Sometimes, I identify with the ‘daily prompts’ so much I just have to answer them. Yesterday’s prompt was one such time. It went like this:
When was the last time you really stood out in a crowd? Are you comfortable in that position, or do you wish you could fade into the woodwork?
The last time I stood out in a crowd, I was with ‘special someone’, who I have referred to somewhere in these pages before. Nowadays, if I am in either wheelchair, I don’t stand out so much because there are so many scooters and wheelchairs around, especially in the likes of the newest local shopping mall. Except, whenever I was out with with special someone, as you don’t often see someone in a chair holding hands with a boyfriend or girlfriend. I once saw a young woman about my age holding hands with her boyfriend. I remember her because she had exactly the same make of chair as I had previously. It struck me at the time how natural they looked. Unexpected, and yet totally ‘normal’ at the same time.
That’s kind of how I felt being out and about holding hands with special someone. We must have looked really odd in the middle of the crowd, especially given my youth, as it is fair to say the majority of scooter users at least are ‘of a certain age’. It also means even my neighbours ask after them because they remember looking out of their windows and seeing us holding hands – unusual enough that they remembered. Even more people I have to tell that we are no longer an item, just increasing the pain. However, I have to say, looking back, it was the one time in my life I did not mind standing out sitting down.
English: NASA StarChild image of Stephen Hawking. (Photo credit: Wikipedia)
Last year a majority in the British Medical Association have come out in support of disabled people, declaring the Work Capability Assessment (WCA) unfit for purpose. Additionally, after many months and much campaigning by disabled people, ATOS Origin, The French IT company given the contract to oversee self assessments and carry out face-to-face assessments, have been forced by the Department for Work and Pensions to retrain their staff. This is even after previous insistence that everything was fine and ATOS would not be fined, despite appeals overturning the previous decision that the person concerned was fit enough to work costing £66 MILLION in 2012-13 alone!! A report published by a coalition of more than 90 Disabled People Organisations and Charities in 2012 produced a damning verdict as to the impact of assessments and cuts on disabled people. In particular:
Nearly 9 in 10 (87 per cent) welfare advisors said the constant re-assessments for benefits are damaging people’s health
9 in 10 (90 per cent) welfare advisors said that too many disabled people are slipping through the net and are left without adequate support by the welfare system.
Mencap have also raised concerns over whether there is enough understanding of the way learning difficulties affect people, and how this impacts on a person’s ability to work.
Despite all this, GP Philip Peverley has recently claimed that: “I had considered, at one point, putting, up a portrait of Professor Stephen Hawking in my consulting room with a caption that said, ‘This bloke is not on the sick’.” To those who are entirely unaffected by the benefit cuts, and have no reason to disbelieve the skewed headlines produced by some sections of the media, this kind of statement may well make sense, and is the kind of logic behind the Goverment’s portrayal of benefit claimants as ‘scroungers’. However, to think this, and indeed, to declare it publicly is to completely gloss over a whole host of issues which he may well know nothing about which prevent disabled people accessing work, and a host of medical issues which make work difficult, some of which I have described below, This is to say nothing of possible discrimination, access barriers including need for specialist equipment not covered by Access to Work Grant, difficulties getting to and from work, and lack of transport to get there, extra costs, pain, fatigue… the list goes on.
I admit there may be some truth in some of what he says including that some people well enough to work to everything to prove they are too ill to do so. If there weren’t there would be no need for reforms, however, the levels of fraud are not nearly as high as the Government would have you believe. However, according to the article, “A poll of 4,000 family doctors by the Department for Work and Pensions in May showed three quarters feel that – even when there is no medical need – they are obliged to issue sick notes to patients”. This may well be true, and it is not the first time I have heard a GP asking that they could opt out of assessing patients fitness for work. If not they, then who? GP’s position as ‘Gatekeepers’ to NHS services makes them ideally placed to have overview of the main issues affecting a patient and the clinics they see and services they receive. I have already established that ATOS are in no position to do this on GP’s behalf, despite Peverley’s claim that “ATOS nearly always gets it right”!! He has also failed to acknowledge that Hawking is able to to pay for costs associated with his disability in ways that the majority of disabled people can only dream of. Money means access to better care, better food, higher quality housing and a better quality of life in general. This will have a positive affect on his impairment, despite its severity. He is so intelligent he can work using his voice only and has all the support he needs, something very few disabled people can say. Journalist Sonia Poulton‘s response to this article was to post a tweet containing Peverely’s reg. number for the General Medical Council for anyone who wished to complain!!
The last time I worked was in 2004. I did the kind of office job referred to in the article. I did full time (8.30-5.00) work for 6 weeks to cover sick leave, in the summer holidays while I was a student. For two weeks, I walked to work while my parents were on holiday, or I got a lift from colleges if they passed me on the way to work. Otherwise, my Mum drove me there and back. I don’t remember if there were steps in front of the building or not. I do remember that there was a lift. This was in the days when I was still on my feet, without a walking aid, or a wheelchair, except I used a scooter in term time to negotiate university grounds. I was also on minimal medication, and no prescribed painkillers. This was the year before my diagnosis of Chron’s disease too. This is all significant, because by the afternoon, I would have severe shooting pains from my hips to tips of my toes, and often stomach cramps too. I would be so tired I would have uncontrollable giggles, and my speech would be slurred. How very professional. I struggled to concentrate to do meaningful work, and I made mistakes. I was never disciplined over it though. Clearly not capable of office work, despite this doctors claims.
What about if I were to attempt this work today? Well, before I got to work I would have to be up very early because it would take me a long time to get ready. If my carer phoned in sick, the office may not be able to cover it, as I am often the first name on the rota, and not every one can work that early. Even with care, I often have to go back to bed to sleep off the effects of a disturbed night, or the effort of getting up and organised. If I did not do this, I would be asleep at my desk. This is often the case even try to write blog posts, which is why there was no post on Wednesday this week.
What about getting to the office? I am unable to drive because the part of my brain responsible for spatial awareness is too damaged, and reaction times were so erratic in the simulator during my driving assessment the Occupational Therapist advised that I would need to use hand controls to be able to drive but that I lacked the necessary co-ordination. Getting the bus is also out of the question, as I do not have the strength to propel my annual wheelchair on my own, and my electric wheelchair is too big. Taxi it is then. However, most taxis are the wrong size or shape to fit my wheelchair, and those it will fit are in demand. Even if I can get one, there is often no space between my head and the roof off the car, causing me a head injury if it crashed. I have been in town before, and even though I have pre-booked a taxi to take me home, none will turn up. I would need a motability van, but as I can’t drive myself, I would need a PA to drive one for me, even though funding is being squeezed in every budget including Access to Work, and the list of things which can be funded is now minimal. Add in cuts to social care and the disappearance of the Independent Living Fund in 2015 and this is an impossibility. (To read about the impact of these cuts on another disabled person, click here to read an excellent piece for the Indy’s Comment is Free by Jess Thom).
Assuming I could get there, I would not consistently be able to do any work for so many reasons… My pain killing medication exhausts me, making my speech slurred, and even then it does not take away all of the pain, and I often squirm in my wheelchair due to back pain, and other pain I cannot write about in a public forum. Then you add in the times my ileostomy bag bursts (which I cannot change by myself, and the bladder spasms causing me to wet myself. Have I forgotten anything? The last time I filled in a WCA form there were at least 3 or four extra pages of close written small script explaining my disabilities and the effect these have on my day to day life, including all the equipment I need to help me. Still think I can work?
Of course, I would love to be able to work, but at the moment is something I can only dream of. One of the reasons for starting this blog was to give another purpose to my day. I have been surprised and delighted to the response from my first post for a few weeks, about childhood dreams. Before you lose the will to live, I shall go off and take my medication, as the dispenser fondly known as the UFO is making itself heard! Until next week…
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.
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.
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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!!
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’!!
It took me some time to think of a ‘bittersweet gift’, but then I remembered. It’s actually something very small, but something I used to collect; one of several fridge magnets. It is rectangular shape with a white background, and it reads “You can take the girl out of Scotland but you can take the Scotland out of the […]
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.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?
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!
sat n' all that 