I have genuine mixed emotions about these ALS ice bucket challenge videos.
On one hand, they are raising so much awareness and millions of dollars for a debilitating disease that has no cure and very little understanding to it. A disease that wreaks havoc on one’s body, potentially killing said persons spirit, and putting said person and their loved ones in a state of travesty at the slow rate the disease crawls. ALS is scary. It is frightening. It is horrifying. However, it is utterly brilliant, beautiful, and amazing that so many people have done these videos and donated, but of all the videos I’ve seen, and there are SO many of them, only 2 that I’ve seen thus far actually explain what ALS is, what it does, and how it affects the person who has it and the people who care for them.
That in itself is why I have gotten annoyed with the videos for the most part, some of them are sort of funny and the occasional celebrity one is amusing, but for the most part, nobody goes into what ALS is, what is does, or how it affects people. And the only two videos that actually have done that are two people who have ALS. Part of raising awareness is telling stories, teaching people, letting them understand the desperate struggle that those with ALS go through on a day to day basis.
On the other, why can’t people be as passionate and give just as much to the Alzheimer’s and Dementia community? To be fair, there haven’t been as many people familiar with ALS as there are with Alzheimer’s and Dementia. Alzheimers and Dementia affect people and their loved ones at an extremely alarming rate and there is, like ALS, absolutely no cure for it. But ALS has, I suppose up until very recently, been underneath most peoples radars because the amount of people who have it in just the United States alone is around 30,000 people. In comparison to Alz/Dem staggering 5 million cases in just the US alone, I can see absolutely see why a very brave 26 year old man made an extremely emotional video about himself, his mother, and own Grandmother who all suffer/ed from ALS. His life will forever be different from millions of other people, it already is with the around the clock care he likely gives his own mother.
I guess it’s hard for me to swallow as a whole emotionally. Because in my heart, I am 250% supportive of those with ALS and their loved ones and their care givers. I have watched a debilitating disease slowly strip away the very essence of my own father to the point where he was nearly a shell. An almost unrecognizable shadow of the man we all loved. It’s fucking hard, but in retrospect, watching the videos of the people who have ALS, I am thankful at least my father did not lose complete function of every part of his body, mostly just his memory and mind. But even at the end, in the last two years, to the last year, to the last few months of his life, he did slowly forget how to do things, when to do them.
A 56 year old man spent his last few years amongst the elderly in a nursing home of downtown Atlanta, defecating in his own diaper, dribbling all over his own clothes, putting more food onto his face or into his lap instead of into his mouth, sharing a bedroom with 3 other Alzheimer and Dementia ridden friends who would hide beneath their covers on certain days because they too could not remember that you were the child of the man who slept in bed next to them. Slowly, he forgot how to do most anything at all, he forgot how to stand, how to sit, how to walk, how to eat, how to change his own clothes, brush his own teeth, comb his own hair. He forgot how to talk. I can’t even remember the last time I heard my dad’s voice.
In the end, the only thing that was keeping him alive was a feeding tube. And collectively, his four children had to sit down in a hospice room and all acknowledge to each other and to the state of Georgia that he was no longer living any sort of quality of life and that it was time to remove the feeding tube. And in whatever state of consciousness he might have still be in, before they removed the tube, we all said our goodbyes, we all watched him smile, we all looked into his eyes knowing that it would be the last time we could look for that familiar twinkle of resonating humor.
By the next morning, after the removal of the tube, he went into an immediate coma and 10 days later on August 15th he let go.
There are no cures for these diseases. There is nothing that can be done, but the ultimate goal is to always make them as comfortable as humanely possible as you watch them descend away from you. They are all terrifying diseases. They are all stripping away peoples lives with a slow, gradual, painful descent.
Everyone should have an awareness of all of them, because in the technological and medical age we live in, there should be more chance of survival and there should be more chance of a cure, at least a cure for most if not all of the symptoms. The more you donate to any cause, ALS, Alzheimers or Dementia, Palsy, Parkinson’s, ect, the greater chance that one day, hopefully sooner rather than later, there will be those medicinal fixes and cures for these types of illnesses.
I know the ALS community is over the moon and elated to have the spotlight, and rightly so, it should. But keep giving, keep giving to them all.
Because one day it might be you or someone you love.
I have genuine mixed emotions about these ALS ice bucket challenge videos.
You realize that everything the police are doing in Ferguson is carefully calculated, right? They’re purposely turning peaceful protests into riots. They’re purposely committing violence to incite violence. From saying ‘We won’t be answering 911 calls,’ which is a very clever way to set themselves up to be able to say, ‘We were afraid for our safety - any call could really be an ambush, our lives were in danger’ right down to the camouflage and the military tanks and wearing more body armor than a soldier in a war zone. Its exactly why they’re going for a media blackout - yet allowing certain photos through - they WANT you to see their tanks. They want you to see their riot gear. They WANT you to see a war-zone. They’re trying to sell the world the idea that this community is inherently and constantly a source of violence and turmoil - they want you to think that they [the police] are being attacked daily in a place so vicious they need full body armor. You know why? Because then, at the end of the day, you might just be able to believe the story they’re going to spin. They’re going to tell you that this (white) officer goes to work in this war zone every day - that he spends every working moment in constant fear for his life. They’re going to tell you that Michael Brown attacked this officer. And then they’re going to bring up everything that has happened in the aftermath and try to use it to convince you that he shot that little boy because he was afraid for his life. They’re setting up a defense. You mark my words, they’re trying to set up a defense.
My mom’s take on what’s going on in Ferguson (via actualbanshee)
Your mom isn’t wrong. That’s why it’s so important to keep the signal going. Too many are silenced with lies and fear and if they cannot speak then we have to do it for them.
SING IT FOR THE CHILDREN!
Here’s the setlist from tonight’s show in Atlanta!
Absolutely life changing.
I cannot believe it has taken me so, so long to see her live when I have been a fan for almost 20 years.
It was a perfect show and a perfect set.
Seeing her is a religious experience.
You know what I love most about my Tumblr feed lately??
No fucking ice bucket challenge videos.
Just donate your money to a worthy cause people. Move on with your life.
Go on with the chlorophyll.
I have tried avoiding being online so much the last few days because I’ve been sick and needed rest, but also because there are still so many amazing Robin Williams tributes everywhere.
I just read the blogpost Mara Wilson wrote about Robin and I think she has said it perfectly, from her infamous line in Mrs. Doubtfire.
We’re all his goddamn kids, too.
We all loved him and we all lost him.
And it still is so heartbreaking and I still can’t stop the tears from falling.
”Little Earthquakes is all about celebration. Celebrating the ability to laugh, weep, and scream, particularly if you have been silent for years. And so it’s about celebrating sexuality in the widest sense, including the elements of revenge … Just because I’m with a man and because I’m creaming for a man doesn’t make him a master, doesn’t even necessarily make him worthy of love, of my love. And I now realize, maybe for the first time in my life, that my capacity for love is incredibly deep and that for me to give this to a man he has to fully understand, and respect what that means. Too few do.” -Tori Amos
—Silent All These Years
It’s strange how almost each lyric pulls a different memory throughout the years.
Tori Amos—-Silent All These Years
Sometimes I hear my voice
And it’s been here
Silent all these years……