Filling the hours with love

It is going to be a strange day today as Adam is just getting ready to go out for the day, but I doubt he will be back until well after I have gone to bed. With it being Mothers day he and his sister are going to spend the day with their Mum who lives a hours bus journey away. I can’t remember the last time I spent a whole evening alone, it is going to be a bit strange I expect. Being left out of things is clearly one of those things that happens when you are housebound, life does go on without you. I know for some people that can be really hard, but you can’t expect everything to end just because you can’t join in, and every family gathering can’t be held here either. To be really honest that would drive me mad, the hassle of having people in the house for an extended length of time, is exhausting and you really can’t just vanish to bed, even if you do, well you can still hear them all. For me Adam going off and spending time with his family is the easiest and most MS friendly option.

You do strangely get used to your own company, I suppose I had advanced training in that one, having been a Navy wife, well I was used to having months at a time of evening on my own. I have never been what you would call a highly social creature, I never quite got the party thing, or going in huge groups to do things. To me I would rather spend time with just one or two people at a time, I can’t help wondering now if that is because of my MS, as I wrote the other day, conversations get confusing, too many people talking and I get totally lost, just smiling and nodding, with no idea what I just gave my agreement to. There are so many things in my life like that, when I look back adding in the problems that my MS were causing, which at that time I didn’t know I actually had, and there is a completely different light on the whole thing. But I am sure all of us with long undiagnosed conditions will be able to say that, when you are ill, you deal with everything differently.

I can see with ease why so many chronically ill people become isolated by a strange twisted choice, the worse your illness gets, the harder dealing with people becomes. If you think about it if you have had a really bad illness or even the flue, the last thing you really want is crowd of people around you. Well a chronic illness is really no different in that feeling. We don’t want to never see anyone ever again, but it is just so exhausting maintaining contact, that we slowly stop trying to. And because our friends slowly find it harder and harder for them to see us, they slowly stop trying and disappear. You can’t put the blame on either side, it is just the way life is and it is almost unavoidable, it takes a really special friend to persevere and not let that separation happen. In my heart my old friends are still there, even thought I know I will never see any of them again, I actually haven’t made that disconnection inside myself, as I didn’t want things to happen this way. I quite simply don’t have the energy to track them all down and say hello, nor do I want to actually have to say good bye again.

As all of you know by now I am content in my isolation, I know that is what it is, yet I have never found myself feeling lonely. I think I also know why that is, it is because I feel loved. As long as you know that there are people who love you, regardless of when you last spoke to them, or saw them, you aren’t alone. I don’t think that that last sentence reads with the strength that it is felt, but the truth is in there. It doesn’t matter how long ago the love comes from either, I think we all have sat and thought back through the friendships and relationships we have had through out our lives, and if you smile and feel happiness from those thoughts, well you know with certainty that those very people will also from time to time remember you in the same way. The older you get the more of those moments their are, add on to that the relationships you have now and how can you ever feel lonely. At this moment some of you will agree with me and some will think I am a nutter, well either way, it works for me, and it keeps me happy. I was loved, I am loved and nothing, not even my health can take that away.

Imprisonment

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.

Connections

I expect some of you have also seen my second blog, ‘Touching Space’, it is intended to be separate from this one but I am sure that like today they will reach out to each other and become one, you can’t separate life from emotion so I guess it is permitted. I wrote a small piece today on loneliness, to write it I pulled on my own memories of a couple of point in my life when I could have changed totally the path I went down or even ended it. These days it seems unthinkable that anyone should be lonely. We have such an interconnected life style with social media invading and strengthening our ties to others, it seems almost impossible to have no interaction with another person for one whole hour far less days. Those born from the 80’s onwards I am sure have no idea what being on there own means, Adam I know frequently forgets how different life was just a handful of years ago. What I am going to tell you now is not only true, but it is still hard to write and may be hard to read.

I was 13 years old, due to my parents getting divorced there had been a shattering of my whole family structure. At first I stayed with my father and his new wife but she had made it totally clear that I was unrequited in their new life. Over just a few months I was isolated and felt locked outside everything I had known. The relationship between me and my father was unhealthy to say the least and destructive at it’s best. I have mentioned this in the past and detailed that I left his home with a broken nose and dislocated fingers. I also left without a big brother and a much loved auntie, his family were now as cut off from me as my mothers had been for months.

At first the social work department found me a great foster family, they were Dutch and lived in Aberdeen like many other due to the Oil industry. Mia and Jan mad me welcome and I was happy with them for over a year, during that time Mia became pregnant and they had their own little girl. I was a noisy annoying teenager who clearly didn’t make life easy for them and I was one my own again, this time that was where I stayed. At 15 finding a new foster family was unlikely and I was a very grown-up teenager. You were never talked to in those days and asked what you wanted to do, the modern thing of taking a child’s opinion into consideration was unheard of. I was found a room at the YWCA and left there.

Heading for 16 next February meant that under Scottish law in the 70’s my father was allowed to cut me off completely. He contacted me through the social work Dep and informed me that was what my birthday present was to be. Without support I would have no choice but to leave school and get a job. The money that put a roof over my head was about to end. I wasn’t going to be able to sit my all important O’levels as I couldn’t stay there until May, I left school still aged 15 in the November, as I had found a job.

I had few friends, it’s hard to be friends at that age with people who have no understanding of how you live. I didn’t know one single person my age who was like me. My job was OK but I was by far the youngest in the office, so the chance of a friend there was zero. It was Christmas and the office was shut until January, the hostile was almost empty and I had nowhere else to go. Outside the temperature was below freezing and in my room they weren’t much better. My room, that was a bit of a laugh. The YWCA was a charitable organization, all the furniture had clearly been left in wills to them or given by families that didn’t know what to do with it. There was little there that was mine, a few clothes and even fewer bit’s and pieces. Beside the old furniture there was a 2 bar fire that ran off a coin meter, it ate money, if I fed it I didn’t eat.

On Christmas eve I finished work and headed to my room. There was ice on the inside of my window and no other single thing to say it was Christmas. That next week was when I first learned what lonely really meant. I went to the kitchen to cook some food and saw no one, the cleaners at the hostile were also on holiday, so no hoovering to remind me of normal life. It felt like I was the only person in that huge building. No one called on the pay phone in the hallway. No one knocked on my door. I lay in my bed all day every day, it was the warmest place to be. There was no TV, a radio that played Christmas songs I didn’t want to hear. On my lowest day I forced myself out. I dressed and headed the short walk to the city center. Remember as you read on this it was 1976, there wasn’t even Sunday shopping, no shop ever opened on a Sunday or bank holiday. No bars either, nothing. The city was silent and as empty as the hostile. I walked through the empty streets and headed to Duthie park, but apart from a couple of people walking their dogs, I was still alone.

For the first time in my life I found myself sitting on the cold hard ground by the river wondering how easy it would be to die. Not casual thoughts, dark painful thoughts, ones that counted the people I had in my life as one, just me. I was 15 and so alone, so hurt and so scared of the future,was this what life was, more of exactly what I had at that moment, that life was unbearable. Why would anyone want to live like that? I sat there totally lost inside myself because there wasn’t anything out there other than me. That is lonely.

The figure that formed my age then, are now reversed, but I have never forgotten it. Because I am housebound so many people ask me the question, ‘Don’t you get lonely?’ I have to be honest and say no. I have few but rich friendships that I treasure and recently I have found friends who I will never meet but I can talk to at anytime. That is the gift of the modern world that technology has brought us. I think the future will bring all of us a less lonely life as long as we have access but don’t forget those who don’t have a PC, ipad, or smartphone.