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Tuesday, July 11, 2017

Erin's Day for ALS Awareness

 Erin's Day for ALS Awareness


Today marks six months since my best friend's soul was released into the Universe. I cry less, but I miss her just as much. Her absence still hurts, but I still see her everywhere. I'm not surprised, because our souls are tethered, but it's always a delight when she appears from seemingly out of nowhere. And my reaction is almost always the same. My eyes flutter shut; I smile. I can feel my center glowing. And then I say, "Hi, Ren."





Six months months of trying to cope with the most painful loss in my life to date. Six months of wanting so much to make Erin proud and keep her light shining, only to be (sort of) held back by random crying spells, crippling depression when my brain refused to let my body move. I wanted so badly to learn more about the disease that took her, and to figure out how to get my brain to figure out a) how to make sense of it all and b) how best to educate and raise awareness about what ALS and similar neurodegenerative diseases like it do to those affected, both directly and indirectly. 

First, I learned the root of the terminology - something I'm sure Erin did way before I thought to do it. The origin of the word, according to a couple of sites, is Greek (fam, did you hear Erin quote directly from 'My Big Fat Greek Wedding'? I totally did.). And, based on the infograph below (which seems to be the accepted word breakdown), Amyotrophic translates to 'No Muscle Nourishment'. Then of course, the word Lateral refers to the area of the spine that is attacked, while Sclerosis refers to the hardened state of the spine in the disease's advanced stage. There you go - words telling you exactly what ALS does.


image credit: cbc.ca
Second, I learned that Erin's type of ALS (likely familial) only occurs in 5% of all cases, which means that 95% of the 30,000-33,000 diagnosed are completely sporadic. What causes ALS? According to MDA.org, while scientists do know that it isn't transmittable, the idea that people are pre-disposed to having it, but only develop it after coming into contact with an environmental trigger is still just a theory. The spiral I spun into wondering what that trigger was for Erin left me in a fog for days. Additionally, it is believed that some folks who have been diagnosed with a sporadic case may carry ALS-causing genetic mutations that can be passed on to offspring. It weighs heavy on mind that the string of ALS related deaths in Erin's family could have potentially began with a single sporadic case and grew to become the equivalent of a fucked up family heirloom. It makes my heart hurt, and it makes me fear for my Godbabies - I don't understand this life, and how things like this come to be, but that's another post for another time. 

ALS occurs the world over with no racial, ethnic, or socioeconomic boundaries, so not only is it important to keep the conversation going about the existence of neurodegenerative diseases (which, with the rapidly increasing use of chemicals in our food and water supplies, said diseases are becoming more common) like ALS so that research and medical advances can continue, but it is super important to know the warning signs as early as possible to prolong life. 

Currently: 
  • 50% of those affected with ALS live at least 3 or more years after diagnosis.
  • 20% live more than 5 years, and
  • Only up to 10% will survive more than 10 years
We can help change the conversation. Through awareness comes donations, and through donations comes continued research and, eventually, advancement. And with advancement, maybe someone else's sibling or parent can be save. Maybe, somewhere down the road, someone's Erin won't have to die. 

I thought long and hard about how to continue to spread ALS awareness and it brought me back to the Ice Bucket Challenge. It was fun, it was inclusive, and it raised a record amount of money that certainly could have helped lead to the FDA's approval of the first new treatment drug in 20 years.  

Songs were happening here.
That's when it hit me: Erin loved music. And she couldn't exactly carry a tune, but she loved to sing and let the music take her away - especially when The Snack Pack was involved. And one of the beautiful things about her was that she was everyone's biggest fan; she admired and uplifted anyone and everyone passionate enough to put themselves out there and present their art to the world. 

So my campaign is simple: Sing. The genre doesn't matter (Erin loved them all, for the most part), whether or not you can carry a tune doesn't matter. The message is love, the message is awareness - whether it's karaoke, CARaoke (hint hint), or accapella with a couple of friends in front of your desktop. Then make a video - it can be a full song or half a song. The script is simple: 

"Everyday an average of 15 people are diagnosed with ALS and, while there are treatments to prolong life, there is still no cure. So Sing. Spread the Word. Donate."

And donate.  Visit ALSA.org/donate to leave your gift before challenging your friends to do the same. The hashtags? #alsawareness #fuckals #asongforerin 





Here, I'll get us started:


Ren,

I know you're watching, and I know you're loving this already. I miss you every day. 

xo,
Manfa

Erin Danielle Nelson 1977-2017

2 comments:

  1. I will miss you always!! Every time I watch that video of all of us acting up I laugh, and cry at the same time, because that was something I hold dear to my heart. Love you Erin.

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    Replies
    1. Love you Shee-Shee! Don't forgot to drop a donation at ALSA.org/donate and make your challenge video to encourage your friends to have some fun doing the same! ❤️

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