Thursday, January 11, 2018

Erin's Day for ALS Awareness - One Year Later

One year.

I can't believe it's been a year since Erin (Queen Saphire - now a legacy account in her honor) passed away from complications due to ALS. I didn't want this day back in 2017, I don't want this day now. 

I maintained blogging on the 11th for six months while educating myself on what ALS is, how ALS came to be, what's being done to research and combat it, and how close doctors are to finding new treatment or a cure. And as I typed the seven month blog, it occurred to me that I wasn't handling Erin's death in the healthiest way. I couldn't mentally deal with rehashing the pain every single month on the same day, and it was affecting all of my work. So I stopped the blog posts. 

I was scared that she'd go away, that her spirit wouldn't visit me or manifest anymore. But she's been with me nearly every day, regardless, and I feel her with such intensity sometimes that it's like she's still here. So I've hit a point in the grieving process where a sign will appear (or in one case, actually hearing her voice next to my right ear, whispering "Hi") and I'll look off into the distance and just say, "Hey Ren." And the tears are still there, but I'm smiling now. 

So what's actually been happening? 

Erin's memory drives everything I do lately. If I'm afraid of taking a step toward someone or something, I double back and think about what would happen if I'd actually texted Erin about it. And the reality of it is, if I'm not hurting myself or anyone else, her answer would always be, "Do it, Manfa!" -- any leap I take, any move I make, is in part because Erin would want me to. Upcoming projects include printing and binding a small stock of my work for giveaways later this year. Additionally, I'm going to be crafting a medium-fcukton of custom book plates and other kitschy homemade merchandise to make reading my work more fun and interactive (well, I suppose that remains to be seen). I'm really looking forward to sharing it all with my readers (yeah, you!), knowing Erin would be looking down, clapping excitedly and saying "Yeay!" (that's how she spelled it), because she's my biggest fan. 

I've learned of a couple of people currently living their best lives, despite the fact that they've been stricken with ALS, and I follow them on Instagram. I root for them and keep them in the back of my mind and heart every single day, because I don't want them or their loved ones to go through what Erin and we went through. If you do frequent, or not-so-frequent, Instagram, check out Steve Dezember's story; the page, @hopieannc , is curated and maintained by his wife Hope (they started dating weeks before his diagnosis, fell in love, married, and haven't looked back) and the photos tell the story of his current fight in a very real and very candid manner.  While you're there, go visit @carbajalphoto and meet Anthony Carbajal, a gentleman stricken with ALS who, even as the disease continues to rob him of his facilities, is determined to continue seeing the beauty in life through photography and sharing it with us all. 

Erin's Song - If Only Through Heaven's Eyes by *NSync

 The Ice Bucket Challenge continues to make good.  In November (almost a year after Erin's official diagnosis), researchers discovered that Pimozide, a drug used to treat schizophrenia, seems to slow the progress of ALS in both animal and human models, at least for the short term. Clinical trials still have to be run, but it is an absolute beacon of hope for those with the disease who need it. Click this sentence to read more about it. 

For my birthday, instead of presents, I chose to raise money for ALS research. I set a simple and attainable goal, and my friends truly came through.  We raised $250 in October, and stay tuned - because I'm not done raising money or awareness yet. In fact, if you are so inclined, be sure to visit since it is the 11th and Erin's Day for ALS Awareness and donate something in her memory on the anniversary of her passing.

What's Next? 

The plan, babies, is to continue to raise awareness of the hateful disease that stole my best friend and to make Erin's memory count for something. I've said it before, and I'll say it again - Erin Danielle Nelson (aka Queen Saphire of the Universal Zulu Nation) was the embodiment of unconditional love, unwavering support and, all around, a living angel. 

This new year will hopefully be comprised of a series of moments in which I honor her memory and continue to make her proud. So find me on Facebook, sign up for the mailing list, shoot me an email - because while my soul sister is gone, I've got plenty more to give. Not just for my own sense of accomplishment, but because Erin would want me to. 

 Erin Danielle Nelson 9/4/77 - 1/11/17 

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