Monday, 29 June 2015
Today is Monday. And today I am exhausted. After a couple of weeks of feeling like we were winning the battle against epilepsy, we had an epic fail over the last few days. I can’t describe exactly how draining this journey is; every single day is an unknown and the Lennox-Gastaut syndrome demands every ounce of our energy in caring for B. Up until now the most prevalent seizures B has had have been obvious. Big head or body drops, being flung backwards across the room, being unresponsive and vacant. Distressing to watch, and time-consuming to record, alongside the constant background decision making on what necessitates extra meds intervention versus what B can cope with. The seizures are so sneaky though. Once you think you have a handle on what’s going on, it all changes.
On Thursday B needed to be woken up- for a child who regularly wakes between 4.30 and 5.30 am bouncing off the walls and ready for the day this was highly unusual. More alarm bells started ringing when he couldn’t physically climb out of bed without support. He was shaking all over, clumsy, minimally responsive, uncoordinated, unable to feed himself breakfast, and most notable of all, unable to walk properly without someone helping him. I wrote in his home-school communication book* so school were aware of his presentation, and sent him on the bus. At around 11am I had a call from school, who were concerned that B hadn’t picked up, in fact he was progressively getting worse. It’s worth noting at this point that every time my phone flashes up with a call from school, my heart is in my mouth. It’s almost always a bad thing. In the early years it was usually due to a fall or bump (hyperactivity plus clumsiness does not a bruise-free child make), nowadays it tends to be around the seizure shit. Although I’ve never admitted this out loud, a tiny part of me always wonders if they’re ringing to tell me the unspeakable- whether that phone call is THE phonecall- the one where they tell me it’s all over. That we’ve lost him.
They phoned again a while later to tell me he had fallen asleep. I advised leaving him an hour and waking him then if he hadn’t woken independently. Cue another call an hour later to let me know they couldn’t wake him up. At this point we decided together to intervene with seizure meds to try and break up whatever the hell it was that was going on, which apparently didn’t really do much. B slept the rest of the school day, briefly woke up and ate something, and then promptly climbed on me and fell asleep again. This whole pattern continued until Saturday evening. On Sunday morning B was brighter, and continued to progress until by the afternoon he was back to his typical self. We did however begin to see some new odd movements which may be different seizures emerging. Watch this space.
Due to a combination of poor communication, logistics, inexperience (on both ours and the local hospital’s part), and the fact it was a weekend (I shit you not) we couldn’t get the required EEG that would have confirmed our concerns around B being in non-convulsive status epilepticus. So if any of you out there are thinking about going into status, make sure you don’t do it on a Friday in Dorset. Poole EEG department ain’t got time for that shit. (In fairness, a certain member of Poole EEG department didn’t have time for that shit; the other experiences we’ve had with those guys have been great.) Non-convulsive status epilepticus is effectively a constant seizure state- in literal terms, an actual headfuck. In NCES all of a person’s electrical signals to co-ordinate their movement, thought processes, and general function are completely scrambled; hence they appear dazed, confused, lethargic, vacant, unable to perform usual skills and just ‘not there.’ Although not imminently life threatening, leaving a person untreated in this state for prolonged periods of time will cause neuronal damage; in other words, permanent brain damage will start to happen. In a child like B we simply cannot afford for him to lose communication, skills and function that has taken years to consolidate.
So, after two incredible weeks of fairly good seizure control, the beast returned with a vengeance. It was hideous to watch, so I can only imagine what B was going through. Lessons have been learned. Next time we won’t wait to see how it pans out, we’ll act ASAP with the urgency that should be applied to any child showing unresponsiveness and complete polar opposite behaviour to their normal. Especially since this is a child with a multitude of diagnoses and difficulties. Today I have spent time debriefing with school and speaking to medical staff about protocol should this happen again. We’re all on the same journey aboard the Unknown Express to Who-The-Hell-Knows-Where. The ride is turbulent at best, soul-destroying at worst, we are all shattered, and we seem to be off road in a place where few have been before.
Today I want to get off.
*The home-school communication book is a vital piece of kit for children like B. Imagine sending your child to school with no ability to communicate how their morning had been, how they were feeling or what was happening to them at any given moment. Then imagine picking your child up from school, asking about their day, and them being incapable of answering you. This is where the home-school diary wins out. Every morning we write the things B can’t say, and every evening we check out the communication from school so we know how his day has been. A little extra piece of admin every day. Because the universe thought we didn’t already have enough.
Tuesday, 9 June 2015
Our family is quite different from those around we know
See, usually each child gains independence as they grow
Learns toothbrushing and getting dressed, and how to talk and smile
Or maybe ride a bike, or cook, or run for miles and miles
Now B’s a rare and precious gem; unique I guess you’d say
He’s almost eight years old but hasn’t spoken to this day
He tries so hard to let us know what’s going on inside
But sometimes it’s too tricky and he ends up way too tired
The memories of baby groups are hard to bring to mind
I sat there smiling outwardly, while way deep down I cried.
The other mums bragged proudly of their babies expertise
And me? Well, I had nothing- it brought me to my knees
While toddlers started chatting, and copying mum and dad
B screamed and roared and cried a lot; my heart it hurt so bad
I tried all the usual parent tricks to try and help my boy
But nothing worked (except sometimes a loud and flashy toy!)
As time went on the fog let up- we had a clearer view
B was slow no matter what we did or didn’t do
A whole new host of issues to deal with day-by-day
A brand new destination, but we didn’t know the way
Appointments, meetings, therapies, carers, respite, jobs
The endless stream of admin that never seems to stop
People say “I couldn’t…’ but we really have no choice.
Our child’s so very vulnerable- we NEED to be his voice
Every day is different, but the common running thread
Is that B needs someone there with him right til he goes to bed.
The things you take for granted which your able kids can do,
Are things we need to do for B; for him it all seems new.
Despite the tricky challenges a special child can bring,
He’s taught me how to laugh through tears; instead of crying, sing.
The world puts so much value on measuring our worth,
But worth cannot be measured for each person on this earth.
Who can price an attitude that valiantly soldiers on?
A laugh? A smile that lights up hearts? A softly whispered song?
The touch that wipes a tear away, the deep connected life
That bonds a son to mother, and a husband to his wife
Next time you see a child like B, I urge you to look deep
To see beyond your first glance to the soul that’s underneath
Disabled? Yes. But more than that, a strong and gorgeous boy
Who causes lots of chaos, but brings enormous joy.
Monday, 8 June 2015
So, this week is rare chromosome awareness week, and I’m attempting a blog-a-day in the spirit of raising some awareness around the impact of a rare chromosome disorder on every day ordinary life with our everyday ordinary family.
I thought I’d start at the beginning, seeing as much of the focus on social media today is on D-day- diagnosis day. I can’t remember the actual day or time we received our news, but I do remember not having the first idea what any of it meant. And I also remember how I felt. There had been almost three years of appointments, therapies, watching my baby boy’s future unfold into an entirely atypical toddlerhood and fighting to get medical professionals to listen to my concerns in the lead up to D-day.
When B was born, he was dead. Clinically speaking. His Apgar score was one, and when he was placed into my arms he was the same grey-blue colour as a dolphin. Unfortunately due to all my babies being back-to-back, and the odd labouring pattern this brings about, I only had a student midwife present at the delivery since they thought I would be pushing a lot longer than I actually was. After what seemed like an eternity the student midwife pulled the emergency buzzer and a whole paediatric crash team came bursting through the door. I had just enough time to watch S’s wavering expression as he weighed up staying with me versus following our lifeless newborn outside as they worked on him beyond my view. He went with B, which I am forever grateful for. B was small and vulnerable and he needed his daddy.
Apart from some hypoxic shock (where your blood gets too acidic since it’s been transporting carbon dioxide rather than oxygen around, and your body tries to compensate) B pinked up nicely after being bagged and we were allowed home the next day. Or, as is the case in a lot of overflowing maternity wards, politely moved along! We proudly took our beautiful firstborn son home, but B was unlike any of my other children- while the girls had to be constantly upright and watching the world go by, B lay on his playmat disengaged and disinterested in his surroundings. The girls sat up at five months and continued to hit every milestone far earlier than their peers; B was floppy like a ragdoll and didn’t manage to hold his head up properly until around nine months. The girls were constantly babbling and chattering, while B made no noises at all. The only way I can describe it is he seemed to be born without instincts; no recognition or crying for hunger or tiredness, and no outward need to be held or interacted with.
He also did this odd little thing from time to time where he would suddenly go blue, pedal his arms rigidly, and stop breathing. Me, being the no-nonsense mum that I was, presumed it was just a wind issue or something because he would always return back to normal afterwards. I was concerned enough to mention it at his eight week check-up though, and the doctor looked at me like I was crazy. Right on cue, B decided to show off his skill and the GP freaked out and sent us straight to A and E. Absolute utter parent fail. He then did it again once we got to the ward and the whole place erupted- they whisked him from me and worked on him to get him breathing again. I was completely mortified- I’d been letting this go on for eight weeks, and given the reaction of the hospital staff, this was clearly NOT the right call on my part. Ooops. We were admitted and discharged a week later no closer to unravelling the mystery, but had been made to undertake resuscitation training should the need arise. B continued to stop breathing at random moments throughout the first year of his life, and it became the norm for us, although B has scared the shit out of many a Joe Public in his time!
One chaotic episode followed another and it became increasingly clear our little boy was far from ‘normal’. We were referred to Great Ormond Street to test for muscular dystrophy, but that came back clear. B had weekly physiotherapy which (slowly) helped build up his strength. Our community paediatrician was entirely unhelpful and wrote me off as a neurotic parent since I was so young and as she saw it, slightly Google-happy. I, however found the world wide web a brilliant source of help. I did a lot of research around B’s symptoms and kept coming back to autism. Heading to the National Autistic website I noted B hit every single one of their 16 red flags for autism. Armed with this, I went back to the community paediatrician and argued for an ASD screening. She reluctantly agreed, even though she had labelled him with Global Developmental Delay which seemed to satisfy the medical professionals involved with him. GDD is a term given when a- they have no idea what is going on with your child or b-can’t be bothered to investigate what is going on with your child. It describes the symptoms and not the causes of a child’s delays, and in terms of accessing services is pretty useless.
Unsurprisingly, B aced the autism screening and came out with a clear diagnosis of autism spectrum disorder (ASD). He was 26 months old, and all I felt was floods of relief. It was something I’d known for a long time, and while it didn’t change anything, it paradoxically changed everything. Now there was a cause, a reason and we could arm ourselves with a strategy.
Yet I still had a niggling feeling in my gut. A feeling that while ASD was part of the picture, it didn’t explain everything. There were too many other weird and wonderful things about B that were not encompassed by that diagnosis alone. So I carried on researching, and fighting to get B a karyotype. A karyotype is a blood test that sets out a persons chromosomes under a microscope to screen for any abnormality. Things like Down Syndrome, Fragile X, and Angelman’s Syndrome- all examples of disorders where too much or too little of certain chromosomes go on to have serious implications in the bodies and lives of those affected individuals. My community paed sensed I wasn’t the kind of person to give up easily once I had convinced the rest of B’s therapists to support me, and she eventually agreed to do the test. Blood work was sent off to London and usually took a few weeks for results, so we waited. The medics told me there was a 90% chance it would come back showing nothing, since autism and global developmental delay often occur in otherwise healthy people with normal chromosomes.
A few weeks later. D-day. B was almost three years old. The phone rang, and it was the paediatrician from the local hospital with the long-awaited results. Something had come up on the test. As she continued her words blurred and I heard splinters of information but struggled to focus on the whole call. Too much chromosome 15….. maternal side……rare…. geneticist……not much known……a handful of cases in the UK. I hung up the phone and a numbness washed over me. What the fuck did this mean? As I googled duplication 15q syndrome and read over the information I found, I went through every emotion imaginable. Shock, fear, grief, despair, sorrow, anger, relief, vindication. I had fought this all the way, and I was right to have done so. My child was different. Every cell in his body had too much chromosome 15 material which explained all his difficulties. But this was super rare, and not much was known about it. What was known was horrible and very hard to read. Seizures, autism, risk of sudden death, recurrent infections, mobility problems, severe communication delay, profound learning difficulty…. The list went on.
Finally gaining a diagnosis had plucked me from Uncertainty Street and whisked me super speed straight over to Planet Unknown. And then the real journey began…..
Tuesday, 19 May 2015
I’m a British citizen, and I love my country. Traditional cream teas, incredible stretches of coastline, ironic British summers, rainy bank holiday barbecues, and a general stoic attitude to life. I love that my country has a welfare state, a system which endeavours to ensure people’s basic human needs are met, regardless of their social economic status, education, or experiences in life. I love our NHS. In fact, I am hugely reliant on our NHS for B. He has severe medical needs and I am literally dependant on the NHS every single day for his survival. If you haven’t seen the recent film Paddington then you’re missing out. Clever scripting and great performances follow the hilarious adventure of a Peruvian bear, sent to the far flung land of London for safety following a devastating earthquake and destruction of his home. Britishness personified. Paddington also shows some wisdom beyond his years. ‘Mrs Brown says that in London everyone is different, and that means anyone can fit in. I think she must be right - because although I don't look like anyone else, I really do feel at home. I'll never be like other people, but that's alright, because I'm a bear. A bear called Paddington.’
Following the recent election I’ve been trying to collate my thoughts into some sort of legible piece- something which proved a lot harder than I first imagined. Whichever way you voted, there’s no doubt that the result was a shock to the British public; an overwhelming blue majority left the rest of the country wondering where it all went wrong. It’s true that our seat system doesn’t make for fair democratic representation. It’s also true that a third of the eligible electorate chose not to use their vote, but, those things aside, the overwhelming feeling on Friday morning across the country was a bleak and hopeless one. Maybe it’s because I hang out with people of a similar mindset, but my social media feeds were full of people desperate to know why we had not only voted the same government in again, but how this time round we’d voted them in to govern alone.
Austerity has hit hard the last few years, globally as well as nationally, and as a working class member of society with a disabled child the cuts have been deep and wounded us savagely. I know it’s terribly un-British to talk about the m-word, but hear me out. The leaders of today’s government are privileged enough to have come from homes where private education, private healthcare and well above average incomes abounded. David Cameron himself said he wasn’t in politics to defend privilege, but instead to spread it. I’ve unfortunately not felt the benefit of any of that privilege-spreading. In my lifetime, rents and house prices have soared, those from low socio-economic status have been priced out of higher education by ever increasing tuition fees, and the cost of living has risen disproportionately to the wages people earn. Forgive me Mr Cameron, but that doesn’t sound like the furthering of privilege. On the contrary it suggests the intensification of an ugly elitism already prevalent and hell-bent on polarising the British people into those able to build on inherent wealth and privilege, and those scrabbling around in a wholly unsupportive and unrealistic economic climate.
Stripping back all the political rhetoric, I want to make this personal. I grew up under Thatcher’s regime; born into poverty to parents struggling to make ends meet, and the first child of a sick mother and an uneducated father. Of course back then the kind of sickness my mum suffered with, mental illness, wasn’t recognised like it is now, and services were fairly non-existent excepting admission to psychiatric institutions for those most severely affected. After mum had me, she went on to have my sister, and her mental health deteriorated steadily with the pressures of raising two small children alone on minimal income while our dad found forces work abroad to make ends meet. She didn’t have family close by, and our only support network was the local church, which was, incidentally, incredible. The thing is, my mum needed more support than a cuppa and a shoulder to cry on. She needed professional help to manage her bi-polar disorder (and other associated diagnoses) alongside bringing up her kids, not least because on my fourth birthday my dad decided it was all too much and left in search of a newer, better life.
That was the beginning of a pendulous existence for Mum, swinging wildly between varying periods of institutional ‘care’ and managing at home with minimal community support. For us as children, it meant a life spent carouselling between friends houses, home (where we cared for mum, presumably to save the state money on essential professional support) and short or medium term foster placements. The nature of mum’s disorder meant she was often unable to get out of bed or function on any sort of living standard level. Serious self harm featured regularly, and she acted impulsively, failing to adequately manage the little money she was offered by the state to ‘live’ on. Dad was never held to account in contributing financially to support his children, and so responsibility for our survival as a family fell to mum. Responsibility she just wasn’t able to deal with. The worst thing about this all? We were mum’s world; she would have done anything in her power to keep us safe and give us the life she never had. But that’s exactly the point- none of this was within her power. She was ill. Just like cancer, except that this sickness didn’t qualify for support from the system. And like cancer, this sickness led to a downward spiral of guilt, anger, and more depression, exacerbating the already hugely prevalent issues in our little family. Some weeks we were sent into school with a packed lunch consisting of nothing but a piece of buttered bread and some water. Other weeks we had to be taken home from school by teachers since mum never made it out of bed that day. I remember being chilled to the bone during double glazing and central heating-free winters in clothes and shoes that were frankly inadequate for such inclemental weather. All the while feeling the responsibility of caring for Mum and my younger sister; making sure I knew the numbers to ring if I couldn’t wake Mum up, or scraping together a hot meal from the freezer to feed us, reassuring my sister that whatever happened I wouldn’t let them split us up if we had to go into care again.
Essentially, while the Tories continued to bring the country into economic success, families like ours fell off the radar. Poverty was pushed out of sight, where it remained out of mind for those who weren’t affected. Blame was placed squarely on the shoulders of those who found themselves in less than favourable circumstances, and while the country thrived from the outside, a whole subgroup of people went deeper and deeper into despair.
My mum actually passed away in January of 2013. For her, the damage inflicted by the system supposed to protect and support vulnerable people was too much. She passed away from pneumonia at the age of 54 during a particularly cold winter, too scared to switch on the one gas fire in the house for fear of not being able to pay the bill. Her mental health had by this point impacted on her physical health, and she had a host of additional physical diagnoses which became too complex for any one field of doctors to deal with effectively. Mental health professionals decided she needed medical support, while medical professionals passed her care to the mental health department. As such, everyone became complacent in her care, and as a direct result, she died. After her death I found over £30,000 worth of debt in her name, lots of it amassed through loan consolidation companies that had done nothing but increase her troubles, preying on her at her most vulnerable. Banks had lent her money she could clearly not afford to repay, and her embarrassment and shame was such that I never even knew about any of this until after her death.
This is the true cost of austerity. Real people, in real situations, with all-too-real struggles. I’m a British citizen, and I love my country. I love its people. And I see far too often, how the government does not. How the mantra of the middle classes is money first, people second. I know the system is strained, and I know decisions need to be made about tightening our collective belt, but what does it say about us as a nation when we use that belt to choke those who already have no voice? I want a better future for my boy and others like him. And as a wise man once said, a nation should not be judged by how it treats its highest citizens, but how it treats it’s lowest ones. Do we really value diversity? Do we treat those lowest citizens with the respect they deserve just because they are fellow human beings? Can everyone, like Paddington, fit in, even when they are different?
Manifestos and policies are in danger of reducing people’s worth to what they are able to contribute economically, but humanity demands a different measure. A measure not easily identified by charts, or graphs, or numbers, but one of higher-order thinking. My child will likely never be able to contribute financially to society, but he has taught so many people so much on multiple levels. We cannot and must not use people’s economic ‘worth’ to make decisions on the help and support they are entitled to; this moves us as a nation into seriously precarious territory. I’m an idealist, and in a country as rich as ours, no child should be going without food. No disabled person should be lacking in care support necessary for their basic human dignity. Those with mental health problems should be adequately supported, not institutionalised. Those struggling with poverty-stricken environments should be facilitated, not vilified. Please, please, think for yourself on these things. Because this matters; literally, in a life and death kind of way, this really matters.
Humanity necessitates humility, and humility means sometimes saying, we fucked it all up, let’s start over. I can’t change my childhood experiences, but we owe it to the next generation to change theirs. Everyone is valuable, everyone has something to contribute, and everyone is worthy of the chance to be the best person they can be.
Success is a dreamer who never gave up. Let’s dream the dream together and make a better world happen.
Tuesday, 6 January 2015
A good friend recently suggested I write about where I’m at on my current journey with church, and more importantly, my current journey with God. As a forewarning I’d like to make it clear that this piece is in no way meant as an underhand dig at Christians, or a vent for my less than pleasant feelings towards church and some of the people in it. I don’t have any issue if you choose to take up the Christian faith (or any other faith for that matter); your particular life choices have no bearing on me and are entirely yours to make. So before you get your knickers in a twist reading my potentially ‘offensive’ opinions, hear me out. This is my personal take on life from where I happen to find myself right now. Brutal? Perhaps. Honest? Always.
Most of you who know me will know that up until recently, a huge part of my identity was my burning passion for Jesus. I wholeheartedly believed in the fundamental gospel, that I was inherently in need of saving, and that God had provided a convenient route via Jesus’ death and rising. Furthermore, I felt the need to share this truth with all I came across, to ensure they didn’t befall a fiery eternal death, and to ‘win’ people for the ‘kingdom.’
Even writing those words is difficult now. I cringe when I think of all the jargon and judgment I poured out on so many who were unlucky enough to cross my path. If that was you, I’m truly sorry. My arrogance was born out of a genuine concern for people, based on the ‘truth’ I built my life on, but looking back, I was a total numpty. It’s not all bad though. I made some incredible friends on my Christian journey. Perhaps it was the social glue of a common belief system, or the minimal group paradigm; whatever it was, some of those friends remain friends for life in the truest sense of the word. I also geared my life to helping others, by no means a bad thing.
The falling out of faith came slowly, then all at once. A bit like falling asleep, except this felt like waking up. The more I stepped away, the more clarity I had. It started with irritation at people offering to pray for us when B wasn’t sleeping. And by not sleeping, I mean not sleeping. At all. Ever. People prayed and nothing changed; and when they asked and I honestly told them nothing had changed, they would step up with some bullshit about God’s plan being bigger than we can understand. There was literally no good to be had from B not sleeping, so why couldn’t an all-powerful, all-loving, all-knowing God just do something about it? Oh yes. There must be a bigger plan. One that God in his infinite wisdom had chosen to withhold from little old human me.
This dissonance between what I was taught about God and what I actually experienced in my everyday began to grow. People would share about how God gave them a parking space, or how they suddenly had money during a period of financial difficulty, or how God had answered their prayer about the lady down the road accepting their invitation to a church event. All the while I was delving deeper and deeper into a world totally beyond my control. A child whose needs continued to become increasingly complex; who didn’t sleep, who had multiple medical issues, who became a danger to himself and others around him and whose future was entirely unknown. So God answered prayers about parking spaces but remained silent on things that actually mattered. Bigger picture stuff apparently. It didn’t sit right with me.
Being completely honest, working for the church has had its downsides and did nothing to reconcile the struggles I had. At best, the tactics used to ‘win people’ are misguided, at worst, manipulative. I’m talking as someone who has seen and experienced the inner workings of church. Granted, not all churches operate in the same way, but when the secular world offers better support to it’s employees than the Christian sector, something is out of whack. I have painfully watched my husband suffer completely unnecessarily as a direct result of decisions made by the very people meant to be supporting him, supporting us. The reason? The relentless pursuit of agenda and programme; the chase of masses over the minority.
At this point I chatted to some trusted friends about how I felt. Some were helpful, some repeated the bigger plan mantra like a broken record. Probably the best advice we had was not to throw the baby out with the bathwater, not to make big decisions about faith off the back of emotional hardship. Good advice. I went away and started to research the whole thing. Origins of Christianity, church history, anthropology in general. In truth, I was desperate to find some tiny thread of conviction to keep me in the faith. Letting go of something that has been your way of life for so long is not easy. It’s unsettling, and difficult, and shifts your entire outlook in so many areas. Equally, remaining part of something I could no longer truthfully conform to is not who I am. I’m hardwired personality-wise to be true to myself and true to others; naturally non-conformist, you might say.
Despite my desperation to find the anchor I needed in my adrift state, the more I read, and the more I observed, the less convinced I was. The horrific genocide in the Bible, justified by an all-loving God. The gruesome wars that continue to the present day based on faith. The controlling manner of an institution that expects people to conform to what it thinks or run the risk of being sidelined for expressing a different opinion. The disrespect and arrogance of pushing ‘truth’ on a world capable of making it’s own decisions. A creator God, who created us knowing we were inherently flawed and then punished us for it anyway. An overarching idea that we’re screwed from the start; worthless and destined for death without the intervention of the God who created us that way in the first place. A God who supposedly wants a friendship with his people, but remains intangible and mysterious when things go to shit, who could change things but chooses not to. The Bible, really? A collection of writings picked out by a committee back in AD 363, which Christians can’t even agree on.
The deal breaker though, came in repeatedly watching church services and meetings where the atmosphere and ambience is cleverly orchestrated by the set-up (music, persuasive language etc.) to facilitate an ‘experience with God.’ A kind of high, if you like. The same emotional feeling one might undergo at a particularly touching concert, or when reading a good book. Except when this happens, and is encouraged, in a Christian setting the person involved is informed that God is at work in them, and the emotionality of the situation is exploited to full gain of the church. I have unwittingly been part of that very set-up, setting the lighting just right, and putting on emotional music in the background to invoke an environment where essentially people are made vulnerable and their responses can be attributed to God being at work. This emotional component is a common thread throughout all faiths, meditation etc. and seems to fulfil a human need. That’s great. My issue comes when this is attributed solely to the God of Christianity, with all other parallel experiences being written off by the church as human or demonic based activity, in and of itself wrong and unhelpful.
I look back at what S and I did as youth pastors and for the most part feel a sense of pride at giving the young people fun experiences. We were pretty good at what we did! ;) Then I remember the teaching times and, as much as we always communicated to the kids to go away and weigh things up for themselves, we also told them what we believed to be God’s truth. Essentially, given their vulnerability as adolescents and their trust of us, we told them what to think. I hate that I did that. Looking at my own kids, I want to give them as broad an experience as possible. I want to teach them to be decent human beings, but aside from that they should be free to believe whatever they determine is the right path for them. To bring them up in the constraints of the Christian faith, with a fairly narrow mind-set, is unhelpful and confusing. I know of too many young people who have major issues because their thought processes conflict the teachings they have been brought up with. They go through their teen years, which are difficult enough, with a heavy burden of guilt and shame about what God, their parents and the church may think of them. I don’t want that for my kids.
Equally, I see all the awesome things the church does for society. Toddler groups, parenting courses, marriage courses; all brilliant community builders. My sticking point is the claim of the church that these things are building God’s kingdom. In their opinion that’s what is happening, but to someone no longer subscribed to Christian theology these things are just awesome community events. I guess my main issue is the Christian arrogance that their way is THE way. I cringe saying that, remembering the many times on an evangelistic rant telling people outright that God’s way was right and their way wasn’t. ARGH! Sorry people! How absolutely disrespectful. Prefaced with ‘I believe..’ or ‘My opinion on this is..’ I have no issue, but when ideas are communicated as fact we run into problems.
In conclusion, where I’m at is this. I can’t believe in the God of Christianity anymore because ultimately, it makes no sense to me. Trying to resolve the dissonance between what I have been taught and what I have experienced of God takes too much energy and emotional expenditure. Energy and effort I just don’t have to spare.
Am I the same person? Absolutely. I still maintain a positively altruistic take on life and make my decisions accordingly. I am still capable of doing good stuff without needing to put it down to God working through me. Equally I am still able to mess up and recognise the need to take full accountability for it. I no longer feel at odds with myself, a frequent feeling in my previous Christian journey. If I want things to change in my life, I am responsible for changing them with action, not a wing and a prayer. I’ve honestly never felt more empowered and liberated. Please don’t pity me, or pray for me, or make judgments on my angry and embittered soul. Not that I should even need to say this, but I’m not angry, or bitter, and I’m not temporarily absconding. I’ve not had a glitch in my faith due to circumstance. Right now, this is where I’m at.. And it’s an amazing place to be.
I don’t know what’s out there, but I do know this. I will continue to work towards making the world a better place to be through my actions and choices. I will keep loving, keep hoping, and keep on keeping on regardless of what life throws my way. But personally for me no god is part of that picture. I’ve got it covered myself.
Peace, love and light friends, whatever your belief may be.