Private? Not so much…

Padlock-q mark
Padlock-q mark (Photo credit: Wikipedia)

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!

Another Tablet?! No thanks…

Yesterday’s daily prompt is a simple question:

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…

  1. For starters, I take so many pills anyway that I wouldn’t want to take any more unless strictly necessary.
  2. 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.
  3. 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…!
  4. 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!
  5. 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.
  6. 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?

 

Zoning out…

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!!

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

Thought-life

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

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

Jealousy, Envy or something in-between? 

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

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

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

‘What if…’

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

coffee, stink bombs and aftershave…

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

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

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

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

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

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

Drum-roll please!

Hand on keyboard
The picture shows a laptop keyboard, with a hand resting on it as though someone is typing

Today’s ‘Daily Prompt’ Question is one of the best; simple, yet profound:

Why do you blog?

For me, the answer is straight forward. I blog for several reasons.

1. A creative outlet

Firstly, because my parents encouraged me to find an outlet which used my gifts and also engaged my brain. As a person with significant impairments, it is very difficult to find enough to keep me occupied without exhausting myself at the same time. I have discovered, that this is a common problem. To know I am not the only one who faces this precarious balancing act on a daily, perhaps hourly, sometimes minute-by-minute basis is a massive relief. It is also useful to share coping strategies and tips, and simply to talk about the frustration this particular battle can cause. There are days where I am simply too exhausted to type. Additionally, if another part of my disability is out of kilter, say I am in excessive pain, or the bag is being particularly difficult I may well have no energy or head-space left to blog, as has been the case of late. That said, to have found an outlet which I enjoy, uses my gifts, engages my brain, and connects me with people who have similar interests is a joy. I have to admit, I needed encouragement, or a ‘boot up the backside’ to actually start writing. Bryony had been telling me for weeks that i should start a blog. When I joined twitter, she introduced me to Bex as the friend she had told her about who was going to start writing for BigBible, which Bex now works for, as they had been on the lookout for someone like me. Introductions made, I had no choice but to start. This was the boost I needed. It was a thrill to be one of the #digidisciples whose work featured in the top ten of most shared posts of 2012. The reaction to my first post was something which has stayed with me ever since, and I often bring to mind when I am in need of encouragement with my writing.

2. God is using me, and my writing

This reason for blogging is also connected with the first point. It is God who has given me the brain and the gifts necessary to make a good go of my blog, and my hope is to use it for His Glory, as should be my aim with everything I do. Many of my non-Christian friends or family like to read my posts, so this is a motivation for me to show how my faith makes a difference to the difficult times in my life, of which there are plenty. I hope and pray this will be a witness to those who read it. I decided early on that as much as possible I would keep my blog ‘real’, by writing honestly, including the good, the bad, and the ugly, without dramatising things but also without glossing over the tough stuff. I wanted mine to stand out. Not just a single-issue blog but something that reflected the variety of my life, and also so that as many people as possible could find something in my writing which speaks to them or with which they identify. Occasional feedback from readers is proving this to be true.

3. Semi housebound, but reaching the masses without leaving my front door!

For my first #digidisciple post for the Big Bible Project,. I wrote about the benefits of social media in general and twitter in particular when it is impossible to interact with the world in other ways. To go out, I have to book care, of which there are limited hours in a week, and/or a wheelchair taxi. Many of you reading this will understand just how expensive this can be. This all also depends on me having the finances to cover the cost of transport and having a good day energy wise to be able to go out. For both those reasons,. the places i go to are often limited to a specific list of places, or if in Leeds, a specific area meaning I frequently meet the same people. Online, however, it is a different story, and I can reach a much broader audience. My father recently referred to me as “a master blogger”, and commented on,the variety of people who read my work. I aim to be different from disability activists, as I do not feel this is my gifting, there are others much more adept at lobbying the policy makers, council leaders, whoever needs to be told. Having said that, I aim to inform as many people as i can about the complexities of life with significant needs, and deep Christian faith and to live as full as life as I can. I am aware of other disabled people I know who live fuller lives than I, even with a more significant physical impairment. Though I would sometimes wish my life was more varied, in general blogging is my way of being ‘out and about’; reaching people I would not otherwise meet and finding a creative outlet, while having a lot of fun at the same time!

last week, musically speaking

This morning contained a fair bit of music, between the radio breakfast show I listened to, the band practice I heard before church, and the various worship songs I attempted  to sing along with. My afternoon only contained a little bit of music,  by comparison. This evening, here’s my personal response to today’s daily prompt. All of these videos, except the 5th one, applied to each day last week in different doses. On Friday there was relief, the day on which the final video applies. I felt, through the week, as though I were searching, and that day, peace finally came, or rather, I allowed myself to be at peace. Rather than giving my burdens up and snatching them back again, that is!
 

Here’s to a new week! 🙂

No plurals allowed…

Today I’ve been a clutz. Already had electrician here, fixed the light in the bathroom, and one other thing. Maybe an hour later I was back on the phone needing a repair to a drawer in the kitchen! ! I had nothing to do with it; it was my wheelchair which got too near and pulled the drawer from the hinge… not pretty! I became very tired after I tried to fix it. I began to laugh uncontrollably. Carer thought I was crazy but I laughed even more. All that laughing made me hungry. 
Kitchen Round two:

I fixed coffee and food but I didn’t have to phone to report anything again… brilliant! 

Your turn to try the daily prompt… bet you can do better!!

My lovely Godly Gran!

I’ve not had the energy to post in the previous few days, or else other things have taken priority. I have thought about this particular post, and I think I’m ready to write it out of my head. I love this daily prompt from the 17th asking about mentors. I am both fortunate and privileged to have had a few wise and Godly people in my life, including but not limited to my Mum, My friend who is also key-holder and tablet-overseer, among other things, and a number of friends. My Gran though has been there for me through thick and thin, as have my other grandparents, and my parents, and for that I really am Blessed with a capital ‘B’. Since my Grandfather went to be with Jesus when I was about 15, I’ve gradually got to know my Gran in a different way. One step removed from my parents, but just as reassuring  and a wonderful listener, we have had many conversations over the years, including many debates, and times when we ‘put the world to rights’.

If I have done anything which my Gran has felt is out-of-order, she will tell me straight. She has also mopped up many tears, and along with others, prayed for me every single day. I will never truly know the results of all those prayers this side of Heaven. However, times such as when I have a big fall or whatever, I have known God’s peace, and it’s never been as bad as it might have been. The same goes for day-to-day health. By rights I should have more hospital admissions and infections than I do, given my medication and so on, but I am convinced all those prayers have kept me well.

There have also been times when, choked with emotion or a breaking heart, my Gran has prayed with me over the phone, or just after the phone call has ended. Times when I have been unable to pray for myself. She has also when need by reminded me of what has gone in the past, things I’ve been though or come through, things God has brought me through or times he has provided.

The one lesson that sticks in my head, above all is that Gran has taught me to be thankful. Even in the darkest of days, to find three things to be thankful for. It is something I am still learning, but I do so know the importance of it now. I am glad for her forbearance with me in the times I have been out-of-order and the times she has spoken her mind in love. I am thankful for these times also. I guess it’s all these things put together combined with wise, Godly wisdom which makes her a kind of mentor really. Mostly, she’s Gran, and I love her to bits! I am truly thankful for her, and all that she’s taught me and all the fun times we’ve had too. Hopefully there will be many more times to come.

I’ve chosen to schedule this post on a Sunday as this is when I often specially think of her, singing praise in Church to her Lord and Saviour Jesus, whom she loves very much. Unlike me, Gran has a wonderful singing voice 🙂 I’m hoping I can visit her at some point this summer, as a visit is long overdue. Those of you who read this blog who are Christians, please can you say a prayer of Blessing for her after you’ve read this?! Thank you!