Hello? Is anybody there?

I had an interesting conversation yesterday with someone from the mental health trust about some of my stranger mental episodes, the ones where I feel completely separated from myself and my own life. Sometimes it's as though I'm observing the world through a pane of glass. I often feel completely disconnected, have no feelings at all, neither good nor bad, and I can even start to feel as though I'm unreal and my life is unreal. It can be quite distressing at times and it definitely creates a certain amount of distance between me and the people I care about. Anyway, I've now been given a name for these experiences - they come under the broad heading of "dissociation."

Dissociation is a form of psychological defence that has been called "the escape when there is no escape." I'm simplifying here but it's seen as the brain's attempt to protect the person from unpleasant experiences -  events that are so traumatic they can't be processed and instead are 'pushed away,' denied and compartmentalised. Used as a buffer against trauma, this protects the person from an unpleasant reality they'd rather not face. Unfortunately, over time, the process can start to take on something of a life of its own and the person can continue to dissociate even during non-traumatic experiences, thus interfering with their ability to be fully present within their own life.

There are many forms of dissociation, ranging from day-to-day experiences that most of us are familiar with, such as making a familiar car journey then not remembering how we got to where we were going, or getting lost in a good book; to full blown identity splits in dissociative identity disorder (the more recent name for what used to be called multiple personality disorder). Clinically- significant dissociation is believed to be an over-zealous defence against stress, but whereas in most people the dissociation is transient and reversible, in some people it has longer-lasting effects.

Dissociation can sometimes be a symptom of an underlying mental health issue such as bipolar disorder, but it can also exist as a standalone issue. Specifically, I experience what's known as depersonalisation and derealisation, as well as a good bit of identity confusion. Go me! Intriguingly, it's linked to migraines - something I get a lot of - and epilepsy too, so it appears there may be a neurological connection.

From my point of view, I'm thankful it's recognised as an actual 'thing' and is not simply a case of my wayward brain acting up. I can see how it's a learned response to stress - in an attempt to protect me from psychic difficulty, my brain holds things at arms length to the extent I feel separated and remote from my own life and even start to question what's real. I'm comforted by the knowledge that it's an exaggerated version of what most people experience. Personally I don't see it in terms of illness; I see it more as an adaptation that was once useful but has now become unhelpful.

I'm intrigued about the extent to which dissociation might be related to having a good imagination because it's common for children to dip in and out of "real life" and retreat to what's inside their heads. And not just children, we all indulge in a little daydreaming here and there. Maybe some of us are a little more reluctant than others to return to the real world? It obviously serves a purpose otherwise it wouldn't stick around but I'm finding it troubling and distracting so I'm hoping I can tackle it (along with a host of other stuff) in therapy.

Some thoughts on mental health services

As you know, I've begun the data collection phase of my research and I wanted to write a little about a consistent theme that's emerging. It's to do with expectations versus reality when it comes to mental health care. What I'm seeing is a real sense of disillusionment among many people who enter the secondary mental health system (that is, they're referred by their GP to a community mental health team or CMHT). For some people, unless they are hospitalised, it seems that 'care' equals medication and a brief chat once every couple of months with a psychiatrist. Possibly a brief intervention with CBT. If someone is deemed to be in greater need, they might receive some nursing support from a CPN or get to see another mental health professional, such as a psychologist or an occupational therapist. In some cases, a mental health social worker might be involved, often to co-ordinate practical matters (such as to do with caring for children, dealing with housing problems and so on). But for many people, the story seems to be that they are given medication and then feel as though they are 'parked' on drugs, with very little ongoing support, other than being advised to see their GP in between psychiatry appointments. In a sense, this mirrors the experience of physical health problems -  if you're 'well' enough not to be in hospital, then you're sent home to get on with things and advised to see your GP if you have any problems.The difficulty with mental health is that all too often, the problem ('illness' if you prefer to see it as such) tends to have its origins in the complexity and difficulties of life, so in sending people right back into that life, unchanged save for medication, how can they ever hope to get well?

If a person's problems lie in relationship breakdown, difficulties in coping with being a lone parent, anxiety around housing and money worries, or they have a background of abuse and neglect, multiple trauma and losses (some people are managing all these things and more), then how can medication with nothing else help? It's a fundamental problem in mental health and one to which I don't pretend to have easy answers. I realise that the remit of the NHS is not to extend itself into people's private lives but it strikes me that just medicating people and leaving them to it is only storing up problems for later -  whereas some may recover or their circumstances improve, others will become 'revolving door' patients.

What has struck me during the course of my work so far is the disappointment that people feel when they realise that for some, diagnosis and medication is as good as it gets. Perhaps the disappointment lies in the belief that the mental health services can, and sometimes do, offer more. As one person pointed out, in some cases, people simply don't receive any 'care.' Services are patchy and all too often, it depends on where you live, which CMHT you're referred to, which consultant you're under and so on. Only a minority are referred for NHS psychotherapy and speaking from experience as a patient, you have to jump through a lot of hoops to get that, it's not routinely available. But when you're unwell, do you really want to have to jump through hoops? For those who are very unwell, it may be impossible.

I realise that in-depth psychotherapy may not be everyone's taste; it involves a long term time commitment, for a start. But the CBT offering that was promised to transform the lives of many has proved disappointing. Again, some individual therapists are brilliant but others rely too heavily on the manual and ignore the real person sitting across from them. Many people are deemed unsuitable for IAPT on the basis they have more complex needs (I was one of those people). So what do they get? In my case, it'll be psychotherapy but as I've mentioned,for a variety of reasons, that isn't an option for everyone.

Some people say they need help with emotional problems, others need more practical support to help them get on with their lives. If it's not the remit of the NHS to act as a counselling or advisory service, or to do the work of social care,who fulfils those roles in our increasingly atomised society? The voluntary sector is already overstretched, with many services affected by cuts and needing to scale back (that's where they aren't having to close down altogether). NHS mental health services are organised in such a way as to discourage 'dependency, ' but the question is where else can people turn when there is genuine need? 

It seems that there's a gap between expectations and reality when it comes to mental health services and what you get is whatever's available, which is, in some areas, not a lot. A diagnosis, a prescription and told to see your GP in case of any problems, now go away and get better. It's nowhere near enough. 

My problem is not your problem

Having a mental health problem is a bit like being pregnant; people just love to appropriate your experience. Sometimes people talk about what’s happened to them as a means of showing solidarity, which I quite like, as long as it’s not assumed that my experience will automatically be the same. Unfortunately though, all too often this spills over into advice-giving. Oh yes *rolls eyes* people just love to offer their wisdom, whether or not it’s asked for. There’s often an agenda, whether the person realises it or not. Sometimes the agenda is explicit – “you know, things would work out so much better for you if you just…”or “if you try (whatever it is they happen to believe works).” That kind of thing. Unsurprisingly, I have a few things to say on this subject. Firstly, unsolicited ‘advice’ is unwelcome because, well, it’s unsolicited. If I want advice, I’ll ask for it, thank you very much. To assume I am in need of help or advice feels patronising, as though you don’t have confidence in my abilities to source the right kind of help or do what works for me. For all the other person knows, I might be doing it already, have already tried and rejected that approach or simply have enough ideas of my own, thanks. Such ‘helpful’ interventions assume all manner of things that the self-appointed advisor probably doesn’t know, but most importantly, it makes me ask “whose mental health is this?” Because last time I looked, it was mine. More than one ‘helpful’ person has asked me what medication I’m on, or what dose. And they have the temerity to act all offended when I tell them that’s my business. I know it’s well-meaning and I know you “just want to help,” but rather than impose your ideas on others, why not ask “is there anything I can do to help?” Or maybe, you know, offer your services as a listener. The details of my life are not up for discussion unless I choose to make them so. Just because something worked for you doesn’t mean it’ll work for me, or that I necessarily want to try it. I don’t need to be rescued; all I ask is that people be there for me if I need them and maybe just check how I’m getting on from time to time. If I want to talk, I will.

Another research plug

http://www.volition.org.uk/audible-thoughts-research-project-mental-health/

Research website

If you are 18+ with lived experience of the NHS mental health system, please consider taking part in my research. Further details and instructions about taking part can be found here
audiblethoughts.org.uk

Measuring what shouldn't be measured

Apparently there’s been another one of those “prodigiously clever children” programmes on TV recently. I didn’t watch it, but I watched the Channel 4 version earlier in the year, in which a number of mini-geniuses were pitted against one another in a sort of intellectual Olympics. This created an interesting jumping off point for me to write about our obsession with measuring things. In my opinion you see, intelligence can't really be tested. How can it be, when we can't even agree on what it is? Even in academic psychology, where they love devising creative ways to measure human diversity, the tests have been largely discredited. The tests measure ability to complete the tests and that's about it. They are still carried out, but it's with the resigned acceptance that for all their flaws, they are still the only measure we have.  Which is fine, as it goes, but it's a bit like being a champion crossword solver - great if you enjoy that kind of thing and do it for fun but otherwise, so what? 

What was interesting to me was the reaction from the viewing public. I remember that Twitter went into overdrive at the time, discussing whether it’s OK to encourage children to jump through these kind of hoops. Questions were raised about whose agenda was being advanced by such events - the belief that it’s really ‘all about the parents’ was very common, leading to the inevitable accusations of pushy parenting.      

The parents featured in the programme might say that this is rather unfair; after all, those who encourage their kids in the arts, sport or music don't get anything like that kind of criticism. And in a way, that's true; those who spend many an hour at the side of a football field, athletics track, dancing class or swimming pool are rarely accused of effectively abusing their kids, so why the parents of clever kids? I think the programme title "Child Genius" doesn't exactly help, but I think the problem runs deeper than the idea that someone else has really clever children, I think it's the suspicion of coercion. Many people find it hard to imagine that anyone, least of all children, would do those things for fun. Anyone with a small child will know how hard it is to get a kid to do anything they don't want to (extending to 'getting dressed' sometimes, in our house), so I'd imagine much of the 'coercion' is about creating a climate in which these things are valued, a view which ultimately comes to be adopted by the children too. Abusive? I wouldn't say so, but I do think there's a fine line between supporting a child in their interests and colonising their life with your own. At the more extreme end of the spectrum are the experiences of certain well-known examples, such as tennis player Andre Agassi. He famously had a tennis ball mobile above his cot as a baby and a tennis racket strapped to his wrist at the age of three. His autobiography reveals a heartbreakingly sad early life, he was pushed beyond what most people would consider reasonable, was extremely unhappy and even at the peak of his success, hated tennis. It made me wonder whether people believe that the ends justify the means when someone excels?    

Back to our obsession with measuring things, I probably underestimated our obsession with “measuring stuff” (including people). And of course, it’s extremely flattering for you or your child to be painted in a favourable light - I’ve yet to hear anyone boast that their level of intelligence is ‘distinctly average.’ What puzzles me more though is the idea of personality tests. I’m a bit puzzled by the idea that personality is a) a thing and b) that it can be tested. I don’t actually believe that personality exists. I know we all use that word to describe ‘how somebody is,’ a kind of linguistic shorthand but personally, I think who we are is mutable to the point where it’s impossible to say that anyone has a personality at all. I think we are internally numerous and that ‘who we are’ is created as we go about the business of our lives – the self being constantly redrawn and recreated in the light of different experiences. I agree that there will be some fairly constant themes (usually created by our upbringing and the processes of socialisation), but much of it is an active work in progress. The beauty of this approach is that it leaves the door open for us to change those ways, if we choose to. And this is a highly significant point for me. It’s much harder to change a ‘personality’ because when it comes right down to it, you are who you are. If you apply this line of thinking to the growth in diagnoses of ‘personality disorders,’ you can see that if a person believes their behaviour is shaped by ‘personality,’ (which can’t be changed) then they may see themselves as a lost cause. Unfortunately, this view dominates thinking in mental health - research has shown that people with certain personality disorders are discriminated against in terms of treatment. I believe that the vast majority of people can be helped to better understand how and who they are, to explore the ways they are in the world have been helpful (or not) and maybe think about how they might do things differently. It just goes to show that measurement can have unintended consequences.

Worrying about worrying

My experience of ‘going mad’ was the result of me mentally fending off the prospect of the physical demise of my own children, who, I have been told, will need kidney transplants before age 20. My imagined view of their young lives vanished overnight and into my consciousness came things like renal diets, dialysis, the hope that a kidney donor would be found, anxiety that their Dad can only donate to one of the boys (assuming he’s a match for either, which we don’t yet know). I had fears about operations, the damage that renal failure can do to a body, worries that their young lives – by then surely on the cusp of adulthood – wouldn’t be what I imagined. I worried about all sorts of things; immediate issues like their deafness, to more distant but important things, like their education, social lives, being in kidney failure whilst at high school and of course, dialysis and transplantation. I worried about the fact they each probably need more than one transplant during their lives and I worried about the fact they won’t be a priority for donor organs once they reach adulthood. I worried their illness will impact on their plans to travel, their work prospects and their relationships. I worried about their sense of self, how they'll make sense of who they are as people with a rare illness. Overall, I worried because they are too young to fully understand what’s happening and thankfully they aren’t worried for themselves because they don’t feel ill. In short, it was all too much. My hopes for my children were scooped up, shaken about and scattered into the wind. They haven’t vanished, but they’ve been dispersed. Despite all this, I haven’t felt sad and I haven’t cried once. Is it possible to be in shock for several months? 

People kept telling me not to worry, not to be anxious about a future that hasn’t even happened yet. “The future will take care of itself, just focus on the here and now,” people said. Great advice, I’m sure. But firstly, what I’ve been worrying about isn’t some abstract possibility; my boys’ kidneys will fail, it’s not a case of if, it’s when. The manner of it and how it'll happen is unknown but the reality is, it will.  Secondly, telling someone like me not to worry is like telling a seal they can’t swim and instead they should flop about on dry land all the time; worrying is what seasoned worriers do. When we aren’t worrying about something, we feel odd, alien. I’ve been a worrier all my life. If there were medals for worry and plaudits for anxiety, I’d have won them all. I worry about worrying. And I do it all silently, inwardly. Partly it’s because people say unhelpful things like “don’t worry” (uncharitably, I suspect this is more for their own benefit than mine, because they want to be able to make everything all right) but also because privately, I feel ashamed about worrying. I don’t like it and I don’t want to inflict my boring concerns on others. I also feel I don’t deserve to be anxious, because others have it so much worse. (And it’s true, they do, but that’s not to say my life has been a picnic lately either). Incidentally, I dislike the term ‘worry’ when others use it about my circumstances, because I think it trivialises horrible, gnawing, ever-present fears. But yes, I'm a big time worrier and given something this big, it just sent me over the edge of a cliff.

I feel very sorry for the people who had to witness it. They saw my fragmentation, paranoia, fear and confusion first hand. My words and actions were so idiosyncratic (and at odds with the person they know) that they made no sense. For me, I found that the everyday parts of my life became the backdrop to a drama played out in a private, nightmarish landscape. It was a horrible time and so I'm thankful that I'm now well enough to write about it. I daresay this might seem like a terribly boring, self indulgent post but to me it's important. So thank you for reading what I've written.     

Everyone is a story

Health stories form part of our cultural landscape. We’ve all heard the tale of the Great Uncle who smoked 60 a day and lived to be 90 years old. It’s not always clear exactly whose uncle he was, but still, it's a great story! Families have these stories too, such as the time a relative absconded from hospital just before an operation, walking home in his dressing gown (this one is completely true, it was my Dad, but thankfully the operation was only a minor one!) There are mental health stories too and that's what my research is about.

We know that telling stories (narratives, in academic lingo) is an important way of making sense of the things that happen to us. They also tell us who we are. We are re-imagined in stories, a range of possible selves is within reach. Jerome Bruner said they’re often told when something important happens in or lives; it might be a danger or a challenge, or it might be something positive but we don’t tend to tell stories in which nothing happens. What’s interesting is that it’s not just a case of “stuff happens then we talk about it,” we actually use stories as a way to understand our experiences. So, in telling the story, we are also making sense of life events and ourselves. The plot will alter according to personal circumstances, mood, previous experiences and it will also be shaped by culture, family traditions and so on. A story can be told as a way to help us understand what’s happened, but each event could be 'storied' in a number of different ways. In this way, our experiences are something to be discovered, rather than concrete entities with one ‘official’ interpretation.   

My research work involves hearing people’s stories about their mental health. I’m no stranger to this; as a counsellor, I've listened to literally hundreds of life stories. At various times, I've been saddened, inspired, motivated, enlightened and entertained by what people had to say. I was already aware of the therapeutic value of story-telling and being heard and knew that the telling of a story could aid someone making sense of things. I acknowledged that the stories I was hearing might be rather different to the ones being told elsewhere in that person’s life; such was the privilege of doing therapeutic work. 

I also knew that often, someone would have pre-existing ‘stories’ in their mind, so their more recent experiences would take their place alongside the old. When someone has a number of pre-existing stories, they are liable to repeat old patterns because they make such intuitive sense; it’s just “how it is” for that person. As such, they can find themselves doing things that aren't always in their best interests. Part of the business of therapeutic work is to understand and possibly challenge these old stories by asking (in a variety of ways) "how’s this way of seeing your experiences working out?" And the response to these questions will vary, according to a person’s ability and willingness to introspect. It’s a difficult task to witness someone continuing with a pattern of behaviour that doesn’t exactly help them, but by asking the questions, the person is free to follow it up, if and when they want to. 

My research is, in a way, a continuation of this hearing people's stories. My task is to collect lots of stories (data) and put them together to create a kind of ‘collage’ of experiences. I'll then be providing some commentary, with a few psychoanalytic insights. It's more a mosaic than a collage, but my preferred way to describe it would be to say it's a bit like a kaleidoscope. A mosaic implies that the pattern is ‘fixed,’ whereas to me, human experience is anything but static. Just because we might think we see / think/ understand something now, it won’t necessarily look that way in a fortnight, or a couple of months' time. I want to reflect something of the dynamism of human lives in my work. Unfortunately I won;t be able to witness people's understanding evolve but I can take a snapshot of where they were at a given point in time and (hopefully) say something interesting about that. Just as it was when I did therapeutic work, it'll be such a privilege and I'm really looking forward to being part of it.

Institutional Anxiety

As some of you will know, my PhD involves applying psychoanalytic insights to the way NHS psychiatry works. Previous research tells us that in the UK, the NHS "contains" social anxiety that we might become ill, elderly or frail. Similarly, in mental health, we know that psychiatry and the mental health system operate as something of a 'psychic shield' against anxiety that we too might become mad. We also know that faced with the emotional burden of caring for patients, healthcare staff employ a variety of psychological defence mechanisms, including denial and projection, to offset what's been termed 'institutional anxiety.'

Personally, I reject a too-narrow focus on the biological when it comes to mental health and would point to the wealth of research evidence that highlights the role of abuse, trauma and social adversity in its development. This has now been largely accepted within mental health practice but all too often, it gets lost in the talk of dysfunctional brains. My argument is that this happens not only because of well-documented professional pride and big pharma profits, but because in many areas, there aren’t acceptable alternatives - they exist, but they aren’t where you tend to be referred by your GP. More importantly (for me as a researcher) I also believe that medicalised narratives serve another purpose. 

At the level of the subconscious, I believe that medicalised ways of thinking about mental ill health function as a way of containing another form of social anxiety. This comes from the fact that if we were to fully accept the contribution of abuse and trauma to mental health problems, we would be forced to accept that these unpleasant realities are more prevalent within our culture than we'd like to think. And who really wants to believe that so many lives are blighted in such ways? 

Previous academic work suggests that even those who encounter such stories every day; psychiatrists and mental health nurses, can feel uncomfortable dealing with disclosures of past abuse - in the face of such topics, they report feeling de-skilled and tend to want to refer such cases to psychotherapists; often involving a considerable wait. Previous research also shows that mental health staff can feel helpless in the face of huge social problems, knowing they have only medical responses at their disposal. They know they can't go back in time and magically erase people's pasts, nor can they intervene directly in peoples' social circumstances. As such, these feelings of hopelessness are sometimes directed towards the patient; someone who has already been abused, neglected and not heard. Redeploying the problem as residing within the person may feel emotionally 'safer' for health care staff but it comes at the cost of attacking the wrong target - the patient. Sometimes it’s expressed as frustration - believing that people “aren't trying hard enough to get well,” or aren't getting better in the right kind of way. This adds to the patient’s existing depressive burden and often, low self worth. Ironically, we know that engaging in these defensive processes is unhelpful to staff too - it inhibits the creation of working relationships that would help to offset the anxiety and encourages burn-out. 

I’d argue that similar processes occur at a societal level too. The abused, the mad and the traumatised tend to occupy a binary position - either pitied as ‘victims’ (particularly if they are children) but in adolescence or adulthood,the anger that might be rightly directed towards the perpetrators of abuse, the victims end up being on the receiving end of projected frustration, anger and upset about what's happened to them. In mental health, we hear a lot of comments along the lines of "surely he/she could take more personal responsibility for their own wellbeing?" And "This person is taking the piss ' playing the system."   

Our unwillingness to accept the uncomfortable realities of some people’s lives is partly, I think, due to our understandable reluctance to ‘blame’ families and wider social circumstances. It's a big deal to accuse families of failing to provide the conditions in which people thrive. It's a big deal to say we live in an abusagenic culture where we fail to adequately value human life. It’s not always about deliberate neglect and abuse, as awful as those things are. Sometimes, the adversities families face are things like poverty, isolation, bereavement and bullying. These things have become so normalised that they are reinforced at the level of government policy to 
only muted unease. 

Sometimes the patient is equally reluctant to frame their experiences in this way. The counsellor's consulting room is full of people who had 'happy childhoods.' Given such a murky picture, it’s hardly surprising that we tend to frame experiences in terms of brain disorders; it's a highly convenient euphemism. I don't deny that the brain is involved, there's no question that it is. I just happen to favour explanations that locate brains inside the heads of actual human beings; people existing in dysfunctional circumstances and their brains responding accordingly, by fundamentally altering stress responses. (The HPA Axis, if you're keen to find out more). Given the evidence, I find brain-based explanations much harder to believe than ones which say the family and society are often sources of conflict, adversity and harm, as well as providing us with a great many good things. For the purposes of my research though, we know that these things are way beyond the remit of the NHS.

If we are to find any answers to mental ill health, we should be looking way beyond the role of the individual - as instrumental as individuals are in managing their own recovery - and to the way we organise our wider society. I think if we were to accept the role of abuse and adversity in causing mental ill health, we would justifiably become angry, start to kick up a fuss and demand that changes are made, perhaps forgetting that these changes start with the personal. My belief is there'd be some loss in abandoning euphemistic medicalised explanations, but potentially enormous social gain.

x

Ali has been away

I'm happy to be able to say that my mental health is now giving me a bit of a break and I'm able to think clearly again. In short, I feel like I'm back in my brain. Which probably sounds a bit odd but until you actually experience it for yourself, you have no idea what it's like to have your mind taken over, invaded, I suppose, by thoughts that aren't your own. It's horrible, you know you're still 'in there' somewhere, but you just can't reach yourself, you're completely swamped. It's scary, it's overwhelming and I wouldn't wish it on my worst enemy.

You know that phrase 'wherever you go, you always take yourself with you?' Well that describes my experiences almost perfectly. It didn't matter where I went, what I tried to do, who I talked to or how I tried to distract myself, the weird brain crap was still there, clawing away. As it comes from within, there's nothing that the external world can really do to take it away. Activities could distract me, briefly, but I found I could never outrun it all by keeping busy.  Every now and again, "I" would make an appearance but it was never long before I was dragged back into it and I went missing again. Horrible. I honestly wondered if I'd ever be my usual self again.

I've got a lot to do in the next few months, making up for lost time at work, reconnecting with people I've avoided (sorry, everyone) and generally setting right a few wrongs. I'm now reacquainted with the mental health service but it's too early to say whether that's a good thing or how long it'll last. I'm keen to make it as short lived as possible. On a positive note, my psychiatrist is a fan of talking therapy so I shouldn't find myself simply drugged and then indefinitely parked. We'll see.

I managed to write a hefty article the other day on what would be, to most people, an incredibly tedious subject. It helped me prove to myself that I could still think (and write), even if it also showed that my brain is still abit tilted, as no sane person would write about that stuff and actually enjoy it. So a sincere "welcome back" to my regular brain and to anyone I've ignored, avoided or generally treated differently, I'm sorry. I've been away...           

School Holidays

Time for another general post. The school summer holidays are upon us, meaning we get to spend six whole weeks laughing in the sunshine. Or more realistically, I spend six weeks fruitlessly trying to 'entertain' two small people on a tight budget and discourage them from spending too much time on the Xbox / you tube / anything with a screen. I wouldn't complain but when they put their minds to it, the boys are really good at entertaining themselves without technology. They'd just rather not put their minds to it unless they absolutely have to. I do appreciate the hypocrisy of criticising too much screen time when I'm writing this, at 6-something am, in my pyjamas, on, ah yes, a smart phone. I like technology but I'd also like it if my kids played out more, spent a bit more time building their horribly complex Lego creations and maybe even, occasionally, talked to one another about something other than minecraft. 

They're not so bad though, really. Evan has "written a book" this summer. Specifically, he's filled an exercise book with some of his more bizarre observations, imaginary worlds and drawings and so far, it's had the 'select' readership of his Mum and Dad and Grandma, but good for him. I'm encouraging him to write another; I'm not sure a story about a giant blue dog accidentally inventing Pac Man will have a big audience, but still, it's a start.

Reading Evan's book made me realise all over again just how strange kids can be.  You'd think I'd notice it more, considering I live with two such specimens but I think I've become slightly immune to it. Little boys' minds are so incredibly, deeply odd, it's wonderful. We had a guest from Spain recently who my boys had never met and the first thing Evan said to him when he got in the house was "do you wanna see my stick collection and where the woodlice live?" (I mean seriously, who could refuse?) To our guest's endless credit, he said yes and ended up spending half an hour outside in the drizzle looking at small insects whilst his cup of tea went cold. Evan is his friend for life.  

It's no wonder kids struggle in the real world sometimes. I sometimes feel a bit guilty about intruding on their imagination with reality "Evan, can you please set the table?"
'But I'm battling a mutant herobrine!' Hasn't it always been that way, though? I used to get called in for my dinner whilst I was up a tree or something and feel really grumpy about it.
As an aside, surely I can't be the only person whose memories of the 70s and 80s have taken on the quality of the photos of those decades? In my mind's eye, everything in the 70s was a fuzzy, slightly disturbing shade of orange or brown. And all the men had sideburns. Perhaps it's true though, I did grow up in the north of England.

I advocate more strangeness in the world, not less. I think everyone should be able to be as weird as they like, instead of bright, creative kids being expected to 'conform.' (Conform to what, anyway? Normal is a completely made up construct). Strangeness is where the imagination lives and where all the best ideas come from. I'm a big believer that rebellion should be of the mental variety, which is why I feel sad when I read news reports about working class kids (boys in particular) being disengaged with education. That's a rant for another day but let's just say I'm not a fan of the tendency in academia to only permit certain groups to research as long as they are taking the role of human lab rats.

Back to the weirdness of kids, though; if any teachers are reading this, I honestly can't imagine what it must be like to teach 20-something small people but there must be times when it's amazing. Away from the endless paperwork and continual political meddling, the growth of young minds in your care must be an overwhelmingly wonderful thing to observe. (Though I daresay incredibly frustrating at times, too). I hope you're all enjoying a rest.

We still have a few weeks until school starts up again so in between trying to work and wrangle the kids, I'm planning some days out. It's been a tough year for us all so it's important to make time to do the nice stuff too, try and balance things out. Happy summer, everyone!  Xxx  

On being illogical

I don't know whether any of you have seen this but Richard Dawkins has been touting his unique brand of belligerence on Twitter. He was trying to apply logical principles to the subject of rape and child sexual abuse. Rather than summarise what he said, his exact words were...

"X is bad. Y is worse. If you think that’s an endorsement of X, go away and don’t come back until you’ve learned how to think logically.”

“Mild pedophilia is bad. Violent pedophilia is worse. If you think that’s an endorsement of mild pedophilia, go away and learn how to think.”

“Date rape is bad. Stranger rape at knifepoint is worse. If you think that’s an endorsement of date rape, go away and learn how to think.”

“Whether X or Y is worse is a matter of opinion. But it is a matter of LOGIC that to express that opinion doesn’t mean you approve of either.”

(@RichardDawkins 29.07.2014).

This kind of statement glosses over the fact that rape and abuse are inherently violent crimes - that is to say, a person has been violated. A crime carried out with physical violence may be shocking in its brutality, but it isn't "worse." Perhaps Dawkins, and others who think this way, seemingly forget that the majority of these crimes are carried out by someone known to the victim; the betrayal of trust involved serving only to heighten incomprehension and distress. 
  
This kind of 'logic' creates something of a 'hierarchy of legitimate hurt,' within which, the experience of the victim is completely erased. It is instead for the observer to apply a pinch of 'logic' and no doubt a punch of 'objectivity' to the situation, to determine the severity of the crime. There is a sense (to me) that victims of 'non violent' rape or abuse should perhaps be thankful that the crime they experienced wasn't 'worse;' that their legitimate feelings of say, outrage, anger and hurt should be put away on the grounds that others have it so much worse.   

It is clear to me that he doesn't understand what sexual violence is. Employing myth and misconception, he bases his argument on the false premise that rape and abuse have a sliding scale of severity. He erases the voices and experience of victims, attempting to minimise the impact of any rape not carried out by a stranger at knifepoint. (You know, the objectively 'bad' kind of rape.) Considering how many of these crimes are carried out much closer to home, by family members, friends, co-workers and acquaintances, well that's an awful lot of erasure going on.

Interestingly, in the case of murder, the outcome for the victim forms pretty much the entire basis of the crime. It being murder, the victim has inevitably died, regardless of whether their killer injected them with a painless overdose of morphine as they slept, or battered them to death with a lead pipe. As such, the legal system differentiates on the basis of intent (premeditation), in addition to the degree of violence used. I accept that the relative degree of suffering is considered, along with possible mitigation, but my point is really that I doubt anyone would suggest to the grieving family of the overdose victim that 'it could have been worse, they could have been battered to death with a lead pipe!' Which is what Dawkins' "logical" position implicitly suggests to victims of rape and paedophilia. I mean, is there really such a thing as 'mild paedophilia?' He may not be endorsing these things, but he's minimising their impact. 

Perhaps I shouldn't be surprised; Dawkins is a scientist. My own field of research (mental health) highlights the way women and children have been systematically silenced and disregarded for centuries. Pre- 'enlightenment' attitudes that liken women and children to animals thanks to them being inherently irrational, to modern day gendered psychiatric diagnoses (often handed out to the victims of abuse which Dawkins dismisses as less 'serious'), science has a less than glorious history when it comes to women and children being seen or heard. 

Perhaps, as someone who values the role of 'evidence,' Dawkins could acquaint himself with the research evidence detailing the long term consequences of rape and child sexual abuse. Perhaps he could even learn to think a bit 'illogically' and develop some compassion?  

 

What's been going on

It's been a while since I've posted on my blog so I thought I'd let everyone know what's been going on.

The geneticist finally confirmed our diagnosis of x-linked Alport Syndrome. The biggest surprise was that it had come from my Mum's side of the family, not my Dad's. There was some initial confusion about this as various past members of my Dad's family have had kidney disease. It turns out this was a red herring and nothing to do with Alports. So my Mum has Alports and it has now been confirmed that her kidney function is declining; something she was previously unaware of. At least she's now in the system and will get the care she needs.

We now know what to expect in terms of the boys' future kidney failure and it isn't pleasant. We also know that there's a 50/50 chance they'll need transplants before age 20. We suspect this will be the case for our sons as Joseph has visible blood in his wee, both boys' hearing loss was early in life and Joe's urine protein levels remain high, despite the fact he's now on medication. Which are all poor prognostic signs. We don't know for certain but the likelihood is they'll be unwell during their mid to late teens. It would be great if the medication delayed this til their 20s, after leaving school but at the moment we just don't know. It's very much a wait and see.

I felt very sad on the first day Joseph began taking medication because I realised he will be on medication of various kinds for the rest of his life. As will Evan. Currently it's just to protect renal function and slow the progression of kidney failure but inevitably that will increase. As kidney function declines, the boys will go on renal diets, they'll most likely become severely anaemic so will need extra iron, there'll be calcium to offset the effect of kidney disease on the bones (to stop them getting rickets, the consultant said). They'll introduce phosphate binders to aid the success of the renal diet and they'll be given growth hormones if they aren't fully grown by the time this all happens. Plus there'll be medicines to help with them actually feeling unwell And then there'll be heavy duty medication prior to the transplant, then afterwards to stop the organ being rejected. It's no party, having Alports and all medical attention is focused on treating the symptoms because nothing can be done to stop it.

It often feels incredibly harsh and unfair, yet at the moment, both boys are well and they're happy. Despite all of this going on in the background, they are both excelling at school. Joseph will be doing level 6 SATS next year as he's extremely bright and capable (brief Mumbrag there, I do apologise!) Evan is the same in his own unique way. Their hearing aids have really boosted their learning and the school and audiology team have continued to offer first class support. I'm extremely proud of them both and it feels so unfair that a few genetic spelling mistakes have resulted in all of this.

As you might imagine, all of this has taken a huge toll on my mental health. That's why I've been so quiet, I've actually been really unwell. I'm now getting the right kind of help but it takes a bit of time. I've been grieving, I suppose; dealing with the loss of my children's health (and potentially my own, since I have it too. And then of course there's my Mum). It hasn't been an easy time at all. On the upside, for now we are all physically well enough to live as positively as we can. As soon as my mental health permits it, I'll be properly back at work. Life goes on, because it has to.          

Getting on with it...

I realised yesterday that I haven't written a blog post for quite a while so here's an update of what's been going on with us lot. 

First up, some good news. The boys now have their all singing, all dancing, sparkly new hearing aids. Admittedly they don't do much in the way of singing or dancing, but they do sparkle. It was the first day of wearing them to school yesterday and I'm happy to say it all went well. Lots of interested questions from classmates, a fair bit of "take them out and give us a better look, then" and the realisation that school can sometimes be a very noisy place!

I've been really impressed with the way the school have handled the whole deafness thing; they've neither dismissed it nor made it into a big drama. They just see it as some children need a bit of technological and practical support to help their learning and they'll make sure that happens. For Joe, who needs a bit more support than his brother, they're going to set up an FM system that broadcasts the sound from a teacher's microphone directly to his hearing aids, rather than amplifying the whole room. The deaf and hearing impaired team from the local authority will also assess the school's provision to make sure it remains both relevant to and adequate for the boys. Alport's deafness is progressive, so at some point Evan will also need extra hearing support but for now he's ok with his sparkly green ear wear. I'm happy that the school are getting the balance right and are providing practical support to help the boys to get on with all things school related, while we get on with the parenting stuff.

Since I last posted here, a few other things have moved along. The results of several tests have shown that Joseph already has kidney disease. This was a bit of a blow as it moved him from being "at risk" of kidney disease to showing he already has it. This means instead of planning a transplant in the dim and distant future (possibly as late as his thirties), it may well be necessary before he's twenty. End stage renal failure before age twenty means the juvenile form of Alport's and whatever happens to Joseph will also apply to his brother, unfortunately, so the message is very much to get out there and enjoy being in good health!  

In the short term, Joseph has a kidney biopsy in a couple of weeks (to confirm the diagnosis once and for all, and also assess the extent of kidney damage). He'll also be starting medication to prolong kidney function, although unfortunately it doesn't stop the problems altogether. On the plus side, we aren't quite at the stage of the dreaded 'kidney diet.' I was told by a renal nurse "it's a lot less grim than it used to be," which is faint praise if ever I heard it! So for now it's a case of a generally healthy diet, no added salt and avoiding the ready made or convenience stuff. Good dietary advice for any of us, really, and thankfully no need to start thinking about weird practices like double boiling the potatoes. Apparently, many of the tricky foods on a renal diet are vegetables, which  might mean that veg-averse Joe is better equipped than some to get used to that, when it comes along!

During all of this, I've become increasingly aware of the experimental nature of medicine in patients with rare diseases. The doctors told us that Joe's medication could help delay the onset of end stage renal failure. Note the cautionary use of the word "could," as it hasn't actually been tested for that purpose. There's a clinical trial going on in Germany at the moment but for now it's being used off-label, based on promising laboratory results. That's justification enough for me; it's unlikely to cause harm and it may help. Most importantly though, there's nothing else! That's as good as it gets for Alports, until you need a transplant. Such is the nature of rare diseases, I suppose; they're little understood. At the moment, scientists are getting to grips with the genetics side and it'll be great if that also leads to innovations in terms of treatment. I'm almost tempted to don a white coat and have a go myself, but anyone who knows me knows I'm far too clumsy for lab work!

So there you go, a bit of a mixed bag for us all. We're doing ok, the kids are well and as lively as ever. Evan is enjoying his drumming (the neighbours probably aren't, although thankfully he's now getting pretty good!) We've found a music teacher willing to take on a deaf kid to learn the piano (Joe), so in between that, school and their love of Minecraft, Lord of the Rings, Star Wars and Doctor Who, the Alports stuff doesn't really get a look in. Just as it should be!  

Robot ears

Yesterday, the boys went to choose their hearing aids. As I mentioned previously, along with progressive kidney damage, a typical symptom of Alports Syndrome is sensorineural deafness, caused by the ongoing breakdown of the collagen membrane found in the ear.

We knew that Joseph had hearing problems and it turns out he's moderately deaf in both ears. His hearing loss includes the tones used in everyday speech, so it's no great surprise he was struggling to keep up with conversation. Evan is also moderately deaf, but at the moment his hearing loss only affects one ear.

So yesterday was hearing aid day. This involved lots of laughing at one another whilst having ears filled with purple putty to create an ear-shaped mould, as well as the serious business of deciding what colour of hearing aid to choose. In typical understated fashion, Joe's are bright orange and Evan's glittery green. (As you do!) They now have to wait about 4 weeks whilst they're being made, as each one is created especially for the wearer.

The whole experience has reminded me just how brilliant kids are at dealing with things that we adults might consider a big deal. As far as Joseph is concerned, he's "hearing impaired, not deaf, deaf makes people think I can't hear anything, when actually I can." Fair point! For both of them, wearing hearing aids is a simple answer to a simple problem. As Evan put it, who wouldn't want "robot ears?!" And personalised robot ears at that. I'm not dismissing the seriousness or significance of hearing loss, I'm just saying that the boys have been surprisingly matter of fact about it all. I daresay this attitude will serve them well with what's likely to happen in the future with this disease.

The audiologist directed me to this website, where you can hear what the world sounds like to someone with hearing loss.... http://www.hearinglikeme.com/facts/what-hearing-loss/hearing-loss-simulator-understanding-mild-and-moderate-hearing-loss

Have a listen and see what you think! The speech sounds in particular were quite a shock. I'd imagined that sounds might be faint or indistinct, but I hadn't considered how muffled things would be. I realised that the world is organised primarily for the benefit of those who hear well, at the expense of those who do not. Tannoy announcements, for example, are usually made in crowded places with lots of background noise such as train stations, and are very difficult to understand when you're hearing impaired. Joseph told me how in class, he can hear his teacher as long as he can see him (thanks to the benefits of lip reading.) If a lesson involves the use of a whiteboard, then depending on where his teacher stands, this can create problems as he has to choose between either looking at the board or hearing his teacher! Simple things like that could be easily overcome, but unless it's brought to the attention of the teacher, they might not even be aware that it's an issue. I'm sure there are many more examples which I've previously never considered but will soon learn. I was advised by the audiologist, for example, that negotiating traffic and cycling can be more difficult for hearing impaired kids, as they don't have the added input of sound to help them judge distances.

I'm glad the boys will soon have hearing aids to help with some of these issues but I'm also thankful for the reminder that not everyone has full hearing. 

A medical mystery

This week, after several weeks of uncertainty, we have learned that the boys and I have a rare genetic kidney disorder called Alport Syndrome. At this stage, the doctors are going with a "probable Alports" theory, which will be finally confirmed (or not) once we've had genetic testing. 
Alports is caused by a mutation in the genes responsible for building the basement membrane within the kidney. The membrane is made of collagen and acts like a sieve, filtering the blood. In some people, the genetic code for creating and maintaining this membrane gets mixed up and the result is (doctors think) a poorly constructed membrane and one that is easily broken down by the body's natural processes. Similar collagen structures are also found in the inner ear and the eyes and in Alports patients, also tend to degrade over time.
In Alports, the membrane in the kidney starts to leak; subtly at first, but later more dramatically. One of the earliest signs of the disease is blood in the urine. Typically this is in microscopic quantities, but occasionally (in particular when someone has a cough or a cold) it's visible to the naked eye. As the disease progresses, the membrane continues to leak, eventually to the point where the kidneys fail and the person needs dialysis and / or a kidney transplant.  
Our story has been textbook so far. My eldest son Joseph, who's 10, has been becoming progressively deaf, something we initially attributed to the fact he'd had lots of ear infections when he was small. His hearing had been tested age 5 and we'd been told it was slightly below average but still within normal range. We were reassured he'd grow out of having ear infections and his hearing would be ok. Since age 8 though, his hearing seemed to get worse and in the last few months he'd started needing subtitles when watching telly.
In amongst all this, in October my youngest son (8) was sent home from school feeling poorly. Nothing specific, just obviously not his usual lively self. The following day, he'd forgotten to flush the toilet and I noticed his wee looked like coca cola. Off we went to the doctors, he was given antibiotics and we were asked to drop off another urine sample once he'd finished the course. He was well again soon after starting the medicine, so we dropped in the sample, thinking that would be the last of it. We got a call from the surgery later that day; his wee had been tested and whilst free of infection, there were other "abnormalities." Could we make an appointment the following week? So we did. Lo and behold, blood and a trace of protein in his wee. "I'm going to refer him to a specialist as a precaution" our GP said. "I'm sure it's nothing to worry about but these infections are rare in little boys and we need to know why he's got the blood and protein in his urine."
The first specialist ran some tests on Evan and a few days later, rang to say his tests had been broadly normal, aside from the blood in his wee. Then he said "this is just a theory, but with your renal history I think we should have your other son tested. Two of you, different ages and sexes might be a coincidence. Three of you might mean something else. Can you drop off a urine sample at the doctors?" Which we did. And that was how it started; the journey from healthy family to...well, something else.
The renal nephrologist started to piece together a jigsaw. In Alports, a diagnosis is usually reached after first excluding everything else because lots of things can cause blood in the urine. Protein is more unusual, especially in children, but progressive sensorineural deafness is something of a smoking gun; it simply isn't a feature of other renal disorders. The disease is much more serious in males, it's a bit like haemophilia, where women carry it and typically have milder symptoms, but their sons get the full blown disease. In 100% of male Alports patients, the kidneys will fail. The question isn't if, it's when. Genetic testing will tell us whether we are in the 80% of families where the kidneys fail in early life (typically starting in the teens, shortly after the hearing loss becomes noticeable). In some variants, kidney failure is delayed until middle age.  
The future we had in mind as a family is now in question as we have no idea whether the boys will be having dialysis during their teens. Obviously this would have all sorts of implications and perhaps understandably, we are hoping they'll be in the lucky minority who are able to live a healthy life for longer. Even if they are in the majority, there seems to be quite a lot of variation between patients. 
Sadly there is no cure for Alports, although the disease can be slowed with the use of ACE inhibitors (which I'm on to protect my kidney function.) Hearing aids will help and we will all be monitored regularly.
It's now all about living life and enjoying it. None of us know whether we will be in good health next week, next month or next year but the boys are healthy, for now. I predict an ongoing series of adjustments as things gradually start to progress. At the moment for us though, Alports is more of an idea than a practical reality. My kidney function is stable for now, although I'm having another operation in March to correct a related issue.
It's been a worrying and frustrating time and even once we found out what was going on, we struggled to believe it was true. I think we are still in shock at the moment. Definitely a useful reminder that you never know what people have going on in their lives!