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Final Wishes: Crowdfund Update

March 27, 2014 7 comments

[If you’d like to donate to my final wishes, please click here: Final Wishes Crowdfund]

This post is an update to what’s been happening since I asked for donations in the article Dying with M.E. as a Software Developer.

First I want to thank everyone who has donated so far for their incredible generosity. Although I haven’t replied to you guys individually, I was really excited to see donations appearing in my mailbox, and although every donation big and small counts, I was particularly stunned by those of you who sent in 3-figure sums, that was really amazing kindness from strangers, thank you so much! Of course, even those of you who sent in $5 or $10 were much appreciated, every penny counts!

The fundraiser reached $1505 of its $3000 goal. In addition, a few of you sent contributions via PayPal directly which bumped it up to somewhere between $1700 and $1800. We charged teenagers about $8 (50 Norwegian crowns) for entry to the party and adults $16 (100 Norwegian crowns) to cover the rest of the costs, and that together with wardrobe and glowstick sales raised a further $1100, which was just enough to cover the costs. Amazing!

The Party

After one month of solid planning every day by several of us, the party for the teenagers took place on 27th February 2014 from 5pm-9pm local time. Although quite a lot of people were away because of winter vacation, we nevertheless somehow managed to cram in just under 100 underage kids into Drammen’s largest nightclub. For the first time in many of their lives they were bombarded by spot lights, strobes, smoke machines and loud party music. Many of these teenagers suffer from mass anxiety but thanks to having a couple of adults on tap that volunteered especially to help out for the purpose of helping them to relax, we got almost everyone onto the dancefloor eventually. I ran around for 4 hours making sure everyone was ok and really only got to dance with them for the last hour, and slept for an entire week afterwards (no exaggeration), but it was worth it!

Afterwards, some of the girls wrote to me. Here are a few of their messages:

 

“Can I say this in Norwegian? Tonight, you really hit the mark [Norwegian literally: ‘the big drums’], I’m never going to forget this! This was totally sick! [that’s teenager speak for ‘amazing’]

Katy, I’m not alone about this, but I love you! For real, I really love you! You’re a party queen!

I’ll never forget this night” – Ida S

 

“Goodnight everyone ❤ ❤ Have had a f*cking great day ❤ Thanks to Katy who had the world’s best alcohol-free party ❤ Enjoyed myself incredibly much ❤ <3” – Victoria N (Facebook post)

 

“I just had an AWESOME night at Klubbteateret with a bunch of great people! I love all of you, and you b*tches I can’t/forgot to tag. Big thanks to everyone who made it possible and the ones shaking loose on the dancefloor. My feet hurt, so thank you.” – Marie (Facebook post)

 

Many more came to me in person and told me their own stories of the night and about the good time they had.

Perhaps the most important thing to come out of the party were three of the girls – Christina, Emine and one other I can’t name – who told me afterwards that the party had helped them a little with their social anxiety. To me, knowing how many years I suffered for, that was worth the money on its own. I used to hate parties, for all of my life, until a couple of years ago, so it was blissfully ironic.

But let’s not forget, none of this would have been possible without a big pile of money. And it was you, my blog readers, who made this possible. Between you, you have touched the lives of many suffering children, and I just wish you could see their faces and how grateful they were that some people wanted to give them a good time, and make them happy in a way other than sitting down listening to their problems and sending them to therapists – which by the way, I do on a regular basis anyway. So thank you all so much!

At the party, I spoke the names of all of the people who helped financially and practically towards the party on the mic from the DJ booth, and they cheered and whooped for each and every one of you. Personally speaking, at 34 years old, it was extremely surreal to see such an enormous amount of my friends in the same place at the same time, and I would have to say that it’s the most fun I have ever had in my entire life – without a drop of alcohol, love or sex involved. The power of friendship and bringing people together.

Here are some videos from the party:

There is plenty of video footage left to edit and upload, I’ll add more to the YouTube playlist as they are ready:

I’d like to thank the following people and organizations for their financial or practical contributions to the party, without which it would not have been possible:

Mina Engnes Horne
Alexander M. Høyer
Ian Boyd
Jesús Alberto Villegas Mata
Chu Hoang
Geoff Smith
Christiane Reneè Belsby Johansen
Juan Mata Wong
Raja Naga
Will Jordan
Jez Simon Ward
Carson Morrow
Melissa Bolstad
Péter Szakszon
Michael Vach
Michael Longbottom
Robert Wise
Lisa Kremer
Orlando Selenu
Dustin Carlino
Spencer Park
Ajit P Musalgavkar
Adalberto Neves
Liv Iren Hennum
Kevin Stordal
Martin Hellström (the owner of Klubbteateret; a club with a 23-year age limit who told me after the party they had never let any underage people into the premises before)

LightSwitchHelpWebSite
SB Net Services
Glow Brothers
Klubbteateret (and all their volunteer staff for the wardrobe, security, bartender – Jon, Camilla et al for working for almost no pay that day)

Thanks to the following people for working as volunteer staff, in some cases at the cost of a day off work:

Thomas Johannesen
Kenneth Jensen
Marius Sørum Moe
Marita Chruicshank Kagiavas
Esther Elise Langørgen Fredriksen

Thank you to Dina Williamson Madsen and Marie (Lex Motionless Wooch) for helping to organize stuff and fixing my hair 🙂

I’d also finally like to point out that while we spent $2065 in total on the party, the true value of all the items and services we used came to over $6000, but thanks to the kindness and generosity of the people above, we managed to secure heavy discounts on almost everything, and get some things for free.

What’s Left

Now it’s all about the bucket list; specifically, I’m looking to raise enough money to travel from Norway to Minnesota and Romania to see those of my friends who live too far away and can’t fund their own travel one last time. If you can help out with that, I truly believe I will have covered all the main points of what I really feel I need to get done before I get too sick to travel (technically, I already am; I’m just going to choose to ignore the hospital’s advice – “lay in bed for the rest of your life” – on this one).

Please donate here: Final Wishes Crowdfund. Every penny counts.

Thank you once again.

Love,

Katy.

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Dying with M.E. as a software developer

January 27, 2014 40 comments

[If you’d like to donate, please click here: Crowdfund or Become a Patron]

[Updates to this article: Final wishes: Crowdfund Update, and Future of my Blog: I’m Still Alive]

A couple of months ago I wrote about Living with M.E. as a software developer. What I didn’t write about was the true extent of my illness, the potentially fatal prognosis of M.E. and what I want to happen as a precaution to my possible death. Read more…

Living with M.E. as a software developer

October 26, 2013 17 comments

This is not a sob story. I’m just going to tell you about how I feel.

I wouldn’t normally write an article like this on my professional blog, but I’m fed up and want to reach out to people and share my experience for anyone who is interested.

Many of you have noticed that the posts on my blog are very sparodic. Well, a few years ago, I started to get tired easily and found myself needing 12 hours of sleep per day. I thought that I was just someone who needed more sleep than average, although it was frustrating that the days were so short. In the last 2 years, I’ve been extremely tired, and out of professional work, my sleep level rising to 16-20 hours per day, constant pain in my back, neck and shoulders (which is occasionally excruciating; I pop painkillers like candy), a strong sensitivity to changes in temperature making me feel very hot and cold all the time (thermostatic intolerance), regular headaches that I never used to get, periodic bowel irritation, weakness in the arms and legs to the point that some days I can’t walk and others I am so tired that I can’t even lift my phone to call someone for help. Sleeping does not actually make me feel any more refreshed, I am usually just as tired when I wake up as I was when I fell asleep. Mentally, my brain is full of thoughts and ideas, but physically I am quite destroyed almost all of the time. If I walk the ten minute distance to town and take a coffee, a typical result for me would be 1-2 days of sleep afterwards. Finally, in October last year, I received a diagnosis of M.E. Read more…

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