https://youtube/watch?v=h07OT8p8Oik Theres a good chance your Facebook feed is presently filled with people dumping buckets of ice water over their heads. The ice bucket challenge has gone viral across social media platforms and news broadcasts, but with that comes a certain amount of mockery. It disgusts me, had to put that out there plain and simply. The premise of the challenge is this: You post a video of yourself dumping ice water over your head, then you challenge other friends or family to do the same within 24 hours. If they dont, they have to donate money to fight ALS, the neurodegenerative disease known as Lou Gehrigs disease. So, how does pouring ice water on your head help ALS? How many of these people actually even know what ALS is? You know what, probably very few, but theres a temptation to figure out what it is and many do their research. Even if they dont, they are spreading the word to others who may do their part and donate or actually look more into what ALS is, so let it go viral. I am ALL FOR helping people out. Thats exactly what this movement is about, helping other people, in fact, several people whom we dont know or may never know. But I do hope people unfamiliar with ALS take the time to learn more about the disease. You see, why this ice bucket challenge is so awesome is that it is getting attention. So what? Cancer gets attention, non-profit charities get attention and so forth. But, ALS doesnt. In fact, ALS has been nicknamed the Orphan Disease, in the past because it has been abandoned, hush-hush and not discussed. The disease only affects 2 in 100,000 when cancer affects 14,000,000+ a year and counting. So who should we pay attention to? Where is our risk more likely to occur, within in cancer right? I am NOT saying let go of cancer and get over it, your chances are high so move on. There are SEVERAL nonprofits out there and diseases that are fighting for a cure. Lets embrace them all and bring light to as many as we can. We have 24 hours in the day, we have time to raise awareness for SEVERAL. That said, while the monetary donations are awesome for ALS, the fact that several are NOT donating and just doing the ice bucket challenge is worthy enough and favorable as it means people are TALKING ABOUT ALS. Just talking about it does wonders. Anytime we can get people involved in something is a good thing. The ice bucket challenge is easy. I just have to be cold for a second and get my hair wet, alright I can do that! Kids can do it, families can do it and it can go viral in an instant through social media platforms that make it easy to upload a video and nominate family and friends. To learn more about the disease and its affect, please watch the YOUTUBE video below or read more on alsa.org A story published a year ago on ALS website regarding one mans journey with ALS: Even before he knew he was gay, Ken Jacobsen Jr. had a thing for muscle-bound men in tights, for superheroes, and Batman in particular. Maybe the colorful BIFF! and POW! of comic book justice taught him something about bravery, but it didnt warn him what a bummer it would be when bravery actually had to be summoned. He was diagnosed last January with amyotrophic lateral sclerosis, or Lou Gehrigs disease, and guaranteed a short life span and a rapid deterioration of motor skills. His ability to speak was the first thing to go. For a man who lived to gab, it seemed a villainous trick. Before long the disease stole his once unstoppable gait -- friends say he would routinely crisscross the city on foot, walking from his North Side apartment to He walked everywhere, said Pam Rempala, the wife of Kennys cousin and one of three caretakers he calls his angels. A lot of people would joke that he had legs of steel. Now he cant move those legs. He can control his left arm enough to scrawl words in marker on a small dry-erase board. He cant stand or chew. None of this has surprised him. Immediately after the diagnosis, he immersed himself in literature on the disease. He wanted to know what was coming, and he wanted the people around him to know as well. Within two months of learning his fate, Kenny had prepared a living will and given the friends and family members who would be caring for him books filled with specific instructions, riddled with his trademark wit. He wrote that once he could no longer eat solid foods, Liquids should be thick like a strawberry milkshake, [strawberry] Ensure, or whole milk. Take note too that I emphasized strawberry, something I love! His three angels -- and a second cousin he refers to as Bosley, thus rounding out the Charlies Angels theme -- accompanied him on field trips to funeral homes so he could plan out the specific details of his memorial service. In his instructions he wrote: I want the service to be of celebration not of sadness. I want people to come as themselves, as I have known them, and not something they feel is necessarily appropriate in the attire to attend a funeral. I want folks to bring balloons and markers; and if they dont know what to do with them then they should write a note on the balloon and let it go; and Ill be sure to get it. He didnt even leave the choice of pastor to chance: As I have to lay there listening to all this I feel I get to pick the reverend. For that reverend, Kenny wrote a six-page life story, with an accompanying list of accomplishments, a legacy that at least those who knew him would be reminded of. A stint as a ward precinct captain; founder of a gay and lesbian association on the Northwest Side; president of a gay mens leather club. Stories of sweet potato dishes at Thanksgiving dinners and a one-time romance that led him to Florida then back to Chicago with nothing more than a parting gift of tacky, red flatware. Kenny showed everyone around him how a life is condensed, everything superfluous stripped away until there is only the bare essence. I think its awe-inspiring, said Maria Conde, another of Kennys angels and a friend of nearly 30 years. From day one, its like everything is so organized, all cut and dry. This is what I need to do, there it is, all set. Hes just been so level-headed. And here he is, hes good-natured and happy to be with people. In an e-mail, the easiest way for Kenny to communicate, he succinctly explained his approach: I try and let family and friends know Im OK; as I really am. As his life winds down, Kenny spends time at his computer, the one place where he still has a voice, typing notes to friends, corresponding with others who share his disease, and even organizing a team for an upcoming benefit walk for people with Lou Gehrigs disease. The team is called Kennys Heroes, and theyll wear a logo he drew featuring an array of superheroes, caped residents of a fertile mind. The instructions to his angels detail his wishes once he can no longer write or type: I will be aware always of what you and others are doing. So never allow anyone to think they cant still communicate with me even in the most extreme circumstances. I will want that communication, even if it appears one-sided. He concludes: And hell, have someone pick up some Batman comic books to read and show me during those times. Apparently even the brave need heroes. Even the ones that are heroes themselves.
Posted on: Thu, 21 Aug 2014 21:35:02 +0000
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