Recently, I had a conversation with my niece about an acquaintance of hers putting out a statement questioning how dumping ice on your head can raise awareness or money for ALS. I’ll try to explain my point of view. Unless you have stood by and helplessly watched a loved one (or simply another human being) be ravaged by this relentless, vicious, impatient BEAST of a disease, your perspective will not be the same as mine. I hope that you never have to watch this disease take its toll. Did I mention that not all cases are the languishing type that progress over years, plateauing for periods before escalating to the next stage? You see, I stood by and watched as my mother went through invasive testing in the attempt to categorize her growing litany of symptoms. This mysterious malady had swooped in with a vengeance and there seemed to be no name for it. After extensive testing, we waited. I will never be able to forget the phone call my mother made to my office the day of her 61st birthday. She broke down as she explained that she had spoken with the doctor. She said she finally told them that she refused to wait until she was in the office and to tell her now. On that day (March 14th, 2002) as her 61st birthday present, my mother was diagnosed with ALS, or Lou Gehrigs disease. This disease would change her life, and ours, on a daily basis. My mothers disease was so rapid moving that she could no longer do things when I arrived home from work that she could easily do that morning. Her speech was affected in such a way that few of us could understand her after a time and then had to serve as translator for others. She went from working as a successful master cosmetologist to being bedridden within a few short months. Her often heard statement was Be careful what you pray for. ...I prayed that my mind would never go....I forgot to ask about the rest of me. When the doctors prescribed the treatment for ALS to her in the form of a pill, She was outraged at the cost it would be to anyone not in her situation insurance wise. In addition to the cost, it did nothing to abate ANYTHING. Everything from her speech to simply swallowing was out of her control. She was no longer able to eat solid foods, as her tongue had become what can only be termed as partially paralyzed. We reverted to hand signals until she was too weak to do that. Even propping up the hospital bed to an inclined position became a problem. Days before she passed away, we requested medication to make her comfortable. The doctor was confused as to why she needed it because she had been ambulatory on her last visit. When we explained the situation, he was speechless and prescribed the meds. Two days later, my mother died. It was July 16th of 2002...4 months after she was diagnosed. But that’s just my point of view While it seems frivolous and possibly even mocking, this is really no different from having a telethon where celebrities, musicians, artists, choirs, and children perform to bring in funds to help with research and a possible cure. ALS is distinct in its nature because even the treatment really offers no help whatsoever. The medication is outrageously expensive and only aids in certain cases. In the case of my mother, it was of no help. But let me back away from the cure side of things and approach the diagnosis portion. If these funds would help with developing an early diagnosis, or even isolate a gene, it would be leaps and bounds over what is available now. This is an ambushing disease. For someone to be able to anticipate and plan for their own care would, at the very least, help with family stress and the feeling of being a burden. For, you see, ALS does not affect the cognizance of the person afflicted. It is the ultimate betrayal by the body. Please excuse me if I do not agree with your standpoint that having a bit of fun while raising awareness is pointless. NO USE, you say?? Take a step back and realize that not far back in our history, the awareness of conditions such as breast cancer and even Autism were nearly zero. Because of our awareness of these things, we have been able to raise money doing things like Chili Cook-offs, Races, Walks, and even dunking booths to raise money to research and find a treatment that actually makes a difference. If the word awareness does not roll off your tongue in a comfortable way, why not simply say that we are Icing Our Way to a Cure. I, for one, am grateful to the fellow that began this viral sensation of the Ice Bucket Challenge! Do you realize that the last time that ALS made the mainstream media was Boston Red Sox pitcher Curt Schilling and his now famous Bloody Sock for ALS??[And Im not even a BoSox fan!] And before that was when Lou Gehrig himself gave his historical speech. Personally, I am thrilled that we can have fun while raising money for this vicious disease. If this offends your sensibilities and you feel the need to pass judgment on the individuals who are stepping up to humiliate themselves for a group of people that can no longer participate in their own awareness campaigns, then please feel free to find a better idea. Let me know when you find one that will raise in excess of $15,000,000 for research, all without spending a penny on marketing, entertainment, or operating costs. I will be the first to sign up!! For me, and the rest of my family, well dump Ice Buckets, Paint Buckets, and wear clown suits if it will get us closer to a cure. I liken it to the families that are relentless in finding a family members killer and bringing them to justice. I want this Maniacal Disease brought to justice. If you are unable to do something positive along with us, please do not spew vitriol at us while we are fighting this in the trenches. Thank you for your time.... Now hand me that ice bucket.
Posted on: Tue, 19 Aug 2014 02:24:44 +0000
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