All mothers worry

Teressa phoned me last night. My first thoughts were clearly that she had spoken to her father, but to do that, I was sure that she would have gone to see him. After all, what I want her to talk to him about, isn’t exactly the sort of conversation you have over the phone. To do so would open up the possibility, that between speaking and actually having the forms in front of him to sign the deeds over, that he might just change his mind. No that is a conversation that needs to be had face to face. She was calling for two reasons, one to annoy me, and the other to surprise me. Firstly, yesterday was my birthday, I think birthdays are the most stupid thing that humans ever created. The whole idea, that we celebrate a person once a year, just doesn’t sit right with me. We should celebrate those we love all the time. If we see something we think they would like as a gift, then give it to them, whatever the date is. Why do it, just once a year? It has taken me years to get this through to Adam and everyone else, and everyone, other than my daughter, does just as I ask, ignore, 100% my birthday. The first words out of her mouth were “Happy Birthday Mum.” On the good side, she has stopped wasting money on cards.

The second thing she said was that she is coming up to Glasgow next week to spend a couple of days with me. She couldn’t say exactly how many days, as, her boss hasn’t confirmed the number yet, it could be two or three. She is about to leave Sega, who she has worked for, for years, firstly in San Fransisco and then in London, for a dream job with Microsoft. She will still be based here in the UK, but will be jetting all over Europe in charge of teams in several different countries. This short break, will probably, be her only opportunity to visit for a while, as her main holiday this year is to be spent in Ohio, visiting her husband’s family. Somewhere they were supposed to be last December, but all fell through, thanks to a mistake in timings, John made with applying for his new residence visa. Right now, it looks as though if she didn’t come here next week, it might well be next Christmas, if not longer, before I could even see her again. So I have something to look forward to.

Since her father snuck her out of the country when she was just 12, to live in New Zealand, and I eventually tracked them down, we have had a long distance relationship. We did have one glorious period of 6 months together when she flew home, to spent six months with me when Adam and I got married, before making the desition for work reasons, as there was none in the UK, to return to New Zealand. When she did get back, she phoned me straight away, her dad had returned to the UK in her absence and had said nothing. In the past 16 years, she has been married twice and lived on three different continents and has had a wonderful life. Everyone says that we are like two peas out of the same pod. We look alike, share the same sense of humor and frequently our words could have come from either mouth. We love the same TV programs and totally share our love of technology, especially PC’s. Our one big difference is this love of travel. I haven’t left the UK since I was 12, and I haven’t even left Scotland, for more than two days, in the last 20 years. I have never even owned a passport. I suppose her father had to have something to do with her, although apart from that, it’s hard to see what.

I guess it’s only natural, that as a mother, no matter what the medical world says, that I fear that she too will become ill at some point. It doesn’t matter how often they say that MS isn’t hereditary, I have this constant niggle in the back of my head. I probably wouldn’t be a mother if I didn’t. My family are plagued with autoimmune conditions. From Asthma that requires oxygen on hand 24/7, rheumatoid arthritis, and dozens of other minor conditions, plus a condition I have never been able to remember the name of, that my brother has. Apparently, there are only three people in Scotland with it. It attacks the kidneys and causes his lower body to become totally solid, his legs literary turn into wood, and yes, it is painful. If he is lucky he is just bedbound by fatigue, at other times he has is hospital bound, when it was at it’s worst. Yet again there is nothing they can do. Right now, he is in remission, but there isn’t one of us, who doesn’t have something. My grandmother died from some mysterious illness in the 1960’s, from the little I know, it sounds as though her life wasn’t dissimilar to mine. So yes, I worry about my daughter. So far, the only thing I know she has, just like me, she has what they now call HMS, I always knew it as double jointed.

I know that I am not a doctor, but when I look at my family and hear stories from others, about their’s, I can’t help but wonder if there is something in our genes, that open up the possibility, of the entire spectrum of autoimmune conditions. If you like, that we have a rogue gene that forms the firing pin, when other factors in our lives match up, they form the bullet. It is those other factors, that determine which particular form, we each develop. So no, none of the conditions aren’t hereditary, just the weakness that makes them possible. Coincidence is something that might explain a couple of people in the same family, but entire families, I believe, is stretching it too far. I guess though, like all parents, all I can do is sit back and just hope.


Please read my blog from 2 years ago today – 09/02/2014 – It’s written

It is now a habit for me and one I recommend everyone ill or not also fits into their day, time to just listen to your body. I started it as when this whole mess of illness began things came and went, often they were difficult……






Understanding people

I have zero energy today so for that reason I am cutting back a little on all my normal daily activities on line, not stopping just cutting. I don’t know if it is this stupid cold or if it is my MS but I suspect it is both. MS is this horrid illness that sits there waiting for any excuse to have an extra pop at you, a cold is one of those perfect excuses. Actually I think I should stop calling it a cold and just admit it that it is Bronchitis again! I don’t think that I have blown my nose any more than normal and it is only my lungs that are congested and I only have a cough and a bit of a wheeze, but either way it has now managed to drain me of any energy that I had. Even making my self lift my arms to type seems to be beyond what my body wants me to do, but as always I don’t have the sense I was born with and I am ignoring it, actually that is me being hard on myself, I know that giving in totally is a bad thing to do, giving in makes it harder and harder to actually get going again.

Yesterday I had this strange thing on Twitter where someone suddenly started being really abusive and swearing at me, I couldn’t think of a reason why or how I had upset them so I went to their account to see if it was just me they were acting like this towards, and at first to my relief I found it wasn’t. I wasn’t clearly hoping that others were also victims but I had the confirmation that it wasn’t me at the root of their rant. I made a huge mistake and tried to find out what the problem was and to calm them down, it was a mistake as it got worse, to the point I had no option but to bloke them. I have through out my life come across complete strangers who have taken an exception to me as a person and the more I think about it the more I have realised that what annoyed them so much is a combination of myself confidence and my insistence in being totally polite all the time. When someone has lost it and is swearing and shouting, being nice to them, seem somehow to make it worse. Knowing this you would think that I would have learned to shut my mouth and back away, but I have this need for some reason to understand everyone and to understand their actions, people watching to the extreme. I remember on occasion where my insistence on being nice got my pinned up against a wall with the aggravated gentleman with his hand round my throat. I was a bar manager at the time and he said that I had totally ignored him on several occasions, I still say to this day that I didn’t, but when a bar is really busy it is easy to miss people, anyway the point was I tried to be nice to him apologized and tried to calm him down, then he blow his top came round behind the bar and grabbed my throat. I find this type of reaction something alien to me and I can see no reason why anyone would act that way, I don’t think I have ever lost my temper at all with strangers and the worst arguments I have ever had, have been short lived.

I doubt now I will ever understand people of that nature, or how someone who is polite and friendly can cause such an extreme reaction in another. I guess I am and always will be, too nice for my own good, I can’t even remember saying something to anyone who pushed in front of me in a queue, or made a comment that I over heard, I just smiled politely and fumed inside, why, simple, nothing is achieved by being nasty, just turn the other cheek, smile and walk away, life is too short to do anything else. Add to that that these days I just don’t have the energy to be able to sort out the lives of others with an attitude well.

I spoke to my Mum yesterday for the first time from last Christmas, sorry no we spoke in February, I had received a Christmas card with a cheque in it and I know how she panics about them not arriving so I called. In most families if you hadn’t spoken for that length of time there would be loads of questions and things to say, we talked for less than 15 minutes and that was that. My mother has always seen this a normal way to be and all attempts that I have made in the past to make our relationship more average have failed, she is in her 80’s now so I doubt that it will ever change. Talking once or twice a year is normal for us and the conversation that we had was normal as well. Both of our healths and then her announcing that she won’t be here much longer. I have been hearing that from her since she turned 50 so I was actually watching the clock to see how soon it would be said for the first time, a new record was managed, not even 3 minutes in. As always it was her that brought the end to the call in her normal way of a short sentence about how much it was costing me and followed quickly by good-bye. She is another person that I have a little trouble understanding but she has been that way all my life, doing the minimum needed to be called Mum and no more. I don’t think it is that she doesn’t care, more that she has no way or showing it, I have no memory of cuddles or kisses as a child, more regimented performance, something that I think came from her childhood as she was brought up by a nanny, so mothering wasn’t something she understands. Her 3 minute announcement I think actually have a ring of truth for once, she has been in hospital twice since we last spoke and both times for around 3 weeks, she actually did sound frailer than normal, but there is nothing I can do from here, but let the rest of the family take care of her and wait for the phone call from my little brother, as he will be the only one who would think of telling me.

Who am I now?

Last night I found myself going over and over the same question in my mind, probably a question we all ask ourselves at times and probably one we should ask more often, “Who am I”. Having declared so strongly just a few days ago that “I am still in here”, it suppose it was the logical question to follow it. I don’t think in my life I have ever set out to be anyone in particular, past the same goals of wanting to be a wife, a mother, a friend and a family member, the simplest goals of anyone’s life. Along that road I became many other things, a sales person, a manager, a DJ, a disabled person and some how now an inspiration for others, not one of them were ever in front of me as a goal, they just happened. But I had ambition to continue my career to, learn more and grow in my business abilities, to stretch beyond the abilities I had and increase my salary to improve our lives. Right now I have lost many of the things I wanted from life, the freedoms and rights that I thought would be mine for the rest of my life, suddenly those freedoms are gone and I am where I never gave a second thought to when I was young. Becoming disabled is so easy a thing to pretend only ever happens to other people, to strangers as well, well it couldn’t happen to you or your family, you are good people, hard working, loving everything you have been told you need to be to lead a good life, no it could never happen to you. Oh yes it can!

So who am I now? Well I am the wife and the mother I thought I would be, but even there I am not either of them in the way I believed it would be. A wife is a someone who is there are a lover, a person to share the trials of life and the joys of the good as well. A wife is a homemaker, a cook, a cleaner, a giver and more, not one of these things feel as though any but their title applies. I can’t bake the bread or care for my home, I can’t fix and repair, or garnish our house with the extra’s that change it into a home. A mother is a care giver, the guide and the shoulder to cry on, the person who is there to boost and reassure when needed and the individual who helps in what ever their child may need. Yes I can still fill some of those roles but limited by my ability to reach my baby and help her, especially now when she is facing so many problems and joys. Both roles feel so much that they have become titles with no substance, as I physically can fulfill the requirements, the job speck that comes with them is far from being fulfilled.

So who am I now? I have become the patient, the experimental Guinea pig, to prod, watch and test, to learn more from and tick boxes on a list. I am here as a novelty not seen by many doctors, one that allows them to build knowledge and experience, while faining sympathy and empathy as they don’t have a clue. Someone to pat on the head and send away with some new tablet to try, as well, you never know, it might work better than the last. I am the person they can’t help, so they don’t really want to see me, as I am a reminder of there inability to cure.

So who am I now? I am the disabled person who is stuck in my home, who couldn’t escape if there was a fire, who never see the outside world past the view from my window. I am the annoying little voice on Twitter who shouts all the time telling the world that they have to listen, not because I am anything different but because I am one of many who no one knows is there. I send out messages of hope, of love, words to inspire and to amuse, I am the one who finds pictures of animals and cute babies to smile at. I am the person who reminds you that the world is filled with others like me. I am the one that won’t let you forget, who will nag and remind, who will plant real life in front of you in the place you go to escape. I am the women who has live a life and refuses to stop living it. I am the person who shows you all of life’s nasty tricks and the truth of living in a world of pain and confusion. I force you to listen I pull you into my world and I expose the nasty truth of how it can all go so wrong. Who’s body refuses to complete the simplest of things, as it seems to forget that the loos in the bathroom. Who’s forgets to eat, to wash or to change, who has no memory of what needs doing or how it is done. I am the body the wonders around looking at everything a new everyday with memories of 20 years ago but unsure of yesterday. I am person who watches minute by minute for a message on Twitter to tell me the world is still there. The person who will in ten minutes time ask “So who am I now”.

My life was a mistake?

I seemed very set back yesterday in my childhood, not just in my two blogs but also all day long in my mind. I know I do that at times and I think yesterdays journey was totally triggered by the fact it is Easter. Like everyone else I have good and bad memories but unlike most I have more time to think about them, I’m never totally sure if that is a good or a bad thing. Living in the past isn’t a good thing for anyone to do too much, but it can help to heal the bad memories. A memory can sit in your mind like an Ogre waiting to squash you, sometimes that Ogre is hiding in the sunshine and you still don’t see him. In some myths Ogres are said to turn to stone in the sun but it depends on the myth you read, I’m not sure if I can turn an Ogre to stone but I can and have brought them down in size.

No matter how hard I try I can’t remember the start of this memory, the actually subject we had arguing about and why it rose to a point were my mother slapped my across the face but I do remember what she said as she hit me.

I was about 9 or 10 and I remember that my mother was pottering about in the garden, we had been sniping all day and I had been sent to me room, from my window I could see her pruning the rose bushes and as I watch I got more angry until I did what I felt I had to. I left the room I had been sent to, walked straight out to the garden, across the grass and shouted at her. I told her with all the hate and spite I could muster, that I hated her guts and I wished that I had never been born to such a horrible person. I was stood proud and satisfied at having said my piece, of course as a child I actually hadn’t thought forward to what would happen next. I got handed a cold hard truth, re-enforced with a hard slap to my face and I was informed that I shouldn’t have ever been born. I was an accident through a condom and the Dr refused to abort me. That is the kind of Ogre that stays around for a long, long time. What I don’t get now is how my parents seemed to be surprised that for the rest of my childhood years I was rebellious and showed little to no respect.

It wasn’t until reasonably recently I put this memory finally to bed, I’m not saying that I don’t hurt when I think about it now, what I mean is, that it is quietly sleeping not having nightmares and disturbing everything around it. So OK she shouldn’t have said it, but if you can tell me 100% truthfully that you have never let slip words you wished you had never said, sorry but I’ll call you a liar. We have all done it, so step one dealt with. What she told me was the truth, it may have hurt but the truth frequently does, I can’t blame her for that, step two dealt with. Why did she say it is also something I can’t blame her for either, I had gone out there hitting her as low and hard as my child mind could come up with, she retaliated. I asked for it, I started it, step three dealt with.

The big one was still to be sorted in my mind and that was the facts of what she said. That was the bit I had had trouble with for years and it was having time to think that through which brought the breakthrough. I put myself in her position in 1960, she had a son aged 7 and daughter aged 5, freedom was round the corner and they had the perfect family. My mother had never been allowed to work, she had dreamed as a child of being a nurse but her father refused to allow his daughter to work, she tried volunteering but that was also stopped. So when she married at 21 and they had a family, her life was planned out again. Once their children were both going to school, Dad and her had agreed she could volunteer as a nurses aid, her dreams were about to come true, then she was told she was pregnant. Abortions where impossible to get without strong reasons and the Dr just wouldn’t do it, they rightly said that there were no grounds for an abortion as they could easily afford another child. Another 6 years of her life planned out holding her as a prisoner to her home. By the point that her ungrateful daughter was stood there being hateful, it had happened all over again with my 5 year old brother, step four dealt with.

It is the final step which is the one that most people either choose to not take or don’t want to take and that is forgiveness. It took me years to realise that if I was to be happy in myself as a person I had to learn to forgive. Each of the 4 step are vital, you have to put yourself on the other side, try to look through their eyes and think with as much as possible their minds, if you can see how and why, then forgiving is a tiny step. There is one point though that I think is important you can forgive, without agreeing. There have been far bigger thing happen that I will never agree with the person actions, but I can forgive them, because I can see why it was done.

I have for a long time thought that we should teach our children to debate, it is a very old fashioned thing now for schools to teach but I fully believe that it was learning to debate on the side of something I totally disagreed with and winning the debate, that taught me to forgive. Old fashioned education still has a place and we have thrown too much of it away.

I am my mothers daughter.

As a young mother I remember that horrific moment when I heard my mothers voice coming out of my mouth. I had vowed that I was going to be nothing like her. I was so sure that I was such a different person that the only possible link between us, was by birth. Not only was I different, I was going to be a better mother in every way, but then it happened I heard not just her voice, but her words.

I expect that everyone of us, at some point in our lives has caught ourselves turning into one of our parents. I would go as far as saying that it is probably a natural process, one that we have no control over, after all we are the product of everything that they are. A fact that that morning, when I was telling my daughter off for something, I had to accept I heard her voice. I also had to accept years later, when I started to see her looking back at me from the mirror. She was there when I had no make-up on, I had spent enough years of my life looking at her, that I knew those lines, that expression, I could with ease morph our faces.

With each year I saw her more and more and the layers of make-up went on thicker and thicker. She was still there, so the make-up became strong and individual, instead of thick, then the mirror showed me my face. Each evening when the mask came off, she came back. As the MS started to take it’s toll on my body I saw me slowly moving within her aged stance, long before I should have been there. The nearly 40 year gap was closing fast.

As I became less able to take any form of exercise even walking, my body shape changed and took on fast, the form of a middle age women, her form. My body had always been mine, I danced daily and could outrun, out lift and out move most people of my age and much younger. At first when I had to give in and use my wheelchair I still managed to stay quite fit. I went nowhere slowly, my upper body strength remained and maybe even increased, but then it crashed and burned. My chair was gone and so was my figure. Lumps replaced curves and flab covered, then consumed muscle. She had got there too.

Now all to often I find myself suddenly aware without the aid of a mirror, to know that I have pursed my lips the way she does, or that my mouth has those turned down corners, that are all to familiar. Sitting slightly slumped in front of the TV with my arms crossed, I feel my chin dropping closer to my chest, forming signs of a companion chin, she is there again. In silent times I feel those slightly sad, empty eyes looking out from my face, not just at it. They see the results of their creation and look sadder still.

So what is left of me, probably exactly what was there the day I was born. A baby is a parasite and consumes everything that it needs for life from it mother, but how much more do we consume? Where is that line of individuality drawn or is it ever really there? It’s easy to raise the nature or nurture argument but impossible to raise the answer. When I consumed for life, I also absorbed that life, taking it with me no matter how hard I strove to separate it from me. Like it or not I know my mothers voice, as I heard it when I was inside her, I now I here it inside me.

Well Mum, you win, I surrender, I am your daughter. No distance, time or experiences have managed to separate us and although you are still alive, you already haunt me. Well done.