The Politics of Sleeping Pt 2 : This Time It's Personal

 

 

(Finally getting a chance to update the promised blogs from Kiltr, this was originally published 5 months ago as the follow up to 'The Politics of Sleeping Pt1')

In writing Part One of this blog I had a whole slew of quantitative data to draw upon, the facts and figures speak for themselves, yet in approaching the qualitative, the anecdotal, many people with epilepsy find it difficult to do just that. So, what of the personal, the lived experience of people with epilepsy living in a Scotland struggling to meet the demands of their conditions in so many ways?

What of the lived experience of people with epilepsy living in Scotland's communities while an NHS meets only half of the national guidelines for minimum requirements of specialist epilepsy nurse provision and with little more than ten neurologists with an epilepsy speciality to treat 54,000 people with epilepsy across the country? What of their fates whilst charities desperately struggle to provide a safety net of support for the growing numbers falling through the cracks in the NHS and must make stark budgetary choices between whether to provide more vital services and support or whether to raise awareness both of a conditon, which the public at large is woefully short of accurate information on, and of the growing crisis in providing services and support for people with the condition?

Echoes of these questions reverberate around the compounding and peculiar 'catch 22' situations people living in Scotland with epilepsy increasingly find themselves in. Situations where the most well known major charity, Epilepsy Scotland, provides a helpline, a vital lifeline for many, but can only afford to staff it with trained epilepsy counsellors from 9-5 on weekdays, as if epilepsy and its myriad effects could keep office hours! Most other helplines, like the Samaritans, can't give appropriate advice, guidance or counselling because their telephone staff do not, as a matter of course, have epilepsy training and must tell callers with epilepsy this if they attempt to use their services

 


Likewise, despite the well documented high clinical likelihood of mental health issues for people with epilepsy, due both to the nature of the condition itself and the veracity and side effects of medications used in its treatment, psychologists, therapists and counsellors cannot and should not professionally consult or treat a person with epilepsy having not had similar specialist epilepsy training, and there is a paucity of those with that training across Scotland with precious few of those in the NHS. In a further compounding of the issue, the NHS' apparently chosen panacea for all things mental related, Cognitive Behavioural Therapy, is particularly ineffective in helping with mental health issues deriving from or related to epilepsy, since they most commonly have a neurological genesis not a strictly mental or emotional one. What might be effective would be the ministrations of a neuropsychologist but they are in such short supply in the NHS their consultations are almost exclusively reserved for those preparing themselves for neurosurgery.

At almost every turn the issues facing people with epilepsy are compounded by a paucity of provision and support, a distinct lack of social and cultural awareness and an apparent political disinterest or lip service masquerading as interest whilst little changes. This makes it increasingly less likely those affected will find means of representation never mind a voice to speak up for themselves regardless of the increasingly compromised positions they find themselves in with regards to health, social and cultural relations or interactions and the political will to change them.

The dearth of mental health options in terms of support for people with epilepsy is particularly telling for those with Frontal Lobe Epilepsy. The brain's frontal lobe has long been known as the 'seat of personality' and as where emotions are generated and experienced. Recent neurological research is serving only to underline this with the frontoparietal cortex being found of particular significance in forming the 'personality matrix'.

http://www.medicaldaily.com/brain-personality-frontoparietal-network-who-you-are-382142

As you can imagine, any type of seizure affecting this area of the brain is likely to prove mentally disconcerting as well as neurologically so; persistent seizures or seizures spreading from it to assail the entire brain in secondary generalisation can feel like an attack on the personality and a dismantling or undoing of the emotions (in fact some frontal lobe seizures are neurological emotive seeming displays, like uncontrollable crying or laughter). For those with poor seizure control or who are resistant to AEDs (around 30% of those with the condition), there is little or no let up from these attacks so that it can seem like a constantly raging war which requires a strategy they have little time in between to formulate.

 


As you also might imagine, with all of this considered, there should be at least an equal slew of qualitative, anecdotal, information regarding the lived experience of people with epilepsy in the communities of Scotland, to support the quantitative data so readily available, if only someone had taken the time to listen and record it. They haven't; 54,000 Scots' stories go largely untold, their voices unheard and unlikely to be. Whilst my study, 'A Political Ethnography of Frontal Lobe Epilepsy in Scotland', aims to make some difference to that it, of necessity, focuses on 1084 people with Frontal Lobe Epilepsy, who are among the most disenfranchised of the 54,000, it also, as my such study should, attempts to preserve the dignity, privacy and pride of its subjects, even its attempts to derive a definitive picture of their situations. Whilst they are words, given the context of the conditon's telling impact on my own life, I feel are all too often diminished by overuse, the research must truly be conducted in a 'safe space'. As I said in my closing remarks to that epilepsy conference late last year, society shouldn't need to see us wholly exposed and vulnerable or at our very worst to understand how disabling the condition can be.

This is the predicament I all too often find myself in, as a person with epilepsy, a person with a disability, but also an advocate for others in similar positions; sometimes I need to be exposed further in order to engender greater understanding but that exposure is almost always detrimental to my condition. Very few people understand fully the requirements of a safe space for people with epilepsy.

This has been the predicament I have found myself in as I approached writing Part Two of this blog; Part One, despite the overwhelmingly positive feedback, left me feeling far more exposed and vulnerable than I expected it to. It was written as the clusters of my 'cycle' were tightening and the concomitant anxiety of exposure inevitably affected those somewhere along the way too. It's not been a good week or two and writing hasn't come easy amidst the intensifying seizure pattern and cognition issues. And what would have been the point of writing the first part without capitalising on what focus it got to build on for the second? Thoughts which have compounded those interictal anxieties further, so here I find myself, knowing all the while the writing is never going to meet even the lowest of my expectations, so please forgive me if this piece requires a few more edits than its predecessor

Despite blogging about my experiences, I guess derived from both my creative/literary as well as my political and community activist bents, having been suggested by support workers, epileptologists, family and friends, countless times in the five years or so since my diagnosis, despite realising the catharsis it may carry, I have never found a format with which I'd be comfortable committing to an ongoing dialogue around my condition within, however they may gain wider audiences or raise greater awareness. I've had no desire to post the videos we've had to take of my range of seizures for neurologists in order to satisfy the voracious appetites of a few internet ghouls or to lay myself open to ubiquitous and inevitable trolling. No, neither of those consequences lend themselves to maintaining a high GABA threshold and the process would prove counterintuitive at best. Thankfully Kiltr works differently to social media outlets, being a new media platform and I have found it as safe a space as the Internet can provide, and with which I am comfortable with, for any personal aspects it may become necessary to blog about my condition. (As I've said before but warrants reiteration, 'mon the Kiltr!)

There are countless examples I could cite from personal experience over the past five years or so which would more than adequately highlight the everyday pressures on and issues facing a person with epilepsy and the particular social and political context of those for someone with high seizure frequency, intractable Frontal Lobe Epilepsy. I could emphasise the gradual wearing away of general social relationships, faced by many people facing a diagnosis with a long term, or even terminal, condition or disability; how people appear to start to feel awkward, in both physical and virtual space, in asking simple, personal questions, like 'How are you doing?', because they know how loaded it feels and how unlikely it is that things have changed since last they may have asked, and often begin to avoid contact because of the awkwardness it makes them feel or places on the social situation and them as actors in it. (This was something agreed upon as commonplace and shared unanimously by all members of a support group I was referred to shortly after full diagnosis called 'Living With Long Term Conditions and Illness", regardless of their condition or illness. I was told the group was unlikely to be of further use to me after it entered the practical exercise phase. I had started to fall asleep during the start of a mindfulness exercise, triggering a cluster of seizures. The group was CBT based but I had been referred nonetheless. The group's coordinator admitted it was likely done because there were no other referral services available locally for people with my condition.)

Or I could give equally plentiful examples underlining the general lack of public understanding around what epilepsy is, leading to clearly illustrated casual prejudice on a daily, sometimes almost moment to moment, basis. [This becomes of a more poignant and deeper held, recurring emotional impact as well as impacting on perceptions of support networks if it comes from family or friends. An easy example to give might be the extended family member, who I no longer speak to, who took it upon themselves, after I had just returned home from a particularly disturbing and debilitating stay in a Fife hospital (where they discharged me, after two days of continuous seizures, into my girlfriend Kerry's care, actually stating, 'Your epilepsy is too complex for us to deal with here. It will be at least two weeks until they have a bed at the Western General, can we call you a taxi, we don't have any ambulances available?'), therefore being unable to attend a family function, to say to Kerry, 'There's something suspect about it all as far as I'm concerned. He forgets, I'm a diabetic, I've had a fit!'.]

But I did anticipate this blog would be shorter than its predecessor and I know, as well intentioned as you may be Kiltr readers, your patience is likely wearing thin with all the epilepsy stuff, I don't blame you, I think those thoughts more times in a day than I think I'd care to share! Whilst I have had my diagnosis for those few years, all the MRI, EEG and videotelemetry evidence seems to point to at least one aspect of the condition having been underlying since very early childhood, likely as the result of head trauma suffered as a baby. It's highly likely the only reason my seizure count could cluster so high without any kind of more recent event in the active areas is I've been having seizures all along. There are other complicating genetic indicators, which also only make it more likely to have been the case, making the seizure pattern actually two different types of Frontal Lobe Epilepsy. My family history can account for any lower frequency seizure patterns during sleep which may not have been noticed and I have had intermittent 'attacks' which the simplistic approaches to epilepsy of 70/80s Scotlland's NHS were unable to define but which my neurologist is now certain were earlier seizure clusters. My current seizure pattern didn't establish itself until a round 5/6 years ago. I'm also reliably informed by the excellent staff at the Western General, neurologists and epileptologists alike, that very few of these occurrences uncommon for people with Frontal Lobe Epilepsy, just to varying degrees of occurrence and or seizure cluster/frequency.

So much so personal, right? And I've spoken about how the general social and cultural context,as well as more specifics of actual medical provision, but I'd like, in drawing things to a close, if you can bear with me just a little longer, to use a few other common or garden, everyday examples to show how some of those social and cultural aspects may be clearly, if further evidence from the study bears it out, systemic and oppressive and in breech of aspects of people with epilepsy's basic human rights. I'm trusting a little that if not all of the information in both parts of this blog, then certainly in the academic material a few keyword searches from it would generate, that a clear understanding of the nature of epilepsy when it becomes a disabling condition might emerge and, given a brief similar keyword search on how human rights provisions apply to people with disabilities, will be the context that sentence is taken in, for it isn't written lightly. I realise though, as always when the personal becomes political, rights are all about perspective, so I'd like to just tell you three (very) short, as simple as I can relate, stories, my truths as I experienced them, around the themes of safety in the community, those who should ensure it, travel and briefly touching on work (Stop yawning at the back!) They all just also happen to touch, to varying degrees, on the subject of disability hate crime. They also, in my opinion, belie not only a general casual prejudice based on ignorance but also appear to indicate mire systemic failings. See what you think



So the 19 bus has a slight legend around some parts of Fife. Seriously, I know of at least two recent local indie bands who've written odes to its virtues. The super 19 runs from Rosyth Dockyard, lapping at the banks of the Forth with its irradiated hulks, in West Fife to Ballingry, built on the black stane, in Mid, and many a town and village between, the full journey's length taking over a hour. It was the first bus I had to take with my shiny new pass. Another joy of the electrical storms in your head, no driving unless you've been at least a year seizure free. But you get a free bus pass; mine lets me take a companion, because some times I'm likely to need one.

I'd taken the super 19 a few times alone. It was the only bus I could get to where the wee social enterprise I founded has its offices and it stopped right outside. I felt relatively safe on the journey but I was at a point where I hadn't fully accepted that I had a disability. On this particular day though, needing to be at work for an important meeting but knowing I wasn't at my best, the clusters from the night before still spilling over, I twitched my wallet from my hand trying to put my pass back inside and almost kicked a pregnant woman as my leg jerked myoclonically when I tried to pick it up. I decided for the first time ever to sit on the front priority seats, feeling a little self conscious as older people got on and eyed me suspiciously. I hoped, for the first time I hoped a stranger saw me as I knew complex partials must be following the simple ones I was aware of, instead of the usual when I came to a little confused or having lost time, checking, hoping none had noticed. And then he stoated into view.

I hadn't been aware the bus had stopped. Smells can be overpowering for me in that fractious, uncertain, post ictal phase and the smell of stale tobacco and alcohol had overpowering nausea adding to my bodily issues.

'Right you, shift!'

'Sorry?'

'Ah said shift, they seats are fur thi auld folk!'

'The sign says for elderly AND disabled. I've got epilepsy and need to sit here's because I've been having partial seizures, you want to sit here because your steamin and don't want to walk the length of the bus.'

'Disabled, my f****n erse! There's nuhin wrang wi ye! F*****n shift!'

By this time I had produced my disability bus pass, the epilepsy ID card I carry, which details my seizures and what to do if you see me having any and I don't respond, as well as shown the pendant I wear in case I'm found unconscious after a seizure or during. He was still persisting in trying to wrestle me to my feet. I had pulled away, having watched my hand jerk otutwards, but stiffly at my side, in a cluster of jerks.

'Don't you raise yer hands tae me!'. I hadn't realised the bus had stopped and the bus driver interjected as he came towards us from his cabin.

'Don't you be raising your hands to the auld boy you!'. I could feel my head nodding forward, always a bad sign, could see my arm and hand stiffening, the voices started to sound like treacle and I didn't know where they were coming from as I tried to speak. Sometimes, between times, a word or two sharp, then back to a morass of sounds and words, indeterminate voices.

'Ah..a..ahwizzzizizny!'

'What are you on son, that's nae seizure I've ever seen, 'mon aff...'

There were other words, other people but the next clear memory I was sitting in the rain at a bus stop, my good suit soaked through, my bag full of paperwork sat in a puddle at my feet. It was 25 minutes since I'd last checked the time, I'd missed the bus after the one I'd been on and my meeting. It was the first of many about matching a counsellor friend's business with some Skype based supplier I knew, throwing in some epilepsy training from a major charity and we hoped to take up the helpline slack. I rescheduled.

I don't go out or take the bus now unless I've done as thorough a risk management as I can. If it's cloudy with a slightest chance of seizures, I'm working from home. I'm lucky, I've been able to rearrange my life like that. So I don't take the super 19 unless I'll be safe and I don't have a pressing need to sit on the priority seats. Still, you can't prepare for every eventuality.

On the same journey to work someone else's predicament showed me the dearth of local public perception, casually and institutionally, around people with epilepsy. I must have had a brief absence seizure. I came to having lost a little time completely unexpectedly. There was barely time to assess it was of little concern when I realised the bus was stopped and there was some commotion a little further down the bus.

A young woman with epilepsy, and clearly with other complex needs, was in the throes of a cluster of seizures in non priority seat. She was looking increasingly likely to injur herself whilst one elderly lady tried to cushion her head from behind and another stroked her face, murmuring from the seat in front, as the the young woman twisted in her seat but looked conscious and utterly fearful for brief moments. I recognised the seizure pattern. A younger woman stood nearby, towards me, on her phone. The driver hovered further down the bus, a managing to look concerned for the woman having the seizures and for the other passengers waiting outside, either on their phones or smoking, or a combination of both. One other man stood between the driver and the group around the young woman, he was on his phone too.

The younger woman was concernedly reading from a creased sheet of a4 paper whilst she waited, on hold. I had to act, if to do nothing else to stop the old woman, well intentioned as she may be, to stop with the stroking and the murmuring. Make a person with epilepsy safe by giving them as much room as possible during a seizure whilst making sure their head is safe and their air passageways are clear. If the seizure is continuous with no conscious response for four minutes, call an ambulance. If they recover give them calm reassurance and let them know what has happened. It's not too complicated and there's not much to fear. Don't bloody stroke their face and murmur!

'What's happened, how long has she been in seizure?', I asked woman on hold.

'Six minutes, I've got to time them. I'm on the phone to the ambulance.'

'Right. Six minutes without conscious response? I'm asking because I've got Frontal Lobe Epilepsy with a similar seizure pattern, maybe not the same triggers, and I work in epilepsy advocacy; she's conscious in between her seizures, what's her name? Are you her carer? Do you mind if I speak to her?'

'Her name's Lynne. Aye, I just started work at the home where she stays, it's my first time taking her out, I can't believe it...oh, aye, she's having a tonic-clonic...what?'

'Tell them Lynne's having a cluster of complex partial seizures which might lead to a tonic clonic but we're doing what we can. See, she's back with us, can you hear me Lynne, see there's a smile, Lynne, your on the bus and you've been having a few seizures, your looking a wee bit flushed there, oh your away a wee bit again...I'm sorry, don't you even think about stroking her face, give the lassie some breathing space.'

'The ambulance is on its way, here, what's gaun oan wi her that it says on here?', the creased paper found its way into my hands. There wasn't much on it, a brief description of a simple partial, a complex partial and a tonic clonic seizure, less than the descriptions I gave in Part One, and a note to call an ambulance if any seizure lasts longer than four minutes, a technically true minimum requirement; then the kicker, a wee cryptic footnote, 'Lynne responds to hot and cold.'. It was that simple for Lynne. She'd been too cold outside and wrapped up warm. The same cosiness inside was enough to lower her seizure threshold and tip her into a cluster; her young carer wasn't aware of the consequences of the footnote.

'Listen, Carrie,...', I checked her badge, '...I think she just needs her anorak loosened a bit, maybe take her gloves off until the ambulance comes, I think you could have avoided having to phone it though. Maybe just watch how Lynne is with moving from inside to outside, hot to cold...'. Another loud, phone voice had started to cut across my attention.

'Finally! Where have ye been, I've been trying for ages, it's kindy an emergency! Aye, I'm oan the bus, we've hud tae stoap, there's wan eh theym haein a fit an the wee lassie she's wi disnae ken whit tae dae! Ahm no sure, hud oan...kin ah help ye mate?'

'I know you mean well but your no helpin. The wee lassie's got it sorted, Lynn's coming around, the ambulance is on its way.'

'Aye but look, has she though? She's still haein a fit, ma wife works wi theym, she'll ken better what tae dae...listen Maureen, aye, she's still fittin...'

'Listen mate,', I said through clenched teeth, 'I'm one of them and if your wife is a care assistant at one of the homes around here that deal with people with epilepsy in long term care and not a nurse with epilepsy training, I sincerely doubt it. Noo, here's the ambulance.'

"What d'ye mean yer wan I theym? How come she hud a fit but you didny? Are yeez no gauny hae a fit wi the ambulance lights?'. A much quieter, muted voice interrupted.

'Tam? Tam? Hing up the f******n fone!'

I helped Carrie with Lynne as she struggled to walk her down the bus aisle, conscious but confused and still working out the numbness' and tingles in her limbs. Lynne smiled a few more times but didn't manage to speak. Along the way I found out from Carrie she was only 17, in her first job, on less than minimum wage and on a zero hours contract. She had no epilepsy training; I later discovered through work contacts that despite the legal requirements on medical staff there is no requirement for Care Assistants in complex needs palliative care long term care, where any of the needs are epilepsy based, to have any specialised training.

As I watched the ambulance pull away I realised everyone else was back on board the bus, the driver called.

'You getting back on mate?'

'Nah, think I'm gauny need a minute or two, I'll catch the next wan!'


 


We've established, fairly conclusively by now, and for good reason, that I don't venture forth unless I am as sure of as little or no personal epilepsy related activity as I possibly can be, but I can't always be sure.

I was having a rare particularly good day and should have seen that as a sign in and of itself. When your least suspecting it, the condition really kicks your arse.

I'd taken the opportunity to visit a new cafe in my hometown after a business meeting for a spot of artisanal luncheon (I was being slightly facetious, it was a bacon roll, albeit on a granary bap, with Scottish Black Breakfast tea, the breakfast, lunch and dinner of champions, even with a little fakin bacon!). As I left sated, moving down the steep wynd, a sudden cluster of simple partials, jerking both my arm and leg, followed by the onset of at least one complex partial, stopped me in my tracks. The panic and fear gripped sudden and tight too, there were precious few places I could get to where there would be any measure of safety at all within the short time I was likely to have before things got worse.

Just as unexpected as the seizures had been was the soft voice at my side and the gentle hand at my elbow.

'You ok son?', a kind elderly female face peering up into mine with another fuzzy close behind it. 'No, I have epilepsy, I've had a wee warning and need to get safe fast; the only place I could get to, even halfway there, is the benches down at the cross...'

And then the treacle, my own mouth moving, I knew sometimes, but only snippets of what followed made their way into my consciousness, until it's fog and morass receded, almost as suddenly as the had come but leaving just a threat of return.

'It's awrite misseez, we ken um.' 'Are ye sure noo, will you be awrite son?'

Somewhere interictal I knew my mistake, knew I'd laid myself bare and more vulnerable than I'd thought I might be when the fear gripped. See, the benches at the cross are the oft times hangout of the town's congregated expellees from the local homeless hostel, which like many of its ilk allows access only overnight, who among them have no issues to seek with substance abuse and/or petty crime. That is no judgemental summary, I understand all too well the wider cycles which can bring these things to pass; it is just a summary of a social situation and those acting in it. There was still no judgement there when Kerry and I had clearly been marked out as a soft touch, after bringing the group soup and sandwiches as a regular fixture of our delivery runs from our cafe, our building was robbed two Christmas' before and two of their number convicted of the crime on evidence found in the hostel. There was a judgement coming from me, just for someone I expected more from.

'Git he's bag aff, ah hink there's a laptop or iPad or sumhink in it!' 'F**k's sake, sumbdy keep an eye oot!' 'No me, I canny get this f*****n wallet, he's legs are aw stiff!'

Like the people on the bus though, whilst there were other words there, other sounds, other movements, what they weren't aware of that I was becoming aware of; this was a cluster of complex seizures, passed and now done with me, not a single ongoing seizure.

Barely conscious, I propelled myself away from the bench, slapping at the wallet about to tip out from my back pocket as I did, with one functioning hand. I caught it and whipped around towards the bench, ready to deliver the full force of my anger and disgust. Like one hand and one leg, my mouth hadn't caught up with my intentions yet, 'GeyesaFAAAWWUUCK!', burst forth accompanied by immeasurable flying slaver, spit and drool.

Before I could move again, and I could barely move again, a hand fell on my shoulder.

'That's just about enough of that sir, can you come over here with me, away from your friends there? You seem to be having trouble walking and talking there, can you tell what you've taken today?'

Three attempts whilst I could see the group gathered around the other policeman, gesticulating and remonstrating loudly. Then broken words becoming clearer.

'I have epilepsy. I was having a seizure and they were trying to rob me.' 'They say they were trying to help you and they know you. Could you be mistaken? How could you know what was happening if you were having a seizure?'

'Because I was having a cluster of complex partial seizures and can be conscious between them. I didn't hear much but I know what I heard. Surely you could check that camera right there?'

'Hmm. Now the alleged crime is no longer in progress we'd have to request the footage, could take weeks for what's essentially your word against theirs and there's a few of them. Seems to me if this is the kind of fix your epilepsy is going to get you in, I suggest you should have stayed at home today. Perhaps that's where you should be headed now?'

I had no more words. I had nothing else, what the condition hadn't taken, the situation and all involved in it had summarily dispensed with. I went home. I didn't leave for over three weeks; it took me slightly longer to tell anyone about what had happened.

*******************************************************************

...in a slightly different situation, as a footnote to the foregoing, the full details of which are a little more difficult to disclose since some of them are still subject to internal investigation by the company we hire premises from, another tenant was guilty of misuse of communications in perpetrating disability hate crimes against my person, as well as in person, and using these as the basis for physical threats against, and extortion from, me as well as our company. It was some of the most language and behaviour it has ever been my misfortune to encounter in any context. Thankfully there was a plethora of damning evidence and a few reliable witnesses. Whilst the reaction from law enforcement was generally much more sympathetic , this was the framing of a question put to me when they came to call, late at night on the 23 Dec:

'Now given that we have two witness statements, as well as yours now, and the evidence from the phones and devices, we have more than enough to press charges under the Act. But if I go and lift him now, it will be a day or two after Christmas before he can see a judge. In the interim, and if it was to go to trial, if he's got all your contact details, his family, his mates, they can have all your contact details. I can see how this is affecting you physically right now.(it was late and I'd had a few simple partials while they were there, nothing majorally out of the ordinary, not that they asked.) Would you be, are you prepared for what that might mean?'

As long as there are questions being asked like that, for as long as there are people who can't understand and situations arise like those in these wee stories, my politics will always be personal and remain the politics of sleeping.




(Thank you for reading and for your patience if you made it this far! I hereby swear, for now at least, to give y'all a well deserved break from all the epilepsy business. But reserve the right to return to it at a later date, who else is going to?)