ALS: From Ice Buckets to Cold Reality * * * This summer was the Summer of the ALS Ice Bucket Challenge. Inspiring, really, to show how social media can raise awareness and millions of dollars for ALS - a truly horrible diagnosis for anyone. Yet we know exactly what can happen. As a society, we get very excited, even inspired, and that flash of momentum lasts for a week, perhaps a month. Then we all move on with our lives. I had a moment today that I feel compelled to share. Probably about four days a week, maybe more, I stop into a Hy-Vee Gas station near our house. Over time, you become somewhat familiar with the people who work there. How bout your Royals? one worker will often ask, especially more of late. Hes a Yankees fan. I have to rub it in a little bit this season. Any big stories today, Chris? Ill sometimes hear. Is that a refill, Chris? I will hear this quite often for my 70-cent purchase. (My battle with Diet Dew is unresolved - managed but unresolved - and I know this. Thats another post for another day.) You dont really *know* the people who say hello, how are you?, take your dollar bill and give you your 30 cents back. Yet that familiarity is there, from the college or high school kids on their first job - who are being really polite to customers because theyre either just authentically friendly or simply dont know any better - to those my age to those edging closer to retirement. Today, by the cash register, I saw a flower and a picture of a woman I remembered but I knew I had not seen behind the counter in some time. (For privacy, I wont name her here.) Yet, this woman, passed away at age 49. 1964-2014 with a picture of her smiling and a small box asking for donations. For ALS research. Did she just pass away? I asked the person as I handed the dollar over. Over the weekend. I remembered that face, how she would ask how I was doing and I would do the same when I would stop in. I had no idea she was facing a death sentence because people dont announce news like this. I took the step to actually look up her obituary and I discovered a woman taken far too soon. Not only at 49 years of age but with a family. Married, four boys who are now young men, a grandchild. These years are supposed to be the sweetest decades, where the hard time of parenting kids who truly need an active parent gives way to, what I call, consultant parenting, where you make suggestions - firm at times - and work on course-correction, on occasion, with your grown children. Only 49. She was diagnosed with ALS three years ago. I thought back to the years I would go into the Hy-Vee, plunk down my 70 cents. Okay, $1.20 if you add the Fudge Round or the Star Crunch - I have my vices. I would often see this woman and, just today, I thought about the quiet dignity she always exuded in the months and years of showing up to work knowing that her time was ending far sooner than it should have. As I drove away to finish off a to-do list on my day off, I kept pondering. I cover enough tragedy, as a news reporter, and I wanted to think... what can I do? How can I use my skills and the opportunity, as someone with a somewhat visible job, to tell people about this awful, horrific disease? Ive been blessed to have never been directly affected by ALS. When my grandmother passed last October at age 95, I talked about how blessed my family generally has been. We havent had to bury a child or leave our children without a parent because of a cancer diagnosis or a terminal disease. We are blessed to usually make it into our eighties, at least, having lived a life in full. This woman didnt get to have that. All because of a disease that so many of us have learned about this summer but still may not really understand. Thats what I want to do. Far too often, an ALS diagnosis leads a person to try and battle through as the mind stays sharp but the body begins to fail. Then they disappear. Id like to air a story on ALS. Not on the Ice Bucket Challenges but, on what I call, the cold reality. If you are diagnosed with ALS and are starting to feel the physical symptoms, I want to hear from you. If you have a family member or a close friend who is diagnosed with ALS and think they might be open to telling their story, ask them and feel reach to me. Or you can as well. All I ask is that youre within our Eastern Iowa viewing area and open to an on-camera interview. Wed probably take up an hour of your time -- a little bit to chat and a little more to gather video of what you go through. My promise to you: I wont exploit you in this story -- I would envision it like a mini-documentary but one that shows the awful reality of this disease. The struggles to complete the physical tasks that used to be so easy and effortless. Ill tell your story but with your dignity intact as you fight a disease that does its level best to take that away. Id like to think my reporting reputation here on Facebook could give me the benefit of the doubt, should someone here in what I lovingly call the Posse of 16,278 want to reach me. This is how I can help contribute... and, perhaps, how you can as well. To show the reality of what ALS does. To reach me: Either Facebook message me here. Or... my email is: chris.earl@kcrg. Thank you as always for reading this -- and for following me. - Chris
Posted on: Tue, 07 Oct 2014 02:41:41 +0000
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