{"id":5440,"date":"2014-08-21T20:53:03","date_gmt":"2014-08-21T20:53:03","guid":{"rendered":"http:\/\/www.firechildren.net\/lightfire\/iamthefirechild\/2014\/08\/21\/on-the-ice-bucket-challenge\/"},"modified":"2014-08-21T20:53:03","modified_gmt":"2014-08-21T20:53:03","slug":"on-the-ice-bucket-challenge","status":"publish","type":"post","link":"http:\/\/www.firechildren.net\/lightfire\/iamthefirechild\/2014\/08\/21\/on-the-ice-bucket-challenge\/","title":{"rendered":"on the ice bucket challenge"},"content":{"rendered":"

on the ice bucket challenge<\/a><\/p>\n

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hedgehog-goulash7<\/a>:<\/p>\n

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silvergryphon<\/a>:<\/p>\n

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queenofcorgis<\/a>:<\/p>\n

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nofunphillips<\/a>:<\/p>\n

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my dad died from ALS when i was 3 years old. he was 36. my mom was 33. that was 30 years ago. now i\u2019m the same age my mom was when my dad died. and there is still no cure for ALS.\u00a0<\/p>\n

this is what happens when you have ALS: your muscles slowly stop working, one part at a time. for my dad, first he couldn\u2019t use one of his hands. then his arm. then the other arm. then he couldn\u2019t walk. then he couldn\u2019t stand up. then he couldn\u2019t talk. then he couldn\u2019t swallow. then he couldn\u2019t breathe. then he was dead.<\/p>\n

this all took about two years. he was diagnosed when i was about one year old. the only memories i have about my dad are of an inert body in a wheelchair or lying in a bed with a bunch of tubes stuck into it. as i was learning to talk, he was losing the ability to speak. as i was learning to walk, he stopped being able to move. my mom often had to choose between who she was going to help go to the bathroom at any given moment: her husband or her toddler.<\/p>\n

after my dad died, my mom took over the philadelphia chapter of the ALS association. it consisted of a shoebox full of notecards with names on it. now it is a multi-million dollar organization with a large staff. she is still in charge. my mom is one of the most amazing people on the planet, basically.<\/p>\n

these past couple weeks have been mind-boggling. i have openly wept watching so many of these videos. i still don\u2019t completely get how all of this has happened, but now we live in a world in which lil wayne and taylor swift and oprah and justin timberlake and weird al and bill gates talk about ALS. my mom just emailed me this sentence: \u201clebron james ice bucket challenge.\u201d i mean, IS THIS REAL LIFE?! i just keep saying over and over: holy shit. holy shit. holy shit.<\/p>\n

so far, it has raised over 10 million dollars\u2026 and counting. my mom has spent every single day of her life for the past three decades trying to get this kind of attention and funds for this disease.<\/p>\n

i don\u2019t care if it\u2019s a stupid gimmick. i don\u2019t care if people are just doing this because it\u2019s trendy or because they want pats on the back. i don\u2019t care if it\u2019s the new harlem shake. i don\u2019t care if for the rest of my life, when i talk about ALS, i have to say \u201cyou know, the ice bucket disease.\u201d<\/p>\n

please, everybody, please keep pouring buckets of ice over your heads. please keep donating money. please keep talking about this.<\/p>\n

my mom\u2019s chapter:<\/p>\n

http:\/\/www.alsphiladelphia.org\/\u00a0<\/a><\/p>\n

p.s. the only reason i haven\u2019t done my own ice bucket challenge yet is because i wanted to do it with my mom. we\u2019re seeing each other next week, so it will happen then, i promise.<\/p>\n<\/blockquote>\n

Think about this next time you think it\u2019s just a stupid gimmick<\/p>\n<\/blockquote>\n

^ and ^^ Thank you!<\/p>\n

Thankfully, I\u2019ve not had to deal with anyone in my circle going through this, but my Anatomy\/Physiology class in high school DID watch Lorenzo\u2019s Oil, which follows a little boy suffering from ALS and his family. It is, to me, one of the more terrifying diseases out there.\u00a0<\/p>\n

What happens is that the nerves that control muscles start to lose their insulating fatty sheathes, making them more and more unable to send signals to the muscles and leading to the progressive loss of muscle function and brain function. It\u2019s a disease that combines two of my deepest fears- losing the ability to move my hands effectively (I am a knitter, artist, painter, constant computer user, cook, writer, and craftswoman, I live in TERROR of losing the use of my hands) and losing brain function. It\u2019s pretty fucking horrific, okay?<\/p>\n

I think the ALS challenge is totally cool- how many goons on the street have HEARD of this disease before celebrities started dumping ice water on their heads? It\u2019s got people talking, got people learning, and it has\u00a0people supporting ALS research and treatment.<\/em><\/p>\n

It\u2019s also providing some entertaining relief from the constant barrage of horrific and depressing Ferguson stuff I\u2019m getting on my dash, which I am quite grateful for.<\/p>\n

Please, keep it up!<\/p>\n<\/blockquote>\n

Anyone who wants to criticize the Ice Bucket Challenge should read this.\u00a0 <\/p>\n

#Still shaking my head over people who want to rip apart anything good, apparently just to be \u201ccool\u201d and \u201ccynical.\u201d<\/p>\n<\/blockquote>\n<\/div>\n","protected":false},"excerpt":{"rendered":"

on the ice bucket challenge hedgehog-goulash7: silvergryphon: queenofcorgis: nofunphillips: my dad died from ALS when i was 3 years old. he was 36. my mom was 33. that was 30 years ago. now i\u2019m the same age my mom was when my dad died. and there is still no cure for ALS.\u00a0 this is what … Continue reading on the ice bucket challenge<\/span> →<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"link","meta":{"ngg_post_thumbnail":0,"footnotes":""},"categories":[1],"tags":[559],"_links":{"self":[{"href":"http:\/\/www.firechildren.net\/lightfire\/iamthefirechild\/wp-json\/wp\/v2\/posts\/5440"}],"collection":[{"href":"http:\/\/www.firechildren.net\/lightfire\/iamthefirechild\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/www.firechildren.net\/lightfire\/iamthefirechild\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/www.firechildren.net\/lightfire\/iamthefirechild\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"http:\/\/www.firechildren.net\/lightfire\/iamthefirechild\/wp-json\/wp\/v2\/comments?post=5440"}],"version-history":[{"count":0,"href":"http:\/\/www.firechildren.net\/lightfire\/iamthefirechild\/wp-json\/wp\/v2\/posts\/5440\/revisions"}],"wp:attachment":[{"href":"http:\/\/www.firechildren.net\/lightfire\/iamthefirechild\/wp-json\/wp\/v2\/media?parent=5440"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.firechildren.net\/lightfire\/iamthefirechild\/wp-json\/wp\/v2\/categories?post=5440"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.firechildren.net\/lightfire\/iamthefirechild\/wp-json\/wp\/v2\/tags?post=5440"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}