Tuesday, August 19, 2014

Things That Piss Me Off Tuesday - the there's a lot pissing me off this week edition

Quick, before I start typing, everyone turn around counterclockwise and chant Beetlejuice. Or something. I got the blue screen of death yesterday and though my computer appears to be working at the moment, I have no idea if it will continue to do so. Let's just hope.

Technology and I don't get along. Our disaffection for one another is not anything new, mind you, but it is pretty much a constant source of frustration in my life. There's a lot to cover this week, so I'll just get right to it. I am covering Ferguson today for Lefty Pop, please make sure to check out that piece. I'm analyzing the legitimacy of police authority and how it's all gone terribly wrong there. 

The ALS Challenge and all the drama about it
I'm going to do this quick and dirty style, partially because I have a lot to say, and partially because I have a sneaking suspicion that this is just one of those things that people are destined to argue about. Ready?

Wait, first, I have to do some education because that's how I roll. ALS stands for Amyotrophic Lateral Sclerosis, a degenerative nerve disease. It affects the brain, spinal cord and all nerves in the body. It eventually leads to paralysis and death. There is no cure. Life expectancy from the time of diagnosis is usually 2-5 years. About 5,000 people will be diagnosed with ALS this year in the United States.

  • People are more likely to donate to charity if they are getting something in return. That something doesn't necessarily have to be anything tangible like a coffee mug or license plate frame...it can be likes on Facebook. Should people just donate and skip the stunt? Maybe. Maybe not. Those who say it's a waste of water, time, money, whatever...clearly haven't ever attended a charity event like a golf tournament or a gala. Even the super wealthy give much more if they get something in return. This really isn't that different in some respects.
  • This movement has done wonders to raise awareness for ALS, a horrible disease that has taken people from those I love. Awareness is never a bad thing, particularly in the world of rare diseases.
  • This movement has raised a boatload of money for ALS research, which is huge. There aren't many treatments at all, there is no cure and more research is needed.
  • Whoever thought this up was basically a fundraising genius, and I can promise you that the rare disease community in particular is envious, trying to figure out something to do like this that can reach as many people. I'd give anything for Type 1 Diabetes to get this kind of visibility.
  • People are wasting water doing it, yes....but water gets wasted in countless other ways every single day in this country and most people don't complain about it. If you're gonna dump some on your head, stand on the grass. Two birds, one stone. Boom. If you're gonna whine about water in this case, go protest the water usage by golf courses in Vegas first. Or swimming pool owners. Or long shower takers. Or chronic car washers. Or whatever.
  • It's entirely possible that many of those doing it aren't actually donating to the cause, but still believe that dumping ice water on their heads is a good cause. If it increases awareness, it is. Honest. Those who can should donate as well, but the act of spreading information about a disease like this is a good thing in and of itself.
  • The whole calling people out thing is a little bit annoying for a few reasons. First, not everyone can donate. Second, not everyone can or should be dumping ice water on their heads. Third, plenty of people have devoted their extra money to charities already, have another cause close to their hearts, and that is okay. What isn't cool is publicly shaming those who don't dump water on their heads or donate. I'm sure they have their reasons, so let's just leave it at that, okay?
It's super hard to get mad at this. 

If you don't need a cold shower of your own after that, I'm not sure we can still be friends. Just throw some ice cubes on top and give a few bucks to research and we'll call it good. By the way, you are welcome.

Let's not get distracted.
It was revealed late last week that Robin Williams was in the early stages of Parkinson's disease, speaking of rare diseases. Parkinson's is another progressive neurological disease, this one affecting movement. Tremors are the common visible symptom, but it also causes stiffness and difficulty in movement. It can be treated with medication to reduce symptoms. There is no cure. It is related to, exacerbates and may cause significant troubles in other areas, ranging from sleep deprivation to depression and more.

The medications used to treat the symptoms of Parkinson's all bring their own sets of side effects as well, some of which can trigger or worsen depression.

What some are afraid of happening in this case is that this revelation that Williams stuggled with this disease will become the fall guy for his depression and suicide, that it will explain away what happened that night. Though it most likely was a factor, it is but one factor involved here.

Williams' struggles with mental illness predate his struggles with Parkinson's. Parkinson's may have absolutely worsened his personal situation, without doubt, but it is not the simply packaged answer that many are looking for it to be.

Let's not get distracted here. Let's not for one moment believe that because he had something else in addition that we can place less importance on the conversations that need to happen about mental health.

Let's keep talking about the hard stuff. Please.

Diabetes is a fucker
Oops, I let the swears out. My bad.

Sorry. I just spent all day yesterday dealing with it. I thought I had everything together for school to begin, not realizing that I neglected to pick up an extra meter to leave at school. Nothing like a huge thing to overlook on the first day of school, right??? Now that Little Boy is in school full time, he needs to be tested at school...which means I have a bunch of hoops to jump through, papers to file, letters to write, conversations to have.

And, ultimately, it means that I have to place my trust in the hands of other people to manage this condition in a newly six year old boy.

Terrifying isn't really sufficient a word to describe it all.

Fortunately, none of this seems to phase the above mentioned newly six year old boy.

There is something else that I feel compelled to rant about regarding diabetes though, and it's the story in the news about the drive in theater owner who kicked a teenager with Type 1 diabetes out for bringing in food.

The kicker??? The owner of the drive in is a pediatrician.

I so wish I was kidding.

Sure, I get the profit motive here and the right of a business owner to refuse to serve anyone and all that jazz. I get that he really really really wants to sell his overpriced popcorn and candy to the captive audience. I get it.

But seriously??? If anyone should know better than to boot a T1 kid, it's a pediatrician....except for the harsh reality that those of us who deal with this every day live that almost no one (even doctors) seems to understand.

That reality?

No one understands. Period.

Unless you have to take a mental inventory every single time you leave your house to make sure that you have a meter and strips and lancets and insulin and fast acting carbs, not just out of habit, but because YOU NEED THEM TO SURVIVE, you just don't get it. Even doctors don't get it unless they live it.

Frankly, I'm a little surprised that he did it, and he may have to deal with legal consequences as a result. There is absolutely an argument to be made here that diabetics should be permitted to bring whatever they might need with them wherever they go, regardless of whether there is a snack bar or not. This isn't about a kid trying to pull a fast one on a theater owner, this is about survival.

Get the fuck over yourself, Dr. Theater Owner. I hope his family comes after you for an ADA violation.


  1. I hope the theater owner is ashamed!!! I don't go anywhere without food. Period. My life is more important than rules against food. Everyone's life is.

  2. A similar thing happened to my friend who is the mom of a T1 teen. She wasn't allowed to bring food and beverages into the neighborhood pool area. Ridiculous.


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