Yesterday’s daily prompt was as follows: On the interview show Inside the Actors’ Studio, host James Lipton asks each of his guests the same ten questions. What are your responses? What is your favorite word? onomatopoeia What is your least favorite word? twerking What turns you on creatively, spiritually or emotionally? anything that inspires me to write. Could be […]
Pick three of them as your blog title. Now write!!
My ‘ten words’ are my rather hotch-potch to-do list for Friday, just gone. Not being very together in recent days due to a medication increase, I have to be kind to myself and take things one day at a time, while sleeping lots and trying to handle whatever the day throws at me. It’s fitting that there was a ‘daily prompt’ to match my mood.
I love baking. It is a hobby that lifts my mood, however I am feeling, and there is something delicious to eat at the end of it. It also makes me feel ‘normal’, connects me to the side of the family who bakes, and uses leftovers! What’s not to love?!
On Friday, I made banana loaf, which I have made many times before. It is one of the foods on my ‘snack list’ from my dietician. I adapt it to have half wholemeal, half white flour in and use buttermilk to give it a unique taste. I do follow a recipe to make it though. Today I made soda bread and rock cakes with cranberries instead of raisins, and half a teaspoon of jam in the middle.
I was supposed to do lots of writing to do this weekend, as I think I explained in my previous post. Firstly this blog post, a competition entry for Tearfund’s magazine, a testimony piece, and a blog post for ‘Big Bible’. Instead, I did lots of sleeping. I wish I could say I felt better for it, but this morning, it took me a long time to wake up and every part of my body ached. Over the course of the day, it has eased a little, meaning I can get on with the writing, but I may just eat a couple of jammy buns to ease the rest of the aches and pains, and keep me on task!
Only writing three times a week now means I have my pick of the ‘daily prompts’. This one is from the 18th, and it goes like this:
What have you been putting off doing? Why?
There are all sorts of things I put off doing, and all sorts of reasons for it. On my ‘good’ days I get a few things done, and I have resolved to also do a couple of things on those days which I may have put off. On bad days however, my “shoulda, woulda, coulda” list just gets longer. Things that I think I can put off I do. The trouble is, not being an organised person there is no logical reason things end up on that list, even things that should only take a short time to do. Even on the good days, I never know when I will need a nap. At the moment this is a ‘good’ day, or at least a good morning. I will be exhausted by the afternoon. If I only prioritised things that really needed doing I might be more organised, but I would never get anything done that was just for me. Other days, like yesterday, I fully intended having a writing day, as horse-riding was cancelled. However, I craved company, and sat watching day-time television for several long hours.
This morning, I finally attempted a short story, which I had put off doing, as I genuinely didn’t think my efforts would be any good. The last one I wrote was more than ten years ago in my first year at university. I have other writing projects to attempt. The magazine Tear Times is running a writing competition, and their editor Peter Shaw tweeted me to let me know, and ask if I had seen it, and if I would think about entering. I was very daunted to even begin, and I at this point I have only written a very rough first draft, having forced myself to write something very late one night, having taken several days to think about the brief. I am worrying my entry will not be up to the standard of the others! This is something that plagues me and one of the reasons I put off starting a blog for so long. However, some lovely people have said some lovely things about my writing, so I am beginning to have a little more confidence with it.
I also have a 500-word testimony to write for Christian disability charity Through the Roof which I have put off as the deadline is after the one for ‘Tear Times’. I have a head start on it as I previously wrote a testimony of the same length for Christian Radio Station UCB, which was read out by Mike Rimmer as part of a section called ‘My Story’.
The big project I have really been putting off doing, however is this: For several years, various friends have suggested I write a book. The very idea terrified me. Who would want to read it? Now I have written a blog on and off for a year, and a had a not very subtle push from specific friends, I am beginning to think about it. However, old habits die-hard. I am still tempted to shrink into the background again. Even short blog posts are such an effort most days. However, others who have recently submitted first drafts, or who are currently writing them, have inspired me too. I have yet to decide what style of book it will be. This I do know; that I will write about what I know… and my faith in Jesus will also play a part. Without measures of healing throughout my life, I would not be here. I am on roughly my 7th or 8th chance at life.
While at university, particularly the first time round, my ability to procrastinate was well-known. I was the Queen of Procrastination. To my shame, I admit I submitted some essays late which horrifies me now.A friend once bought me a ‘little book of procrastination! Were I to start over, I would want to do things completely differently. I would always start each year, or even each semester with that intention, and every semester I would fail spectacularly. Ill health had a part to play in this, as this was round the time hospital admissions began. I was also starting to struggle with my mobility and be in more pain, and it was three years before I sought help from a learning assistant for things like typing, accessing the library and so on. I didn’t think my disability was ‘bad enough’. I did not want to admit to myself how much I was struggling. However, I began to have panic attacks. Eventually I gave in and accepted some help, however, it did not really help with my lack of organisation. Even during my Masters degree I had all the same struggles, despite best intentions to the contrary. Ill health also had a part to play as I got poisoning which put me in isolation in hospital, and exhausted me for months.
However, none of this ever sat easily with me. I read a bible study about procrastination very recently which said Christians have no excuse for putting things off. Even though I know this, it still has a hold over me. Whenever I do manage to complete a ‘To-Do list, or even the majority of one, I do feel a sense of achievement. Failures from the past still haunt me. I think “I managed so and so, but I didn’t manage this, that or the other…”. I have started to use the ‘schedule’ feature on WordPress, so I can write posts one day, but they are not available to you until a couple of days after that.
I hope one day, to conquer this bad habit of mine, with Jesus help. Until then, however, i will still have my “shoulda woulda, coulda” list. As for when you can expect the book, your guess is as good as mine. You do have my word I will start on the book soon, though just remembered a monthly writing commitment…! Will I ever beat procrastination?!
The bright colours of the playground are at odds with this little girls mood. She shouldn’t know how to think this deeply this young. Weighed down with care, she has few friends. The green creature is the stuff of her nightmares. She knows nothing of Pinocchio, a friendlier creature with a similar length of nose. She should bounce with Tigger, and eat honey with Pooh, but no-one will read her the story.
This little girl used to dream of a better life. What it might feel like to have a mommy and daddy who loved her, read her stories and played with her. Instead, some days she has to scavenge for food. She does her best to hide, not wanting anyone to notice her for fear of what will happen if her momma is in one of her moods. There are no scars on her face or her arms as they would be noticed by others, and then they would know. She is waiting for her momma to come out of the building next to the roundabout. She would rather sit there forever and not go home with her momma, but go home she must. Maybe one day, she will escape the horror, and the pain, but what if someone never notices her?
What if someone does notice the little girls withdrawal, and the heaviness on her heart, and raises the alarm? Maybe then she will find a family who loves her, plays with her, and feeds her home cooked meals. Maybe then she will learn how to dream again, but we will never know.
I wrote this (very) short story for the Weekly Writing Challenge. I was to write a story based on the picture above. It was my first attempt at a proper story in a very long time! I am sure you can do better! I would love to read it!
A comment left underneath the post I wrote about Standing Out Sitting Down said how insightful the post was, which has given me some confidence to attempt this prompt from the 14th August:
Think of your blog as a mirror: what does it reveal? Consider your blog name, theme choice, design, bio, posts… what does every element tell you about yourself?
The title, ‘sat n all that’ was actually thought of by someone else. One of the carers, actually who I don’t see now but they used to have loads of shifts with me. The blog started as a project to take my mind off things round the time I was struggling to adjust to changes in my circumstances, and to give me another purpose to my day. I find it a little easier to think of titles now, but found it impossible in the beginning. The title started off as ‘I may be sat, but I’m all that’, but I felt it wasn’t snappy enough, and wanted to write about more than just being sat in a chair, or only about disability issues. After all, my life is more than these things. My life is not nearly as varied as I would like; ‘special someone’ is no longer on the scene, I am unable to work, and I’ve even had to cut down on the blogging, to keep up with it. However, I have amazing friends, a great church family, and have more interests now, so do still have variety of people of things important to me to write about.
The design started as something else, though I can’t think what it was now. When choosing a theme, I wasn’t really bothered about the aesthetics. I wanted something clear and easy to read, so as wide a range of people could get access to it as possible. As ‘barrier-free’ as it could be without designing a site myself from scratch, as a few friends use screen reading software, and I wanted anyone who read it to be able to get access to it on whatever device they use to surf the web. That says a lot about me, really. I’m an open, friendly person, and I find a lot of purpose in reaching out to others, in whatever small way. Plus, a lot of disability access is an afterthought, and not from the outset, and I wanted to think about it from the beginning.
The theme is trickier. I like the idea of being a ‘niche’ blogger, and I guess I am in some ways as I write about disability, or faith, or more often, disability AND faith, together. Both are integral to my life, and intertwined in many ways. My faith in Jesus is central to helping me cope with my challenges, and my challenges deepen my faith. I didn’t want to write narrowly on just one theme, as I lacked the confidence to think I could come up with posts easily enough on just one theme… plus, as I say, I couldn’t really separate the two, so I am much happier with a ‘hybrid’ blog. I think, now the blog is a year old, and though there have been stretches of about a month at a time where I have written little, I am more comfortable with the themes I write about these days.
If you look at the ‘tag cloud’ to the right of a post, the topics I write about most are in bigger letter than subjects I write about less often. At this time, the topic in the largest lettering of all is ‘disability’. I am not entirely comfortable with that, as there are so many bloggers out there with a disability, people who have campaigned for years, advocated for others, been active in politics, and really know their stuff. I feel so intimidated by that because I worry so much that their writing on disability issues is so much more informed than mine, and what right have I to write about it so often when any of them can do a better job?
This is partly a complete lack of confidence, and a desire that if I bother to write at all I want to write informed, quality content; otherwise, what is the point? I guess it is partly about perspective too. It sounds idiotic to point this out, but obviously no two people who live with a disability will have the same views even, on their disability, so it stands to reason both will be able to offer different perspectives. I find it absolutely unbelievable that my most popular posts have been disability related.
The first post to which substantially more people read, and the first shared more widely, was one I wrote at the end of last year, about David Cameron’s speech at 2012’s Party Conference. Specifically, focussing on two little words he used: ‘Compassionate Conservatism. Now, a complete oxymoron…!! This particular post was also (he claims!) read by my MP, – WOW! My most popular post ever, I wrote very recently, about not being able to work, and trying to address the popular thought that if some severely disabled people can work, then why can’t every disabled person do likewise. To my amazement, this post was shared around upwards of 100 times, and has been viewed 400-500 times, at least! I’d never have thought my most popular post would be about these things, rather than something completely personal or something faith-related that I feel I know more about. I suppose I just am ‘myself’ when i write, as much as anyone can be, of course.
Another post read a lot is ‘The days that changed my increasingly complex life.‘ It was the first time I wrote about something really personal, and what I thought and felt about it too. The reaction to it really surprised me, as some people got a lot out of it. Those kind of posts seem to be the ones that really strike a chord with people; again, something that surprised me. It was reasonably natural, though tough, and painful, to write about, as I am very much a ‘heart-on-my-sleeve’ person. In some ways, the people who read this blog have shaped what I write about.
I used to answer more of the ‘daily prompts’ provided by WordPress, as i lacked the confidence, and often the inspiration, to come up with my own topics. This has got easier as time has gone on. Also, given the squeeze on welfare claimants that is about to get so much worse, the stereotypes peddled by the Government, and some sections of the media, and the ‘hot potato’ that is the Welfare State, the topics offer themselves at the moment, and it is also topics that are a big part of my life, whether I want them or not. No benefits, no money, therefore no independent life. As my Mum says, they didn’t bring me up to sit on the sofa for the rest of my life… so I really value the semblance of a life that I do have, and it gives me much more to write about than if I sat on the sofa the majority of the time!!
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.
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.
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.
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!!