Adam is on holiday today but I am still on my own. He has taken what I know is a much needed break for him and gone to see his Mum who live about 40 miles away. Because of the distance he doesn’t really see her that much, having said that, I have never known someone who once they have left the family home, who has spent so much time talking on the phone or texting each other. Our families are so different, mine is totally fragmented and if I speak to my Mother more than twice a year, I know something major has happened. I left the family when I was just 12 and I think without exaggeration I could sit here and count how many times I have seen any of them since I left Aberdeen when 16. As hard as I try I can’t get my head round the constant chatter between Adam, his mum and his sister, any more than Adam can understand that my family specialize in ignoring each other, although now aged 52 I still have the respect I was taught for my mother, but absolutely no desire to be anywhere near her. I have little to gauge it on but I guess we are the two ends of that spectrum and most families are somewhere in between.
I always laugh when doctors or medics ask me that constant question about do I have my family around to help me, I always answer yes as trying to explain that outside Adam and my daughter in London, there is no one to help in anyway at all. People seem to expect for some reason that just because you are ill the the world will rally round and take over everything that you can’t do. My experience and that of many others is the absolute opposite, the reality is that as your illness gets worse more and more people vanish from your life. For the last 3 years I have really seen only medics, Adams family a couple of times a year, Jake a couple more, I see no one. If you have been reading for a while although you may have been thinking it just wasn’t something I talked about, the truth is I now only have one that isn’t part of my miniature family. Medics excluded, I spend 360 days a year seeing no one else apart from Adam.
The other week Adam was talking to his boss and I came into the conversation, she suggested that it might be an idea if I applied for a carer, someone who would come in to see me a couple of times a week, just to help me during the day and to keep my company. Adam laughed and told her exactly what I would have done if I had been talking to her, it would be my idea of hell! I accept that one day I won’t have a choice, because I will need help with the simple personal care things I do for myself, but now I manage fine as I am and I really don’t want forced company. Because my ability to do things varies and I often just want to lie down and rest or sleep when I want to, having someone that I would have to stop writing or not have a sleep because they are here, would be a total pain. Especially a stranger as it take so much effort to make conversation with those who know nothing about you, which is also completely draining on the energy side. Now that I am settled into this way of life, not having to explain or not having to make excuses for the things my body does, I am extremely happy.
I don’t feel that I lack company, or that I am isolated, or any of the other tags that are attached to the housebound, by those who aren’t. You really have to live this life to understand, it just isn’t any of the things you think it will be. Like I said yesterday, your entire mindset changes and so do your requirements of the world to find happiness and your place within it. I often think that the able bodies world problem in understanding comes from our penal system. Those who break the law are locked away from the world, we put them in jail, remover their right to freedom and contact with all the things that we seem to think are required for happiness. To many I can see how my life may seem just like theirs, I am locked away from the world, I have no freedom in the greater meaning of that word, but that is where the difference is. I do have freedom, I can do what ever I want, when I want, I don’t need a carer/jailer, as that is how it would feel, to regiment my life as they would want it to be. Forcing me into doing things when they were here rather than when I want to, being given this person who may have for what they think are all the best reasons and to them are caring actions, would kill me quicker than MS is managing to do alone.
My front door will remain locked for as long as it is physically possible to all of them, let them imprison those happy to accept it, but I won’t accept it, as it isn’t helpful, it would just be painful.