An entertaining conversation

I absolutely love having conversations with my 4 yr old son, they are truly wondrous, funny and perceptive at the same time. Anyway, yesterday my husband was unwell with a bit of a stomach bug, and our son is always extremely attentive should either of us show signs of being a bit peeky. So this morning he says to me.................

"Ma, my legs are not working very well, I think I need to use your wheels...." you have to imagine a certain earnestness about this. So I thought a second and then replied......."hmmmmm, you know I think they might be a bit big for you at the moment, and anyway how would you manage at nursery?" He gave me that knowing solemn look and then said, "yes Ma, I might get stuck in the door".

Ah yes I thought, I wonder where hes seen that before!?

Punctures

.....are every wheelchair users nightmare. Ive never had one while Ive been out and about but I am at the moment wrestling with a mysterious puncture in one of my wheels. I have 3 sets of wheels so its not urgent fortunately. So over the last few weeks the tyre has been on and off more times than a pair of socks at a chiropodists. if you've ever mended a puncture on a bike when you were a child, its exactly the same. So Ive got the inner tube out, popped it in water, found the leak and then mended it, or so Ive thought. Each time I seem to miss one, and the tyre remains flat. I did think it was maybe the valve, but again Ive tested that and that seems OK as well. so its a fine old mystery. Its one I'm getting desperate to fix now though, because the effort is doing nothing for my hands and I do have better ways to spend my time believe it or not.

Guinea Pig!!

Recently Ive been bit of a Guinea Pig. A reputable German medical company were looking to talk to people about how you go to the loo of all things. And as you know I'm ever eager to push the frontiers on medical knowledge, I'm also incredibly nosey as well, so yes I jumped at the chance to volunteer. I was even more thrilled to find out they would pay me as well for my 'expertise'. So a couple of weeks ago they sent me a fascinating catheter sample. Well actually it looked like most other catheters apart from the fact if you were dextrously challenged it would be difficult to use. Then a week later they phoned and asked me all about it.

This week they did exactly the same thing and then called me to ask about my bowel habits. OK I know what your thinking, the thought is sort of YUK, but they didnt ask anything I would call sensitive, and again paid me for my time. So if you have similar expertise to me and want to earn some money let me know and I'll pass you the details. Yes I can now rest easy in the knowledge that Ive helped advance the cause of medical science!

Instant Karma

Sit and think a minute, I bet £1000 you have a friend or acquaintance who has a perfect life. I mean every so often you come across someone who is for example, a straight A student, a perennially popular person, has a wonderfully exciting job, the perfect family, a wealthy husband, travels the world and generally lives a life that most of us would kill for. This person really does seem to be so incredibly lucky at times you have to wonder at the justice of it all. These are people to whom nothing bad or unfortunate has ever ever happened and who's life has always gone according to plan and never deviated. Make you sick don't they?!

Not that I'm jealous, actually such things don't really bother me, but I am slightly amazed that some people have just incredible good fortune. Having said that I bet you also know someone who's life has been one tragedy after another and who has never had that one piece of luck we all need at times. Sadly life doesn't seem very just for some and is more just for others. However I'm a big believer in karma.

The philosophical explanation of karma can differ slightly between traditions, but the general concept is basically the same. Usually it is understood to be a sum of all that an individual has done, is currently doing and will do. The results or "fruits" of actions are called karma-phala. Karma is not about retribution, vengeance, punishment or reward; karma simply deals with what is. The effects of all deeds actively create past, present and future experiences, thus making one responsible for one's own life, and the pain and joy it brings to others. So in a nut shell, I think you can basically say what goes around comes around.

I'm positive that we all have difficult times in our lives, for some it comes early on, and for those people you know who have those charmed lives, well its just a case of seeing it come along in later life, but it pretty much catches us all at some time or other. Ive known people who have trampled over others all their lives, only to find that later life brings a certain reckoning, whilst I know people who have had great struggles in life suddenly find that they get a wonderful opportunity and go and do something fantastic. Life is like that, so there is no point in dwelling too much on things, as it can all change irrevocably in a second for good or for bad. No one has everything forever.

What is to be.....

I have conflicting thoughts on life. A lot of the time I try to think "What is to be shall be..." "Que sera sera....." This is mostly an attempt to stop me banging my head until it explodes with frustration, because I find life, well......the analogy I use is, its like running a marathon in a swimming pool. So I try to take this laid back approach in a vain effort to save my blood pressure. But of course if you apply that theory to everything in life then of course that means I'm supposed to be sitting here which is hard to swallow at times. So is life all predetermined then? Do we have any free choice? Are some things destined, others not?

I don't really do a lot of 'philosophical' thinking if I can help it, you have to have a certain mindset which I just don't have, the more I think about it the more I feel its nonsense and then I just feel like I'm running around in circles and finally I end up just cross! I'm not sure any of this was meant to be but I suppose you can always look at a train of events and think if only Id done that later, or changed my mind, or done something else. But I didn't, so what ifs are a bit pointless at the end of the day, its the here and now that counts.

Shock Tactics

I live close to the A69, which every year claims the lives of maniac drivers and their victims. A neighbour who is born and bred here said to me once, "You think you know that road but you never really do." The yearly death toll reflects this, the twists and dips in what seems to be a fast and unlit road proves the point he wisely made. I don't know what it would take to make people think but The Queensland Government Transport Dept. makes shocking and hard hitting information films. You my argue these make no difference but their statistics which show a year on year fall in road casualties would suggest otherwise.

There is no blood, gore or horrific death scenes in this film, but it has upset many, so I'm giving warning that its not for everyone.

We tend to be obsessed sometimes with showing the positive face of disability, sure a lot of us are leading full and interesting lives, but lets not forget those who are not. Life is not all about being inspirational and brave, worthy and uplifting. Its hard, its despairing, its painful and its a slog and I don't think any of that ever gets any easier, we just pretend it does. So, in my opinion, lets not slate Queensland for showing that being disabled isn't all Paralympic sports, I'm sure everyone of us wish we weren't sitting here really, and if these sort of films make some people just a bit more careful then that's fine by me.

The Power of Prayer

This weekend I was having a cup of tea with some casual acquaintances when they suddenly said, Do you mind if we pray for you? Well what can you say to that? If something is asked in a sincere and genuine manner why should I mind?

A couple of years ago I watched a documentary which followed academic research on the power of prayer. It was University Hospital Kansas I think, here's a little clip of news from the BBC.............

A massive study has found that patients admitted to hospital with heart trouble fare better if someone is praying for them.
None of those involved were told that people were engaging in what is known as "intercessory prayer" on their behalf. Just over half of these, picked at random, were made the subject of intercessory prayer. However, on average, the 500 patients prayed for had 11% less complications during their stay in hospital. In all, the researchers looked at 990 people admitted to the coronary care unit over the course of a year. Using a standard coronary care scoring system, patients from prayer and non-prayer groups were assessed. Those who were the subject of prayer did better than their fellow patients, although in general, they did not get out of hospital any earlier.
The research team, based at a university hospital in Kansas City, US, admitted that no rational explanation could be found to explain away the difference. But their report said: "We have not proven that God answers prayer or that God even exists. It was intercessory prayer, not the existence of God, that was tested here. "Chance still remains a possible explanation of our results." The prayers were said by volunteers from a local church. They were simply sent the patient's first name on a piece of paper, and told to pray for "a speedy recovery with no complications".
Those being prayed for did not even know that a clinical trial was going on, let alone that they were the target of prayer. The scientists believed that knowing that someone was praying for you could conceivably have an effect on outcomes. Other studies into the effects of intercessory prayer have been inconclusive - it has been found in earlier studies to have no significant effect on leukaemia patients, or those suffering from anxiety or depression. However, one study into AIDS patients found significant improvements in the number of infections acquired when intercessory prayer was given.
The latest study was published in the Archives of Internal Medicine.

So who can really tell? I'm not expecting a miracle but I certainly don't mind if someone wants to offer up prayers for me,........I'm after every angel I can get.

Nice to see You, to See You...

The Internet being what it is means its not so hard to track down old friends. I mean if you Google me, I pop up 644 times in one form or another, yes I'm ubiquitous. I'm also the only person with my name in the world (probably) unless you know otherwise that is, so from time to time I get e mails from old friends, school friends, Uni friends, work colleagues and fortunately for me I'm pleased to hear from most people, pleased to know their lives have worked out OK one way or another, and its also somewhat flattering to know they even gave me a second thought.

Their e mail usually gives me a brief run down of their life over the last 20 years or whatever and then finishes with, 'so whats been happening with you.....? Hmmmm tricky one that, I haven't quite cracked it. Ive tried various tactics, the brutally honest and the brutally dishonest, neither work.

• I'm healthy, wealthy and successful with everything one could ever want in life, take 4 foreign holidays in the sun a year, and have several overseas properties...... blah de blah.

Not his doesn't really do it for friends. So I could try the honesty is the best policy line

• I'm crippled, have 2 kids, no job, and my husband looks after us.

No that's not inspiring either. In fact I have had people never bother to reply if I drop the disabled bit in, so now I sort of don't mention it for a while and if they e mail me back I hint at some sort of problem until they get the idea.

Its hard to mention it to people, on the one hand I don't want to be a real harbinger of doom but by telling people I'm really trying to say its OK, I'm fine with it and hope you are to. Its that simple really, how can it be any more difficult?

Raynauds Syndrome

Ahhhhh.... my cup runneth over................. (Tehillim 23.5)

How come you wonder? Well, Ive had this problem with my foot for, well lets be honest at least a year now, and Ive ignored it in the hope it would go away as I'm sure at some point my GPs practice will install revolving doors just for me. Its been one of those things where I should have gone but kept procrastinating. So last week my GP referred me to a chiropodist because she thought I had a fungal infection and so did I.Anyway the chiropractor had a good feel of my frozen ice cubes which disguise themselves as feet and said, Oh I think you have Raynauds Syndrome, do you get chilblains? I don't know as I wouldn't recognize one so she felt about a bit and hey presto found chilblains. Remember how I said I had this super itchy foot which is magnified by hypersensitivity, well under the skin are little nodules which are chilblains and bloody hell, itchy isn't the half of it, I really and truly want to rip the sole of my foot off. Do I have cold hands she asks? Well lets just say its a good job I never did medicine as my fingers are often frozen solid. I mean solid here, my fingers are literally stiff with cold, and I just thought it was normal!

So what causes it? Well who knows? My Doctor wants me to discuss it with the Neurologist next month, but thinks it caused by the neurological signals not getting to the blood vessels efficiently, so it could be SCI related, it could be a genetic predisposition, or it could be my misfortune. Probably the latter I suppose. The main thing now is to watch my hands, keep them warm and keep them in good working condition...... (stalks off muttering!) Its just a real bugger when it comes down to it isnt it?

The Funeral

So what happened? Did I go? We managed to come to a compromise in which my husband went to the funeral, I met a friend and had an eccentric lunch with the 2 boykins in tow!!! So who got the better deal I wonder?! Anyway Id agreed to meet him just after 2pm and after a few minutes he appeared and came running over, 'Oh you must come in, everyone is dying to see you!!' Great turn of phrase there I thought.......Just what I hoped for. Gone were my quick escape plans. My protestations were useless so he marched off with the boys, and me promising to re park the car and get myself out. Now the thing is, the situation of the synagogue is awkward. There is NO obvious place for parking, and certainly NO useful dropped kerb. You'd think there might be one outside the building but no there isn't, so its really awkward. Not just for me either, there are other elderly members of the community who find it hell. Its also a rather hilly area which doesn't help. I had to park on a junction at the top of a hill and just about get out the car. It was OK, but Bristol City Council, you should look at this because it isn't satisfactory.

Why are events so awkward for me? Well people do react even though you know they are trying not too. The other thing is of course they don't know how to actually deal with me. I find I hear lots of people shouting "lovely to see you" all the time, my head swivels round like a bloody owl as I'm trying to work out who just said that. Then, people like to come up behind me, put their hand on my shoulders and start talking, like I have eyes in the top of my head or something. The worst thing of all is when they bend over, bob down, say hello to the side of you and bob back up before you get chance to say anything. And yes you're right in thinking all this did happen and its horrible at times. Finally of course when you are going, people open the doors for you. I have absolutely no problem as I do it for other people and its a question of manners. However spatially people are not aware. They STAND IN THE DOORWAY expecting you to come through. I inevitably run over toes and spend 5 minutes going "Sorry, sorry, are you alright?" to at least 3 or 4 individuals.

So you can see Im not keen on mass events. Who knows if I will ever be totally at ease with myself but I suppose its getting better, after all it was only a short time ago that I would have been too shy to go. By the way it was a great funeral with lots of smiles and few tears, they are the best ones to be sure.

Time for a bath

So its time for a more interesting piece, entitled Bathing for the Physically Challenged!... or something like that. I love having a bath, I really do. Sitting in nice hot water for quite a while has a wonderful effect on my well being, the most decadent thing being eating a sandwich, a mug of tea and listening to the football. Ahhhhhh, its real me time I suppose, and not withstanding the palaver of getting in and out, is a time of quiet, well usually.

I was sitting in the bath the other day and thought about the water and then sort of realised I couldn't really feel the water which is a sort of odd experience. What I find is that my brain likes to fill in the gaps, it knows what should be felt and experienced so does its best to oblige even though its not real. Another strange and unpleasant thing I have with water, is temperature sensitivity. It doesn't always happen but sometimes I get in the bath and the water seems to be scalding hot on my legs and feet. It really has me shouting out loud, only of course it isn't hot at all, I assume this is some sort of neurological hypersensitivity. The only way to get round this is to have a very tepid bath and bring the temperature of the water up gradually, making sure I don't burn my feet on the taps which I have done before.

But a bath remains for me a real luxury and decadence at times. So whats for dinner tonight?

Who Can Stand?

Inspiration comes from many sources. More often than not its the people Ive known, deeds given with kindness, words said with sensitivity and situations overcome. Sometimes though when I'm on my own, I will take inspiration from something Ive read. I think this must be a sure sign of age as Id probably have snorted with derision 10 years ago as Ive never been a great fan of poetry.

Something that I often listen to in the car is this poem by William Blake, Who Can Stand?

O for a voice like thunder, and a tongue

To drown the throat of war!

- When the senses

Are shaken, and the soul is driven to madness,

Who can stand?

When the souls of the oppressed

Fight in the troubled air that rages,

Who can stand?

When the whirlwind of fury comes from the

Throne of God, when the frowns of his countenance

Drive the nations together,

Who can stand?

When Sin claps his broad wings over the battle,

And sails rejoicing in the flood of Death;

When souls are torn to everlasting fire,

And fiends of Hell rejoice upon the slain.

O who can stand?

O who hath caused this?

O who can answer at the throne of God?

The Kings and Nobles of the Land have done it!

Hear it not, Heaven, thy Ministers have done it!

--William Blake.

Blake you may recall was responsible for the poem Jerusalem, but personally I find this a more powerful piece than his better known work. I like it anyway.

Iko

Ive pulled a muscle in the side of my neck and shoulder, down into my arm pit and it hurts like hell! This is a result of having to lift a bumper baby just once too often, thanks Ike, its a good job I love you to bits!..........

Funerals

Sometimes you just have to accept that you cant always do what you want, even though we go on about how society makes us disabled, occasionally we just have to go with the fact that we are actually, really and truly, disabled in some way.

A close friend of ours died at the weekend and while it was not totally unexpected I shall miss her and the world is certainly a lesser place without her. So we have been discussing what to do about the funeral. We are in Northumberland, the funeral in Bristol. Its a round trip of just about 600 miles and thats not easy at the best of times with small children. Add into the mix me, and a husband who cant drive and its not easy. At times like this we suddenly realise the public transport system in this country is more rubbish than we ever believed, so I can drive or we can fly. Id sort of assumed that Id be going as well but he said' you know I don't think you need to come'......Oh yes? I said, he started to squirm just a little bit, 'It might be a bit difficult with you in a chair, and well I don't want it turning into a side show'. At first I was rather surprised at this but as I thought about it hes got a bit of a point. The whole point of a funeral is to celebrate a life, not detract from the proceedings by having me there. Sadly I know in my hearts he is right. I know most of the people who will be there and I would become a great talking point. Its not the place, not at a funeral. Is he embarrassed? Yes I think he is, but I don't think he should him be embarrassed by being embarrassed after all its a normal reaction. But after some reflection I will be staying home.

Lets Meet...

And while Im having a moan..... "Lets meet at Rheged.." No lets not meet at Rheged huh? It just cant be the only wheelchair accessible place in the whole of Cumbria thats vaguely child friendly can it? If someone comes up with this bright idea again I will go bonkers. Its fine as a place to visit from time to time, but non stop gets boring, and the parking is rubbish as well. So Im sick of going there and if I dont see it for another year at least I will be a happy woman ok?

Rent A Crip

Thats me......! Need some consulting done on some work you are doing? Want the opinion of disabled people? I know, Why not consult Lorraine, shes bound to have an opinion? Even better why not consult Lorraine... as shes sick of doing it.

Consultation is one of those buzz words that bounce round and round and I'm forever being asked my opinion on some consultation document or other. Sometimes I'm happy to help but Ive got to that point of consultation fatigue. Do I care about any of this stuff? No, at the moment I couldn't give a damn about most of it. You see I'm asked to give my time, my educated opinion and sometimes I even have to travel and I'm hardly ever payed for my efforts., I don't even get expenses a lot of the time, so whats in it for me? I guess this happens to lots of disabled people. We suddenly become highly valued when people want something from us. But pay us for our time. Oh no there's never any funding for that. If I had any other expertise I would expect payment so whats different here? Are we not valued? No we are not. It should not be taken for granted that we all want to give our time freely. Personally, I'm sick of giving of myself and getting nothing back in return. So if you want something consulted on go and find someone else because I cant be bothered any more.

Carpe Diem

Anyway, having indulged in gazing at my numb naval for several weeks and being hells wife I'm sure its time to seize life's opportunities. So first of all I heartily recommend Glen Miller for raising ones spirits. My grandmother used to sing and hum all those wartime songs to me when I was little only I didn't know at the time what they were.. Listen to them now and I can immediately smell her house and indeed her, it was a time of warmth and safety. Good memories.

Next Ive had a good look at what's about at the moment. What can I really do with myself? Well on a rather rash whim Ive applied for the National Geographic Journey of a Lifetime Award, where they do just that. So I thought about a trip to the Lotofen Islands, telling the story of the of a fishing industry long forgotten. Going via the west coast of Norway by steamer and train and wheelchair was, I thought, quite a good idea so Ive sent it to them. Of course I don't expect to have any sort of chance but doing such an application at least focuses the mind.

On a more realistic note Ive decided to finish off the degree I started 4 years ago. I did the first year of law at Bristol and then had a baby and life well, just overtook me. I was thinking of doing management which might be beneficial but aside from a few modules Ive taken the plunge and decided to finish the law instead. Ive always been very taken with the concept of Justice. There doesn't seem to be much about does there? I doubt it has ever been any better, but who knows what I might be doing in a few years.

Finally I'm applying for a job I really have no chance of getting but I suppose I'm doing it more to see if I can get an interview and how far I can push myself.

So I guess its probably a case of onwards and upwards, its time to play up and play the game! ( she says in a Pollyannaish style!)

Pollyanna

Wikipedia says........."Pollyanna tells the story of Pollyanna Whittier, a young girl who goes to live with her wealthy Aunt Polly after her father's death. Pollyanna's philosophy of life centers on what she calls "The Glad Game": she always tries to find something to be glad about in every situation, and to always do without delay whatever she thinks is right. With this philosophy, and her own sunny personality, she brings so much gladness to her aunt's dispirited town that she transforms it into a pleasant, healthy place to live. Eventually, however, even Pollyanna's robust optimism is put to the test when she loses the use of her legs in an accident."

Well that just about sums me up, I'm bloody Pollyanna. Oh yes that's right I'm so wonderful & positive & cheerful & inspiring & fantastic & marvellous & energetic & optimistic and every other superlative you can think of. Only of course I'm not. I give a great impression of being cheerful and witty but the reality is that at times my soul seems as black as the Prince of Darkness.I'm often a bad tempered bitch who is a misery to be with and my own worst enemy. I have spent the last 3 weeks crying. I have cried in every room in the house, in the bath, in bed, in the car, on the phone and on my own. I have felt exactly as I did 2 years ago, as if my life has run through my fingers like sand, all my hopes evaporated. My dreams vanished. I feel like I have a ton weight strapped to me throughout life and I'm very tired of dragging it along with everything I try to do. Ploughing your own furrow constantly in life is draining and dispiriting and I find myself crying to any God that might exist just to make me ordinary and normal and like everyone else.