Nick Auden died on Friday – or Saturday depending on the timezone you live in.
Regardless of where the arbitrary line that states what time of day it is for you, for Nick, 72 hours ago, time became finite.
HIS time ended, and everything that his supporters could do was done.
Not everything that could be done was achieved.
There were drugs being trialed that could have helped Nick.
Maybe given him some more time with his family.
Maybe even given him a whole life with his family.
They were denied to him on a minor technicality.
He died, perhaps as a result of not having access to said drugs.
I am not trying to tack on to some awful media grief train.
I am not placing this post up and out into the ether in the hope that I can gain a few more extra clicks and thus gain in some macabre popularity contest.
I am writing this because I have a vested interest in Nick’s story.
Nick Auden is my wife’s cousin.
Not a dim and distant cousin that is at best the relationship attached to the tenuous limbs of a sprawling family tree.
He was her first cousin, the son of her uncle.
They are of similar age.
They spent summer weekends together (along with the rest their siblings).
They lived life all those years ago, as children do. Free of trouble, and worry, and without the concept that things will ever be anything other than what they were in that moment in the Australian sun.
If you aren’t up with all the facts of the story you can go to www.savelockysdad.com to catch up.
But if you want to see something truly heart breaking, try this interview from just 23 days ago.
In particular I want you to listen to Amy, Nick’s wife.
“All very awful,” I hear you say, “but why are you inflicting this on us?”
Because, we failed.
I am not going to get into the whys and wherefores of the motivations of large pharmaceutical companies, or the intimate details of the disease and what the drugs meant to Nick, but to summarise again:
Nick had stage 4 melanoma. There were drugs that had already proved could be helpful to people with his exact disease. He was denied those drugs.
So what do I mean by “we failed”?
How dare I attack you when you were just trying to get through your daily posts, and cat videos, and pithy comments on pastel backgrounds that sum up what your friends think of themselves as people?**
We failed because not enough of us did enough.
Let me explain, and I’ll keep the statistics brief:
On my private facebook feed I have 379 friends.
Months ago there was a call out to get as many people as possible to sign a petition that would hopefully influence the Pharmaceutical companies Merck and Bristol-Myers Squibb to rethink their position on whether to supply Nick with the potentially lifesaving drug – PD-1.
I know that at any given time only 16% of my friends list see my posts, it is how facebook works now, so I paid to promote the post to as many on my list as possible, and I think it peaked at around 200 people.
Nine people shared the post.
That doesn’t seem like enough, not for a cause that is tangible, and this is why I think we failed.
Elsewhere on my facebook stream, it seemed that people were more than happy to share photos from like-bait sites that stated “It’s National Autism/ADHD awareness week. Please share this post to show that you support those struggling with the illness” or something along those lines. I don’t take any notice of them, because they are meaningless, and don’t actually achieve anything. At all.
To look at the difference in shares, I can count about forty instances of the Autism post in the last week alone – surprising given that it is debatable whether it IS actually autism week in the first place.
Am I saying that Autism and ADHD are not worthy of posting about?
What I am saying is that posts like those mentioned above don’t actually DO anything for awareness.
They only serve to make an individual feel like they have contributed to something good, and from a more sinister angle – create a situation that allow unscrupulous pages to gain more likes so that they can one day on-sell those pages for profit.
If the cash from these page sales went to funding Autism/ADHD initiatives, then that would be great.
The cash doesn’t go there though. It goes directly to the pocket of the likebait site.
I am seeing a similar apathetic response to another friend’s call out to help a kid, (whom he actually knows) receive treatment so that the kid can learn to walk. Nolan is a young boy with cerebral palsy, his parents have tried everything and now have come across a treatment that might enable their son to walk. There is a competition that, if Nolan gets enough votes, will give him $5000 toward that treatment.
The parents aren’t trying to get enough money to by a house and a luxury car, they just need help finding the cash for treatment is all. $5000 is a lot of treatment. A vote doesn’t cost the voter a cent.
And yet, the voting has stalled – because people fail. They fail to see the things that can actually be influenced in lieu of posting items that do nothing other than make the poster look like they are doing something.
So, people will skim over Nolan, for reasons I can’t fathom, but will bust their finger in an effort to place a starving child on their facebook feed, their mouse screaming under the percussive force of the clicking digit slamming down upon it. Because they are HELPING the starving kid by doing that?
Even when the starving kid photo has been lifted from a news article that is ten years old?
It is an appearance of caring. I find the whole situation sad and frustrating.
Enough, I’m done flogging the apathy horse.
Here is what I am suggesting.
You want to help an organisation?
You feel strongly about the cause that is being suggested on a facebook post?
You actually want to assist the organisations or individuals involved?
Search for the organisation’s facebook page.
Share the post directly from the organisations actual page.
Sharing from a friends post, only promotes the friend, and has much less chance of the organisation getting any meaningful traction from the post.
If you want to give props to the friend who posted it, add “Thanks for the heads up ” to your post.
Rest well that you have actually used social media to do something.
Never before have we been so connected, and yet so disconnected. I understand that people aren’t as passionate about this stuff as I am, and I make no apology for that if there are some that feel that I am being unfair.
I’m just asking you to do just a little more if you actually believe in a cause.
It won’t cost you a cent.
In a better facebook world this might have happened.
I put a call out for friends to petition for Nick Auden to get onto the drug trial.
Accepting a diminishing return due to emotional distancing with each step away I have limited this to 5 steps of connection.
50 shares from me.
20 shares from those people’s contacts
15 in the third step away.
8 (because there is significant distance from the subject now)
4 in the last step.
Just from me as a starting point, and I have neither a massive list, or a small one.
Nick’s petition site, with all of the media and all of the sharing… 514,000 – total.
We could have made a difference – but like-bait sites say it’s Autism week, apparently.
On a personal note:
To Amy and your little family, and the greater mass of Audens and ancillary relatives, I am so very very sorry for you all. Karma will send her own message, and so I will not presume to speak for her, but just know that we are thinking of you.
I’m also sorry that I didn’t get to meet Nick personally. He strikes me as a great man and father, and all around good guy.
Help out Nolan if you have the chance: http://sunsuperdreams.com.au/dreams/user/julianna-adcock
More on Nick’s fight: http://www.savelockysdad.com/
Think you’ve got a hoax on your hands? Check ANYTHING that you think might not be genuine:
Genuine Autism facebook sites:
**I’m not saying that facebook needs to be entirely worthy and deep. I mean, who doesn’t like a fluffy cat video or hilarious quote. I am suggesting that while facebook can be entertaining 97% of the time, for 3% of the time it can actually DO something good.
(see what I did there with the “97, 3”, thing? Hey. HEY?)