what do people think conversations are? they’re literally. exchanges of opinions.

i have sat here trying to figure this out and honestly i am stumped

Anonymous asked: everyone is entitled to their opinion. even on als. don't insult people for expressing that.

Here’s the deal.

Yes, everyone is entitled to an opinion. But if I feel triggered by opinions and want to speak out on them and present a different outlook on them that may be overlooked, that entitlement is mine as well. Especially given I actually do have experiences in dealing with ALS that the ones speaking out against it (fortunately!) don’t. 

My recounting of my own personal experiences and feelings on the backlash from the ALS challenge should not be taken as a personal offense, but just me trying to get my thoughts and feelings across. I felt disrespected. I felt offended for my dad. And it’s not just one person who made me personally feel that way, it’s many people (including! news! reporters!) who said things that made me feel that way. Other people who deal with ALS obviously feel the same way as it’s been expressed in various ways by people who have family members and close friends with the disease. I never once insulted people for what they said, even when it offended me on a level I can’t even express.

Just saying you have a right to an opinion doesn’t automatically grant you full privileges to be free from any response when you say something blatantly triggering to me. My intention wasn’t to insult but to inform, even when I felt insulted. Please do not confuse the two.

mercury32 asked: I lost my father to a lesser known cancer with an extremely high mortality rate & I can't imagine how frustrating & hurtful it would be to finally see awareness being raised only to have people dismiss it as a waste of time or stupid. I can only assume those people have never been affected by a fatal condition otherwise I'm sure they wouldn't be so cold about it. Ignore the haters, this is one of the few viral awareness campaigns that's actually working and that. Is. BRILLIANT.

mercury32:

loganmars:

I’m so sorry about your dad. I know how much that sucks. What cancer is it? 

Thank you for the kind words. <3

Pancreatic cancer. It’s a ninja cancer - almost impossible to diagnose and any obvious symptoms usually come from where the cancer has spread to other organs. (In Dad’s case it had spread to 6 other locations.) The average prognosis is three months and the 5 year survival rate is around 5%.

Oh, god, I’m so sorry. That’s terrible. :( Hopefully more awareness can be raised for it aswell! 

randomfandemonium:

Jim Beaver just made the Ice Bucket Challenge haters sit down and shutup

(Link From The Post)

Disclaimer: You will probably cry when you watch the video

Zachary Levi’s ALS Ice Bucket Challenge x

pirateslovebooty:

One thing I just really want to make clear because this is something really important to me: It is FINE to care about a certain issue more than another. Everyone feels that way because different things affect different people. Not everyone will get als or cancer, not every person will be the target of racial discrimination, not everyone is trans, queer, poc, Muslim, Jewish, Brazilian, Syrian - certain things will always touch you more than others. However, pain and suffering is not a measurable concept. Comparing the death of a loved one to a debilitating disease to drought and people dying of thirst and hunger because of lack of water to black people being killed and treated as lesser for the colour of their skin - you can’t do it. To pit these things against each other as if its a competition only diminishes the very real lives affected by them and takes away from what is important: trying to create a better world for everyone. So yes, champion your causes, raise awareness and get the ball moving on actual solutions, but please, PLEASE don’t suggest that one is more important than the other when real human lives are involved. It just leaves people feeling hurt and angry, and do you really want that?

mercury32 asked: I lost my father to a lesser known cancer with an extremely high mortality rate & I can't imagine how frustrating & hurtful it would be to finally see awareness being raised only to have people dismiss it as a waste of time or stupid. I can only assume those people have never been affected by a fatal condition otherwise I'm sure they wouldn't be so cold about it. Ignore the haters, this is one of the few viral awareness campaigns that's actually working and that. Is. BRILLIANT.

I’m so sorry about your dad. I know how much that sucks. What cancer is it? 

Thank you for the kind words. <3

on the ice bucket challenge

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’m the same age my mom was when my dad died. and there is still no cure for ALS. 

this is what happens when you have ALS: your muscles slowly stop working, one part at a time. for my dad, first he couldn’t use one of his hands. then his arm. then the other arm. then he couldn’t walk. then he couldn’t stand up. then he couldn’t talk. then he couldn’t swallow. then he couldn’t breathe. then he was dead.

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.

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.

these past couple weeks have been mind-boggling. i have openly wept watching so many of these videos. i still don’t 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: “lebron james ice bucket challenge.” i mean, IS THIS REAL LIFE?! i just keep saying over and over: holy shit. holy shit. holy shit.

so far, it has raised over 10 million dollars… 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.

i don’t care if it’s a stupid gimmick. i don’t care if people are just doing this because it’s trendy or because they want pats on the back. i don’t care if it’s the new harlem shake. i don’t care if for the rest of my life, when i talk about ALS, i have to say “you know, the ice bucket disease.”

please, everybody, please keep pouring buckets of ice over your heads. please keep donating money. please keep talking about this.

my mom’s chapter:

http://www.alsphiladelphia.org/ 

p.s. the only reason i haven’t done my own ice bucket challenge yet is because i wanted to do it with my mom. we’re seeing each other next week, so it will happen then, i promise.

 

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