I don’t actually remember what I wanted to be when I was growing up. It took me until the age of nine to be walking unaided without any supports on my legs! At that point, I just had arch supports in my shoes, which I hated so much I refused to wear them. They did hurt my feet terribly tho!
If I remember back to playground games with my friends or ‘imaginary play’ indoors, from what I can remember most of it involved pretending to teach. I do remember filling in a long form in my final year at school which was sent of, my answers were analysed, and the careers advice they gave was that my personality and gifts were best suited to teaching. The careers adviser pointed me towards Stirling University, who at that time were the only Higher Education Institution offering the Bachelor of Education certificate alongside an ordinary arts degree. As I have blogged before, I did go on to do this course for three years. Despite giving it my all, I subsequently failed and was chucked off the course. The emotional fallout and impact on my life, and my dreams was devastating. If fact, it’s not too dramatic to say it was actually life-changing, one of five days to be so.
Fast forward about eight years, and my life has totally changed. Any childhood dreams are in tatters, as I am now unable work, and my life revolves around visits from carers, nurses, trips to hospital for appointments, home visits from specialists, and form filling. This blog, my family and friends, and my church family are the bright spots in an otherwise ‘ground hog day’ sort of existence. As for my dreams, on good days, I still have those, though for the most part they are locked inside my heart. On bad days, I even struggle to blog or fail completely, sometimes for weeks, meaning I have to build up a following all over again. I refuse to let any of this beat me. My Jesus has promised me an ‘abundant life’, which I continue to pursue.
When I look in the mirror, Ino longer recoil. Most of the time I like what I see. The teenage, pussy acne is gone. In it’s place is a pretty face. Nothing too out of the ordinary though. I remember in my teens, my mum standing with me in front of a mirror telling me I was pretty. I know this kind of thing has been bashed in the press recently as encouraging arrogance, vanity, and esteem based on looks. That day in front of the mirror really helped me though, which is partly why I’ve never forgotten it.
When I look in the mirror I see the face God made, the smile people are attracted to, the person he created me to be. My face is the one part of me that is not disabled in some way. I do refuse to have a full-length mirror in my house though. I hate to walk (shuffle, really) past them due to my wonky posture; my backside sticks out and my knees are twisted… it says to me, ‘spaz’. I was once at my mum’s friend’s daughter’s birthday party in my teens and walked past a full length mirror in the ladies’. This is when I first realised the wonkiness, and wondered, is this how others see me? It is something which, rightly or wrongly, has almost haunted me in a way. When I pass a mirror, I prefer to sit in either wheelchair as, although I am sat, my posture looks more ‘normal’. I wonder if anyone else out there who has a disability sees themselves that way?
When I look in the mirror, I one day hope to only see the person God made, with none of the twisted knees, sticky out backside hangups. I guess most people have hang-ups about the way they look. So far, so normal!!
I wrote the following yesterday (Monday). I just got sick and didn’t post it, so here it is now…
Oh goodness. Yesterday’s daily prompt question is a rather pertinent one in a world where ‘abnormal’ is penalised, and ‘normal’ is praised. To be different in some way means you are not normal.
As a disabled person unable to work and reliant on medication, mobility aids, wheelchairs, and physical help from others on a day-to-day basis I am all too aware, I and my life, are far from normal. It is not ‘normal’ for someone as young as me to be unable to work. Medically, my body has never been normal. From the day I was born until the day I die, my body falls far short of ‘healthy’, and short of physical ability in day-to-day life. I am grateful I am healthier than I could be… though not as healthy as society thinks I should be. In these senses, I am not normal.
Who decides what is ‘normal’ though? This Government are penalising anyone who is sick, disabled, old, those looking for work or unable to work, poor, needy, or homeless. by labelling everyone in these categories as scroungers, and therefore somehow not trying hard enough to find work, or work that pays well enough to support a reasonable standard of living. It is ‘normal’ to be able to provide for your family, or pay your own way, in my case. It is normal to achieve certain grades in Education to go into education or training. Anyone who fails to do this is called a ‘NEET’ (Not in Education, Employment, or Training). Anyone with requirements different to other children or teenagers has ‘special’ or ‘additional’ needs, and generally, their parents have to fight for every bit of help their child gets. If you would like to read more on this, I can recommend Jane Raca’s book, Standing up for James in which she writes of the struggle to find and finance adequate education provision for her son, and the failures of social services, especially if your family is going through similar struggles. (You can read my review of her book here). I did hear the other day that Katie Price’s request to begin a ‘free’ school with other parents of children with special needs had been rejected. Begun because there is not enough provision for children with complex needs, a claim also made by Jane Raca, though I cannot quote her directly unless I find my kindle before I publish this post!!
Personality wise, I have always been just the right side of daft. Life is more fun if you can laugh at yourself, and if you can handle tough situations with a degree of humour, it all helps, in my opinion. In this sense, ‘normal’ is boring. I would love to be more sensible and more organised though. In some ways I still feel as though I live and think as I did when I was a student, and in other ways I have grown up. I think that is a lot to do with not being able to work. In that sense, I am not ‘normal’, and here, I would wish to be. Spiritually, I tend to agree with the late, great, Mike Yaconelli. ‘Messy’ is best, and Jesus is right with us in the midst of it. I read a great post the other day to do with authenticity in church, and faith. I think I may have already linked to it in another post, but it is worth another mention. I definitely think Mike would have been the same in whatever sphere of life he was in at the time. People who can do that and get away with it are oftentimes, (though not always) my favourite kind of people because there is no ‘normal’, around them, and you never know what will happen next. Life is an adventure. I happen to agree. So did Jesus, who didn’t do ‘normal’ either. He hung out with the very people society shunned, when there was nothing to gain from doing so. Me? I prefer to aim to be like Jesus; life is more fun that way! “I have come that they may have life,and have it to the full” (John 10: 10)
Today’s prompt is a difficult one for me. I would like to be private online and have a small digital footprint, but at the same time, my natural way is to be open and chatty, so I wonder, how do I manage this online, and with what consequences? Especially when the big companies (Facebook) sell my data to advertisers… not so private anymore, huh?! I read a post on the Big Bible website today which really made me think, and touched on one of my deep-seated, greatest fears:
Anything we say online can be stored, captured and almost guaranteed to haunt us later.
If anything makes me wish to be incredibly discreet, there it is in black and white. Being a natural worrier makes this fear worse.I do like the practical suggestion in this post that we should type, or read twice what we have written before we share it online.
Talking of being careful what I share, I don’t want to change my relationship status on Facebook. as I don’t believe the mantra that ‘it’s not official till it’s on Facebook!! However, being a blogger who shares memoir type anecdotes and the like, I probably have shared a great deal online just through this very blog. I am ashamed to say, I don’t really know just how much about me and my life is ‘out there’.
There is a great deal stored about me on computer in general, given the state of my health. A few years ago, a computer in a hospital which may have contained some of my information was stolen. No matter how much security is in place, these things will happen.
And what about ‘identity fraud’? Surely the internet has made this far easier. I guess the more you share the more can be stolen increasing the greater the risk of this? You see, the list of potential worries is endless. It won’t stop me writing my blog. I do try to not ‘overshare’ in this blog about others involved in my life, such as my parents as it wouldn’t be fair. I try to protect their privacy though I am not necessarily good at protecting my own. I would welcome your thoughts on this!
Yesterday’s daily prompt caused me to look at it twice! I have often be told that my story would make a good book, or that I should write my story down one day. I guess I have done this in partial way as some of this blog includes memoir style material. As I know who I would love to play the lead, I would love my story to be a book and a movie. Carey Mulligan would be perfect to play the lead in the movie version of the book. Great actress who would draw in the punters, and who has played characters in movies belonging to the drama genre before, including but not limited to her role in the likes of An Education.
————————————————————————————————————-
This biopic certainly includes plenty of drama. More than one near death experience, disability, illness, life-saving operations, love, romance, faith, and miraculous scenes, including a couple of appearances from royalty…. There are also many supporting roles, with a great support cast. There is also potential for future movies given the relative youth of the protagonist… However, let’s focus on this particular movie for now.
Drawing of a film reel (Photo credit: Wikipedia)
It begins with my early life, with me being rushed to a special care baby unit, having been born 12 weeks premature at 28 weeks gestation, following an emergency birth. There is a touching scene early on, and the first of the miraculous moments, which shows the story of how I got my name. Some of the crucial scenes in my early life will keep you on the edge of your seat; including visits to resus, and touch-and-go operations where I was the smallest baby the surgeon had ever operated on.
My early childhood was no less dramatic, as my brain was starved of oxygen at some point before, during or after birth, resulting in a diagnosis of Cerebral Palsy. The diagnosis was certainly bleak, as it included intellectual delay as well as physical disability, and the extent of these was unknown at the time. Consequently, from a few months old until I was 3 or 4 I attended a centre for babies and children with special needs. Here i received input from a pediatrician specialising in Cerebral Palsy, physiotherapy, and specialist care. The next miraculous moment shown on film would be that I had progressed enough to be one of the first children with a disability in my region to attend a mainstream nursery. I would later meet 2 of those who had attended this nursery at secondary school!
Some time after this, there was a house move to Dunblane, where I attended nursery, and went to the same school that Andy Murray, tennis player extraordinaire would later attend!! In my first two years at primary school I had a full time assistant with me due to my level of need. When I was six, we moved back to Aberdeen.
In some respects, my primary school life was largely uneventful when compared to the events of my early life, so this would play no part in the review, though would occupy a few scenes in the movie. Miraculously, I caught up intellectually, and when I was 11, had no further need of the assistant who was with me for four years, as I was able to continue primary school on my own. This caused a ruckus at the time. Secondary school too would play no major part in the movie. There was a house move at age 14, where I stayed until I moved to central Scotland to begin my first degree in 2001. It was here I would meet some of the friends I still have today, and where I would meet my current ‘Special Someone’… though a little more of that later!
The move to university was one of 5 days which changed my life forever, and the events of these 5 days, or even periods of my life, would be the focus of the major part of the movie focusing on my adult life. The only exception to this would include a scene with my childhood ‘adult baptism’, in which I explain why Jesus became the central focus of my life, (or certainly should have been!!) from then on. The next part of the movie would include university days, which showed the beginning of adult illness.
Further scenes became more dramatic, including a move across the border, a life-saving operation, the scene in which I was told I would now require an electric wheelchair full time, and the scene in which I was told I had no choice but to have the ‘care’ I had tried to avoid from age 22 when other disabled friends begin to suggest it, Other scenes include a couple of romances, one on/off romance with a childhood best friend, and another with a former Paralympian!
The movie ended with an update to the present day, showing some of the complexities of life as a wheelchair user who needs help with the basics of life, but has a stellar supporting cast, including the events which explain the introduction of ‘Special Someone’, and the reliance on faith to survive, and thrive through every day, eventful or not. The movie therefore fits the ‘Christian biography’ category, but is far less cliched than some representations of the genre!!
If you could get all the nutrition you needed in a day with a pill — no worrying about what to eat, no food preparation — would you do it?
Answer: NO!!
Here’s why…
For starters, I take so many pills anyway that I wouldn’t want to take any more unless strictly necessary.
I PROPER LOVE my food. I love choosing it, unless excessively tired, I love eating it, and I often love preparing it, again depending on how tired I am.
I would miss the taste of so many things; melting chocolate, freshly baked bread, toast dripping with melting butter, roast chicken, garlic bread, most forms of desert I can think of. I could go on…!
I would miss the occasion of a meal out, or a meal someone else has cooked for me as everything tastes better when you didn’t have to cook it yourself!
Some years ago, I had to have a huge operation, before which the surgeon and his team were considering inserting a feeding tube as they didn’t know if i would be able to cope with food. Having had to consider it, and avoiding it, I never want to take food for granted again.
I can see that, for busy people, an option of a meal replacement tablet might be highly desirable as it would optimise the rest of their time. Perhaps something like that is possible in my life-time. However, for me, it would take a way a significant part of my life. I do a lot of my socialising with coffee and a biscuit or a slice of cake in front of me, with two forks, so myself and a friend can have half each. Somehow it doesn’t feel quite so fattening that way!
Over to you:
If you could take a meal-replacement tablet, would you do it? If so, why, or why not?
A recent ‘daily prompt’ asks about getting ‘lost’ in activities. My favourite hobbies are baking, reading or card-making, and I can easily get lost in any of these. For me, it is about occupying my time in a productive way, but also allows me to forget about the ‘daily-ness’ of my life for a while. For the most part each day is the same, unless I have any appointments at the doctor or the hospital, or physiotherapy. Even these are ‘routine’ to me though as I have done them so often. I am a young ‘old-pro’. I crave variety and spontaneity. Having hobbies is one simple way of trying to vary my day as much as possible. Of course, having care/assistance to go out and about is another way of varying my routine, but sometimes, it”s not quite the same, as it can remind me of the very situation I can need to escape from. For me, this is the whole point of being so ‘in the zone’, completely focussed on what I am making or reading. It is ‘headspace’ away from everything, and time for myself, when I can be so used to having others around. Of course, I can be in the zone when i am writing too. In my opinion, this is when I have written some of my best posts, or articles, depending on what I am writing for. What is your favourite way to escape from routine for a while? Knitting seems to be very popular these days! I’ve tried, but I am left-handed, and lack the necessary co-ordination. Just have to leave it to those who excel in it. I forget what covering objects in woollen creatures is called, so I am off to google it!!
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.
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!!
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’!!
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!
sat n' all that 