Category Archives: In Search of Truth

Why My Family Did the #IceBucketChallenge; or, Dear Leslie, this one’s for you.

My sister Leslie is my favorite of my older sisters. Sorry to the rest of you, but 1)she’s probably the only one who would’ve read this web blog anyway so you won’t even know I’ve said it, and 2)c’mon. She’s your favorite too.

My earliest memory of Leslie was when I turned 7. I had just been part of a merger–meaning my dad had married her mom. I had 6 older siblings already, and then became “#11 of 12” in another family. It was cool, because Rachel, my actual favorite sister (but not older, so there’s no contradiction there), was my best friend so it was kinda an extended sleepover, at first.  Anyway, that’s another story.  My 7th birthday, I got a package! From California! It was a red Minnie Mouse watch from my sister Leslie.

Leslie lived far away, in California–so when she came for Thanksgiving or other visits, it was a HUGE deal for me. Leslie taught me to play poker (don’t pick up the cards until they’re all dealt. They’ll cut your hand off!). She laughed at my jokes when everyone else just rolled their eyes or told me I was inappropriate. She called sometimes when I was a teenager, just to talk to me (don’t let any boy treat you like anything less than a princess, no matter how cute he is). When all the sisters got together to go shopping and elected me to watch all their kids instead of going, Leslie was the one who thought to buy me a shirt. It was black and white striped and I wore it until my midriff hung out the bottom and it was mercifully disappeared. I never felt like the goober of the family around her. Leslie got me.

Leslie was an artist, a sculptor, an interior designer. She was so creative and talented. She was so beautiful. She was full of life, spunk, sarcastic wit, fire.  This is a picture of her, popping up out of the sunroof of the limo–this was classic Leslie:img086
So what does all this have to do with the Ice Bucket Challenge? Well, my favorite older sister was diagnosed with Amyotrophic Lateral sclerosis. ALS, or Lou Gehrig’s disease. It started with her having problems with her hands. My sister, the artist, couldn’t use her hands anymore. It progressed so quickly. We kept hearing things–look at Stephen Hawking, he’s been around for decades; it might stop progressing at some point; it could be quick; it just depends…..

I started calling Leslie to talk to her, to hear her voice, because she was losing her ability to talk, too.  Oooh, how it broke my heart to hear the slur, and the frustration because her mouth, her vocal chords, couldn’t keep up with her perfectly untouched, amazing brain. I wished I could record everything, because I knew it was going to end soon.

I had the opportunity to travel to California when I could take time off from work, and help out when her sweet husband couldn’t be there. Those times were bittersweet. I remember hanging out on the couch, watching HGTV with my sister, just having conversations. I still hear her voice from time to time, berating me gently for not following my dreams: “Don’t wait! If there’s something you love, that you want to do, don’t wait! You never know what is going to happen, you have to just do it now. Don’t wait.”  I never wanted to leave, but I also could just feel the hopelessness of knowing that no matter how long it took for Leslie’s body to kill her, she would be trapped in there, perfectly sound of mind, with no ability to speak, move, swallow–yet strangely she was still able to feel pain. I would cry myself to sleep every night while I was there, and pray for the strength to be positive and to be as cool for my sister as she was for me when I had needed her.  I hope I was. I really tried, even though there was often nothing I could do but…..well sometimes there was just nothing I could do.  img087

My sister passed away, leaving her awesome and wonderful husband, and my niece Andrea (who is pretty freaking amazing too).

When I talked about Leslie, I would say she died from ALS, and people just shook their heads. I could say, “you know, Lou Gehrig’s disease” and then they might get it. Usually not. When Leslie was sick, there was like, one or two experimental drugs she could try, that might help, might slow things down. They didn’t. There isn’t a lot of demand for research for cures or treatments when people don’t even know what ALS is.  Usually fundraising for ALS gets lumped in with Multiple Sclerosis fundraisers.

Along comes the Ice Bucket Challenge. The rules are simple. You have 24 hours to dump a bucket of ice water over your head and donate 10 bucks to ALS research, or you donate $100 to ALS research instead. You take a video of your ridiculous reaction to being freezing cold and wet, and challenge others. It started with one man, and then his friends, then it spread through the pro athlete community, then celebrities and then EVERYWHERE.  It’s gotten to the point where people are bothered. There’s a backlash. People are angry because it wastes water.  Or because they have info that the ALS Association doesn’t spend the money it gets on research, just salaries for officials. Or that ALS cure research means stem-cell research, which of course means that if you support it, you want babies aborted.  All, as my Brit friends would say (or Doctor Who), bollocks.  Here’s my thought.  This challenge is spreading because people can do something good, and have fun, and challenge other people and watch their videos. Enough evil and sadness and negativity is spreading, and people are super-psyched to pass on all of THOSE Facebook posts. Why can’t we do this and just spread the goodwill, ya know?

There is so much more….. every time I see someone I know, or don’t know, or celebri-know, dump a bucket of water over their head, and then freak out, and then laugh, I picture my sister laughing along with me. I know that as a family member  of someone who died from ALS, I feel the comfort of knowing that other people are learning just what our family, and my sister went through. Then there’s the money–the kind of money being thrown at this disease could very well fund at least some treatment, if not a cure.

Project ALS is an organization that funds and facilitates research for a cure for ALS. They have a 4-star, 91.4 percent rating on CharityNavigator.org. Here’s a link for them:  www.projectals.org . There’s the ALS Therapy Development Institute, also 4 stars and 97.31 approval rating through Charity Navigator. Their link is www.als.net.  (For the record, the ALS Association also has a 4-star, 90.73 percent rating through that website).

I’d love for you to go watch this video on YouTube. It’s Anthony Carbajal, doing a rather burlesque Ice Bucket Challenge. If you don’t want to see a man in a bikini top and tight shorts, washing his car (sometimes with his butt), then fast-forward to about 1:44 into it. What I REALLY want you to see is his explanation of what the Ice Bucket Challenge means to him.

Then, go to http://www.bostern.com/blog/2014/08/15/what-an-als-family-really-thinks-about-the-ice-bucket-challenge/  and read.

If you need some fun, you can watch the Williams family Ice Bucket Challenge. There are cute kids and stuff, too.  Then maybe YOU can jump on this bandwagon. It’s a worthy cause, I promise you.

But for me, it’s personal. This one’s for you, Leslie (I still get choked up when I see Design on a Dime).

 

The Rope Across the Road

I saw a great video tonight…. and it has me thinking…. First, here’s the video.  It’s funny. Watch……

Pretty silly, huh…  all those cars, stopping or slowing down, thinking that there was some obstacle ahead of them. All of this based on the actions of two guys standing on the sides of the street.

Time for the deep thoughts.  How often do WE do this?  We can play all of the roles in this video.

First, how often do we let what other people are doing/saying determine our focus or our actions for the moment/day/week/year/lifetime? The controversy of the moment becomes our focus. I see it happen all the time with things like Facebook and the internet researchers we call the “news”–for example, HOW many people jumped on the “Boycott KFC” bandwagon when we all thought that they had kicked out a poor little girl with horrendous dog-mauling disfiguration. How many of us passed that news along, or shared it on Facebook, only to find out that it was a complete hoax? I know that I have been swept up in controversies from time to time, when my focus would have been better served in just driving along, doing what I need to do for my happiness and that of my family.

I’m not advocating isolationism here–just that sometimes, the only reason WE get caught up in the clamor of the world, is because it is clamoring so loudly–not because we would give it any merit if we were to sit and analyze it, but because, I don’t know, if the guys LOOK like they are pulling a rope across the road, there must be a rope, right?

I know that I sometimes doubt what I am doing, even when I’ve carefully thought about it, analyzed it, prayed about it–just because someone expresses doubt or thinks I’m wrong. I might get defensive because someone has an opinion that I see as an attack on my methods. I see ropes across the road where there are none.

Secondly, how often are WE the rope-pullers? Are we causing people to stop and question themselves, their paths, their actions, when in reality, they don’t need to? This happens a lot with friends and family, or people at church–they are tooling along, doing their thing, and we suddenly see a problem with it. So we point it out. Enough people start pulling that rope, as it were, and now our “driver” is stopping, or slowing, thinking that there must be some issue, simply because WE see one. Again, I’m not saying you shouldn’t provide guidance or advice. To keep with the symbolism, of course you want to keep drivers from falling into a ginormous sinkhole just ahead…. but just be careful to not be the guy pulling the invisible ropes.

The one I want to be? The guy on the bike at the end, that doesn’t know what those guys are doing, but has places to be and things to do, so he just avoids the whole mess all together, without missing a beat.

In Search of Truth

Someone I don’t know, wandering a labyrinth. Searching for truth is often like a labyrinth, but one that is made from multiple pathways, turning in on themselves and sometimes suddenly disappearing and reappearing. Like the labyrinth in Harry Potter and the Goblet of Fire.

“Energy drinks like Red Bull contain an ingredient extracted from bull semen!” reads the headline on Facebook. After the 973rd Facebook link to a story I knew was false, I stopped replying with the www.snopes.com debunking link. People will believe what they want to. It’s called “confirmation bias” and it plagues each of us. Simply put, if you suffer from confirmation bias (big reveal: we all do, to some extent), then you will tend to place more emphasis on facts, statistics, stories, etc. that support your point of view. So, for the Red Bull story, those who want to believe that companies have no problem putting weird stuff in our food (worms in McDonald’s food, bubble gum made of spiders) will tend to believe that energy drink companies are out there getting “donations” from the bulls of the world and putting it in their products. My own personal view is that if it sounds really weird, gross, or otherwise “out there,” it probably is. So I tend to fact check all that stuff.

Weird Facebook stories are one thing, but what if we raise the stakes? Here are some other issues of the day. How many people are still arguing them, and what are the chances either side will change their mind? What’s the confirmation bias with regards to:

Obama’s birth certificate (either you trust that he’s been properly vetted, or you believe that somehow he shanghaied the system)

Climate Change (we are melting the world, or it’s all junk science aimed at government control of its citizens)

Bundy Ranch Standoff (Bundy is a nutjob, or the federal government is all about oppressing hard working citizens to give gains to a few elites).

That last one is the one I am having the hardest time with currently. The Bundy Ranch standoff started many years ago, and is essentially a dispute between Clive Bundy, a rancher, and the federal government, specifically the Bureau of Land Management. Recently, the feds confiscated cattle and moved to physically remove Mr. Bundy and his operation from the disputed area. Bundy refused to go. Contingencies of like-minded citizens responded to block the Bureau from carrying out their directive, and the feds backed down rather than escalate the armed confrontation. Things have gone in different directions from there, with different spins on every new development.

Depending on which side you talk to, both have extremely compelling evidence of the righteousness of their cause. Where does the truth lie? Where do we find the truth online—everyone claims to have the “real story” but there is so much to sift through to find little nuggets of facts.

Snopes.com, (insert other fact check sites here), all try to provide clarity to some of the issues, and in many cases (such as urban legends), we can trust what they say. Can we trust Snopes? Some say we cannot—but it goes back to the confirmation bias—if Snopes verifies something we believe, then it’s true. If they don’t, then they are commie fascists liars with their pants on fire.

With that in mind, I am going to dedicate part of my website to the search for truth. I want to research different sides to some of these issues—some silly, some serious—and try and provide a little clarity on where the truth lies (hint: it’s usually somewhere in the middle).

I have my own beliefs, and my own “confirmation bias” of course, being human and all, but for the sake of the discussion, I will do my best to lay all of that aside as I try to research and be as unbiased as possible.

What issues would you like me to research? Share them in the comments and I will do my best.