Weʼve raised £2,290 to To get Jamie a desperately needed wheelchair, WITH all the necessary personalisation.
- Funded on Saturday, 29th February 2020
Crowdfunding is a new type of fundraising where you can raise funds for your own personal cause, even if you're not a registered nonprofit.
The page owner is responsible for the distribution of funds raised.
We've made the amount needed for the chair, at base. However there are necessary customisations (wheelchairs need to be tailored to fit the individual person) that have driven the cost up to the current target.
Here's the short-short version, if you're one of those people who suffer from a low attention span:
Jamie Lee is a dear friend of mine.
Life has continuously and consistently taken a big ol' stinky poop all over Jamie's life, and this has come to one of its too-frequent heads.
Jamie discovered he'd been misdiagnosed for over a decade and is stuck in a bureaucratic loophole. He can get neither the housing nor the wheelchair he needs, without getting one or the other first. The loophole/wheelchair thing is complicated, I'll talk about it some more below.
Getting a wheelchair seems like the more straightforward option, compared to a house, so let's raise the £2,000 that he needs for a shiny wheelchair, for a Christmas miracle.
Here's the download on the wheelchair situation:
Jamie lives in an attic flat on the third storey of a house. To get out of the house, Jamie has to butt-scoot down the stairs, and Jamie can no longer really move about the house without aid. Jamie really needs a fully adapted, wheelchair accessible home.
The Council won't consider Jamie for a wheelchair accessible property, because Jamie doesn't use a wheelchair full time (only because Jamie doesn't have one).
You can't get an accessible house without a wheelchair, and Wheelchair Services will not consider you for an Active User Chair unless you live in a specially adapted home.
To describe this as crazy is to miss a perfectly good opportunity to invoke the word 'Kafkaesque'. This is the inescapable wheelchair/housing paradox.
For those of you with a longer attention span:
I've known Jamie a very long time, though I don't remember exactly how we met, I do know we met through Live-Action Roleplay.
I know, it's horribly nerdy.
Still, it was also an environment in which weirdos, freaks and nerds – like me, and like Jamie – had a place to thrive and make meaningful friendships.
Jamie has since gone on to make friends in other, similar, nerdy and geeky places. K-Pop fandom, the BTS ARMY, para-sports, fanfic, Korean language learning, disability rights - especially in music - and more. Despite the increasing disability, Jamie is always up to something. He doesn't just spend his days scooting up and down stairs on his butt for the lulz.
Jamie's bashful, embarrassed and ashamed (though he shouldn't be). He wouldn't be asking for help if it wasn't serious.
In fact, he's not asking for help, I'm asking on his behalf, which means it's all about twice as bad as Jamie is letting on to me, and I think it's serious.
He's never been shy of offering moral and emotional support to others, including me when hard times have hit. As always seems to be the case, it's those with the least that give the most when others are in need. It's also those with the least who, I think, are the most reluctant to seek help.
Back in the LARP days, Jamie was 'Bex', and we'd better get this all out of the way now I suppose. Many of you reading this might know the man, Jamie, from when he was the woman, Bex, or 'Purple Bex'. You might know Jamie from his Instagram/Facebook/Twitter - @Cutelilbritboi.
As long as I've known Jamie, he's had gender identity issues, usually playing gender-swapped and eccentric characters. Ironically, one of his best known and best-loved characters was a wheelchair user.
At the same time, Jamie has never been an arsehole about his transition or disability. He has been endlessly patient and tolerant of how this confuses his old friends. Polite when we slip on the pronouns on occasion or use 'they' while in a blind panic. He has been gracious when we stumble as we try to understand and accept that he is now closer to his true, inner self.
Jamie has a way of making you feel appreciated, whether as a fellow player, fan or as a maker of stories. He is absolutely the best person in the world to give presents to, with a bashful 'aw shucks' charm that makes you want to hug the life out of him. Jamie also has a way of bringing out some of the best qualities in other people. He encourages them to be the kindest, most generous and most creative person they can be.
I am my best self when I'm with Jamie.
What little he has, he always shares. While I've been poor and sick, and have let gifting people lapse, barely a Christmas goes by without a card and a little present from Jamie. Even if it's some kitschy piece of tat, it never fails to raise a smile. Jamie loves kitsch, and that love is infectious. Even I, an inveterate moody old goth, can grin when Jamie sends me an LED bunny-rabbit nightlight.
In any sane universe, he'd have been born as some cuddly, purple, gay kitten, living in a pink-painted and glitter strewn house.
Unfortunately, we live in this timeline, the darkest of timelines. There is no cosmic justice or karma, and shit things happen to the best people. So, it follows that Jamie, being one of the best people in the world, takes the most crap from a cold and indifferent universe.
"We are as genitals to the gods. They play with us for their sport," as Lord Melchitt put it.
Apart from the gender identity issues, Jamie was diagnosed with pretty severe fibromyalgia. That's a long-term illness that causes pain, brain-fog, trouble sleeping and is co-morbid with depression and other issues that result from constant pain and lack of sleep.
I could go on, and if you know anyone with fibro, please do look out for them and help them out, but in a horrible twist of fate, it turns out that Jamie doesn't have fibromyalgia at all, but rather Multiple Sclerosis and Functional Neurological Disorder (MS & FND).
This is where it gets complicated again, but here's the download on the medical situation:
Jamie was wrongly diagnosed with fibromyalgia for years.
Jamie fought this diagnosis, thinking something else was wrong, as he was getting some pretty severe symptoms that didn't marry up to fibro. Paralysis, seizures, loss of bodily control, nerve pain and more.
Jamie was 'lucky' enough to break his shoulder about a year ago, and his orthopaedic doctor, fortunately, also has good neurological knowledge and realised what was up.
That got Jamie on the proper medicine for seizures and nerve pain and referred Jamie for the appropriate tests and evaluations. Finally, Jamie knew what was up. Multiple Sclerosis and Functional Neurological Disorder.
The right diagnosis means the proper treatment, and the opportunity for a more fulfilling, and full, life. That takes time, a wheelchair, and fixing a lot of the damage the wrong treatment has been causing for years.
Jamie was misdiagnosed and mistreated for a decade. Worse yet, some of the treatments given for fibro, make MS worse. Now he's finally getting the correct treatment, years too late.
With the right treatment at the right time, he could have continued his career. He could have led a more active life. He could have participated far more in society and the world. His dream career that he was on course for was in the music industry. From dizzying heights to a disappointing low.
Let's just take a moment and absorb the full impact of that, shall we?
Having a debilitating ailment, especially an invisible illness like fibro, is bad enough. You make adjustments, you lower your life expectations. You come to terms with being unable to hold down a proper job and living off benefits, relying on people's forbearance and help to make a good enough life for yourself.
Then you discover that this was all bullshit.
What you had was an undiagnosed, untreated, other condition; a condition that could have been controlled with the right treatment. You lost your career, you lost your aspirations and dreams, and that's bad enough, but to find out that it was unnecessary?
To get into debt, to be shunted from hostile rental property to hostile rental property, to be in constant pain. Then to find out that so much of it was just goddamn unnecessary?
That's a big oof.
Jamie may be on the right treatment now, but you can't help but grieve for the life you lost, the one you could have had.
Jamie has also struggled with asking for and getting the help he needs, whether from government, friends or family.
Bureaucracy is one thing, but there's a hostile environment for people who need assistance. You're always suspected of being a cheat, a scrounger. Many of us struggle with the sense of guilt and judgement that comes with that. This is a problem of Jamie's that I acutely empathise with.
I shan't go into details, as it would get more than a little sweary.
Red tape, mistakes and legal loopholes have even prevented Jamie from claiming the misdiagnosis compensation that he should have been due. So much has gone wrong, and so little support has been forthcoming for everything that was, wrongly, done to him.
I don't think any of us want the NHS to be sued into the ground by bogus claims, but the protections against claimants have, in this instance, screwed Jamie royally. They also mean that Jamie can't hope to get anything but the most basic wheelchair for at least half a year, and that unsuited to his situation.
The familial rock, the constant Jamie had, was his father. Unfortunately, he passed away not so many years ago, taking away the one truly dependable person Jamie had. This triggered a major depressive episode on top of everything else.
We would all give the Earth to Jamie, but a one-and-a-half-grand wheelchair is a tall order for people whose lives are often as messed up, in their own way, as Jamie's.
Jamie is a fantastic person who deserves, for once, to have something amazing happen for him. Let's make it happen.
My weirdos, freaks and nerds, I ask you to rise up and support a fallen member of your tribe!
My gamers, donate the haul from your next dungeon crawl to help Jamie out!
My bros, let's make Jamie's bro-hood official, and show him our brotherhood is as strong as any sisterhood!
Lovers of K-Pop, the BTS ARMY, rally to the call and come to Jamie's aid! You've done so much to support Jamie in recent years emotionally, but you can do more!
It seems so little, a wheelchair, but it literally means the world to Jamie. A chance at a new house, a new life, the ability to travel and visit friends again, to go to movies and concerts, to get out of debt, something as simple as getting a haircut! With the right chair, Jamie can even take up a part-time job to give some structure, hope, opportunity and income to his life!
Let's get that goddamn chair, set the ball rolling on Jamie getting into better accommodation and see if we can't pay down some of Jamie's debts while we're at it. Immediately I talked to Jamie about setting this up, he showed concern about paying it forward and helping other people in similarly bad situations. That's just who he is. This is the blue touchpaper on a chain of kindness, so let's set it off!
You will be bro, we got you.
Some people had some questions before taking the plunge and donating, so I asked Jamie to answer them:
Q: WHAT ABOUT THE PRACTICALITIES?
A: I'm in PT already training for becoming a full-time chair user, & campaigning like crazy for rehousing. My neuro team are also doing their best to help me with this. The problem is a lack of accessible housing in our borough (& any social housing in fact) & thus super-strict prioritized criteria.
Though my condition does affect my hands & fine motor control, I'm working very hard to rebuild my core/upper body/arm/hand strength... you can even do PT in bed, between hospital sessions! 💪
Q: WILL THE WHEELCHAIR BE KEPT DOWNSTAIRS?
A: No, 'cause I need it to get safely around my own flat. I can't walk more than 5-6 steps anymore, & that's with furniture/human being support!
To get it downstairs, I'm lucky enough to have kind & helpful neighbours (who already help me a lot). I'm already feeling more confident & less utterly-ashamed-of-being-mostly-trapped-in-bed, I'm hoping that there will be friends visiting again to help carry it, too! 😊
Q: WILL IT BE SECURE FROM THEFT?
A: Yes! Absolutely! There are 3 locked doors between my bedroom & the outside world, plus a gauntlet of guard-lemurs & seven little Korean boys (of course, they're all stuffies, but they do fall over pretty loudly!) 💜
Q: WHAT DOES JAMIE DO NOW WHEN HE GETS TO THE BOTTOM?
A: This is a *fun* process! I climb up the furniture in the hall & hang on to the doorframes, until the taxi driver (or hospital transport staff with a transportation chair) comes to the door, & from there it's either wobble-hanging on to a taxi driver (thankfully, the local company know me & are very helpful!) or roll the approx 6 steps from front door to vehicle!
Repeat the process at the other end & to get home! 😶
Since June this year, when my *good* leg finally decided to join my *bad* leg in not working 90% of the time (& spasming maybe 5% of the remaining time LOL), my outside world's been hospital or places I can get a taxi to & from, know well, & know I can get physical assistance & support on those 5% of good days when I can wobble those precious 5-6 steps relatively safely!
MS & FND are conditions that, though my health & mobility have a (pretty crappy LOL) baseline, do have a degree of variation. Confusing, I know. Especially to me!
Q: HOW DOES HE GET ABOUT?
A: See above! Not very much or very well, as the world's not quite ready for butt-shuffling in public yet! 😹
Observers will notice that 99.9% of my online content is pix taken in/on bed... the other 0.1% is pix taken pre-June or pix taken from shopping mall etc day-hired ouchy, don't-fit-my-curved-spine chairs! ☺
I've never been so thankful for home-delivered everything & kind & caring neighbours, & for, when he's able to make it here to visit (rarely due to his own health issues), my BF's help with not just getting around but with personal care, too. 💕
Thank you from the bottom of my heart to everyone who's been so kind as to donate! I am awestruck! & thanks to peeps who asked questions, too! I'm awed by their being even interested in boring lil me! 💜
- 6 months ago
James 'Grim' Desborough6 months ago
Chair's there! Accessories on the way! Special cushion and stuff :)
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- 7 months ago
James 'Grim' Desborough7 months ago
This is the model of chair, though not the same colour. This is the tester/fitting model.
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- 7 months ago
James 'Grim' Desborough7 months ago
Here's Jamie getting measured-up and fitted in a test chair. We're full steam ahead to get the proper one now! We're still a bit short on the full, modified cost, if you wanted to chip in a little more :)
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James 'Grim' Desborough started crowdfunding
Leave a message of support
Feb 23, 2020
Feb 11, 2020
Feb 11, 2020
Feb 10, 2020
Feb 9, 2020
<3 for Jaime. All my best
Asha Mutton Phillips
Jan 30, 2020
I don't know James, but they were someone nice enough to leave a comment on my art.As a fellow ARMY and someone who works in care this story hit me hard.It isn't much but I wish them all the best💜
Jan 26, 2020
With love x x
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