Tag: people

fifteen on Friday: people who make ‘snap’ decisions

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Fifteen on Friday is a space where I write about something related to my experience of disability and illness. It stems from ‘five-minute Friday when I followed prompts set by the originator of the site, and I do this with her blessing. It takes me fifteen minutes often, to type what others would type in five, usually just because I get so tired!

They don’t know me like I do…

This week, it’s a subject that really riles me, and so I will do my best not to rant. I should acknowledge as well, that I do this too, though I shouldn’t, given how annoyed I get when people do it to me. So what is it that so annoys me? I can’t stand people making ‘snap’ decisions based on a snippet of information, or on how I look, specifically snap decisions on the severity or lack thereof, of my disability, or that I ‘look’ healthy, so I am healthy, which just drives me mad. Someone else said recently that ‘I hide being ill very well!’ I think so too!

It would be a lot easier to say, ‘I know the truth, and it doesn’t matter what anyone else thinks’, but I’ve always cared. My friend known as ‘Chronic Rants’ blogged how it bugs her people always have to see the negatives in new treatments she tries, or tell her horror stories of how it went wrong for their friend’s friend, their mother, or who ever. Again, people making snap judgements based on a little information. Chronic Rants admits she does it, far too often. I do too. It still smarts when I am on the receiving end.

But you don’t look disabled!

If I am sat in a chair, or laid in a bed, I don’t ‘look’ disabled (nor would I want to). The irony is, neglect to take my cocktail of tablets and I look very disabled indeed, flailing about with arms and legs, shaking when I hold anything, doubled over in pain (which I often am even with the tablets). People see me looking ‘normal’ therefore and think ‘her disability is not that bad’ and voice it. I’ve even had a consultant pummel my arm years ago trying to find a vein, with me almost in tears ‘what’s wrong?’ he says.

‘My arm hurts a lot, cos I have cerebral palsy’

He says, incredulously, ‘You have cerebral palsy? Nobody told me (no surprise there!) But you don’t look like you have cerebral palsy’.

He’s not the only one. Nurses have made me walk because I don’t look disabled enough to need a hospital wheelchair, so I’d only have to walk the wee bit to the taxi) and others have asked ‘But how do you manage at home?’ Erm… that’s the point (of asking for help) I don’t. I have invisible disabilities, but I also have a physical disability that looks invisible in certain situations… weird!

However, they don’t see the exhaustion after a few steps, the physio does, or the pain shooting down my legs from trying to stay upright with a Zimmer frame after said steps. They don’t see all the things I can’t do that I have to ask ‘sidekicks’ to do, while wishing I didn’t have to ask so often. They don’t see me doubled over in pain, the professionals in and out of my flat, be they joint care manager, agency manager, nurses, ‘sidekicks’, other nurses for appointments, and house visits from doctors when I can’t even make it down a street or two to the surgery.

Yes, I know, I should put the violins away now!! I am thankful that I can talk (though others may not be when I just don’t shhhh!!), I have an electric wheelchair to get about (though it doesn’t fit in taxis — another story!) and I can move my arms and legs enough to do some things (eat, drink, choose lighter weight products in the supermarket, drive my wheelchair (badly…!) and so on.

It’s something I have to live with, but that will continue to bug me! I guess we all have pet hates like that!

how would you answer these?

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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 […]

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Five Minute Friday : Truth

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These last few weeks especially, I’ve had to deal with an awful lot of truth: Companies you depend on let you down, equipment you rely on breaks irreparably too often for comfort, people you thought you could trust let you down, others you knew for a long time betray you or move on, illness takes its toll, so where once you could cope, you now feel you are hanging on by your fingertips. Migraines, pain, dehydration, fatigue; it all takes its toll, and suddenly you find yourself running… running to the only One who is big enough to take your burdens from you, and in time reshape and reuse them for good.

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Photo Credit: http://www.sxc.hu/gallery/jamesclk

Fleeing to the One who is Truth has brought comfort and rest – ten straight hours of it in one 24 period. Books of morning prayers, a devotional on pain, daily devotional notes of various kinds and other Godly books have allowed Truth to seep into my soul, and to know the One who is Truth is helping me through days of illness, appointments and fatigue in ways I thought I could never do… Truth is, I know One who will never leave or forsake me, and who has not allowed me to drown in the water.

If you are struggling today, seek out the Truth, the only One who can help. The website www.lookingforGod.com is a good place to start.

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This post was written for Five Minute Friday. Do check out the ink and have a go yourself, I’d love to read it. Comment below with your link!

With every breath…

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Today’s daily prompt:

Who’s the most important person in your life — and how would your day-to-day existence be different without them?

I am wary of repeating what I have already written on this subject, as I have already written recently both about having no significant other (yet!) and how important my Gran is to me. Then, of course, there are the/my carers. Without them, there are some days I would see no one, and other days I would struggle to get out of bed. The other people I don’t think I have mentioned are my parents. There are other posts where I may not have mentioned them, but without them, I would not have achieved what I have. Their sacrificial, unconditional love would be the envy of many.

Were I to lose either or both I would miss them with every breath. I need them in a different way that other people need their parents. In some ways I still feel quite dependent on them, being single and disabled. This also means I do not feel as grown up as I might, with a significant birthday approaching. What I do manage, at the moment, is to live independently thus far. Time, my health and the actions of local and national government may yet change things. I don’t wish to talk to much more about my parents as I do not wish to embarrass them. However, they have done much for me and continue to do so. This includes te way both of them live out their faith and the example they are to me. As I’ve said, were I to lose either of them, I would miss them with every breath, every moment of every day.

From Nothing to Something

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I am dreaming big dreams…

Daily Prompt: A Plot of Earth

.You’re given a plot of land and have the financial resources to do what you please. What’s the plan?

Wednesday’s daily prompt is a ‘no-brainer’ for me.  I immediately knew what I would do. My church has looked for land for sometime. Not just to do the obvious; build a church but also a new kind of community centre where people can go to spend time there, or groups can meet. There’s not anything else like this in the area. There is not much to do otherwise. There is a small café run by a local church. A Godsend. There will be the new health and well-being centre too which is partly funded by the supposedly broke local council. Perhaps this will fulfill some of the need, who knows. Even so it can’t meet the dire spiritual need.

People need to know they are loved

There a lot of elderly people round where I live, because everything you might immediately need is in a compact area, so there’s no need to walk far. A small supermarket, two doctors surgeries, good local bus links. You have to go anywhere, really to be able to do something. There is a small outreach thing for older people who I considered volunteering for, but I don’t think that is enough. In winter, lots of people are in even more need. In the winter of 2010, lots of people had no way of getting basic food shopping and heating, as many seem to have pre-paid meters. I’d love it if we were able to provide extra groups for elderly people, just somewhere for people to go, have a cup of tea and some company, maybe get help or advice. No agendas other than being there for people. It would let me set up a group for disabled people too, as there is no accessible venue which is not in a church, the local community school being adverse to ‘religious people. I don’t know what else we’d want to set up.

We are fortunate, that in general we have somewhere to meet on a Sunday. It’s award when that goes wrong, and I know church as a whole would love to be able to do more. At the same time Church is full of busy people and I am not sure we would have time for all this. We know though that there are many people in need on the estate that just need to know the Saviour’s love and acceptance  more than meeting basic needs like providing food, or debt advice or a listening ear. In the absence of a land-fairy, I will keep dreaming of a transformed place of life, hopefully in this life, and not just in the next, as we are called to live sacrificial lives. One day…

hanging on for dear life…

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Image

This is what I see

I wanted to write a short story based on this picture, but I lacked the courage! I noticed the couple first, then the graffiti, then wondered what the buildings were further down the street, are they shops? They certainly look inviting, whatever they are. Then I looked at the couple again, but then I looked away, as in embarrassment,  as though I was staring at something private. To me they look like they are clinging on for dear life, time has stopped, all they are aware of is each other.

Gate-crashing a private moment

I haven’t ever felt like this… not as fully anyway. Somewhere near it recently, though not the real deal, as the feelings have faded. I cannot get the picture of the couple out of my head. It was some time before I noticed the ground they were on was actually steps. They almost look pretty. I briefly wondered how long it would take me to descend them, if I passed the couple. I can’t shake the feeling of looking in on a private moment. It’s almost a PDA (Public display of affection. I HATE PDA’s, for the record.) Everyone else in the picture looks as though they are going about their business, tourists on the other side, deciding where to go, what do first. Still I cannot forget about the couple.

The picture makes me…

Looking at them makes me feel wistful. A bit wistful that I wish I had what they have, but mostly because more than one friend I considered myself close to has recently found The One and with the exception of one, haven’t seen the other for ages. They were, are, friends I relied on partly because they’re ace and I loved them to bits, partly because they were sympathetic to my semi-housebound state and would visit gladly, and often.I’m having to readjust my feelings, make other friends, find other ways of coping. Does that mean I relied on them too much? This doesn’t necessarily mean I am lonely, it just means I miss them, LOADS. When I wrote about my friends last year, two of them were most definitely in that group. Don’t get me wrong, I am happy for them, I absolutely am. Which I why i am leaving them all alone for the most part, to get on with it, and missing them from a distance. Sometimes, I leave a voice-mail, and sometimes I suggest meeting. Mostly, it doesn’t help with missing them, but hoping this feeling will fade. Of course, I’m also hoping it’s my turn one day, as I wrote in an earlier post. For now, I will let the people in this picture get on with their day, and I will go back to mine, leaving the couple in the picture to enjoy their embrace in peace.

p.s. It also makes me want a holiday somewhere in Western Europe. Definitely time to go back to my day!

This post is in answer to the ‘Weekly Writing Challenge’. If this picture inspires you, why not write your own post, I’d love to read it!

People mostly… (and horses)

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I started writing first couple of paragraphs earlier this morning, but the router has been falling over even more than me this week, and it was more important to have bible time than to faff with t’internet!

What haven’t I blogged about this week?!

Normally I have been known to write an average of one “this was the week that…” post in my week. Normally on a Saturday, or a Sunday if I’m being naughty. I did wonder if there was any need for me to write one of those post this week seeing as I’ve already blogged more than usual. I’ve talked about the paralympics, though I’ll have to stop that now this is the final day (sob!) I’ve written a couple of commenting-on-the-news posts, mostly about Rimsha, the 14-yr old girl with learning difficulties being persecuted in Pakistan. There was also, selfishly, the soul-baring post I wrote earlier this week on “The (5) days that dared to change my life”. I have been overwhelmed with responses… mostly in people’s kind comments or tweets, or just that people have read it at all… have been overwhelmed by how many people have read that particular post, cheered when I’ve realised how many people have been interested in reading about the paralympics, and heartened when I realised how many took the time to read about, and hopefully pray for, Rimsha. Please do continue to pray for her and for her family, or to start doing so if you haven’t already. Other topics I blogged on this week are things I am likely to write about in the future, like falling, for which I could compete for a medal! As far as Christians being tested for their faith, I have written about cases recently appearing in the European court of Human Rights. We in Britain know nothing of what it is like to be singled out for our faith though. Please pray for those who are. For prayer pointers, please look at the eebiste of Open Doors UK

 “Nowt so queer as folk”

The main thing I have yet to blog about are the other three main activities this week. Encounters with people, learning about the magnificence of horses, and the supporters day for a local Christian Social Enterprise.  First thinks first. I spend a lot of my week managing people. This could mean all manner of things. For example phoning people to arrange appointments, pay bills or phoning nurses, friends or carers for help! I have already talked twice in this blog about care, but I spend much of my week managing carers. Worrying, before I get the rota that week, exactly who will be turning up and if they will be trained to meet my needs or if they will wing it. This week, I went swimming for the first time this year, which you can read about here. The only thing I neglected to mention, is that I’d happened to say to the receptionist I would be exhausted when I came out of the pool. So Emma said and why’s that. I thought oops I’m going to accidently embarras her here. I quetly said it was because I didn’t have my manual wheelchair. ‘Of course you don’t she said. “So where is it? I forgot because you loooked so natural weith the zimmer!” How are you supposed to look with a zimmer exactly?

Horses (I love then to bit at all times, except when they tear lumps out of my chair!

The other exercise of the week was my horse-riding lesson which I spent re-learning some basic dressage ateps. I thought I did pretty well. The worst bit was, I tried to make like a papralympian, in this case, the beautiful Sophie. I have no idea hoe she manages with her feet out of the irons; it looks so painful. I spent a couple of days getting over the shock! That, and I had my first ‘horse related incident. Given this one, You think I’d have learned from it!! I had some mints with me so I shared them among the horses equally, until Paulas asked me to give my last polo to Gwen. This I did, and returned to stroke the nose of the middle horse, mistakenly with the wrapper still in my hand. Not finding any more polos, the horse decided he liked the look of the golf ball I use to steer my chair and stole it. At the point, there were not staff around. Perhaps I could/should have waited till the reappreared. As it was, the horse was not letting me has the golf ball back, so I went knee first into the stable door till he relenyted which sounds bad enough. Wait till you hear the Saturday incident from which I have yet tcover.

Supporters Day… People, horses, and children … young ‘Barry’ anyway!

The final part of week is the other major highlight. The open day for the supporters of the local Christian Social Enterprise charity. To protect the safety of the young in’s I would not care to mention the name of the place. The day started well enough, with a service, thanking the Lord Jesus for all he has provided for us this past year, all that he is providing and praying and trusting that he will continue to provide. I chose my own role for the day after that, talking to the parents of friends, many of whom I know by sight, others I had met on random occasions such as the couple who’d helped me cross London two years ago. I decided then to seek out those in wheelchairs or whatever, the ‘crip brigade’. I made friends with a young lad who gives all the pocket money to us, talking to another wheelchair user who explained the joys of hand gliding (paragliding?) with a chair. I then came across a couple who had been to the farm that frist year. Was lovely to swap geography, and stories with them. Before lunch I had met a young lady called Eleanor and her mum Janet, who explained Eleanor could not see me but could hear me, so talked to her of the horses, and took Janet too them. However, when we got to the same horse who caused me chair related mischief on Tuesday. I should have stayed out of the way! I clearly have not learned my lesson! My chair is now minus the button which ‘reclines’/ tips the chair backwards. I did rescue it from the hourse but it fell of my chair at one point before I lost it. I shall have to phone the wheelchair servicing co,many firs thing tomorrow to figure out how to repair it as quickly as possible.

I had better get myself off to bed. Before I go though, one final word about paralympics 2012 The speakers did not half talk a lot of nonsense. Lord Seb Coes gems of wisdom included the lines: “we will never think of sport the same way, and we will never think of disability the same way..” How is he so convinced that years of discrimination and so on has been turned around in te course of a mere 11 days. He’d have to start by changing governments attitudes to both disability and to disabled people. Another man with high expectations of disabled people is Sir Philip Craven who talked about a small boy who had been reading Treasure Island with his mother, who asked him about the main character, expecting her son to say the man was a “pirate, instead he said “athlete” The implications of this, is to assume that all disabled in some way are ‘athletes’, or can become athletes which is far from the case.

He also committed a further gaffe , which to me was worse than the first, as he claimed the magic of the Paralympic  Games would last  for an eternity, what a lot of RUBBISH!! Sorry to sound particularly Bible bashing, but he really has not thought this one through.My thoughts seemed to be echoed by my friends, including Partakers_Dave  and, and Pam who said she was “worried that such amazing feats will be expected of all disabled [people]in a way that will be even more disabling”. I often feel that disabled people are made to feel the truth of this already as ” superhuman feats’ like being able to work, find and maintain a job is expected of all of us who are out of a job, whatever the reason may be.The last word goes to Clare Balding who says””this will all only matter if it changes the way you think, the way you feel” — Clare Balding. I hope she was talking about attitudes to disability then, because it would have been one of the few sensible things said all night.

Over to you!

I’d love to know:

  • what did you think of the closing ceremony? The good the bad and the ugly?

  • what now for the future of sport

  • Or any other comment you would like to make on any aspect of this blog?!