I remember as a 3 year old idolising my big sister, following her around everywhere she went, copying her every movement, to the extent that she managed to trick me into swallowing a button and then laughed in that way that only big sisters can when they know they’ve caught you hook, line and sinker! Today I look at her and my heart breaks – the little girl I looked up to, who danced so gracefully like a ballerina, now caught up in a world of obsessive movements which makes her heart pound with anxiety and the sweat form on her brow even as she attempts to pick up a jug to drink out of it. For she suffers with Obsessive-Compulsive Disorder, her coping mechanism for her Asperger’s Syndrome. Bullied at school for being “different”, she withdrew into a life of rituals and obsessions to give her a sense of identity. I remember when she was 9 how she started coming home from school and checking every single thing in her bedroom was in its rightful place – it wasn’t long before she started sleeping in my bedroom to protect hers from getting messed up. Not long after that no-one was allowed in her bedroom at all. Today it remains a shrine, filled with untouched beautiful toys and unhugged dolls from that long-gone childhood.
As we both grew older, my ability to connect with Helen diminished. Looking at life wearing the self-centred glasses of a teenager, I resented the fact that I had to start using a duster to turn light switches on and off, that I had to line up the cutlery in the drawer in a perfect line, and above all that I was unable to bring friends back home in case the house got messed up. As Helen found life increasingly more difficult and became more and more house-bound, her frustrations that we simply didn’t understand her spilled over into physical violence, and I’ll never forget my mum and I sleeping in the car one night in the local supermarket car park, too afraid to return home. I was relieved to leave home and go off to university.
But God then intervened. He opened my mum’s eyes to the gospel message, and soon after mine too. And I was amazed at how my attitude to my sister completely changed – how my hardened heart towards her was softened and I felt deep compassion for her. And it was clear to both my mum and me that God was going to heal Helen and be glorified by doing so.
That belief took a knock when Helen was sectioned (involuntarily committed) to a psychiatric hospital the next year, as she had become confined to living in an armchair in the lounge. And in the 19 years since then she has been passed from care home to care home, in increasingly desperate attempts to find a place for her to live where she might receive some help. Her problems have been compounded by lack of understanding in many of these places, and also sexual abuse from those “caring” for her. Today we are preparing a bungalow for her to move to in a few weeks time, in the hope that this time things might improve. Meanwhile, I go to visit her and watch as she stands eating her one daily meal out of a bowl with her fingers, unable to eat more often as this would add too many rituals, unable to use a knife and fork, unable to sit down otherwise she would get “stuck”; try to calm and reassure her as she performs her rituals of movement (which encompass every single movement she makes with her body) under intense anxiety; witness her despair at feeling like a “caged animal”, unable to have any kind of a normal life and feeling utterly worthless; and have to forego any normal sisterly conversation as I have to teach her from a book whilst I visit so that the rituals Helen has “given up” by spending time with me are “repaid” by her learning and feeling better about herself that way. Yet there are moments when the tender heart that God has formed in Helen through her suffering shines out brilliantly – when a member of staff suffered a panic attack, Helen was able to reassure him and calm him down, and he was so touched by this he sent her a bouquet of flowers the next day to thank her.
Reading Chapter 4 in Michael Horton’s A Place for Weakness – Is Your God Big Enough – has been a personal challenge to me. For God has started to break down some emotional barriers that I had put up with Helen’s situation, and I am finding the questions are starting to come. In particular I look at the centurion who approached Jesus on behalf of his paralysed servant in terrible suffering who simply asks Jesus to “just say the word, and my servant will be healed” (Mt 8:8). And I KNOW that all it would take is a word from My Lord and Saviour, and my sister would be released from her bondage, for the nature of God has not changed, He continues to heal today. Yet He stays silent.
Dealing with long-term suffering has led me through many different seasons of prayer for Helen and to be honest, I have fluctuated from one extreme to another without ever finding that satisfactory rest in Christ – either believing that God exists for us (p.65) and not being able to understand why He doesn’t heal Helen, or letting experience be my guide (p.54) and believing nothing is going to change for Helen and that we all need to just stoically persevere. Yet as Horton points out so well in this chapter, neither of these approaches does justice to the God we worship and who has revealed Himself through the Scriptures.
I KNOW that “God has a larger plan and design” for the suffering we may have to witness our loved ones go through, otherwise, as Horton says, “a random accident, the car accident that took the life of one’s daughter, for example, is literally meaningless.” (p.64). My mum and I were both left cold by the words of an Anglican vicar who told us after the death of my father in this exact circumstance when Helen was 16 that “God sometimes gets it wrong”. Even as non-Christians we knew this couldn’t be true. I agree with every fibre of my being when Horton declares triumphantly “Our Father is strong to save. This means that he both can and will set everything right and wipe every tear from our eyes.” (p.67). I just don’t know when. Elizabeth, the wonderful host of this stimulating book discussion, said the other day “We like to say it's a high calling, but dignify the trial by praying and persevering to the end of it. See what God brings about in His own time, in His own way, for His own glory.” And whilst I agree wholeheartedly, may God have mercy on me but I cannot deny that part of me is crying out that He should act in this case sooner rather than later.
And reflecting on that last sentence I wrote, I can now see how it is steeped in a theology of glory - for as Horton points out, "This is the key point of the theology of the cross: God is most present precisely when He seems most absent" (p.56). Which just proves the point of Horton's book really - that in the crucible of testing we are likely to revert to the natural theology of man, the theology of glory, unless we learn from God's Word how to meet the trials. So I will continue to wrestle.
Helen wrote this poem about 15 years ago. I haven’t read it for many years, and reading it today the words hit me hard. May God have mercy on her and free her from her prison and release her from the dungeon in which she is held in darkness (Isa 42:7).
TRAPPED
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Helen was my beautiful bridesmaid in 1994 |
Trapped in the depths of a world where I came to mysteriously existI have a desperate urge to get out – be free – to escape –
Begging, my soul screaming, I need comfort
Please come and give it to me, please, I beg you
Protect me from the demonic structure of this world.
Relieve me from the dark, painful tightness of my existence.
How can I be free? There is nowhere, nobody for me.
Too many other particles and matter in this universe.
Why should I be more important than them?
I am nothing – for nothing.
I am a bird that cannot sing
I am a petal on a flower which is unseen
I just cannot compete.
Why cannot I just be myself in this time?
Cannot human beings accept me as I am?
Why do I have to conform to every little detail?
Please let me be, please love me.
All I need is one good soul to hear my song.
To see me amongst the petals on a flower.
Without this special love I am surely doomed for ever.
- Helen Reynolds.
(Please join the book discussion here).