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STORIES -'The World's Forgotten Boy' 
-S.L.'s Story - PART 1

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'. 
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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