‘What’s in [my] name?’

Sometimes, I will read the ‘daily prompt’ and decide it is completely irrelevant and go looking for something else to write about. Other times, I will know what I would like to write and just go for it. Today however, the prompt made my heart skip a beat and think about whether I really should post what I am about to write. However, I have decided, as what happened has been retold many times over the last thirty years, and as long as I don’t share personal details, I think my parents will be okay with it.

Today’s prompt is as follows:

Write about your first name: Are you named after someone or something? Are there any stories or associations attached to it? If you had the choice, would you rename yourself?

Originally, the plan was to name me after my Dad’s Grandmother Louisa, or perhaps, to shorten it to Louise; I can’t remember which. However, nothing went to plan, as my mother was taken ill 3 months before I was due. My heartbeat was dropping so they had to get me into this world, even though survival at that stay of gestation was almost unheard of 30 years ago. I was born on the 18th of April and rushed to the special care baby unit.

Both my mother and I were on life support and very ill. Three times while my mother was ill, she told my Dad what my name should be: Jacqueline. My Dad went and registered my name after this, as he thought my Mum had asked. Much to his surprise, when my Mum woke, she couldn’t remember anything about this, and did not know how i had got my name. Their only conclusion? My name must have come from God.

To this day, I do not really know why God gave me my name, although someone once suggested it may have been because I am an original, and to name me after someone else would not have made me unique. Perhaps there is some truth in that I don’t know. I do know that I once hurt my Mum very much because i told her I didn’t like my name. This is something I very much regret. My Gran once brought me a framed picture of my name, drawn/written in calligraphy, from her holidays. That picture lived in a cupboard for a few years while I did the teenage thing of throwing a strop; in my case over my name. However, when my parents were organising their belongings in time for moving house last year, I asked them if they could bring the picture with them and hang it up on the wall for me. I don’t know if they were surprised or not. Now, I rather like the idea of having a name no one else in my family has. Additionally, no one else out there who is also called Jacqueline will have be given their name the way I was given mine. It makes me feel loved, and special. Though I once would have changed it, now, no way!!

Syal sticks up for disabled people!

coins
coins (Photo credit: Wikipedia)

I posted the following on my Facebook page today as a ‘status’ but then decided what had been said merited further thought, so I decided to write something here. The following is what I wrote on Facebook.

While I was watching the Andrew Marr show today, I heard panelists talking about £1bn being lost in tax avoidance because companies are now conducting are their affairs through Ireland. Meera Syal then said “I can’t believe nobody’s doing anything about it, given that I know at least 3 or 4 ppl who are literally on the breadline because their disability benefits have been cut.” When you put it like that, it shows just how inconsistent the Government is being, especially when you consider that ‘Dave’ talked about ‘Compassionate Conservatism’ at the last party conference. Where is your compassion now, David Cameron?

I listened to this part of the programme a couple of times to type exactly what Syal said. Listening to the rest of the discussion, I quickly became disgusted as her fellow panelist seemed to casually dismiss what she said. Only Nick Robinson (standing in for Andrew Marr) attempted to discuss what Syal said, he too brushing it off by saying that at least politicians were ‘starting to’ realise what was going on, and talk about how to sort it. Sorry, but they could talk about it forever more but that doesn’t mean the problem will be solved. The other panelist then talked about how the companies would say this sort of inconsistency was down to the Government and the law-makers, and is about getting the balance between bringing in money from taxes and lowering corporation tax so that these companies could work from this country, but without addressing the inequality which Syal had tried to bring their attention to. Syal then said this situation was ‘immoral’. However, Robinson was keen to move on, asking the other Panelist to begin discussing the next story of interest. A little later in the program Robinson interviewed Theresa May, largely concerned with the fallout from the shooting of the soldier in Woolwich. May claimed Cameron ”has a grip on the terror laws, reducing the deficit, and a grip on reform of the welfare state” I beg to differ. as I did at the back-end of last year, both with Cameron’s approach to reform/cuts and the motives, or e-motives, behind his, and his party’s actions.

Perhaps Robinson would say there was no room to discuss Syal’s concerns; it was not in the script/autocue. However, they have plenty of time to talk about the same story over and over. Perhaps they would say it was ‘in the public interest’ to discuss this story. However, the discussion that there was surely shows the blatant lack of thought for the poor of this country. There is no escaping it when the truth is highlighted so baldly.

We ignore those on benefits and the ‘working poor’ at our peril… time will tell just what the consequences of this inaction will be. How much more can people be squeezed? Apparently the delivery of Universal Credit on the deadline is in doubt, hurrah!! Watch this space in the coming months for more comment!

p.s. if you are from outside the UK, what is the Government’s attitude towards poor and/or disabled people? What help do you/they get if any? Do you agree with how you/they are treated? What, if anything, would you do differently? If you are from the UK, what do you think?

A lifetime of thought-life: Green-eyed monsters, faith and suffering

Thought-life

Yesterday’s daily prompt was poignant for me. It’s not so much intense jealousy of one person; but guarding my heart against jealousy full stop. As a Christian, I would be required to do this anyway, but for me it seems like there is more temptation to do the opposite. I wrote about thought-life for Bible Reflections last December. What I wrote then is still applicable and appropriate now.

It’s maintaining that sense of perspective that is one of my biggest pitfalls. I have the same responsibility as the next Christian to hold every thought ‘captive’ (2 Corinthians 10:5). This instruction has been near the front of my mind many times in these past four years, because it is often my fiercest battle-ground due to the nature of what I am dealing with. I am reminded that we are to ‘rejoice’ always, giving thanks in everything (Philippians 4:4-7).

Jealousy, Envy or something in-between? 

Obviously I am only human, and there are times I am jealous. Sometimes jealousy is too strong a word. I used to be envious, jealous even of people that could work. People the same age as me who already made it to Ward Sister that I would meet when I was in hospital. I would feel it keenly that they had their career and I was nowhere. I think I have come to terms more with not being able to work. It is never something that will ‘sit easily’ with me because I would dearly love to be able to work.

At the moment, I can be envious of people who can move around more easily than me. To visit someone special in the summer will require a ‘military operation’ and I shall have to pay lots of money to cover my carer’s expenses, just to do something most people could do without hardly a second thought. I will do it, because they are worth it. Still, sometimes I think, ‘if I was normal, this would cost nothing’. Non-disabled, I would be able to drive my own car, and stay with said person, so far so normal… the reality is quite different. I do not yet wish to go into it, only to make clear where the potential to become envious lies.

This inability to travel easily has affected my social life before. I have not had a holiday since my brother’s wedding last year, and before that it would be about 3 yrs. Only because my wonderful parents collected me in a car on both occasions. I have to just not let myself think about those things. It is how it is, and that’s it, tough though that can be. It also means they are people I have not seen in years, like my best friend from big school, as I wouldn’t manage now to meet her halfway on my own.

‘What if…’

Sometimes people will say to me, if you didn’t have this or that, life would be easier for you. I understand why they say that. It comes from people who either spend a lot of time with me, or love me, or both. They see the hassle and distress my appliance can cause me and wish I was without it, as it would make a life-changing difference were I not to have it. It would, admittedly, also make life easier for those around me, and potentially make some of the aspects of going away easier. However, this is the situation, and to wish something was not so does not really help except to get me down, were I to really think about it. Of course, I wish life were simpler, but I saw something on Facebook that really helped, from my friend Wendy, a fellow blogger, who quoted something from Ann Voskamp: “Hard places give us the gift of intimately knowing God in ways that would never be possible in our comfort zones.” Whether you believe in God or not, the sentiment is true, that we learn more when we are pushed outside of our comfort zones than if we just bumble or drift along. There is though, always, the temptation to envy. This or that one has more money, can afford to go on holiday, can work, is healthy, is engaged…. This is why always, I should watch for my attitude and keep the right perspective. There are many good things I do have. Parents who love me, wider family who also loves me and some of whom travelled hundreds of miles to my birthday party last month, wonderful friends who form a vital part of a crucial support network, and someone special though early days. The less said of that, the better! I am privileged God has given me a little house I can get around with my wheelchair and good enough adaptions I can access as much of it by myself as possible. As councils become increasingly cash strapped, housing like mine though rare, will become ever more impossible for those that need them to find. This is something I am extremely thankful for. Out of these blessings comes a responsibility to share what I have. The more I give to others, because I have been given much, the more I feel fulfilled, and less tempted to want what I do not have, or cannot do. It is a constant checking of my attitude and my thoughts; at which I know I need to work at, as do we all. There, at least, I am ‘normal’!!

Goals? What Goals?! 

English: football goal

Goals? What Goals?!

I have to admit, yesterday’s daily prompt took me by surprise. It struck me it might have been the sensible thing to do before I started to write this blog to work out what I might hope to achieve with it and how I might get there. Presumably, I might have thought about such factors as potential ‘pet’ subjects, areas of expertise, target audience, ways of spreading the word and growing my readership. If I have done any other things, it has either been largely by accident.

I saw something yesterday (or was it the day before?!) about how to build a blog from scratch that would do the kind of things I have described above. I didn’t read it for fear that my blog would be found wanting. When I started writing, I had little confidence and no idea if I was much good at it, save for encouragement via tweets and Facebook comments on my monthly digidisciple posts for ‘The Big Bible Project’.  However, through this blog, I began writing for Bible Reflections, after I sent tweeted them the link and asked them to consider whether I might write for them. I have done other bits and pieces of self-promotion of individual blog posts, or informing others that my blog exists. From time to time, some of you have Re-tweeted one of more of my posts, for which I am grateful. The most widely read one had 70 views in just one day, as I managed to write it at the tail-end of the Conservative Party Conference, on ‘Compassionate-Conservatism’ a phrase ‘Dave’ or his speech-writers created, and peddled. I later sent this post to my MP who duly re-tweeted the link, and even replied to my email. I hadn’t planned to send the link to the post to my MP or even to write the post, but instead did all these things on the spur of the moment. Unfortunately, due to exhaustion from the effort of writing the post the day before and excitement at the popularity of it, I was unable to capitalise on this by maintaining the frequency of my posts, and so lost the momentum. Indeed, the only goal I had was to attempt to post every day, and I certainly have not managed that.

There have been times recently where I have barely managed one post a week, partly because I did not have the head-space or the energy to write. If I did, what energy I did have was absorbed by other things, or I have been asleep. Indeed, that is what I should be doing now  I am unlikely to be able to sleep until I get the majority of this post out of my head. Having not set goals I have not achieved them, but I probably could set goals now, were I to start this blog again. I would also have loved to build on the support I got from word-of-mouth and increase the readership in a meaningful way. Unfortunately every-time the readership increased, it fell back again, which almost feels like wasted effort now. Some of the other loose goals I had were around connecting with bloggers with similar interests, and having an outlet for my creativity, thoughts, and emotions. I also wanted to improve my writing or my ‘craft’. I have written about these same things in recent months; including who came up with the name, and why.

I wouldn’t change these goals, as I very much have to continue to work on them.      Writing at all is a battle of wills between body and mind. I really should be sleeping, but I am able to think clearly and coherently, so it is worth staying up to write as I will feel the benefit of it even once I wake from sleep.  I guess that’s my own way of writing sacrificially, as there are other things that get in the way of my writing that can’t be deferred including, but not limited to, migraines, sleep deprivation, appointments… I am though, renewing, and redoubling my efforts to write at least every second day. Another goal is to have most guest blog posts, so if you would like to write for me let me know! I’m off to get some fresh air and try and wake up while the “currant bun” is shining!

coffee, stink bombs and aftershave…

Today’s prompt reminds me of situations I have sometimes been in. (Girls, I am sure some of you can identify with this!!) You are so completely focused on the other person that some of your senses are heightened and others dulled… how the person smells, how it feels when they hug you or you hug them… If the other person suddenly speaks it’s a jolt back to reality and I may not realise what they said or even that they spoke!!

English: Uploaded by Moon Costumes, http://www...
English: Uploaded by Moon Costumes, http://www.mooncostumes.com/zoom/8092, Photograph of a widely distributed gag stink bomb, package and example of breakable enclosure. The picture is of a brandless generic. (Photo credit: Wikipedia)

I’ve always found smell particularly evocative. Aftershave, deodorant  perfume, baking, coffee, the smell of a meal being prepared, or conversely  the smell of stink bomb in a lift recently transported me back to my school days in an instant!

All of that said, I don’t think I smelled anything in particular this morning when I first woke up. First sound I heard was the shrill monotone of the intercom indicating my carer was outside needing  let into my flat. This was what I first touched as well, this morning, First sight would have been either the picture on the far wall of my room, or the photograph on the same wall as the intercom. First taste was the yogurt my carer brought me when I stirred my tablets into to make them much easier to take.

I don’t know that I would want to have one of these senses dulled temporarily or permanently. The very idea of  taking a potion stirs up memories of Disney films, though annoying, I am unsure which I am thinking of in particular  I have met enough people who have to permanently live with much less than full sight, or none in some cases, not to want my sight to be dulled. Being a wheelchair user, especially if I am sitting in my ‘little’ chair, I often cannot hear what others are saying, and they cannot usually hear me, despite how much of an attempt I make at projecting my voice, or the other person has to stoop in order to hear me. Alternatively  my hearing is often heightened if there is a sudden loud noise such as two plates banging together or a balloon pops it can make me jump clean into the air. This is often highly embarrassing  Touch too, can either make me jump or spasm, or I may do this without even being touched!

Perhaps if i could not taste properly though, there would not be the same temptation to comfort eat!! Imagine if this could be manufactured and marketed; I might make my fortune! It is an interesting question. Over to you: if you were offered a potion which would dull one of your senses to heighten others, which would you chose?

helping hands (over and over again)

friends

I really wish I could answer this as it’s such a great question. It’s also incredibly appropriate to my life, as other people help me several times over every day. However, my mind has gone blank. I can remember snippets of help; two girls who washed dishes for me when I was unwell in my first year at university, others who accompanied me to hospital when I was extra poorly, many strangers who have tied shoelaces, helped me on or off the bus, back into my wheelchair when I’ve fallen out of it… as the cliche goes, the list is endless.

Not forgetting the many people over the years who have made meals, and washed up afterwards. The friends who really stand out are the ones who have done much to help me, just by being them. Those who never give a second thought to helping time and again; always on the end of a phone, or regularly meeting up for coffee or lunch, giving me a break from the monotony of routine, those who make me laugh at the end of bad day, yes, it’s friendship, but it’s friends who do more without even thinking about it. It’s testament to them that no one time they helped stands out. There are a few special ones. and even one special one I can think of who I cannot name here. There are also carers who become friends. though that brings it’s own problems. It’s one thing to help once, and another to help over and over again, so, thank you, my friends. My 30th Birthday Party was so special, because of all of you. Love you all very much!

Exercise, but not as you know it…

I’m aware I’ve done the absence – post – absence – post thing a few times now. I am sorry about it. It’s either been illness or just not having the energy or headspace to write. it had slipped down the priority list somewhat as i might have said before. As of yesterday though, I am determined to begin again.

I did truly want to begin (again) on Thursday, but I was simply exhausted. You see, I woke up achy and sore that morning, more than I had for the past few. I knew I simply had to go though, no backing out, just grit my teeth and get on. And so I arrived at my destination slightly later than expected, more tired than I wanted to be, helper in tow. I handed over the form, which thankfully, this time the doctor had signed the right place, but it was close!! I watched her check the form as i chatted to a physio, and introduced her to my helper. Form complete it was time for the tour. The pool looked lovely, shimmering with heat though. After a short search, one of the physios found us a free room to change in, and off I went. Tracking Hoist next, in my day of firsts. Once in the pool, a cushiony pillow behind my head, I lifted my body so the sling could be detached and the float attached. To my horror, I was being given ‘quite a bit of support’ from both physios. At that point my mind flitted to the past, the monotonous lengths and the medals. After a short time floating, I was helped to stand, supporting myself in the corner of the pool, one arm on each side. The exercises  continued at a acceptable pace, while my mind railed against the simplicity of the moves, things that were once manageable were now embarrassingly effortful. One by one, each one I could manage added to the draft of the ‘exercise plan’.

Eventually, the physio I knew best suggested I swim, so I began to float on my back. Well, I mean I hoped to float on my back, but began sinking fast in the middle, as I had when I last attempted to swim. One of the physios came alongside and explained that she would have to support me while they consulted between themselves how much support I needed. Very quickly, they decided on a ‘noodle’, which the supporting physio quickly added, while asking me to try again, while never leaving my side, and  helping me spin round before I hit steps, or the side of the sitting hoist. We finished with a few ‘warm down exercises’  before ‘chucking out time’. Each person or group of people is only allowed 20 minutes in the hydrotherapy pool due to the temperature/heat the pool must be. ‘Them’s the rules’ as it were. My attempt at using the chair hoist to exit the pool was rather more successful than anyone expected. Someone (I forget who) made the hoist the same height as the shower chair and I simply slid my bottom from one to the other – result!!

Once finally showered and dressed, we opted to visit the cafe before the taxi home. I chose A mug of tea and a ‘lighter breakfast later’ which my helper and even the physio said I had earned.(FYI: this consists of one sausage, a rasher of a bacon, a friend egg, a tomato, some mushrooms and a tomato in place of beans). I decided there and then to make it my main meal, as calorie wise it seemed the most sensible thing to do.

Once in the taxi, it was not long before sleep beckoned.’ Sliding out of the taxi, my helper told me I was ‘asleep on my feet’, Making an effort, I got to my door in my little chair without falling asleep. The helper made up some dioralyte and a coffee, and went on her way, which incidentally I didn’t drink. I slept sat up in my chair for three hours solid. After this I cooked and ate some pasta before falling asleep again, waking only to the sounds of the buzzer when the carers arrived Having slept so long I decided to say up for a bit. Predictably I fell asleep in my chair, waking when the phone rang. Call finished sometime later I crawled into bed and slept more or less solidly all night, waking exhaustedly.  So far so normal for someone who gets next to no exercise.

Though by now, I’ve had a days grace, I am still exhausted. I fell asleep as I wrote this. I am determined to finish this in good time and attack my to do list after lunch, so I get a good rest tonight and hopefully avoid falling asleep in church tomorrow!! I am already thinking about what to write and auto-publish for tomorrow, so watch this space!

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Hydrotherapy is a form of physio/physical therapy exercise done in a small pool, heated to a correct temperature. The heat is good for muscle pain/spasm/joint pain, and so on. The water aids bouncy allowing the likes of me to exercise in a way I couldn’t on land. It is the least restricting form of exercise and can make a big difference for some individuals. My exercise program includes side-stepping, walking, attempts at pelvic swivels to build some kind of ‘core’ from the natural resistance of the water.

A week of two halves

Grapefruit; 2 halves
Grapefruit; 2 halves (Photo credit: Wikipedia)

A week of two halves, this was

Joy and Pain

Ecstasy and Agony

Mountains and Valleys

Letting out and keeping in

Talking for hours, and keeping quiet

Memories, and things I will never experience

Being there, and wishing I could be there

The seen and the unknown….

loving and praying despite it all, because of it all

Until Next Time

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This post is part of Five minute Friday. Please leave a comment on this post below to encourage me and then take part yourself. Simple!