I have genuinely mixed feelings about this. One of the most frustrating things about ALS is how little its talked about and how rarely we hear our own stories represented in the media. We dont generally have star-studded celebrity fundraising campaigns. So theres a part of me that is really excited about this ice bucket viral video challenge because like oh my God, finally, people are talking about ALS. Except . . . they arent talking about ALS. Justin Timberlake says nothing about ALS in this video. The other celebrities who Ive seen do this say nothing about ALS in their videos. What does a person who sees this video learn about ALS? I wish if they were going to step up and do it - and Im glad they are doing SOMETHING, dont get me wrong - that they also had to learn one fact about the disease itself and share it in the video. Here are a couple of facts for you. #1. ALS is a debilitating neuromuscular disorder that attacks the motor neurons of your body that allow you to move and function. #2. It does not attack your brain. Very likely you will stay lucid and aware, perfectly yourself, while trapped in a body that is slowly shutting down. #3. Someone is diagnosed with ALS every 90 minutes. #4. Most people are diagnosed between age 40 and 70 and the life expectancy is two to five years, which means you will look at most of these people and you will think, This is unacceptable, you are way too young to die. #5. My mother was an indefatigable powerhouse of a woman with more personality than twelve people put together. By the time she died she had to be fed with a feeding tube and helped to go to the bathroom. #6. For some reason nobody quite understands, military veterans are 60% more likely to be diagnosed with ALS. #7. Care for ALS patients involves basically the three most expensive kinds of medical equipment a person can require - mobility equipment, communication technology, and personal caregiving. It can cost over $200,000+ a year and most of it wont be covered by Medicaid, Medicare or health insurance. #8. ALS is painful and ugly and awful to watch. #9. I miss my mother. So there, Justin Timberlake, Elizabeth Banks, Lance Bass, Martha Stewart, and Matt Lauer. Thats my #ALSIceBucketChallenge for you. If youre going to talk about it, TALK ABOUT IT.
Posted on: Tue, 12 Aug 2014 18:22:21 +0000
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