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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, given 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 diagnosed, 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), researches 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 terms. 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 alsa.org/donate 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 

Sunday, October 29, 2017

NaNoWriMo is Coming, and I'm Ready to Write All The Words

NaNoWriMo is Coming. 

My fellow writers and I are three days away from the all-out, bang-up word brawl that is National Novel Writing Month. While some men grow their creepiest mustaches (Sorrynotsorry, the only truly rockin' mustache will ever belong to Tom Selleck), writers the world over will be fleshing out plot maps, following their most meticulous outlines or, in some cases, spewing verbs, nouns, adjectives, and adverbs by the seat of their pants. 

I am normally the spewer. 

However, I have broken from tradition and actually wrote a synopsis from which to work. I'm pretty proud of myself, I stand to hit the word count goal this year! 50,000 words works out to about 1667 words daily - if you write every single day. It's not for the faint of heart, but I've seen some of the most amazing writers hit this goal and pass it several years in a row. Given that I once wrote 50,000 words in 12 days, I plan on being no exception. Here's a brief summary of The Wedding Caravan, the project I chose to focus on during this epic writer's month: 
 
A funny and successful city girl, as she nears her 30th birthday, has a super dynamic best friend who is getting married in 3 weeks, and the whole gang is returning to the bride’s childhood stomping grounds to plan a fabulous quickie celebration. Can said city girl make it to the big day in a town without pity, achieve her pre-set summer goals, keep her own happily ever after thriving, and still have her sanity in tact when all is said and done?  

Interested? Well, I'll let you in on a little secret: 'The Wedding Caravan' is actually just half of the working title. As I close in on 50K, I'll reveal the rest of the title along with what I plan to do with the completed manuscript. Are you excited, 'cause uh... I am!

As I said, I am ready to write all the words. I'm in a good place right now, and ready to start November off right. Falling on my face is not an option - oh, don't mistake me, it's a possibility - so I'm going into this month strong and planning on coming out the same way. Writer buds, how are you amping yourself up for this year's NaNoWriMo? Have you gotten your banner up yet? Are you doing writing exercises to keep the brain loose? Are your wine stores replenished, for Goddess' sake?!

Let me know what you're doing for November, and hey - let me see your Halloween costumes! I'll be announcing the winner of my birthday giveaway on November 1st, the day NaNoWriMo begins, so if you haven't entered by sending a birthday video, get that in before the end of the contest on the 31st.  Best of luck, NaNoWriters!

Sunday, October 8, 2017

I'm Doing A Giveway For My Birthday and Trust Me, You Want In.

My Birthday is on the 18th, but I want to give away a present!


This year is a pretty important birthday for me, and what I want more than anything is to hear music from the people that mean the most to me. My friends, my family, my readers... all of  you fit into one or more of these categories so I'm appealing to you personally. 

This year, post a video of you (or you and your friends, or you and your cat!), on my Facebook page, singing for my birthday. The song is 'Rainbow Connection', but I certainly wouldn't love you less for a rousing rendition of 'Space Oddity' or something off your personal playlist. Whatever you choose to do, have fun with it!

My favorite video will win a signed paperback copy of 'Kirby', my first romance novel published by Crimson Romance in 2013 and a box full of homemade treats, not to mention a couple of samples of new merchandise that I'll be putting in my 'Little Shop of Cool Isht' when it debuts on my website in the coming months! You need this box of goodies, I promise - so be sure to post your video between now and the 18th, which is when my Momma birthed me and also marks the end of the contest!

 

 

Once all the gift wrap is tossed and the gifts are put away, there's a little matter of NaNoWriMo


That's right, babies - it's that time of year again! Every November, while men are growing out their creepiest mustaches (the only mustache I've ever been able to tolerate sits above Tom Selleck's upper lip and I'll maintain that forever), millions of writers from all over the world hunker down in front of their laptops (or papers and pens) with glasses of wine, cups of tea, mug cakes, and Dammit Dolls and attempt to complete a 50,000 word novel in the span of 30 days. I am participating this year and, in preparation, I've begun a wild race to get my current Work In Progress completed and sent off to my publisher. I think that officially puts me on two deadlines and also makes me an absolute lunatic. 

Keep your eyes peeled on October 19th (don't worry, I'll remind you again) - I'll be visiting The Write Way Cafe and reflecting on my birthday and feeling like I'm growing up all over again as a creative in this day and age. Hopefully you'll stick with me throughout November to cheer me on. And hey, if you need a cheerleader, shoot me an email and tell me all about it; I wanna make sure I put up a shout out and throw some good vibes into the Universe for you!

Until next time... stay creative!

xo,
Sami


Saturday, August 12, 2017

Erin's Day For ALS Awareness

Erin's Day For ALS Awareness

I've been trying to wrap my ahead around the task I've set for myself - keeping Erin's
memory alive, raising awareness for the disease that took her (including figuring out and holding myself accountable for whether or not ALS is actually a disease or a disorder, and whether or not there's even a frickin' difference when all is said and done. Putting a pin in the fact that my last sentence was probably maddeningly long to read, I do want to spread awareness and raise money for research on the disease that I've heard too many people ask, after I tell them about Erin's Day, "What's ALS?"

It's always interesting when news pops up about something when you're constantly thinking about it and researching it. Radiclava, the first new treatment for ALS approved for sale in 20 years, showed up in the news mere months after Erin died, inciting hope for living fighters for the first time in far too long. A week ago, I read an article on People.com about Steve and Hope Dezember - Steve had been diagnosed with ALS shortly after meeting Hope and they have been fighting together ever since. And with the recent loss of Sam Shepard to a hard fought battle with ALS, it seems that the disease is front and center for now.

This search for information has shown me a lot - I officially have a Pinterest board dedicated to ALS-related pins - and it's also thrown me for a loop. To clarify, I'm dealing with a little bit of guilt right now, because the information has really been out there all along - and if it's been invisible to me, then it's invisible to plenty more, because in many ways I'm about as 'basic' as they come. So, if nothing else, this last month has strengthened my resolve to raise awareness and continue to raise dollars in Erin's name.

Additionally, I've been blessed to have my Goddaughter (Erin's eldest daughter) Danielle and her daughter (my tiny little Sweet Pea of a grand-niece) with me for the last couple of days - they'll be here only another week or so, but it had been since Erin's funeral that I hadn't seen them in person. Erin raised a brilliantly strong woman before she passed on, and I don't doubt for a second that Danielle makes her mother proud daily as she continues to fight the good
fight in her own personal life. I'll admit it's also been a little tough watching those little mannerisms that scream 'Erin' - my heart sings and breaks every time Danielle smiles or chuckles because... well, there's Erin. And looking into Dani's eyes? Erin. Danielle even holds her daughter the way Erin held Danielle was Dani was the same age. I think Dani must have seen the pain in my eyes (sorry about that, Munch) because she confessed a couple of days ago that she tried to turn away so that I wouldn't see how she cuddled her daughter, knowing it was the way Erin comforted her. I told her I'd rather see Erin in her every single day than to forget what my best friend looked like.

So, about that video...

To you, reader, I ask - have you made your video yet? Have you challenged your friends? The only way to spread the word is to actually spread the word, right? So make your video, babies. SING. SPREAD THE WORD. DONATE. #ALSawareness #ASongForErin #RIPQueenSaphire

RIP Erin 1977-2017