The EU Referendum has been causing me great anxiety and so I've been spending time in the garden trying to focus on the local and centre myself. This has been a good thing to do and has led to a few poems about what was going on around me.
A friend posted this bucket list on Facebook today and I was at a lose end so decided play along.
Been Married x Fell in love x Gone on a blind date x Skipped school x Watched someone give birth x Watched someone die x Been to France x Ridden in an ambulance x Been to America x Been to Europe x Been to Blackpool x Been to Liverpool x Been to Newcastle x Visited Disneyland x Visited Legoland x Seen Grand Canyon x Flown in a helicopter x Been on a cruise x Served on a jury Danced in the rain x Been to Manchester x Been to Edinburgh x Played in a band x Sang karaoke x Made prank phone calls x Laughed so much you cried x Caught a snowflake on your tongue x Had children x Had a pet x Been sledging on big hill x Been downhill skiing Been water skiing Rode on a motorcycle x Traveled on a bus, train and coach x Jumped out of a plane Been to an outside movie x Rode a camel x Rode a Donkey x Been on TV Been in the newspaper x Stayed in the Hospital x Donated blood x Gotten a piercing x Gotten a tattoo x Driven over 100 mph x Been scuba diving Lived on your own x Rode in the back of police car x Got a speeding ticket Broken a bone x Gotten stitches x Travelled Alone x
Apparently this is a UK Bucket List and it seems I'm doing quite well. But the thing is, I still don't get the point.
Why do I want to write a list of things to do before I kick the bucket? And, do I really think that the things I could write down will ever be things I'd look back on with regret if I failed to tick them off?
Well no, but then again, yes. But in a very different way. The list would be less about things and places and more about people and love.
Don't get me wrong, I really want to go to New Zealand; but since becoming ill it's not because of the place any more but more that I'd love to be with Rachel and experience her joy of a trip.
People think that everything we don’t like now about our
bodies will be gone when we are resurrected; and yet we will look like we do
now and be completely recognisable to our loved ones. But there’s no evidence of this in the Bible;
the gospel accounts show that the disciples didn’t recognise Jesus – therefore his
body was obviously different; and yet Jesus was still able to show the holes in
his hands and feet and therefore the things that disabled Him stayed in his
resurrected life. What a challenge. Our disabled elements of our body will be a
part of us but in a different form when we are resurrected. A perishable body will be buried (planted
like a seed) and a body of power will be resurrected (as a fresh shoot of a
plant). And this shoot will keep growing
and building and gaining power as our resurrected lives continue; we will be
gaining abilities and losing our disabilities.
This terrifies me; in fact I had to stop reading the twitter
stream from #fullaccesschurch when someone tweeted that we will still have to
use a wheelchair in heaven. But I am
reminded that it is so much less about our bodies and so much more about the
context in which we find ourselves. It
is not our bodies which are disabled in this world so much as the world which
disables us by not accommodating us; and the Bible tells us that the
resurrection world will be a place which enables us as we are and ensures that
we can fulfil our callings in all their fullness as God has planned.
Two main chains of thought come from this.
1.If I will be resurrected as a disabled person
with MS, which by the end of my life is likely to be pretty disabled; then I
will be resurrected with a broken body and yet will be full of power. I cannot imagine how it will be; but what I
am hearing is that I will leave a world where my disability and disease is reducing
me; to a resurrected life where it is the basis for my life which will be
healed and empowered and rejuvenated. If
this is possible then I start to think about who I am; which is a body but
which is not JUST the body but also the mind and soul and heart. My mind and soul and heart are not being
reduced or disabled, in fact I think they are being rejuvenated through the
suffering of my body. I am able to be
more reflective, more understanding, more able to empathise and more able to
think without distraction. This of course
may not have been the case in generations gone by when being disabled would completely
limit a person; but thanks to technology and society and my own stubbornness and
the blessings of Jesus I am able to continue to live a life of relationship and
thought and exploration and ministry.
2.If I will be resurrected blind and unable to walk
and possible extremely weak then it strikes me that I will be resurrected
exactly how I was born in my human life.
That’s a wow moment. It’s a point
of blessing in so many ways. We are all
born blind and weak and unable to walk and we learn and build and are nurtured
and grow. Suddenly I feel hope and joy
with the idea that my resurrected life with God will be a repeat of the life I
have already lived but with a parent who is all about making me the entire
person He has called and always knew I would become. And because this is a resurrected life this
will be beyond all limits; it will be able to peak at some high point which I
have never yet experienced. How amazing
to be able to realise that.
I guess what is holding central for me is that our resurrection
bodies will be resolutions to our problems in this life in ways we can’t start
to understand. We may have the
attributes which we consider disabling in our world, but they will not disable
Another point from both Paula’s talk and the conference
which has stayed with me is that how we live in our body affects who we are. In 1 Corinthians 12 (repeated in Romans 12) Paul
explains identity and relationships through bodies because these things all happen
as and in bodies. What we do with our
bodies affects who we are; and therefore what anyone else does to enable or
disable us affects who we are. I wonder
how Paul would feel about the modern world which disables so many of us so
well? And what would he think of the
body of the church which disables us? What
would he think of a church which has no ramps or automatic doors or low lecterns
or has endless series of steps up to altars and pulpits which cannot be
accessed by wheelchair users; or no hymn books and service sheets or assistance
for the partially sighted; or hearing systems which never work properly for the
deaf or worship which terrifies some members whose brains are wired differently? It’s a challenge isn’t it! What would Paul think about a church which
disables people? What does God think?
Then there’s the other big thing which most of us who are
disabled Christians have encountered; the need to be healed of our disability
in order to meet the needs of those who offer it. I believe in healing, and have received
healing of my emotions and heart as I get used to living with MS and especially
with blindness. But I do not expect that
I will be healed physically; it hasn’t happened yet and I can’t help but think
that God sees a plan in this for me and that I am called to a ministry which
benefits from my disability. And yet
Jesus healed people; all over the place he healed. Paula Gooder talks about the fact that Jesus’
healing miracles are about integration of the person into their bodies in order
to integrate into their communities.
Jesus’ healing was predominantly about healing relationship through the
body, rather than about healing the body alone. For example; the woman at the well was healed not
so much for the physical aspects as to enable her to join back with her
community. Jesus would never imply that bodies cannot be
in relationship until they are healed; but He was focused on healing
relationships by healing the bodies.
I wonder what Jesus would think of those Christians and Churches
who require us to pray more to be healed in order to be the best we can be to
meet their need for us to be able? I
wonder whether Jesus would be more interested in Christians and Churches
healing relationships throughout society than healing the individuals who make
the able bodied feel uncomfortable; because I am sure that is a large part of what’s
going on. The things that makes our
bodies is an integration of heart and soul and body and mind and spirit; a
beautiful body working together for and in God.
No matter who we are and what our bodies are like we are integrated in
ourselves and with God; and in this integrated way we are in relationship with
the Body of Christ. It’s all about
relationship, rather than about the form of individual bodies. We are all one body and must be inclusive
These images include: Vigil for the LGBTQ victims in Orlando Jo Cox MP campaigning for a stop to violence Refugees in Greece taken by Amnesty International Palestinian children queuing for water after Israel cuts their supply
This came to me in a few minutes as I was waking up this morning.
The background is that yesterday was a very rough day missing Rachel, who is away in France with school for a week; and feeling extremely overloaded with lots going on at church. But yesterday evening was mums and more home group where we're following Brian Maclaren's "We make the road by walking" and we were looking at chapter 44 all about self care. I opened up about my feelings and received amazing prayers and prayerful advice. I pray that this blesses many others who read this as it has blessed me.
Yesterday (praying it away)
To be sung to "Yesterday" by The Beatles
Yesterday all my troubles got on top of me
I was tempted just to hide away
But I asked for help, yesterday
Suddenly, I am not alone in my stress
There are great women praying for me
And it really helped, yesterday
Why, I always forget, to ask for help, I just don't know
When I say something's wrong, people pray and I'm okay, ay, ay, ay
Yesterday, prayers took the fear from in the way
Now I don't need a place to hide away
Oh I believe in praying it away
So when you're overwhelmed, just reach out and ask for prayer
Do not second guess yourself, just ask a friend to pray away, ay, ay, ay
Yesterday, prayers took the fear from in my way
They can do the same for you today
Oh I believe in praying it away
It struck me today, when I was eating on my own, that I can't really see my food any more.
I don't mean that my eye sight had suddenly got worse, but just that I noticed it in a new way today. And it occurred to me that I now seek out food which is varied in colour and texture (which is healthy so not one of the worst side effects) so that I can at least try to differentiate between the elements with my remaining vision and cutlery.
I feel my food more than look for it; I try to get a variation on my fork, rather than select specific items; and so far it's mostly been OK.
Interestingly I've become much less interested in meat; it doesn't look appealing really, where as fish smells lovely and is easy to eat. And add in the fact that it's often difficult to cut, which means I need someone else to do it for me because of pain and/or weakness in my hands and it's appeal drops through the floor.
I don't think I've ever really looked at my food very much, which is no doubt related to my eating disorder; and I've concentrated on conversations at meal times, but today I was eating on my own and so it was obvious.
But it also became clear that I'm less influenced by the sight of food and that I'm eating less, I'm actually not interested in it. I used to get a drink and see food in the kitchen and feel hunger and need to eat, well that's no longer possible and so I'm eating less.
I'm not sure what this says really, but it's interesting to me that my emotional hunger has all been sight led.
Anyway, that was my thinking at lunch today, interesting changes happening.
Last month I was thrilled to discover that the book "The Servant Queen and the King she serves" was available in large print, braille and audio CD from Torch Trust and ordered a copy of the largest print and the audio CD. The book, written by Mark Green & Catherine Butcher and published by HOPE in partnership with Bible Society and the London Institute for Contemporary Christianity, takes a closer look at the Queen’s personal faith in Jesus and the impact it’s had on her long life of service to the nation.
I've listened to the book several times since it arrived and have been surprised how moved I have been by the Queen's trust in Jesus, prayer life and calling to her role as Queen by God. It has inspired me and you won't be surprised to hear that this took the form of poetry.
Logo in honour of Her Majesty the Queen's 90th birthday designed by Lucas Salinger, aged 10, from Potten End C of E Primary School in Hertfordshire.
The liturgical commission has published approved prayers which Her Majesty The Queen has approved for the celebration of her 90th Birthday later this year. Two prayers (or Collects) have been published in traditional and modern forms as can be found on the Church of England Website. The Church of England has also produced resources for street parties, birthday celebrations and school assemblies as found at the Church Care Website.
But I couldn't help but think there was a distinct lack of prayers to be used in our services with children; or indeed for those of us running Sunday School sessions for the Queen's Birthday. So I rewrote the approved prayers in a more accessible format; and here they are for you if you'd like to use them.
You have been with our Queen Elizabeth every day of her life for 90 years, thank you.
Today we are celebrating her birthday around the world, please give us all your love.
Please help us bring peace and happiness in the world as Jesus taught us.
Thank you for keeping the Queen safe all the way to her 90th birthday.
Thank you for being with her as she has worked for you and for all of us.
Please keep loving her and helping her every day.
And please fill us with love and peace across the world as Jesus taught us.
God who gives us everything we need, thank you for the Queen and her long life.
Bless our food,
Bless our homes,
Bless our community,
Bless all of us celebrating together.
Please show us the people who need love and care in our community so that we can help them.
Give our Queen strength and show her where you want her to work.
Bless our food,
Bless all of us celebrating together.
Please show us where you want us to do your work.
I have created some Lord's Prayer colouring sheets for our PPP Messy Church on Sunday. I know there are loads all over the internet but these are designed specifically for those of any age with visual impairments and for the youngest members of our church family. If you find them useful then feel free to use them.
I will be creating more colouring sheets of bible verses over the coming weeks because I can't find any which I can see well enough to colour myself. Turns out it's as relaxing to create them as to colour them.
This is an even more simplified version for those who prefer it.
A month ago my folding electric wheelchair arrived from Better Products for Disabled People. I invested my back dated Personal Independence Payment into this purchase after finally agreeing with Occupational Therapists that an electric wheelchair would broaden my life beyond what I could enjoy with my mobility scooter.
I tried lots of different electric wheelchairs before deciding to ask for a trial of the BPDP10J but all of them had one major drawback, they wouldn't fit in our car, let alone in a smaller car. My goal for the electric wheelchair was to get out and about more with friends in their cars and for work using taxis; but the conventional power chair market had nothing which could help with this. It was the folding aspect of the BPDP10J which appealed to me and made it something worth trying.
I emailed BPDJ and spoke to Shaun who said he had a customer who would happily bring his wheelchair to me to try. Within a few days Alan and his wonderful wife arrived at my house with his BPDP10J wheelchair, unloaded it, opened it and invited me to have a spin. I couldn't believe how easy it was for Alan to get the wheelchair out of his car and was amazed by the simple way it opened up ready for use. I had a slow, and then quicker, spin around the close outside my home and was sold almost straight away. My only concern was that the footplate was small and meant I couldn't get my legs comfortable, which I knew would become a major issue with my MS pain. Alan said that BPDP were looking at making larger footplates and I should speak to Shaun, which I did who said he would make it happen for me, no problem at all.
I can not overestimate the benefit of speaking to someone like Alan who is also disabled and seeing the chair in action; or the positivity of Shaun at BPDP in every conversation we ever had and the way he completely understood what my issues were and what I needed. I was concerned that I would be getting the first of the newly designed models, but was reassured that they would make sure the chair would be altered to meet my needs. I was safe in their hands.
The worst part of the whole experience from enquiry to trial to order to delivery was the wait to get the 10J model; it seemed to take forever to arrive from China and make it through customs. But it was worth the wait, which actually was less than 3 weeks, to have the first of the newest specification models with the larger footplate; it is wonderful.
Over the last 3 weeks I have tested the BPDP10J all over the place. I started around the house but quickly decided I needed a larger space to practice my turning skills, especially my reversing. I think this was as much to do with my hand eye coordination, extremely minimal eye sight and confidence than anything.
We decided that the best place to go would be our local supermarket and I put a warning on Facebook for everyone so that they knew the yellow peril (Alan named us thus) was on the move. I know the store well and have taken my mobility scooter there quite a few times and therefore this was a good place to compare and contrast as well as try out the BPDP10J maneuverability.
Mike and I were both really impressed with how little space it needed in the boot of the car. It could probably fit behind a front seat if no one was in the back, but we haven't tried that out. In the supermarket I was shocked by how much better it could get round obstacles and corners, it literally turns on a penny if I get my hand eye coordination sorted. It can get through much smaller spaces and is much smoother as well as a much more comfortable position, leaving me less tired and therefore more able to cope with the other MS symptoms. The yellow colour did nothing to help people see me, but I've decided that that's as much to do with being lower and disabled people being invisible than anything else.
I took the 10J to a garden centre, a local coffee shop, to a restaurant, to the theatre, to a scouting meeting and to church over the next few days and the only problems I encountered were that it doesn't cope so well offroad and that everyone wants a go!!
Then this past week we have been on holiday in Lancashire. We were staying in a beautiful cottage in the countryside and we took both the mobility scooter and the BPDP10J. The plan was to use the mobility scooter around the farm and anywhere with offroad type elements; and use the wheelchair everywhere else. Over the week I took it all over Blackpool with great success along the promenade, across tram tracks, down the piers, through arcades and shops and into restaurants;
around Manchester city centre and across to the old UMIST campus;
to a number of different restaurants where it was always the most comfortable seat in the place; and I even got down to the lamb pens on the farm which I really didn't expect to manage.
So, in case you haven't guessed, my verdict is that the BPDP10J is brilliant. It fits in pretty much any car, it goes on for miles and miles, it's really comfortable and easy to use and it looks cool too. I won't use it for a walk in the woods, but pretty much everywhere else it is my wheels of choice. 9/10
I have received no remediation for this review, but Better Products for Disabled People have made a £100 donation to the MS Trust in my name.
Below I have provided a video of the BPDP10J in action along with some of the specifications.
BPDP10J Spec: Folding size 590×325×780mm Unfolding size 975×590×935mm. Loading capacity of 180 kg. It can reach to 6km/h with a driving range of 25 km. 10J can climb up to 12°. It weighs 24 kg (without batteries) and 27 kg (with batteries). It has a seat width-depth-and height of 480mmX430mmX460mm.
I love a challenge especially ones combining poetry, singing and kids. This challenge was to adapt a nursery rhyme to the words of The Lord's Prayer and was started a few years ago here. But as I was preparing for our Messy Church on Sunday I revisited what I'd created and made a few alterations. Rachel and I have tested it to destruction and we both think it works really well now.
Let me present .....
The Lord's Prayer sung to the tune of Incy Wincy Spider.