'The World's Forgotten Boy'
-S.L.'s Story
Intro
I’m 39, live in York UK and have had progressive MS since 1995. First symptom I noticed was a year before when I’d come in to volunteer at Peasholme Green, a homeless shelter on New Year’s day and just suddenly couldn’t focus or remember what I was doing. Literally it was scary - as I had to tell my boss Kendrick [bless him] that I didn’t know what the hell was going on all of a sudden. Kenny took a lot of persuading that I wasn’t high as a kite from last night’s New Year’s celebrations - which I wasn’t - though I had a big fat herbal waiting for me when I finished shift.
Then the second time I had a flare-up I was at work as well - this time at Phoenix House which was a residential home for adults with learning differences. Again I was making a list of provisions that the residents wanted and just couldn’t concentrate at all.
Also bless 'P' [client confidentiality respected here] as he was really kool and trying to be helpful. 'Shall I do list for you mucker?' [mucker/mucka in Yorki means friend]
I replied - yeah, have a go matey. And Paulo [not real name] valiantly picked up a pen and made a few squiggles on the paper...
Civilian Medics Suck
My first serious symptoms were just complete collapse following spending a fortnight volunteering on a special needs play project which involved pretending to be pirate, musketeer, dinosaur, monster, clown whatever… to try and keep kids with attention deficit syndrome entertained so that they didn’t run havoc in a way that hurt themselves or other kids.
After a fortnight of that I was understandably knackered and ready to sleep through the weekend before going back to work as a 'devi' [developmental care manager] at Phoenix House. Only I couldn’t get out of bed and my spine and legs felt like they where on fire. So I called in sick just thinking - 'oh I’ve pulled something', as a year before I’d knacked both my achilles tendons bringing a ghetto blaster back and forth so a project I was working on could have 'music therapy' i.e. kids with no verbal ability could at least mess around with my ghetto blaster [grin].
Anyway, yeah I went to the doctor’s and said 'my back is fckn killing me' and just got given co-proximl and co-codamol [paracetamol and codeine] which basically did bugger all. So went back and got told 'oh you’ve got spastic diplegia since birth'.
'WWWWWHHHHHAAAAATTTTTTTT?'
I knew that I was born premature at 2lb 7oz and spent ages in an incubator [where I had my first contact with spiritual experiences] but other than that no mobility problems at all ever.
And so began the battle between what dr x had put on my notes when I was 4 and reality basically. What I didn’t know at the time is that in the UK GPs hate being questioned. Now, my adoptive dad was a submarine medic and I have done a bit of medic stuff in my time, so I both knew what a pharmocopedia is and because I was NVQ 3 level qualified as a devi carer, could tell the difference between cerebral palsy [which they where telling me I must have] and whatever the hell was/is happening to me.
Here comes another sucky bit as because I was fairly fit for a 27 year old I’d never given the slightest thought to health insurance and UK higher disability benefit rates don’t get brought in until you’ve been unable to work for six months or maybe nine. So I was self-medicating with alcohol and amp [yeah I know, I know bloody dumb idea] and basically feeling like I was losing or had lost my mind.
My best mate Tim went to travel the Pyrenees and my gf Pascal moved back to Paris whilst Santin split for Egypt and I was stuck in a 3rd floor flat with stacks of text books that I'd acquired from nearby college.
[yikes, bad memories more later]
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Ok where was I? Oh yes in a third floor flat whose stairs were now dangerous and in a constant state of pain and confusion but I’d got an appt to see the neurologist and then my probs began - because he prescribed for me baclofen but the GP gave me the wrong dosage instructions and also didn’t tell me what a powerful drug it could potentially be.
New year ‘95 and I was having a ve mic duel with some rappers but good naturedly, whilst new year ‘96 I was alone and feverish as I’d wrecked my body with alcohol and uppers to gain relief but was in such a state that I didn’t know if I was awake dreaming or dreaming awake. I’d get the occasional visit from old friends but they couldn’t understand what was happening to me and neither could I.
The only condition that seemed to fit the symptom pattern was MS but I was equally terrified that it was that; or was it Alzheimer’s, or was it... You get the picture.
Even worse more friends where moving away from York and my isolation grew, but even through the chemical haze I had just enough suss left to check out what baclofen was in the pharmaocopedia in the library - and found I’d basically been given a completely wrong dosage rate. Ok you might be thinking that’s the problem solved - but oh no, it wasn’t, as trying to get the drs to change the rate was a matter of 3 visits and a shouted confrontation where eventually the bugger in question [name supplied] actually deigned to look in his reference copy and found out that he was wrong.
I had an mri... but they mri'd my spine not brain [this I only found out after reading my hospital medical records]. I’ve honestly got the feeling that drs are reluctant to diagnose MS [at least in York district] as MS is a costly condition to treat and can never be cured, just palliated; and for a certain generation of drs, disabled people are seen at best as guinea pigs and at worst as a drain on the NHS.
Aside from PJ Toomey and Andy Hall who fitted my medtronic implant [and intercatheteral pump which delivers morphine sulphate and correct dosage of baclofen into the base of my spine] my encounters with the neurologist and new GP were getting increasingly confrontational as each time I’d come in with a new symptom they’d try and dismiss it as 'birth related'..
By this time I’d found a site called 'Joolys Joint' on the internet and being able to read up and find that there were others in the same situation as me saved my life on repeated occasions especially my dawn chats with the mysterious 'ICE' [eh K?].
But it does seem strange to me as time went on and memory and balance got further and further impaired that the GP and the neurocow seemed to be working harder and harder to convince me that I’d always been disabled.
'But you fainted running when you where 10.'
'Huh?' I cast my mind back and then remembered, yeah it was a really hot day in ‘77 and me and a mate were running round and round the school sports track in a mistaken effort to impress Karten Milner and Jane Smith and like the mini-Yorks lads we were, we ran until we literally dropped.
I think there may be a generational element to this as the neuro is in her 60s and so is that weeble GP and as far as they’re concerned, they must be right at all costs.
I did find it particularly strange as in academia/care or wherever if you tell your c/o that you’ve got a new piece of data/read new report etc then, well they might be initially skeptical, but they’ll always give you a fair hearing; but a certain generation of drs [I wouldn’t call them medics] seem to believe that research papers stopped being written the day they graduated. I’m trying to think of another profession that has the same self perception of perfection but I can’t.
Here’s one last anecdote before I wrap up for the evening: One summers day I was walking through the city past the art gallery and its fountains and suddenly felt faint and too hot, then everything went black and I woke up strapped down in an ambulance where one of the parameds started babbling about how it’s a crime to attack a paramed.
I was like - 'what, hey get these straps off me lads'.
So they did and I came into A&E sweating and shaking, where I met the nastiest nurse ever.
'You’re drunk aren’t you?'
'No,' I replied honestly, 'I was going hyper thermal and blacked out.'
'Well you must’ve been drunk.'
'Why?'
'Because you were by the fountain.'
'So?'
'That’s where the drinkers go.'
It went back and forth like that with her including gems like, 'Well you’re on drugs because you’re wearing nail varnish'. And, 'I can tell you’re drunk; I’m a nurse'.
Oh dear!
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Social services - call that a service?
I only found out afterwards when I was hailed across the street by Ziggy [ex 3 para street musician] as, 'Alright dead man'. So obviously I went over to chat with him and he said that he and lifesaver gave me mouth to mouth for 20 mins as the parameds couldn’t find a pulse.
'No way bro.'
'Way bro,' he replied grinning.
'Bloody hell,' I said.
He laughed and told me that he’d nearly had a heart attack himself seeing me and I was like - 'no bloody way mate am I givin you cpr until you have a bloody shave'.
Then we bought a couple of bottles of red wine and had a drink and a sing-song down by the river gathering chi energy from the flow of the current and serenading passers by with our version of 'brown eyed girl' [hey we’re both of Celtic heritage as his ancestors are from County Clare which means his spiritual home is named after a girl, and mine are from County Mayo which means that my spiritual home is named after a condiment - grin].
But it does seem, speaking from empirical experience, that it’s the medical profession and the 'social service' that are the most clueless about MS. Don't want to get sharecare4u in any legal situ, but is it ok to use the phrase 'smeg headed incompetents' as an overall guide to the quality of York social 'service'? How they can describe themselves as a 'service' with a straight face completely baffles me and yes I’ve told them so.
Excerpts from a letter to my care manager
My MS has progressed, so I’m falling more and more even in the flat and the shower is a bloody deathtrap bro. It’s not that I don’t try to shower; it’s just that clinging onto the rail and trying to soap myself… yeah right. Weirdly enough the only time I actually feel properly clean is when my sibu bathes me because she’s physically strong enough to stop me falling.
In terms of the medical route, PJT at the pain clinic has reduced my level of baclofen, which has helped a hell of a lot intellectually as I’m no longer doped to the gills on muscle relaxant. But I’m getting an absurd amount of petite mals and my short term memory for where I’ve put objects is pitiful.
The thing is because my progressive MS has been allowed to progress I’m now at the stage where my sleep cycle is awry, appetite’s gone and I have probs peeing. That’s the thing that gets to me.
I’m still leading an active cyber-life as I’m currently writing about paganism for both the Pagan Federation and Mookychick website. I’m also involved deeply with the Disability Rights Commission as we’ve got this new thing called 'the disability agenda', which takes over from the 'do the duty campaign' or at least it will when we reach the implementation stage.
I’m in this absurd situ where I’ve got to buy my own meds [not just sativa buds of superior quality to synthetic cannabis as reports right across the board say that marinol and sativex are basically 'disappointing' and that’s putting it politely]. I’ve got to pay for necessities like multi-vits, ginseng, oolong tea, fresh ginger, ginko biloba and michiu.
Then there’s the hidden costs of being disabled as even if I shop at shelter and army and navy, a spilt tea can completely ruin a new top. As for plates, crockery, teapots, as stuff can literally drop from my hands I’ve got a consistent breakage rate of four objects a week.
Both my armchairs are basically rotten because of spills, my table is broken because of falls and as for state of the mattress, I’m not sure I want to go there, but if there’s a worse experience than waking up paralyzed and basically being unable to reach the kharsi before my bladder voids then I don t want to hear about it.
MS bladder, oh dear me – there’s either a pee signal and no pee, or all of a sudden there's a full bladder alert which gives me under 5 mins warning and then it’s pee like a race horse time. So my motivation to get out of bed as quickly as possible is pretty high. Oh, there is a worse experience than my bladder voiding - thought for years that MS was shitty, now realise that it wasn’t just a metaphor.
The thing is all the social manager’s suggestions would be easy peasy if I was still an abp [able bodied person] as I make 'to do lists' then pin them to the wall then take them down to add something else and then forget that I’d made them in the first place. Similarly the bill pile; I know I’ve got one somewhere but is it under the photo pile or the comic pile or the art pile or the cd pile or the newspaper pile or the half finished article pile or the files pile… or have I put my bills somewhere completely inexplicable?
I’ve got the theory that local govt regards disabled people as tv watching zombies whose only social value is that they promptly pay whatever over-inflated bill they are ordered to and then resume their zombie state sedated by satellite tv and the knowledge that they can’t be an active part of society.
I mean honestly bro, the day center place was like something out of 'Goffman’s asylum' and as for the 'disabled people’s forum', well, both myself and Glynns have kinda quit in disgust as:
a] meetings were arranged in rooms with fluorescent lights and poor access
b] HG manipulated/dictated the organisational structure every step of the way
c] minutes were taken that were censored
and the final straw was
d] where we were expected to attend a course upon the [yeah you’ve guessed it] 'the social model', which is no use to visually impaired people at all as even if we had this fantasy paradise where all access was equal, we’d still have probs seeing well, as I recognise people via their voices.
I think that also the 'care' system as defined by local govt is nothing more than psy-op's designed to get capable people to identify themselves with grinding poverty and alienation from society - in that if you get the power to define another’s 'wants and needs' you have power over their identity and if you are in the position of 'arguing their case' and feeling that 'their case is not arguable' – well…
How’s the wing chun training doing? It’s great how martial artists don’t seem to actually recognise the concept of 'disability' and go for the phrase 'handicapable'.
One of the weirdest things is that some people are nervous about talking to me, as I can hear that their breathing is different - there really is a different pattern if someone just finds interaction awkward. The strange thing is that I tend to get it from so-called trained professionals who seem to believe that if they say the 'wrong thing' to a disabled person, then… well, I don’t know what they think will happen. But surely with disability there is no correct singular discourse. My pet theory is the more self confident a person is, the more comfortable they feel talking to someone with an ICD [incurable crippling disease].
Could you send details of the 'personal assistance scheme' I’ve been asking C to get some from you but she’s scared to talk to you?
No, I’ve no bloody idea why either. I think it’s probably because you’re employed by social services who’ve got a rather unsavory reputation among the sector of the population that’s forced by financial circumstances to have to utilise govt resources.
I have explained repeatedly that you’re a decent bloke and that you’ve studied sociology and do martial arts and are into Taoism, but she’s met so many lousy care managers in the past and has indeed been removed from clients because of saying that they need more care hours.
I’m getting these temporal lobe seizures a lot so I completely blank and split out of time [or at least temporal perception].
It just seems like destiny manifest to distribute for no profit sativa to other MSer's and those in pain.
The little old lady in our block [bless her] keeps trying to make cannabis jokes and telling me that if the police come she won’t tell them anything. I told her they already knew as last time we chatted they politely ignored the bag of green on the table and were actually asking me if I’d ever considered joining the force.
I’ve been posting a lot on a site called share care for you, which is another piece of Goddess syncron as the Chinese symbol I wear around my neck is Share as that was the one selected for me by Ix Ling.
I was talking to a pagan mate frater and he was talking about how it is being not formally employed but busy as a bloody bee. I know what he means though he’s well into his craft as well and there’s always something more to make for somebody, especially when you get total strangers emailing you with questions about the craft. So I’ll do the lass a focus sigil to realise her goddess gift within.
Final words
I later got a reply from my care manager saying as things 'were going so well' I no longer needed him, which just completely proves that local govt doesn’t actually give a toss about disabled people. As if my situ [physically/financially] is going well. [I need more homecare hours basically] it just seemed the content of my letter was ignored.
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