Today in the Benjidome – Some not so FAQ, a little rant, also ‘Dave Syndrome” Awareness.
Featured Image – Sir Billith of Bailey in ‘Black Books’ Showing what happens to bearded, long-haired people should the temperature reach 88 Fahrenheit!
Title Song – Idina Menzel – Let It Go – Frozen, because it’s warm! Tribute also goes to my neighbour, who belts this out at the top of his voice when he is cooking!
Not So FAQs
I have decided to publish this as a main page on the website, so it can be constantly accessible and I can continue to add to it from time to time.
<CLICK ME FOR BENJIS NOT SO FAQS>
A Rant in B Minor
So yesterday afternoon I took to Tumblr as I am want to do of an occasion. Yes I understand I am a 34-year-old man! However I find it can be a really amazing place to share happy with. It’s somewhat of a news feed of everything geeky for me, but more recently a great community of disability support.
One frustration I have is at that whole concept, Disability support, is primarily disabled people. Surely the able should be the ones who take more time to support us. So after seeing, a post about a lucky goat that would give you money if you reblogged it, had 1.6 million notes, yet a blog post from myself yesterday about supporting people, only had 2.
“I may have gone off on one of my rare but fun rants” ~ Tim Minchin – Storm
So here it is:
1.6 million notes on a lucky goat
2 notes on posts about caring for disabled people
I do like a good moan every now and then, but surely this is just fundamentally wrong. people will share almost anything from nudity to lucky goats. but as part of the disabled community, it feels so much like able-bodied people just look at our issues and stick fingers in ears and not deal with it.
Out of Sight, Out of Mind. So many disabled people are left lonely because people just simply forget about them and the struggle they face every single second of their lives.
The support within the disabled community is extraordinary, but surely we shouldn’t have to beg for help. why is it so hard to find a Samaritan in this world.
Why is hate so easy, but kindness and support so hard to share. There are hundreds of thousands of disabled users and everyone one of them wishes to be heard, to be loved and know they are cared for.
I saw a post the other day suggesting that we should never let any post go with no notes, especially if it is someone being brave and putting their own life out there for all to see, either through image, story, art or musics.
I feel guilty having to ask for help, having to beg for kindness. This isn’t right, the world should be full of gratuity and compassion without condition
So not my worst, but I think I make a valid point, not only do I want to make disabled people aware they can get help, but I also want able bodied to read and understand, that we need THEIR help.
Dave Syndrome Awareness
Ok, I know all that was the comedy, but now I would like to take a moment a get serious.
As a bearded, long-haired man, and knowing there are similarly long-haired, bearded men in the world. I feel it only right and my duty to my fellow beardyhairymen that I raise awareness of this heinous condition.
With the temperature rising in the UK, now is the time for people to be aware of the details.
A rare disease that occurs when the victim is exposed to severe heat, usually around 88˚F – and feels the need to wear caveman-style clothes and perform fiery rituals on nearby car roofs.
Definition courtesy of Manny Bianco. a famed sufferer of this horrendous condition.
88 Fahrenheit, 31.1111 Celsius…
Shit!
Let It Go
So let’s be honest, it has been way to long of this blogging malarki, without any Disney! This isn’t my favourite Disney, but it really is a cracking song. My Italian neighbour belts out a fantastic version occasionally and its so enjoyable listening to someone just having fun! plus if we watch the video it might cool us down a little. Did I mention it was hot in the UK today. Like I know other countries have it hotter, but we are used to rain and wind and cold. Plus have you tried drinking tea in this temperature?! I hear constantly, oh its refreshing! ITS TEA….IT’S HOT….IT’S HOT OUTSIDE…I DON’T WANT HOT INSIDE TOO!!!
Urm so yeah Elsa….take it away.
On The Right Path 
Wow! Lots of emotions! I laughed, I got angry, I laughed again! I said goodbye to two of my “friends” because they thought that my husband was boring, because he is not physically able to walk long distances, he doesn’t like to stay out all night drinking, etc.. I realized they weren’t really my friends. They were only there because I was convenient, once I married a disabled man, that convenience went away. Their loss though, Neil is the furthest thing from boring. He’s super funny, and so cool to hang with, and he makes an effort. It might take all of his energy, but he goes on adventures once in a while. Oh, he’s also a master chef (not really), but he could be!! I’m so blessed to have married a fantastic cook! I wrote a blog post to raise awareness about his condition, you can read that here, if you chose: https://lifelessonsaroundthedinnertable.wordpress.com/2015/09/13/september-is-cmt-awareness-month-and-my-hero-has-it/
As you mentioned, the able bodied need to be the ones to step up and raise awareness. To do everything we can to brighten other people’s day! I try to put myself in your shoes. I have this great ability to genuinely feel things on a deep level, so when I read about how much you struggle, my heart physically hurts, and I hate that I can’t to anything about it (I have this uncontrollable urge to fix things, and I understand I’m not the person who can find a cure, and even if I had that capability I couldn’t physically find a cure for ever disease, it just isn’t possible, but I still don’t have to like it) I don’t understand how people can be so insensitive. Yes, you should not have to ask for kindness, kindness should just be handed to you. And not just because you have a disability, but just because your Ben! This nice, funny, well rounded individual! I wish every person had a heart of gold, but unfortunately that isn’t the case, and I just can’t wrap my brain around it! I guess I need to learn to “Let it Go” and continue to support the people that I can! I actually read up on CRPS and all that it entails when I first discovered your blog! The only way we can raise awareness, is by learning. I hope more of your followers take that same initiative. I hope you have a fantabulous day!! Hugs to you, friend!
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I will read and send and fuller reply later. But I have to make it clear that you know how wonderful you are. Neil is a very very lucky man as are you of course!
But yeah you are wonderful and the world needs like 4 or 5 billion more versions of you instead of the evil and hate.
Big love and wookieehugs xxx
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