Thursday 28 March 2013


Earlier this month I noticed a letter in the newspaper of the New Zealand Baptist churches.  In it, a man explained that he had been a Christian for 50 years when he experienced significant complications after a routine operation.  He prayed for healing and other members of his church also prayed for him.  He wasn't healed (although his problem was later resolved by further surgery) and that led him to conclude that God was indifferent to his suffering.  He still believes in God but no longer worships or follows Him.

I felt that, due to my own medical history, I had an unusual authority to reply to this letter.  It's taken a me a few weeks to do so and I've missed the deadline for getting it into April's edition. Hopefully it'll appear there in May.  Here is what I have written:
I was deeply saddened by D. S.'s letter in the March issue of The Baptist.

Like Mr. S., I am afflicted by a medical condition that significantly restricts my life.  For the last ten years I have been largely bed-bound, living with constant pain and also 'brain fog' that makes it hard for me to think straight.  All this began when I was only 26 years old: I often feel like my life has been stolen from me.  And yet, unlike Mr. S., I still believe in a loving God.


I believe God can and does heal people.  I also believe God never promised to heal His followers: He is under no obligation to heal me.  However, God has promised to be with us in our suffering and I can testify that He has been with me in mine.  I know through the Holy Spirit in me that He loves me and delights in me.  His presence in me sustains me on this difficult path.  However, it seems He has other priorities than making me well and that's OK: He's the boss.

I believe God's imagination is larger than my own.  I long for the healing of my body and mind.  God aches to heal not just me, not even all Christians, but everyone and everything: all of Creation.  Since the Fall, everyone and everything has been "groaning" and "in bondage to decay" (Romans 8:18-30).  My suffering and that of Mr. S. are examples of this.  In some cases, God chooses to remove an illness from the life of an individual; however, what He's mostly working on is removing suffering and decay from His creation altogether.  What a glorious and wonderful prospect!  We truly can look forward to a time when God "will wipe every tear from [our] eyes and there will be no more death or sorrow or crying or pain." (Revelation 21:4)

Mr. S. assumes that, as God didn't heal him, He cannot be all of omniscient, omnipotent and caring.  Yet God is all of these things.  It's just that His love is bigger than Mr. S. has been led to expect - not smaller.

The idea that God will remove our suffering so long as we pray and have faith is a dangerous and unbiblical lie.  I am so sad that Mr. S. has been taught that view and understand why he has rejected it.  I pray that he will encounter and accept a more Biblical view on these matters and turn back to God before it is too late.

Neighbours Day

On the weekend, our street celebrated Neighbours Day.  It was the third time we've done it, and definitely the best.  A few more people came and most people stayed a lot longer than in previous years.  I think the bouncy castle and face painting had a big impact on that: drawing the kids out of their houses, bringing their mums and dads with them :-)  I had a good catchup with someone I hadn't spoken to since last year as well as some general chitchat.  It's nice to gradually recognise more of the people I see on the street :-)

Saturday 16 March 2013


Last week we spent a day staying with friends in the next street - escaping the sounds of chainsaws next door.  In the afternoon, a flash of movement caught my eye.  My subconscious promptly identified the bird that settled on the neighbouring roof as a kingfisher; my conscious mind was doubtful.  Surely kingfishers don't have such stunning irridescent plumage?!  Then it turned and showed me its distinctive beak.  No doubt about it: the bird was definitely a kingfisher!

It was a wonder to behold.  I know I only felt that way because my life is so restricted and because it's years since I saw my last kingfisher.  But that doesn't make it any less of a wonder :-)

Saturday 2 March 2013

Ten years on

Last Monday was the 10th anniversary of my developing CFS.

It was a curious day.  Leading up to it I was very aware of it looming ahead of me, and yet whenever I tried to think about what the day meant to me I couldn't: my mind shied away from the topic.

I sincerely believe that I have a remarkably good quality of life, despite my illness.  In may ways, I'm pleased to be ten years down the track.  Those early days were so scary and baffling; these days I'm mostly dealing with the familiar.

And yet I do so wish life was different.

I grieve for the lost possibilities - especially for the children I most likely will never have.  I'm sick of hurting all the time, of rarely having the mental energy to have a decent conversation, of having to push through mud every move I make, of failing to understand so much of what I hear.  I'm sick of having to be so disciplined.  I'm sick of feeling exhausted all the time. I miss human company and generally being out and about in the world.  I so wish I had a body and a mind that worked.

And I wish it was more OK to say these things.

I recently listened to a radio programme about the new Disability Studies course being offered at Otago University.  As the lecturer talked about negative stereotypes people have about disability, I came to think that she was conflating two quite different things: statements/acts that suggest people with disabilities are of little value and statements/acts that suggest that life with a disability is harder than life without one.  For example, she thought it was bad that people had sent sympathy cards to the parents of a baby born with Downs Syndrome.  But what is wrong with coming alongside parents in their grief at the loss of the kind of future they'd imagined for their child?  That child is likely to have a much more difficult path through life than their peers - both because of their disability and because of society's attitude to it - and I wish it was more acceptable to say so!

Sadly, in the church people with disabilities experience another kind of pressure that again makes it hard for us to acknowledge how hard our lives are.   The church doesn't enjoin us to feel good about our disabilities but it does exert considerable pressure on us to endure them cheerfully - to be like Cousin Helen in the What Katy Did books, rather than like Katy herself in the early months after her accident.

So, on this anniversary, I wanted to tell some of the bits of my story I don't often tell: the bits about how hard it is, rather than the bits about how, on balance, it's OK.  I guess the fact that I'm posting this nearly a week after the actual anniversary tells part of that story, too,  It's hard having a head that takes more than a week to put ideas together coherently, and fingers that struggle to type, even when I am using my mouse-typing programme...