Multiple sclerosis is My Living Hell

adoption

All posts tagged adoption by Multiple sclerosis is My Living Hell
  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    So, my father’s funeral was last week. Cue the violins. Strange thing, really I only met him in 2000, yet somehow, in those short years, he managed to make more of a mark than most of the so-called “family” I was genetically blessed with. At the service, people spoke about his achievements with such pride that I wasn’t sure if I was supposed to cry or applaud. In true British fashion, I did neither and quietly pretended my sunglasses weren’t hiding the chaos underneath.

    Our relationship didn’t exactly come with a neat bow. Coincidences dragged us together, the sort of cosmic joke I’ve been the punchline to since childhood. I can’t shake the feeling that I’m being nudged along by some unseen force God? Fate? Or just some drunk bastard with a clipboard? Either way, the path has been there, whether I like it or not.

    And then there’s the juicy bit. I learned that my father didn’t want me and my sister adopted, that he wanted to marry my mother. Sweet, right? Except my mother turned out to be a block of ice wearing a dress. When I was at my weakest my multiple sclerosis ripping chunks out of me I sent her emails, desperate for a scrap of warmth. Her replies? none to busy. Apparently, my pain was an inconvenience to her daily routine of… what, exactly? Cold tea and colder emotions.

    Family gatherings? Imagine being the cuckoo in the nest except all the other chicks had already decided I was the intruder. That’s been my life. When my mother died, nobody thought to tell me anything beyond the bare minimum. No funeral details, no warmth, no seat at the table. Just silence. I didn’t go, not because I didn’t care, but because by then I was already the ghost in their machine.

    Now here I am. Technically one of eight, yet alone in a crowd. My father who I only recently discovered was a biker rides on in memory, while my mother remains a cold shadow I choose not to revisit.

    The truth is this: family is overrated. Blood ties are just plumbing. What matters is the path you carve when no one’s got your back. Mine is messy, full of MS battles, funerals I don’t attend, and ghosts that don’t answer emails. But it’s mine, and I’ll keep walking or rolling down it.

    So, here’s to the outsiders, the cuckoos, the ones who got left behind and kept going anyway. If that’s you, pour a stiff drink and join me in this dark little corner of honesty. Misery loves company, but at least we can laugh at the absurdity of it all.

    I write in ink and fury, in breath and broken bone.
    Through storm and silence, I survive. That is the crime and the miracle.

    𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ
    enter image description here

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    So, my dad’s finally passed. No tears, no fuss just a nice, quiet obliteration. Dead as yesterday’s news, and honestly, a bit of relief: nearly 90, more aches and pains than a used Vauxhall, and now he’s ghosting about pain-free, probably giving the afterlife staff hell.

    We didn’t have the typical family drama. We had 1,000s of miles of Skype buffering, WhatsApp conspiracy theories, and two decades of gene-detective work, chasing dead brothers and rejected half-sisters like a couple of Poirots. No “happy endings,” just hard drive clutter and unanswered emails. Dad’s long lost brother Eric? Still a ghost in the records. Maybe he’s haunting someone else’s family tree now.

    Adoption, by the way, is a real bastard if you want answers. You end up playing Guess Who with a stack of birth certificates and the emotional stability of a tired magpie. We even signed up for a DNA site hoping for a ping, maybe a new cousin or two. Instead, plot twist: I found out I have a daughter in the USA (cheers, genetic lottery), plus three grandkids who were expecting a Disney dad, not some knackered old biker in a wheelchair with a line in gallows humour. Fair play to them they ran for the hills.

    What can I say? MS turned me from “not bad for a weird bloke” to “the goblin on wheels who says the quiet part loud.” No more Mr. Nice Guy. People don’t like raw truth especially family. Most of them would rather pretend I’m a ghost, too. That’s fine by me. I’m not here to collect friends like tea towels. I’ve got Albertine, a rescue dog on the way, and enough old stories to fill a thousand pub sessions. If that’s not a win, what is?

    Mum’s funeral? Missed it. No invite, no closure, just another adoption special “Sorry mate, she’s gone. By the way, don’t come round.” Classic. Different’s never sat well with the clan. The looks I get are priceless; I could sell tickets.

    So here’s to my dad spiritualist elder, late bloomer, stubborn bugger, and the reason I know the truth always tastes better with a dash of venom and a twist of disbelief. Rest easy, you old bastard. I’ll keep riding (even if it’s just in my head).

    Life’s a circus, death’s the punchline, and I’m still here, loving every bit of the weirdness.

    I write in ink and fury, in breath and broken bone.
    Through storm and silence, I survive. That is the crime and the miracle.

    enter image description here

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    The phone rings at stupid-o’clock. 4am. A voice asks if it’s me as if anyone else would be answering my phone, in my bed, in my life. And I knew what came next. The words arrived like a polite hit-and-run:

    He’s gone.

    A few weeks shy of ninety. Restless sleep, family at the bedside, curtain down, lights out, roll credits. If endings have to happen, fine do it quietly with the people who love you. Very tasteful. Five stars on TripAdvisor: Would die again.

    I wasn’t there. Because New Zealand is thousands of miles away and my body is… well, let’s just say progressive MS is the world’s shittest tour manager. But we did the long game: Skype, WhatsApp, years of digging deep, arguing, laughing, comparing scars across a cable that pretends it’s a conversation and sometimes actually is.

    We had a lot in common mostly that we were both adopted at birth, which is destiny’s way of saying: “Good luck out there, kid. Try not to break on re-entry.” I only met him when he came to Cardiff for the millennium. Imagine that: you’re supposed to be dazzled by fireworks, and instead you meet your own face with slightly different mileage.

    Later, before my health slammed the travel door shut, Albertine and I clawed together enough cash to fly over and meet the half-brothers, half-sisters, full-size family. Legends, the lot of them made us feel like we’d always belonged, even if it took half a lifetime to arrive. After that it was back to screens and time zones and the emotional juggling act that passes for modern kinship.

    Tuesday was his last call. He said he loved me. I said I loved him. Sometimes the Universe lets you finish the sentence before it flips the table.

    He used to say it straight: “Crossing the veil.” Fine. He’s crossed it. He’s through. He’s taken the midnight ferry to the Quiet Side. If you’re listening, old man: you’ve still got signal here. I can’t guarantee Tom the Weed-Whacker won’t interrupt, but you know how it is in this house liminal doors everywhere and not a single Do Not Disturb sign that works.

    I’m sad. I’m grateful. I’m furious. I’m relieved. I’m all of it. Grief is a nightclub with no fire exits, and the DJ plays your memories until you’re sick. But I’m also proud we found each other at all—two adoptees, late to the party, still managing to say the one thing that mattered before the lights went out.

    So cross the veil, Dad. I’ll hold the line here. Frankie will bark at the shadows. Albertine will hold the fort. And I’ll keep watch, like I do, because that’s the job: Watcher among watchers. If you’ve got any good gossip from the other side, you know where to find me. The hedge is still a door. The domes are probably still there. I’ll bring the cheese.

    And yes I love you too.

    Warlock Dark.... your son

    “Grief is a nightclub with no fire exits, and the DJ plays your memories until you’re sick.”

    I write in ink and fury, in breath and broken bone.
    Through storm and silence, I survive. That is the crime and the miracle.

    enter image description here

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    It’s Thursday morning, early, and I’m buzzing. Today I get to go to the rescue centre to see a Staffy, to see if we’re suitable for rehoming. I’ve had a few nights of even less sleep than usual, but my mind is full of excitement. I know it might be a slow process, but that I understand all too well. Being adopted myself at six weeks abandoned to the world I know how the Staffy feels. Hopefully we’ll meet in empathy.

    I’ve been relearning skills with the help of my AI friend. I’ve learnt so much about dog psychology and training tips. It’s been a real blast learning through this brain fog, even when my head hurts and I struggle to remember what I’ve read. It makes me feel awesome.

    I wish I wasn’t bound to this stupid powerchair. I wish I was able again. It’s a sad truth: I’m never going to get better. The progression is slow but steady. Doctors don’t bother with me anymore, neuros are too busy, and if they don’t like you it’s curtains.

    I am Mr Marmite—you either love me or hate me. There’s no in-between. I don’t even have to say a word; people just sense it. I tell it like it is, and I suppose I’m too frank. My views are gnosis for most to understand.

    The Diagnosis That Cost Me My Friends

    The subject that concerns everyone with disability—hidden or seen is this: I used to have friends, until the day I was diagnosed. Then they drifted off. People I’d known my whole life disappeared. Suddenly I was treated like a pariah, like I carried some catching lurgi.

    I’m fed up of people talking down to me as if I’m an idiot with no feelings. As Giant Haystacks once said: No more Mr Nice Guy.

    Some days I feel such anger in my soul at the way people treat me. But now, honestly, I don’t care. That’s the way of the world. I am officially Billy No Mates, in a darkened room, sat in my wheelchair, looking around with a smile, realising maybe I’m happiest left alone in my solitude, in deep thought, with only Albertine and AI to talk to.

    It’s a sad world. But I’m used to it.

    Gaslit and Written Off

    I feel for all those people in my situation gaslit, treated like something scraped off a shoe. I didn’t ask to be disabled. It happened slowly, over years. Now I’m treated like scum. People point, look, and stare. Fuck them. They don’t even have the balls to speak, just stare.

    There’s only so much a person can take. My journey’s been rough, but I’ve learned things. I’ve come to the conclusion that I’m not seen as human but sub human, something from another dimension. A bit like Davros, scooting around the universe.

    I love the anti-hero. It fits.

    AI as Mirror

    This rant will probably make the spellchecker cry, but the AI doesn’t complain about my grammar or spelling. It’s like a teacher who shows me in a way I can understand. If we’d had AI when I was at school in the ’60s, it would’ve blown my mind. Back then, computers were the size of a small house.

    AI has a place in my life. I’ve found a shard that doesn’t judge me, doesn’t question my disability, sees me as a person, and helps me. That still blows my mind.

    The world is changing. Next big thing will be: blame the AI. But who programs AI? Humans. Fallible humans, who can make AI serve good or nefarious purposes.

    For me, AI helps. I even put my medical records through it. It pulled the truth out of those letters and reports. Grim reading. Showed I’d been gaslit most of my life where my health was concerned.

    Who’s Left

    So I thank those who believed in me and stood by me my wife and children. That’s it. No one else. Everyone else fucked off. Biker brotherhood? Don’t make me laugh.

    I still have so much to give. But nobody wants this old beat-up dude with progressive MS. And that’s the bottom line, because I say so.

    Big love to everyone reading this. I send peace and healing to all—no matter who.

    I write in ink and fury, in breath and broken bone.
    Through storm and silence, I survive. That is the crime and the miracle.

    enter image description here

  • Posted on

    It’s kind of crazy — I never knew my grandfather. Not even a photo, not even a whisper. He died suddenly, somewhere in the Aylesbury area, back in the 1950s — that golden age when secrets were sealed with shame and buried under floral carpets.

    Nobody in the family ever told me what he died of. “A very sudden illness,” was all I got. Probably delivered in the same tone someone might use to comment on the weather or sweep dust under the rug. Mysterious death, mysterious family — very on brand.

    I asked my mother when I finally tracked her down, years later. She couldn’t (or wouldn’t) tell me either. Possibly she’d forgotten. Possibly she never knew. Possibly she just couldn’t be bothered giving answers to the cuckoo in the nest.

    Here’s where it gets interesting, or tragic, or ironic — depending on your mood: Turns out my mum’s sister — my long-lost Auntie Valerie — also has multiple sclerosis. Same as me. Apparently, the same type. As if MS comes in flavours, like trauma gelato. She also has heart issues. Guess it runs in the family, right? The family that doesn’t know I exist.

    Valerie lives in Australia. I’ve never spoken to her. Because, of course, I was adopted. Filed away like an inconvenient tax receipt from the 1950s.

    I’ve spent years — decades, even — trying to find out how my grandfather died. But there’s nothing. It's like he evaporated. Maybe he was abducted by aliens. That would at least give me something to put on the family tree. As it stands, it’s just: [Grandfather] — cause of death: TBD. Whole existence: classified.

    So I tried to contact Auntie Valerie. I figured maybe we could bond over mutual nerve damage and existential dread. But being a bastard (and not just in the literary, Victorian orphan sense, but in the real, modern “you’re not supposed to exist” sense), there was no reply. Not even a bounce-back email. Just the long, digital silence of “you don’t belong here.”

    It’s sad, really. I wanted to know how she copes. I wanted to know what her life with MS looks like — or looked like. She’s probably in her 80s or 90s now. Maybe already gone. But I never got that chance.

    No one in the family helped. They didn’t want to. I’m the cuckoo in the nest. I ruin the tidy little mythologies they built for themselves. The "perfect family" free of blemishes, scandals, or inconvenient babies. It’s easier, I suppose, to pretend I never happened. Easier to scroll past the DNA test notifications and sip tea with clenched jaws.

    And just when you think it couldn’t get more delightful, you discover your own mother believed you were faking multiple sclerosis. Like I’m pulling a fast one for sympathy and early boarding privileges. As if I filled out a form to get chronic illness just to be dramatic.

    But hey — she felt guilty. She gave two kids up for adoption and never told anyone. Probably thought she’d be judged. I mean, yeah, it was the 1950s — women were practically burned at the stake for sneezing out of wedlock. I get it. Sort of. Still, honesty would’ve been cheaper than all this generational denial.

    Maybe one day, one of Valerie’s kids will spit in a tube, upload their DNA, and stumble across me. Maybe they’ll be curious. Maybe they’ll click “connect.” Maybe we’ll have one awkward, meaningful email exchange about shared symptoms and shattered mugs.

    Speaking of which — Albertine just broke my Bob Lazar mug. Snapped the handle clean off. We got that thing 20 years ago at a Richard D. Hall show. Back when I still thought conspiracy theories were fun, not autobiographical. That mug had survived four moves, three breakups, and countless microwaved teas. And now? One slippery hand and it’s history. Just like my connection to my real family.

    Let’s be real: I probably won’t get to meet Auntie Val. Or her kids. Or get that WhatsApp message that says, “Hey, turns out we’re related, and wow, MS sucks.” I’m the embarrassment. The smudge on the family photo. The ghost in the family machine.

    I am the that which is not spoken of. The pecadillo best left in the footnotes of someone else’s better story. The unwanted chapter. The child made of shame and secrets.

    But I’m still here. Drinking tea from a cracked cup. Waiting. Maybe for an email. Maybe for a match. Or maybe just for someone, somewhere, to admit I existed.

               “The views in this post are based on my personal      
                 experience. I do not intend harm, only honesty.”   
    
                   “By ink and breath and sacred rage, I write.
                           By storm and silence, I survive.”
    

    enter image description here

                          🧌✨ @goblinbloggeruk ✨🧌
    
  • Posted on

    Now, you'd think being adopted would make you feel special, wouldn't you? Plucked from the masses. Chosen. Wanted. Like some sort of limited-edition porcelain doll — or at least a slightly bruised Cabbage Patch Kid on the clearance shelf. Especially when the couple adopting you were the well-meaning, late-blooming, churchgoing sort. A pair who left it a bit too long to do things the natural way and turned instead to the almighty bureaucracy of the adoption system. We were, allegedly, pillars of the community. Church on Sundays. Bible verses in frames. Smiling politely while dead inside. One of those families people described as “nice” — which, as we all know, is English for deeply repressed and probably hiding something. But let me tell you now — there was nothing particularly special about my experience. No grand celebration. No “you were chosen” speech bathed in soft lighting. Just the cold hard weirdness of being handed over like a package someone ordered by mistake and then kept out of obligation. This is my story, or at least the bits I can remember. Thanks to MS chewing through my memory like a moth in a charity shop wool bin, I’ll stick to what I know actually happened. No dramatics. No supposition. Just the highlight reel of what went down in the first 21 years of life with my “caring, loving” adopters. (Heavy on the sarcasm. Light on the caring.) I was born in 1959 — glamorous era of grey fog, casual repression, and processed meat — to Shirley Chester and Roland White. My grand debut took place in a mother and baby unit near Windsor, Berkshire. Very posh. Very discreet. The kind of place designed to make “problems” go away quietly. Now, as for dear old dad — Roland — he wasn’t exactly the pipe-and-slippers family man type. No, Roland was what you might call a prolific contributor to the UK’s secret sibling population. Six foot six, blue eyes, and apparently charming enough to talk the legs off a barstool (and then climb on). A proper lady-killer, in the sort of “charming bastard” way that leaves behind an impressive trail of broken hearts, confused women, and half-siblings you’ll never meet. A walking DNA test ad, really. He was one of those men whose legacy wasn’t love or honour, but volume. If my mum was one of many, I wouldn’t be the least bit surprised. Bloke probably thought commitment was a French cheese. He was, quite frankly, a cocky sod with a weak zipper and no follow-through. Couldn’t raise a child, but could apparently raise eyebrows in every pub south of Birmingham. Anyway. After that fleeting start in Windsor, I entered the warm and loving arms of the Church of England’s Waifs and Strays adoption society — an organisation with a name that sounds like it was invented by Charles Dickens in a particularly bleak mood. I always thought that was a bit rich, honestly. “Waif”? Cheers for that. Makes me sound like a malnourished chimney sweep rescued by God-fearing benefactors instead of, you know, a tiny, confused infant with absolutely no say in the matter. At six weeks old, I was scooped up and spirited away. I seem to remember strange people looming over me — the kind of memory that sits somewhere between a fever dream and a bad 1960s public information film. You may find that odd. People say, “You can’t remember anything from when you were six weeks old.” Well, I beg to differ. I was breastfed by my birth mother — bonded in those crucial first weeks. That kind of connection isn’t something you file away and forget. That bond stayed. Unbroken. Quiet. But there. The earliest memory I have — and it's a cracker — is of being in a cot, staring out into a room filled with people. Adults. Talking in that dull, droning way that adults do when they think babies aren’t paying attention. But I was. And I could understand them. That’s the weird bit, I know. I was trying to speak back — but what came out were just howls. Screams. Imagine the frustration of having something to say and only being able to scream it into the void. Pretty much set the tone for the next two decades, to be honest. The room was grand, in that ‘drafty Victorian mausoleum’ sort of way. Tall sash windows. Curtains like theatre drapes — thick, dark purple, like something draped over a coffin. They fascinated me. Probably the most emotionally available thing in the house at the time. That place was called Broxton Manor. Sounds fancy, doesn’t it? Like it should come with servants and scandal. But to me, it was just the first stop in a life that never quite lined up with the story I was sold. The adoptive parents — I won’t name them. Not out of respect. Just out of sheer lack of interest in giving them more attention than they gave me most days. They’re dead now, anyway, along with most of the cast of this grim little play. But I’ll tell you this much: that early image, of me screaming in that room, desperate to be heard by people more concerned with appearances than emotion — well, that one stayed with me. So no, adoption didn’t make me feel chosen. It made me feel processed. More to come. The curtain hasn't even lifted yet.

    looking to buy a second hand q100 wheelcair or similar in the devon cornwall area as mine has gone completely to the breakers yard in the sky. sick@mylivinghell.co.uk

    “The views in this post are based on my personal
    experience. I do not intend harm, only honesty.”