MS Brain for World MS Day #haiku #poetry

How accessible is my blog? #disability #images

This image contains a word

Can you read it?

Most of you will say, yes.  But many of those who are visually impaired can not read the word.  This is because they need to use screen reader software to "read" for them and this software has enormous trouble reading images. 

I am lucky, I can use my zoom software to make the image as large as I like to read the word.  And I thought I had made it clear enough that it would be accessible to everyone.  

But I was wrong.

We all need to better understand what it means for our websites to be accessible.  

Here are some simple tips:

provide a good level of contrast

write in plain English

use a clear font with good spacing

explain all images and videos in text

provide the text for any sound files

I hope this encourages you

(encourage was the word in the image)

Prayer Zone #prayerspaces #prayforschools #childrenswork #thykingdomcome

 


On Monday 9th May 2016 the Loddon Prayer Group, with support from REinspired, transformed the Loddon Primary School outdoor classroom into a prayer zone for parents, carers and children to visit.

From 8am until 4pm we welcomed over 250 adults and children to
- Offer the power of prayer and the comfort it brings
- Share the blessing of giving and receiving forgiveness
- Hear and pray for their hopes and dreams
- Receive their worries and bless them with calm
- Welcome them as part of God’s family

Over 150 prayers were written down and placed on one of the installations; dozens of faith conversations were held and many hundreds of prayers were dropped as stones of forgiveness into water, shaken as glitter asking for calm and blown as bubbles to God on the wind.
 

This day of prayer was a blessing to those of us who facilitated the space and to the school and its community; we look forward to providing it at Loddon again sometime soon.  We hope the sharing of this inspires other schools to ask for similar prayer spaces and more churches to offer them.

Conferences and Accessibility #disability #MCIC2016 #CREInternational

I really want to go to all sorts of conferences, mostly about church and mission, but my health means it's basically impossible. Let me explain...

There's the travel
I  wanted to go to the inaugral International Messy Church Conference but I had no idea how I would get there or what it would be like when I was there.  I looked at it from every different angle and just couldn't figure out how.

I really wanted to go to the Christian Resources Exhibition but I couldn't even imagine how I'd get from Reading, across London and to ExCel and still have any energy for the day itself.  I knew that I wouldn't get anything from the day once I got there; and although I could go with friends who would do the driving etc I couldn't guarantee I could stay as late as they'd want to.  And by not being able to stay late, I mean that I'd crash out in pain and loose my ability to sit up properly.

I really want to get to the Disability and Jesus day in Manchester, but again it's 4 hours away and that either means an exhausting journey or a night at a hotel which isn't easy either.  You see a hotel involves a bed I don't know and I would have to go alone and that increases the anxiety about what I can deal with.

I am not saying this because I'm complaining, I'm not, but it makes me realise why there are so few disabled people at conferences, church ones or otherwise.  It's really really really hard to navigate transportation systems and hotels and conference centres, even good ones; and that makes it all a step too far.

Then there's the format
Today I spent a bit of time catching up on the Messy Church conference and was so thrilled to see photos of a wonderful time being had by people from all over the world.
But then it hit me.....
I couldn't be a part of that.
The chairs are too close together, and so are the tables.
It is so visual and so active and energetic and so inaccessible for me.
It is so very messy and yet not messy enough for those with sensory or mobility disabilities to feel like they can fully take part.

And CRE?
Well again it looks amazing in photos; but all those stands have posters too high and too many people and delegates buzzing everywhere and the need for free hands to carry everything, and it's visual visual visual.

And finally there's the loneliness
I am an extrovert, sometimes less in your face than others, but basically I'm a fully signed up member of the people people group.  Yet when I'm in my wheelchair or scooter I loose the ability to be an extrovert.  I'm not sure if it's the fact that I'm lower down or the fact that people see the wheels before they see me, or whether it's all in my head because I'm getting used to it; but it's the truth.

Add to that my sight loss and suddenly I can't see who is who anymore and every new place is somewhere I have to figure out and  crowds are terrifying because I don't want to run anyone over or miss someone who smiled at me but I clearly didn't see.

It's lonely amongst strangers now, in fact it can be lonely amongst friends and family because I'm not as able anymore and that is a separation; but in a room full of strangers I feel lonely and scared and it erodes my confidence.

Again, no ones fault, just the way it is;
but.....


I have a dream
Of conferences where there are disabled people and everything is accessible.
Of timings which aren't so exhausting or hard to deal with around public transport.
Of activities which every person in a room can take part in without any need of help or exclusion.
Of true accessibility and resourcing and messiness and adjustment and openess and love and acceptance.

Now I just wonder; will it come true?
Disability and Jesus - is it over to you?

Or am I expecting too much and need to get overmyself?

What do we mean by God's healing? #prayer #disability

It is worth saying, right at the beginning of this post, that as a Christian I believe in healing.  

I believe that God has the power to physically heal people and I have friends who have been healed and a few who I have seen healed dramatically.  It happens, it's not just in the Bible that people get up and walk having not been able to for weeks, months or years.

But I also know many hundreds of people who have not been healed by God despite their belief in healing, their turning to Christ, their obedient lives and their petitions for healing through prayer.

Since loosing most of my eye sight and having very dodgy mobility so using either a mobility scooter or an electric wheelchair (I manage to get around the house OK until early evening when I usually start bumbling into things and having problems getting out of chairs and loose my legs from under me) I have had a plethera of people tell me what I should do in order to be healed.  Interestingly not a single one of these people are nurses or doctors or specialists, and there are plenty of those in our church.

My first experience of advice about healing was 

"don't say you have MS and have lost your sight, if you name it then you claim it".

I had never heard anything like this before and was completely taken off guard.  I actually had no idea what this meant and had to ask for a further explanation.  The brief summary is that this person believes that illness is about not being faithful enough to God and not trusting Him enough with our health and healing.  I was dumbfounded (which really doesn't happen often) and didn't want to get into a theological discussion at that time and so just thanked them for their advice.

My second experience was several months later and on the street in the centre of Reading.  There were a group of young Christians with a massive flag who were offering healing.  They are there a lot and I just ignore, I don't think it's a great witness of our faith, but each to their own.  But this time, as I was going past on my mobility scooter, one of them shouts out "you need to believe in God and He will heal you!"  Well I wasn't going to just let that go; it's one thing to offer healing to people who ask for it, but to tell someone that they need to believe in God to be healed is awful, especially when that person already believes.  I decided that the best way to deal with this was not to ignore but to speak to the person and to the leader of the group.  I explained how I felt and that as a Christian, it was hurtful and thoughtless and could be really damaging to someone who is struggling with their disability or illness as a faithful Christian.  After a few minutes it was clear that we were never going to agree and so I left them to get on with it.

My subsequent experiences have been people who have been "shown by God that I won't always be blind/have MS/need mobility aids/get more ill" etc etc etc.  There have been so many of these well meaning people and I always enter into a discussion with them about what they mean and how they think this is helpful.  Some come from the "don't claim it" camp, others from the "God is going to heal you if you really want it" camp and others have a strong sense from God that I will be healed.  

Yes I will be healed, in fact, yes I have been healed!!

It is not a one way only thing

Let me explain more.

In October 2015 I lost most of my eye sight, but more importantly, in the weeks that followed, I lost most of my hope and passion for life and felt like I was broken and had failed God in my calling.  I was grieving and I sunk into an anger and depression which engulfed everything else.  I spent most of my time trapped in my house and on my own and it was some of the worst days of my life, as bad as the months after Kendi died when I could not really function.  Yet I still had to function because I knew I needed to keep things the best they could be for Rachel.  So I got out of bed every day and I smiled as she went off to school and I pulled myself together the best I could when she came home.  I went to church and got to team meetings and every time I went anywhere people would say something along the lines of "you are so inspirational, it's amazing how you are coping and getting on with life" etc etc etc  And I know they meant well, but I was dieing inside and I didn't feel any of that and I knew that if they could see into my heart they would be shocked and appauled at what they found.  And that made the depression worse, it was spiralling downward.

I was not a nice person to be around between November and Christmas and almost all of that was taken out on Mike.  I was angry and it was directed towards him and I'm ashamed to admit that I blamed him for not making everything better and sorting it all out and allowing me to live the life I had had before.  I was a monster to him and I can't believe he put up with it.  But of course he knew what was going on, he knew I was depressed, after all he'd seen it before and knew it would pass.

At Christmas I hit rock bottom and I was struck with suicidal thoughts but I couldn't tell a soul, I couldn't bring that onto the family at Christmas, although obviously they could all see that I was struggling big time and was in crisis.  I didn't know what to do, I knew this wasn't a chemical depression which increasing my anti-depressants would fix, I knew this was grief, plain and simple and awful.  And so I did what I knew to do, I asked for prayer from every person I knew who prayed.  I asked for prayer to heal my grief as quickly as possible and being healing upon me.  And I prayed, like crazy I prayed for God's will to be done in my life in whatever way He needed me to be healed.

And guess what?  I was healed!

By mid January I could feel a lightening of my mood and I was able to think clearly again.  By February I was thinking ahead again; we made plans for a cruise this summer, I rang back the occupational therapists and agencies who could help and made appointments, I actually listened to people with advice.  I was making plans and taking steps to learn how to live life to the very best because that was clearly what God wanted me to do.

One of the most important things that happened was that I heard about Torch Trust (a Christian organisation with a worldwide vision for people with sight loss) and made a booking to go on a week's retreat with them in the spring.   That week was a huge blessing, it was a time of affirmation and understanding, empowerment and fellowship and healing.  It was a week of being soaked in the spirit and allowing it to work in me.  I arrived on the Monday weighed down with guilt and feelings of failing in my calling; and I left knowing how much God loved me still and how much He had in store for me.  I knew that God had always known this was coming and was wanting me to keep ministering through whatever life threw at me.

I was healed! 

Healed emotionally of the pain and grief of my illness and able to think ahead.

Healed of doubt and guilt and able to find a way forward in my calling.

Healed of anger and upset and able to see the joy and hope and opportunity.

Healed.

So what do we mean by God's healing?

As in John9 we mean that the blind shall see.

And for some that might be a literal healing of blindness.

But for me it's about seeing God in His truth and seeing my calling in it's diversity.

The blind man shall see; well so shall I, even with my sight loss, because I know the love and healing power of God in my life.

As Mother Theresa so brilliantly said "Prayer is putting oneself in the hands of God".  I have done that and He has healed me, in ways I value much more than actual sight or complete health.

How are your eyes these days? #poetry #DrSeuss

Oh the things 

That people say

The words I wish 

Would go away

You don't look blind

How are your eyes

What can you see

Can you see the skies

And patiently 

I answer them

But very soon 

I won't pretend

That it doesn't annoy

And doesn't offend

Because those questions

Will usually send

Me over the edge

Into wondering if

Anyone knows

What it's like to live

With little sight

And lots of pain

And yet they ask

Over and over again

How are you feeling?

You seem OK

I'm glad things are better

Not so bad today?

And what do I say?

Tell me what do I say?

To make you feel better

Coz I think that's it

You want to know

That I'm not so sick

Because that's easier

Than having to see

Really what it's like

Living life as me

And realising

I'm making the best

Of what I've got

I've still got the rest

Of my skills and talents

And beyond the aches

I can use my brain

That's no big shakes

So how are my eyes?

No better, no worse

I'm getting on

I don't feel cursed

In fact I feel blessed

To have technology

And by the way ...

I am still me!

Linked up at Prose 4 Thought

I will still EXPERIENCE the World #travel #disability #spoonie

This morning I read a wonderful article on The Mighty: When I Saw the Adventurous Life I Envisioned Before My Illness Slip Away which spoke a great deal to how I can feel at times.  I recommend that you read it for yourself, but in brief, it speaks of a young woman diagnosed with a chronic illness who is having to come to terms with changing her plan for a life travelling the world. There are days when I can let myself think like this, and these were almost every day in the first six months after loosing my eye sight and realising my mobility problems were not a temporary blip; but most days now I think differently.

My Travel Plans (as were)
I will see everything there is to see in the world; all the amazing sights and people and cultures and buildings and natural wonders.

I will stand on Antarctica and walk in colonies of penguins; drive an RV through New Zealand and see the land of giants; watch the sunset over deserts; trek through forests to see orangutans; worry about bears in Alaska and time eruptions in Iceland; see the Northern Lights and watch dolphins and whales time and time again; try disgusting food because it's better to have tried and disliked than never to have tried it at all.

It was all mapped out, every square inch of the planet a place to be seen and explored and captured with my camera and shared with Rachel and Mike.  It was a life full of adventure and fun but absolutely no bungee jumping!!

My Travel Plans (as I grieved)
There's no point in even trying to go to any of the places I have always wanted to see, because I can't see.  There's no point in expecting to trek through jungles or take a boat up the amazon, because I can't trek or even get on a little boat let alone sit in it for hours.  There's no point planning to see the Northern Lights because they're subtle and will not be bright enough for my little sight to pick up, and I will be too tired by the evening to be able to cope with the trips anyway etc etc.  A spiral of can nots and will nots and impossibilities for the future.

but......
I have come through the grief (I'll be blogging about how that happened) and now .....

My Travel Plans for life
I will experience everything I possibly can in the world; all the amazing sights and people and cultures and buildings and natural wonders.  I will find ways of travelling which make it possible; we are trying cruising this summer to see how that works for me.  I will meet people from different cultures and enjoy their company because it's always been more about their stories than about what they look like.  I will visit the natural wonders and I will hear through Mike and Rachel what I can not see and we will take photos and I will use technology, there at the place, to see it the very best way I can.  I will open my ears and hear the waterfalls; I will touch the rocks and the ice of the glaciers and I will feel the wind and spray from the sea.  I will feel the joy of those around me and my own as I travel with loved ones and place memories in my heart.

I might be in a wheelchair, or scooter, or perhaps in a funky off-roading contraption and I will find a way.  I might need assistance, but we all need assistance from loved ones or experts whenever we travel, it's just a different form of help.

I have it all mapped out and it's the whole world.  I will see as much as it's possible to see and I will see it with the whole of me; I will experience it as me and it will be awesome.  No disability is going to stop me, my only limitation is money and let's be clear, that was always the limiting factor but it doesn't matter in dreams and plans for the future.

Torch Trust healing #poetry

what more can you need

than a place like this

with birds that sing

and sheep that spring

https://www.facebook.com/emmuk74/videos/10153459192917539/?l=9074705697526359621

Spring into Spring with Torch Trust #poetry

Spring into spring

Here new lives begin

Building

Building

Peace in creation

Gardening 

Gardening

Therapy with fingers

Growing

Growing

Plants and confidence

Perfection

Linked up at Prose 4thought

Angels at Torch Trust #poetry #God

Angels from God

Just ask and they will come

To protect you

At creation

In the garden of Eden

Cherabym placed

Thousands with Moses

As the law was provided

To bless the earth

Daniel prayed

They came into the den

And stopped lions

When in danger

Pray angels protection

No need to fear

xxx

This poem was inspired by the worship we had through the week and by the feeling of angelic protection which I felt during my week at the Torch Holiday and Retreat Centre.

A journey through retreat with Torch Trust #poetry

High anxiety

When we all arrive

What will be?

Immediately

Welcoming friendly faces

Put us at ease

No expectations

Come just as we are

Relax for the week

Bedrooms

Comfy and bright

Home from home

Every detail

Thought out with prayer

A holy place

Within a day

Strangers become friends

Sharing stories

Worship

Sustains and renews

Uplifting

Activities

Empower and encourage

New skills

Meal times

Feed body and mind

Fellowship

Now going home

Leaving this holy place

Will return soon

Torch Holiday and Retreat Centre #poetry

Welcomed warmly

Hearts, hands and minds

Completely safe

Completely safe

In Jesus' protection

Everyone valued

Everyone valued

For individual talents

As children of God

As children of God

Supported and cherished

No fear here

No fear here

On retreat with torch trust

Heaven on earth

Heaven on earth

All eternally loved

Welcomed warmly