5.6.18

the man with the shit sprayer kicks open the fan factory doors

not really sure where to start talking about any of this shit anymore. i think i half told you guys about what was going on with family last time. if not, a tl;dr is pretty much this: my blood family mostly lives in Wales where my ma moved out a couple of years ago to the country, along with my dad, his one-man business & its office/workshops, my bro, his girl K, & their 2 small kids G & Z. as some of you might remember, last time i tried to update anything the family had just had shitty news involving Z - she's two now so you can imagine any bad health news at that age will fuck them up - but we didn't know what exactly was the problem or what the prognosis would be.

that's progressed (kid has been through 1001 medical tests, seen a geneticist etc) & a couple months back they sat my bro & everyone down and explained Z has metachromatic leukodystrophy, which is incurable and genetic. it's a disorder where the brain can't produce myelin, which is what "insulates" neurons sort of - so the system can't protect those cells, and slowly but inexorably they degenerate. it's terminal, within two to five years in her case, but most of that time she will not really be there exactly - like a dementia patient, it seems like these kids lose all higher brain functions fairly rapidly, including shit like speech, language recognition, walking, eating/swallowing, use of hands, recognising familiar faces, up until there's nothing there and the patient is just vegetative. right now Z has none of those things except maybe recognising people, and continues to degenerate (it's been really rapid, this all took place since Christmas when she was crawling, talking, emotive etc etc), which you can prob imagine is fucking my family up pretty hard, which in turn screws with me pretty badly. everyone is grieving.

...fuck, that was also tl;dr. i apologise, this might be a textwall.

the double shitter is that this is a genetic disorder which my bro and K are definitely carriers of, meaning that there's a 1 in 4 chance that any other kid they may have will die too. i don't know if G has been screened but i worry bc the Wiki says sometimes it doesn't start showing symptoms until "between 3 and 10 years of age" (he's 4 now.) it's extremely likely that my sister and i are also carriers - as you can prob imagine this wasn't good news for my sis or my ma, in terms of future plans getting squashed, but didn't really affect me since there was about a (less than) 1% chance of anyone ever getting me smashed long enough to agree to procreate anyway. not good news for Paul however since he was sort of hoping to be that dude with enough alcohol to do it, has always wanted to be a dad, etc so it still took a toll.

in terms of Z's medical care, we're extremely lucky to live in a country that takes care of that stuff if you can't, plus there are charities and that involved, so her care will be funded as long as necessary no matter how expensive it gets including home equipment / hospital beds / home nurses / hospice care etc. this is good because my folks are as broke as i am. there's even been a gofundme to take her & G & parents to Disneyland in Paris, so it's not like she will be suffering for lack of medical attention or anything. it's purely emotional fallout. i know my bro is seeing a grief counsellor, so hopefully there's some mitigation there, but i wish they'd find some way to send people like my mum or my nan to someone too. they're not having fun with this.

in addition they're also moving house - after all the pain and work it took to move the family out there, this medical stuff plus some other problems they're having mean they've decided that they'll be selling up and moving to two smaller houses back where we came from, near Bristol. my ma has had to get rid of a lot of her pets cos of this, like her alpacas, her 2 little mini goats, most of her chickens and others, & strangely that's been getting to me too, i really liked seeing all those animals when we visited.

so yeah irl pretty much sucks right now. i hate even typing about it to be honest. Paul's still not 100% - i thought he was getting better for a good while & it really seemed like he was but over the last 2mths or so he sort of backslid until we were back at the multiple hospital trips sort of stage, & his last X ray pretty much showed the same problem as like back in November. right now the GP & etc are trying some meds, no way to know if they will have worked without another X ray but hopefully they will until we can see the actual gastroenterologist again. i would even be OK with him having to take these forever if it staved off the weird gut valve problem, or kept him not in pain. i'm hoping there's some kind of one off surgery or something if that's not possible, some corrective thing.

there's the standard cavalcade of shit apart from that (no different to anyone else's problems i don't think): bills suck, overdraft sucks, depressive disorder has shitty timing and gets exacerbated by all this which makes me even less functional which makes everything even worse, etc etc. ngl i have not been doing fucking anything except worrying and [actually i typed the and before i realised no i've just been worrying, that's pretty much it]. i realise this is not a productive use of time. the worst thing is you can realise that and even then still just sit there staring at a screen for weeks/months at a time.

possibly the only good thing i guess: people have been asking about drugs etc - i'm actually not anything like as cool underground rebel as some of you seem to think, sadly. i haven't touched anything not-prescribed for about twelve years (even that was just more of the same shit i was getting prescribed, plus some weed and what not, i am actually very boring), & right now the medics are like 75% of the way through taking me off one long-term painkiller and onto a better one? i think? it's one of those deals where they gradually reduce the dose of one while increasing the dose of the other.

the new one is called pregabalin (Lyrica, in the States) - i thought it was gonna be shit tbh but it's actually pretty good. it's also an anti-anxiety, and helps you sleep - sort of a wonder drug for anxious depressive insomniacs - which means i've been able to come off the beta blocker i was taking for anxiety and the melatonin i was trying to KO myself at night with. i'll be down to just pregabalin and a couple of antidepressants sooner or later. so health-wise i'm physically better than i was, & will prob remain so in future. a lot of my physical problems have been complicated by stuff like painkiller tolerance, where you get less and less sensitive to a drug's effects over the years, and the pain doc said this one doesn't have that problem so it should basically work forever. to be honest i'm really grateful they started me on it when they did, since the shit that is currently flying all over the fan factory in a fine, feculent mist would be even harder to deal with if not for its effects. maybe i should change the blog's catchphrase to "pregabalin fucks you up".

this is way too long already & i apologise again for the text wall but i did just want to say thankyou again, to everyone that's written to me via here or email or my Twitter. i'm really sorry if i screwed up people's deadlines or anything while you were waiting for me. it's been really hard to face communicating with anyone, irl or not, & i know that's been frustrating for people. D, thankyou especially; you've been kinder than i could have expected anyone to be. Paul is helping me try and get on top of all these mails now but i wanted to write something first so i'd be able to link people to a longer explanation of what's been going on. i'm still trying. i'm really sorry about all this continued fuckup.

L

11 comments:

cleft said...

none of this sounds particularly great tbh, but it's really good to just here anything from you (tweets aside). the fact that you are still updating on here at all is enough to satisfy me.

i think it goes without saying, but if us lepht-fans can do anything, except expressing our sincerest condolences (i hope that's even english), then just tweet about it.

also, drugs are interesting, but sensing magnetic fields definitely wins you this coolness-contest ;)

stay safe pls,
cleft

Dan Campbell said...

What Cleft said, about it being great just to hear from you - yes.

So much on your plate, Lepht. Is reality gonna give you some repose at some point, just give you a damn break?

Well, it sounds like the silver lining is this pregabalin. At least that helps you deal with everything that's being thrown at you.

I hope things settle down enough by next year so you can visit the next biohack festival, and hang with some of the people you inspired, and of course Warwick. Besides the historic symbolism of all these pioneers getting together, it would just be a well-deserved vacation.

Keep us update when you have the chance & the energy.

Love always, regards to Paul,

DC

Brian McEvoy said...

There are a lot of people sending good thoughts your way.

Raven Blackfeather said...

I hope things get better for you, Lepht. Keep doing what you do and whatever happens you have a lot of people behind you. Good vibes your way!

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[pls no ask about the vodka. debate is always welcome. remember, Tramadol fucks you up]