and I simply had to tell him how I felt and ask him to stop it. I waited for a few minutes after we had returned to the living room, then made sure that I was relaxed and that my voice wasn’t going to come across in any other way than what it was, a genuine plea from the heart. Just as I expected, he wasn’t really aware of what he was doing, and especially not, of how it came across. He thought that he was just being helpful, trying to make my life easier as is his way.
Throughout nearly all the time I have been ill, it doesn’t matter whether you know the person, or if they are a total stranger, they all forget the most obvious thing, we are still capable people most of the time. Yes, if we are clearly in increased pain, or struggling, then help is more than appreciated. But when we are our “normal” selfs, the people who manage all day long, without someone dancing around in front of us preparing the ground we are about to travel on, all that is needed, is to treat us as humans. Our health may have stolen nearly everything from us, but that is the one thing it hasn’t touched, yet.
For some reason, once we are visibly ill, the world suddenly treats us totally differently. For many of us, it is the day that pick up a walking stick, that we first see the change in others. Suddenly they do nice things, things they wouldn’t have done for us before, like offering us a seat on the bus. Don’t get me wrong, that seat is truly appreciated, but they also start doing odd things, things that don’t quite make sense, other than we are no longer, quite human. Doors and chairs, I get, but light switches, moving furniture that’s not even in our way, doing things we are more than capable of doing without assistance, they may be thoughtful and nice, but day after day, week after week, we are slowly disabled by others. I felt exactly the same thing happening at work as I have at times with Adam, I have felt it when I was out on my own or even when others, people overcompensate. Our bodies are already making us slowly disabled, but it is people, who disable us even further and faster. All it takes is a quick question, “Do you need help with that?”. Some do ask, and I almost bet, they are the ones who have lived with a disabled person, or watched a grandparent, slowly go down hill. They are the people who understand that our independence isn’t just required, it’s vital.
When I spoke to Adam, I asked him quite simply, “Would you have done that if I were on my feet?”, his answer was, “No, I guess I wouldn’t.” Since when, I have been human again. For all of us, the time will come when every second of care will not just be nice, but needed, but our independence is vital, even if that independence is simply turning on a light by ourselves. I don’t think that wanting to be treated as a person, means that we are emotionally sensitive. If someone does explode or throw you a scowl when you rush across a room to open a door for them, put yourself in on their wheels, and think what your actions might have looked like to them. Oh and next time, just ask.
Please read my blog from 2 years ago today – 13/12/2013 – Image destroyer