Aeolian Veneration

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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.

blingeed:

KINDNESS||ENVY

blingeed:

KINDNESS||ENVY

Click here to support Becoming the Bionic Woman is tough! by Michelle L. Grimm

So this is something that I have struggled with posting about on here for a while. Some of you (especially the ones i know in real life) know that my mother is very sick. She has been sick for over half of my life with one thing or another. If you need more details you can either read her post or I can provide them they can just get a little overwhelming. We have managed to scrape by the entire time with the help of amazing friends and family and me working as many hours as i can at the jobs i have. Unfortunately the bills keep piling up and although she is on disability and social security and has medicare with a medicaid back up there are just some things insurance won’t pay for. We are in the process of looking into the lawsuits that are going on for people who have had the recalled hips like mama but it takes a very long time. And she still has to get these surgeries and things taken care of as soon as possible.

So my mother started a go fund me. The amount to raise is $5,000 which would help with the following:

I owe $300 for the CPM machine that helped me regain movement in my new knee after it was broken during the surgical manipulation. The insurance didn’t cover it. 
I need $500-900 to replace my lift chair which has died and I cannot get into or out of after I have the next joint replacement, and it’s a year too soon for my insurance to help with the cost. 
I need $350 to pay the rehab facility that takes such good care of me. I had to spend 2 extra days that insurance didn’t cover after the first knee replacement. 
I have over $100,000 in medical bills in various stages of collection- as I can’t pay them on disability.
I need a gel seat for my wheelchair, a shower seat for the bathtub, a hospital bed for when I come home from rehab, while I recover and prepare for the next surgery.

I understand that people see things like this all the time on tumblr for much bigger and more worthy causes than this, and if you only have the money to donate to those, please please do!  if you could just signal boost I would appreciate it from the depths of my heart. I am unfortunately not an artist or writer or anything like that. If you can donate and you would like me to sing a song for you i can do that, I just figured since my mother was brave enough to ask for help once more after having to ask so many times I should be too. If anyone wants to ask for more details or anything my inbox is always open and I will answer whatever I can. Thank you so much.

ryokobelmont replied to your photo: “I may possibly maybe kinda have a drafting problem… Maybe…”:
There’s a reason I love you. This is one of those reasons.

d’awww im glad my ridiculousness is loveable <3 <3 <3

(Source: sarah-scales)

toastyhat:

a transparent toasty to frolic on your blog!

toastyhat:

a transparent toasty to frolic on your blog!

k2e4 replied to your post: Dinosaur egg oatmeal, peanut butter an…

i thought this post was going to lead to you combining them all into some unholy frankendinner, and i was afrighted.

ahaha oh my lord that sounds absolutely disgusting i would be afrightend too. nope just what i had to eat in the pantry and i was like ok this will give me at least some nutrition ahaha also dinosaur egg oatmeal is the bomb.

chitaistalker:

Lan Fan for daydreamwiththedragon~~

I’m never doing this type of artwork ever ever again lol
soo many lines, too much lines, took forverrrrr AND EEEVEERRR

Extra : 

I may possibly maybe kinda have a drafting problem… Maybe…

I may possibly maybe kinda have a drafting problem… Maybe…

Feelings: you cute. Keep doing cute.

image

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people calling me cute is something I will never not be happy about no matter how many times I call myself that. Thank you darling I will do so~!