Tuesday, May 5, 2009

Politics as usual...but we can change it...

My advocate hat is on. It is one of those huge sombreros with sequins and I've hung about a thousand lights on it. Its lit up like a huge doggone Christmas tree on Cinco de Mayo so get ready people...next week is National ALS advocacy week and I'm advocatin'

You didn't ask for it, but here is my simplistic view of politics:

Society to Politician: "Sir, do you care about my cause?"

Politician to Society: “That depends, - will it get me (re) elected?”

Society either: “Yes, absolutely” or “If you don’t do anything about it, anyone that runs against you will likely get elected because we will hate you for not caring or for acting unresponsive.”

Politician: (conjures picture of George W Bush looking out the window of Air Force One a day or two after Katrina hit.) “Yes, I care deeply about your issue, how can I help you.”

In my opinion, today the Media still reflects the social consciousness of our society, and without their pressure, we will most likely fail to ever get the attention we need for politicians to care about ALS. So, how do we get the media aware of this scourge that hides among us and strikes out at those we love without warning or prejudice?

If they are so willing to jump on board with an overblown "flu pandemic" that is going to lay a few people up for a couple of weeks then I have hope that they might actually soon acknowledge ALS as a major problem. Why?

Because my wife has been laid up for TWO YEARS along with thousands of other people just like her living in this great land of ours. She has not taken a step on her own for fourteen months. She can't lift a fork to eat, she can't hug her kids, she can't do a thousand things we take for granted every day. There are THOUSANDS of people like her. Where is the press for them?

Luckily for us, there is a growing ability for groups like PALS (People with ALS) and CALS (Caregivers for People with ALS) to have a voice and the tool we use is the Internet. The Web, Social Media, Email, Discussion Groups. All of these things give us power that we have not had in the history of the printed or published word. It's not that President Obama is going to give a bubble fart about what "some blogger" like me says, but if enough people start talking about this, the press will pick up on it and make it into a story that he and the rest of the politicians can not ignore any longer.

When is the last time you saw a video of some jackass doing something stupid on Youtube re-run on your ten o-clock news? That is the power of social media I'm talking about. It's called "going viral." I live in this world of Internet media. Some of my clients would LOVE for some positive story about their company to go viral. Unfortunately, the ones that do go viral usually are the negative ones. Did you see the "Domino's Debacle" last week? That is a perfect example of social media going viral. Did those idiots working there have any idea that their dumb-ass video would cause as much harm as it did? Probably not, but that didn't stop them from making a most idiotic mistake of posting it in a public forum where people were disgusted enough to bring it up to the right reporter that "broke" the story.

The trick is that we have to spread the word amongst ourselves. Generally first to people to are directly affected, then to people that are peripherally affected, then to people that are only affected by the notion that spreading the word is good in some way and can help either for the sake of helping or for their own sake.

I've said it before in this blog that generally, people don't do anything really "active" or controversial unless they fear a consequence or have personal motivation. That motivation can be positive, such as love, righteousness or even patriotism. It can also be negative like hate, disdain, disgust or even greed, spite or any of the other "seven deadly sins."

I don't know what I can get YOU to do to promote the government to contribute more than a paltry pathetic sum to ALS research for a cure. If you are reading this, you probably already have done something. If not let me give you a little motivation:

1) H lived a very healthy lifestyle.
2) She is kind.
3) She is caring.
4) She does not have any family history of this.
5) She has barely ever even been sick.
6) She did nothing to deserve or contract this illness.

She woke up one day and couldn't buckle our daughters buckle on her backpack. A few months later, she was given a 2 or 3 years to live. No treatment options. No "Let's try this."

Nothing other than, "well we wish we could help, and when you need a feeding tube or need help breathing, let us know and we'll get you connected."

She was just like any healthy 38 year old woman, only better than most. If she can get it, so can you. So can I. So can someone you know, love or care about.

So please. Next week is National ALS advocacy week. Please do something about it. If you have a contact in the press, send them this blog. Contact your local ALS Association or Muscular Dystrophy Association. If you know a politician, send them this blog. Ask them to read my writings since January or the Hawaii blog or the Mayo blog. Surely some of those words will strike a chord with someone that will care.

If not for her sake, or my sake or the sake of our girls, do it for your own sake because this thing is not going away unless we all get worried about it enough to get those with the money to solve it to care. One of my ALS advocate buddies recently told me "ALS is not an incurable disease, it is an UNDERFUNDED disease." I would add to that it is a disease that most people don't really know about, and therefore don't really care about. 2 years and one month ago, I really had almost no idea what ALS was, and I consider myself a fairly well informed human being. You can't care about what you don't know about.

If someone copies and pastes this post into an email, here is a link to the first post of my blog:
http://alschronicle.blogspot.com/2009_01_04_archive.html. Go back in the archive and read it. I hope it not only shocks you, but also warms your heart. I think it will. If you do, you will catch up on what ALS is and what it does to people like my lovely wife.

The audience for this blog has reached people in 27 countries now. I want it to reach a million people in each of those countries, because if it does, I bet it will reach a lot more than that. ALS does not stop at our border. People are dying from it all over the world. People that are dying from it are getting taken advantage of every day by opportunists that see desperation as a quick and easy cash-flow lever, like a slot machine that hits triple sevens every time.

Thanks for indulging my rant tonight. Please don't take it personally, I'm just a little madder than usual. Oh and by the way, I HATE chain letters. If you don't forward this to ten people, NOTHING bad is going to happen to you. You just might feel a little better about helping us "desperadoes" out, and that is a good thing.


  1. You said this more eloquently than I could ever have managed. You speak startling truth. Courage comes when we are the minority and if that makes us "Desperado's"...then so be it. The world has a fight on their hands-because we're on the warpath to a cure.

  2. I'm sending this to my contacts in the press. I was a newspaper reporter for a time. I don't think you'll mind that I called you a friend.

    Startling and sad facts..

    I am so sorry for your loss.
    Again, thank you for your blog.