Prescription Schism

“Pay £10 to see your GP…” today’s Daily Mirror exclaims, reporting the Royal College of Nursing’s vote to back charges for GP appointments. Beyond the understandably provocative headline, lesser informed cynics such as I aren’t surprised that this has come to pass. Not only because we’re under a Conservative administration, but because the state of the NHS has long emulated the level of basket case.

In England, as of April 1st 2014, the NHS prescription charge stood at £8.05 per item. My repeat script requires coverage for both lithium carbonate (Priadel) at 800mg per day and lamotrigine (Lamictal) at 200mg twice daily . Were it not for my Medical Exemption certificate I would be paying £16 per month for medication that has, arguably, kept me alive.

Curiously I’ve managed a kind of “3 for 2” deal – Lamictal was prescribed for my idiopathic epilepsy, but its often used to alleviate depressive episodes in bipolar affective “disorder”, for which I was prescribed Priadel many years after. In November 2012 Dr Sri wrote a script for an atypical antipsychotic, olanzapine. A third medication addressing the white noise paranoia hissing away in the background, and ultimately a fridge too far in terms of my pharmacotherapy.

That I declined to take the olanzapine is besides the point. My circumstances permit the expense of £24.15 a month, but chronic means chronic, and circumstances can change. I am grateful, I am humbled by the generosity of the British tax payer and, speaking as one of them; I am happy, I am proud that my taxes help provide coverage for others in turn.

But as noble as the National Health Service is, contemplation of its future is likely promote instances of immeasurable terror. I no longer see bipolarism as a disorder, a disease. Living with this disposition, and all of its nuances, I’m inclined to consider it more an immune response than a disease entity in its own right. Dr Sri and I disagree on this point, but his decency and intellect enabled us to work together for my benefit. A calm, reasonable and charismatic man; but also one who – in a stark moment I will never forget – expressed a morbid despair at the limits of the care he was able to provide.

To paraphrase comedian and practising GP Phil Hammond: the best thing the government can do is get out of the NHS. Dr Hammond has turned his hands to many things over the years, including a joint investigation into the disturbing treatment of NHS whistleblowers. Private Eye has, passim, reflected on the disastrously wasteful National Programme for IT – the biggest civilian IT of its kind anywhere in the world, and one reported to have squandered in excess of £12 billion or (as Mail Online noted) ‘…the salaries of more 60,000 nurses for a decade.’

I won’t calculate how many prescriptions that amount would cover. One wonders what Nye Bevan would make of the NHS today, especially since his party, of which I’m a lifelong supporter, has steered it into so many walls.  One expects a Conservative government to screw with the NHS, but its legacy as a force for the greater good is a jewel in Labour’s crown. Tony Blair’s grasp on the NHS suffered a snowballing degeneration, much like his sanity; and after Gordon’s reign of inanity the duty of care and restoration resides with David Cameron.

Or more specifically Jeremy Hunt. A Health Secretary who wanted to exclude celebrations of the NHS from Danny Boyle’s Olympic opening ceremony, has confidence in homeopathy, takes conspicuously ideological positions on abortion and privatisation and was – in the greatest Freudian slip in British broadcasting history – rightly identified as a cunt.

The NHS is in crisis. Depressingly, I cannot remember a time when it wasn’t in crisis. However I can also recall the many acts of dedication and professionalism and kindness that have shined through when it mattered the most. The rapid response of paramedics last week when I suffered one of my worst seizures. The home visits and mobility improvements my grandmother enjoyed. The extraordinary palliative care my aunt received last year as she was consumed by cancerous tumours.

There are practical benefits to the RCN’s considerations. For my part, however, I cannot escape the feeling that such a notion will afflict those the vision of a National Health Service best serves. Those of the most limited means, the poor, the disadvantaged, the disregarded. Those with mental health concerns can require a greater percentage of visits to the GP often long before any diagnosis is forthcoming.

Thankfully a follow up on the Mirror website reported the overwhelming rejection of the proposed motion. The cynic rises in me yet again. What comes next?

Rightfully, Bevan deserves the last word:

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Black Eyes

Here I am treading carefully. Trying not to stroke that much-thumbed fetich (paranoid psychosis) in the context of what I’m typing about; although I do have an almost preternatural focus on any tenuous form of synchronicity, so I guess this effort has already faltered.

Let me start again.

As a child of the 1990s, many of my formative years took on a paranormal hue. The X-Files had captured the popular imagination, and pre-millennial tension encouraged a resurgence in “New Age” philosophies and practices. Many people, frequently well-meaning and credulous, took such things to heart; and fostered enduring fascinations within their sons.

Their son recently encountered the ‘Black-Eyed Children.’ Not literally of course, because this rather delicious urban legend is tenuously weighted in reality. Often what repels or intimidates us births our keenest curiosity; and so it is with me and home invasion tales. Alien abduction was my greatest fear as a child; the certainty that I would be teleported from my room the second the lights went out.

Mysterious children, sometimes teens, arriving at your door and attempting to gain entry to your home. “Just let us in. This won’t take long” is a classic gambit, delivered in a hypnotic monotone. The intentions or actions of BECs remain unclear, should they ever cross your threshold. Similarly the rationale of two teenage girls, stabbing a third to appease the entirely fictional Slenderman, is desperately unfathomable.

Fox News took statements from locals regarding the normality and seeming balance of the attackers and their families. With little explanation or justification or causal links, we are again bereft; stranded with the knowledge that sometimes there are no reasons. Or that reasons defy anything rational, anything quantifiable. True horror comes out of sight, and I feel enormous sorrow for all of these children; victim and perpetrators.

Anthony Cotton, attorney for one of the attackers, remarked: “She’s 12 and she has mental health issues,” […] “There’s no questions that she needs to go to the hospital.” Those of a more Icarus bent might frown at the apparent self-evidence of this point. Clearly intervention is necessary, but such tragedies have occurred before and will unfortunately occur again, and it is foolish (dangerous even) to attempt to tie things off like this. No neat bows will get this done, though naturally Mr Cotton’s evocation was far more strategic.

I’ve been distracted I’ll admit, but the backlash against sites like Something Awful and Creepypasta has been relatively muted. And to their credit, Creepypasta posted this heartfelt, sympathetic and dignified statement on June 3rd which I urge anyone concerned about freedom of speech, net neutrality, self-expression or basic goddamn humanity to read:

Statement on the Wisconsin Stabbing.

 

Rolls like water…

We returned home around 1pm yesterday. Would have been at least an hour and a half earlier if the baggage handlers at Gatwick could distinguish arse from elbow. You know when you’re back in England: temperature drops, skies turn grey and suddenly you’re drowning in phone shops and coffee concessions.

The long journey on the district line wasn’t as bad as I feared. I hate sitting still for too long, which is strange because I have no trouble with long plane flights. Sometimes the destination justifies the weight of the way travelled. We were so tired by that point as to be effectively anaesthetised. I even got to play some ‘wise owl’ thing – discussing hair dye with some bright eyed teen proto-goth.

And so here I am now. Funny how a brief change of pace can give someone a fresh perspective. Those nights on the balcony; warm breeze, rolling seas, typing by starlight. I want that. More of that. I work in a business where every third person you talk to has aspirations to be A Writer. Hell, put enough of us in a room, throw a bucket of water and you’ll drown dozens of ’em. But I’m not talking about The Novel. I’ve tried fiction and I don’t have the size for it. No focus; a struggle to draw something from the bottom up.

I’m also quite the egomaniac. I love the sound of my own voice or the, er, sound of my own words. Maybe I can type and do something with it too. Another thing I did while sitting on that balcony was look at Journalism MA courses. I have a degree, so getting onto a course is largely a matter of money. What seals the deal is whether or not another degree would actually do any good.

I’m young, but crossing the threshold. If I want to make changes, this is the time to put it in motion. When I was studying film, the best people on my course were the mature students. The most naturally capable was in his 40s, and he put every other one of us to shame. It’s early, but I’ve already been thinking about things Liam could be asking me in the future. One of them is going to be about university. My advice? Leave it a few years. Finish school then get a job. Or travel. Or both. Figure out what you want to do, what feels right; rather than the vague notions and delusions your uncle had.

I was 19. Making life decisions barely 18 month after getting out of a psychiatric hospital. I had no clue what to do, so I went with the path of least resistance. And it feels like I’ve been doing that ever since.

 

Whether I stick with it or not, I need to get out of this place. Out of B&D, probably out of London. Too many old ghosts, and sometimes I just feel like all motivations and concerns are out of whack. I was 19 and now I’m thinking back on that and, more importantly, the kids I knew when I was 17. Tacitly, Icarus implies that we are A People. United by mad gifts. I want to write and I want to do something. Certainly for those who are written off, hurting, abused, left feeling like a voice and a life are more than they’re worth.

There’s one week left to go on Meat Free May. Do something amazing today – donate just a little to the important work of Friends of the Earth.

 

Tobago – Signal

And so to you, my last night on the island of Tobago. My apologies for any typos you may encounter herein – been drinking the local brew, Carib, solidly for the last few hours. I also spent 230 TTD on a single shot of Johnnie Walker Blue. I am very proud of myself.

The ocean’s a little rough this side of the Atlantic tonight. Got a lot of crashing waves, rolling beneath an astonishingly beautiful array of stars. I want to call this view ‘heartbreaking’, because its beauty touches you in places there may not even be names for. ‘Heartbreaking’ isn’t appropriate at all however, because this view is one of those things which reminds you how wonderful this world can be.

That’s a bold load of letters for someone like me to hammer out. Or so I’m told. Or so I tell myself. I think I’m supposed to be some kind of cynical old fuck, but I don’t think my heart’s in it anymore. I’m a romantic at heart, always have been, but you slap enough damage onto something and it hardens. Deadens even, in the right/wrong places.

“Bipolar” is the term on all the medical documents. “Psychotic” is the ‘reclaimed term’ I’ve been using for a while. Now I’m leaning towards “Polarist”, but even that’s wrong. “Person” comes closest I imagine, but any term is riddled with inadequacies.

I refer to it as a ‘signal.’ Its always there in the background; my own private CMB. Its like a conversation you can’t quite listen to, a station you can’t pull from all the static. I love the term “Hall of Mirrors” – its one of my cyphers, riding high alongside Cause. HoM fits here, because anything I read in the sound of the waves or the whispers in these palm trees or the searing beauty of my stars is ultimately born from within me. Within you.

Reflected light is all we are.  Imprinting wants and desires, ideas and definitions and self-assigned certainties onto anything and anyone around us. Maybe it is all about me. From your perspective: you. Seeking something warm, something beautiful or good is ultimately a pursuit of what is better within us all. If we can find something to believe in, something which inspires or gives us reason to hope; then every one of us comes within reach of infinity.

 

Lithium Flower

Choice is your weapon. Belief is your weapon. No one can hurt you if you remember that you have been through the worst and you were not broken…

 

Ultimately we are fortunate enough to live in a godless universe, which harbours neither a particular care nor a omnipresent contempt for us. Probability is the highest resolution.

My radio silence has come from an unlikely chain of events which have led me to have what appears to be a career. At the very least, I’ve wound up in a situation where people are counting on me, and its taken up most of my runtime. As the months have rolled on, its all coming together into something I’m a little unnerved by.

Life.

I’ve never been the “I told you so” sort, but sometimes you hope and pray the patterns you’re seeing won’t come together. And then they do. I still believe in Icarus, but tested in the real world, the London Project has stalled. I won’t say its died, but what has kept it vital and alive has faltered. I have my own thoughts on the how and why, but I’m a little shy about sharing them, even here, in a blog I’ve always demanded be open and honest. My reasons come from my respect for others, because Icarus brings people together, and I cannot – will not – speak for us all.

One thing I have come to realise in the past 6 months is that I can no longer compartmentalise my life. Activist, employee, friend, son, brother, uncle, lover, hater, bipolar, epileptic, mutant, augmented, bisexual – epithets are necessary and inevitable; but I realise that the extent to which I try and live up to them is too much. When they slap a mental health label on you, it grants you a potent standard you can march under. But I’ve taken it for granted my whole life. Cast it as my defining characteristic, the stellar matter around which everything else must coalesce.

Broadly speaking, this is correct. But rather than allow a single aspect of my experience to become my fulcrum point, I should be trying to give expression to everything I am. For too long I’ve held off making choices or taking risks because of the perceived costs and potential, negative consequences. However I have been unable to avoid pain and misery even through such an approach, so why should I cut off any potential, positive ones too?

Risk always carries value. Sometimes you’ll wonder if the cost you’ve paid is too high, but at least you have learned something. What I have come to learn is that I can’t predict the future. The patterns I see are not always on the money, and when they are, they do not represent the whole equation. I have an input, I can make a contribution which affects the outcome. To be afraid is not a bad thing. Believing that you cannot do anything but be afraid is.

 

Visions come to prepared spirits…

 

I’m not 100% sure what this all means or where it leaves me. I have to make decisions and face consequences I think. Throw myself in rather than dip a toe. I have to think of myself as a person rather than a platform for an idea or disorder or abstract. The simple fact is that there is always hope, always truth and revelation and never any decent reason to remain on the sidelines.

 

Confess

This recent radio silence has come from work commitments. As in I actually had some – a state of affairs which is surprising to me and has been to psychiatrists and social workers over the years. Despite scarred arms and a history of highly…impractical behaviour, I’ve been put in charge of a branch of my company. Over christmas too, which was intimidating but somehow we managed not to implode.

Things are going well, and my employers are happy with the way things are. Personally though, I am concerned. I’m not looking after myself. Because of recent seizures I’ve upped my lamictal, off my own back. Though I’m not powerfully stressed, I have adopted some discouraging behaviours. There’s this new ritual of buying a can of beer from one off licence on my way home, then buying another at the next I come to. Its a nice way to wind down obviously, but given the lithium eating into my organs, I know this is the kind of thing which could really come back and bite me in the arse. Certain stratas within me do not care.

I have a care plan with my GP, following my discharge from the psych service. Hinging on blood tests, with minimal contact. Quotes from the document:

  • Potential for weight gain with Lithium. Potential for Lithium toxicity and renal dysfunction in the long term.

I refer you to previous remarks – booze, off licences.

  • Relapse indicators – Over activity leading to manic behaviour, paranoid ideas which could get worse.

This one is my weighty concern. I lied a lot in those final consultations. Or omitted things, which is a more accurate way of putting it. I failed to mention that those ‘paranoid ideas’ are becoming more prevalent.

I hold out- loud conversations with myself. Sometimes ranting, sometimes debating what’s happening and what we’re feeling. There’s that term which sometimes get thrown around: “invasive thoughts.” There’s an increasing sense of invasion.

  • On mental state examination, he presented with no abnormalities of his mental state and had good insight into his condition.

First part no. Second part hope so.

There’s long been this enduring sense of ending myself. Hurting myself in slightly less terminal ways too. For me the scariest part of all this is that its not depression or misery or desperation like it used to be. Its (un)logic; an almost perfect storm of hyper-focus and critiques on the state of the world and my experiences as a human being. I can’t resolve disconnects between the fallibility of love and the fact I can live with what I know. I feel I shouldn’t be able to live with the memories of the friends and family I’ve lost, that I can handle knowing what happens to someone consumed by addiction or anorexia or psychosis or violence or abuse.

There’s a vein of survivors guilt too. The notion that better people than I are no longer here. People possessed of grace and beauty and intellect, who simply made things better for those in the lives they embraced. And here I am, this hypomanic, slow-burning cold flame of insanity. Doing impressions of a functional human being.

I’m debating whether or not I should return to the psychiatrist. This rebels against my more Icarus beliefs, but the simple fact is that there is no Xavier School for Gifted Mutants/Lunatics. For better or worse I could make Dr Sri listen, and he was willing to at least approach the matter practically, even if we didn’t always agree on the nature of what was happening. Its a state of affairs which even Sascha DuBrul has had to touch on. Sometimes lithium works. Sometimes you’re limited in where you can turn.

 

None jumping sharks…

In June 2012 I was fortunate enough to attend a talk Henry Winkler gave at a school in North London. I was there to sell signed copies of his Hank Zipzer books. ‘The World’s Greatest Underachiever’ – Zipzer is a young dyslexic growing up on the Upper West Side, who’s experiences mirror those of Winkler’s youth.

It was a relief, discovering what a fabulously nice guy he is. The average age of his audience was 9 years old, but he deftly managed to work some self-deprecating Fonzie gags in there for the elders. His warmth and enthusiasm was infectious and he deserves every accolade for the work he is doing.

There was one repeated phrase which lodged in my mind: ‘learning challenges.’ Cynicism calls P.C. bullshit – ‘learning disabilities’ remains the stable phrase for those facing dyslexia or similar conditions. Was Winkler simply smoothing the edges of his rhetoric or, as I personally suspect, attempting to subtly undermine any associated stigma?

My reasoning may be spurious, but are there parallels between his approach to dyslexia and any radical appreciation of mental health? Here’s a quote from an interview Winkler gave to justonemorebook.com:

First of all, if you are dyslexic or if you have a learning challenge, kids know. They know that it’s hard for them. They know that they’re not up to snuff. They know that they’re not doing as well as 75% of the class. So then to compound it by labeling them, by putting them down, by yelling at them, by grounding them because, you know, they’re not reading fast enough, it warps their ability to grow into a healthy self-image.

It has to be acknowledged that, like epilepsy and unlike bipolar disorder, there is support for a neurobiological theory of dyslexia. Regardless, Winkler’s quote – emphasising stigma, productivity, labels and self-image; puts me in mind of attitudes towards the mentally ill. The levels and quality of support and acceptance are critical in determining the outcome of such a challenge; more so than any point of origin.
Is it naive to hope for a day when a kind, funny guy in a tweed jacket is invited to address a hall of school kids and tell them about his ‘mental challenges?’ Hopefully this gentleman would use a better phrase than that. Maybe he’d be sharing the adventures of a young person finding their feet and making their way whilst hearing voices and constantly shifting moods.
*********
On Monday The Guardian carried an exclusive interview Hadley Freeman conducted with Michael J. Fox. Like Winkler, Fox will ultimately be remembered for the green shoots of his early roles – those enduring, iconic characters whom neither the march of time, nor recurrent internet memes will ever unmake.
Another parallel is their later callings as representatives and campaigners for respective challenges. Winkler only received a diagnosis for his dyslexia later in life, around the time his step-son was in the third grade. Fox received a diagnosis of Parkinson’s disease back in 1991, arguably at the height of his fame.
I’m conscious of the minefield I could meander into here. I’m tying three separate conditions together; and I must emphasise that I am not calling them equal or necessarily equivalent. If I’m making a point its that adversity too often leads to surrender, and that the opinion and attitudes of others seems to be, more often than not, what holds us back.
Listening to him talk, you get the impression Mr Winkler remains amazed that he has achieved anything at all. Aged 30, Fox was told it’d be a miracle if he could continue working by the time he was 40 (his new series premiered in September. Michael J. Fox is 52.)
From Fox:
I take the medication for myself so I can transact, not for anyone else. But I am aware it is empowering for people to see what I do and, for the most part, people in the Parkinson’s community are just really happy that Parkinson’s is getting mentioned, and in a pitying way…
He considers pity to be ‘…just another form of abuse.’ Though I struggle to put it into words, I think I get what he means. Pity is intrusive, a value judgement has been made and you’re devalued by stealth. Written off and with your agency reduced, based upon a snapshot. His comments on medication have a resonance too, in that he has made the judgement on whether to follow a regime; which is quite a bold move for someone with a bona fide medical condition (one which, interestingly, Fox describes as ‘a gift…that keeps on taking.’)
Exemplars and role models are essential in all walks of life. As an epileptic I was pleased to discover the existence of a ‘Parkinson’s community’, though I guess “we” can’t get our shit together in quite the same way. In researching this piece one curious thought cropped up – who amongst the bipolar could be considered the equals to Fox and Winkler? There’s going to be a hell of a lot to choose from it seems, and for a Brit the obvious choice is Stephen Fry.
Fry has done a great deal in terms of advocacy and myth-smashing; and his candour, compassion and talent have long been a boon. However the bipolar appear to have a larger pool of famous faces and affluent names to draw representatives  from compared to dyslexia and Parkinson’s. The spectre of ‘manic depression propaganda’ looms large – is this because bipolar disorder walks hand in hand with creativity? Or is it because the diagnostic criteria is so unreliable.
I find it difficult to believe that Stephen Fry or Vivian Leigh wouldn’t have been as talented if they hadn’t been bipolar.  A diagnosis has many applications – it excuses Mel Gibson’s potent homophobia and antisemitism, while taking credit for Elgar’s Enigma Variations.  But as Ophelia’s Mirror reminds us, a label like bipolar tells us very little about a person. And Darian Leader notes that; ‘Emphasising the manic-depressive’s public creativity is, of course, also insensitive and stigmatizing to those who do not write or sculpt or paint or conquer to world-wide recognition.’
Perhaps what the bipolar need are fewer celebrity representatives. Stories of living day to day with the disposition, however one might choose to define it, will do far more to reduce stigma and challenge attitudes than the endless celeb confessionals; which reinforce stereotypes. Misunderstood genius or impressive train wreck. Everyone clamouring in and claiming ‘I’ve got that too!’, while Marty McFly and Hank Zipzer focus on ‘look what I can do.’