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Friday, March 10, 2017

ALS Stole My Best Friend


Two months ago today, my soul sister Erin lost a brief, but hard fought battle with ALS - it came in, robbed her of her vitality and then robbed the rest of us of the incredible privilege of having her in our lives. A day hasn't gone by where I haven't thought of her, and wondered what I can do to keep her amazing light shining. To know Erin was to be in the presence of love, and I need to share some of her light in order for you to understand the impact that her passing has had on me and (legitimately) hundreds of others. 

Erin aka Saphire, 9/4/77 - 1/11/17

Erin (also known as Saphire) was an active member of the Universal Zulu Nation (crowned Queen, on the Council of Elders, and a curator of all of the Nation's vast stores of knowledge), and had been since the mid-90's. She worked tirelessly for the nation to disprove the 'gang' label that had wrongfully been placed on them since their inception in the 70's. She operated with love, and understanding - she was a Queen in all rights, always displaying the most open heart, the most open mind, and the most beautiful soul. She inspired everyone she met to be better version of themselves and, as a result, people everywhere loved her. In fact, during her final days, members of the Universal Zulu Nation were actively driving across country and traveling across the ocean to have the opportunity to say one last goodbye to their Queen. And when she left us, there was barely a space to breathe in the funeral home - it seemed the entire world came to pay their respects. And that's how I knew it would be: a fabulous farewell fit for a dignitary, a glorious outpouring of love for a woman whom I considered an inspiration and a living angel. Erin was love. Erin was light. And she always will be. 

Me and Erin, 1992-ish.
Growing up, she knew this was a possibility. We'd spend hours talking about anything and everything, some of which included her fear that she'd end up developing ALS the way that her biological mother had. I can remember her saying that if she made it to 30, she'd feel like she could count herself safe - and on her 30th birthday, we privately breathed a sigh of relief. But life had different plans. It was just over a year ago that her voice began to slur, she began to lose weight, and she couldn't keep food down. She retreated within herself and didn't say much to anyone, despite the fact that the signs had begun to pile up. She was always the woman who preferred to take care of everyone else and never wanted folks to make a fuss over her. So she began to make peace with the world around her, packing in as much life as she could while she awaited the inevitable diagnosis as quietly as she could (so that she wouldn't have to send anyone into a panic). And while ALS ultimately claimed her roughly four months after her 39th birthday, I'm happy to say that she got to take the long road trip she wanted, and she got to, above all, hold her first grandchild. 

There's so much I wanted to experience with her, with all of my soul sisters. And to hell with it, I'll be honest - I was clueless about her suffering toward the end. Going about my life 1600 miles away after moving to Texas, I had no idea how bad it was. Whenever I asked for more detail, she never gave it to me. She only let me know she was fighting, trying to get through it. I can remember my heart cracking straight down the middle when I asked her sometime
l to r: Me, Krystal, Lo, Erin - aka 'The Snack Pack'.
in December how she was, and she simply responded, "I'm tired" - it speaks volumes to me now, in hindsight. All I could do was remain steadfast in my support, even though I was far away; all I could do was send words of encouragement, and try to keep as much hope in her heart as possible. 


It wasn't until her final return to the hospital in December that I realized she was actually dying; that it wasn't coming eventually, it was coming for her immediately. I'm thankful for things like Facebook Video Chat - her fiance gladly held his phone to her face while I sat on the other side with tears in my eyes. She looked me in the face and I told her I loved her. I have to believe she heard me. I prayed daily for her; the last text I sent her before she slipped into a state of unconsciousness was to ask, when she got out of the hospital and was in better health, if she'd like to take a nice long road trip with our sisters Krystal and Lorraine - our last big trip together had been in 2008. She answered that she'd love it. The thing is, I had no idea. None. I believed she'd get better. At least well enough to handle the road trip, as long as we were prepared to care for her (and we would have been). And thinking about it now, she knew - I'm wondering whose sense of hope she'd been stoking when she answered, hers or mine. Maybe it was both. 

A tribute created by a member of the Universal Zulu Nation.
On January 11th, I sat straight up in bed at 7am - I gasped for air, my heart racing. Blindly, I reached for my phone. The message was already there - one of my best girls, one of my soulmates, one of my true sisters, was gone. The world had already been thick and scary - it was a lingering feeling of pending doom that had been hanging in the air for a month or so since she had first gotten really sick. I wasn't sleeping, I wasn't dealing with people well, I couldn't focus, I couldn't write. And when she breathed her last, it didn't get better. The days after leading to her funeral and burial were surreal. I couldn't handle that she was gone, that I'd never see her face again - at least, not in this lifetime. It's odd to feel such a painful sense of loss while not feeling like I'd never see her again. Call me crazy, but I know she's one of my soulmates. I've been blessed to have found them all - and I walk every life with them. I know I'll see her again, but right now I'm being human and selfish: I want my sister here. And since then, I've been chaotic, for lack of a better word. How do I deal with this? How do I honor my best friend? How do I honor the memory of the girl who, in high school, stood at my back when I was about to be jumped by three girls with no questions asked? How do I keep this amazing, selfless, loving, truly beautiful woman's light shining? And all I can think is to start with awareness of the disease that claimed her life. 

ALS - Amyotrophic Lateral Sclerosis, also known Lou Gehrig's Disease - is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. (ALS.org)

There are actually 3 forms of ALS, described as follows on the ALS Association's Website:
1. Sporadic - this is the most common form of the disease in the US - 90 to 95% of all cases are diagnosed as a sporadic form of ALS. 
2. Familial - this form of ALS occurs more than once in a family lineage and accounts for only 5-10% of all cases. This was most certainly the form that afflicted Erin. A member of her family told me recently that every woman on her mother's side of the family lost their lives to the disease.  
3. Guamanian - an extremely high incidence of ALS was observed in Guam and the Trust Territories of the Pacific in the 1950's.


ALS - Facts You Should Know
According to ALS.org, early symptoms are so slight that they are frequently overlooked. Depending on their appearance and how progressed the illness actually is, the course of ALS may include: 
  • muscle weakness in the hands, arms, legs, or difficulty swallowing, speaking, or breathing. 
  • muscle twitches and cramps, especially in the hands and feet, arms or legs
  • "thick speech" and difficulty projecting the voice
  • in more advanced stages, shortness of breath, difficulty in breathing and swallowing.

Diagnosis is important in prolonging the life of someone with ALS, and following treatment 100% to the letter is also crucial. However, the disease itself is so sneaky and rarely diagnosed in time, that it's often too late to treat successfully to add more than a few months onto a person's life. It is very difficult to diagnose, and frequently what a doctor does (at their own discretion) is rule out diseases whose symptoms are similar before they arrive at the diagnosis of ALS. Testing includes electrodiagnostics (electomyography and/or nerve conduction velocity), spinal tap, x-ray/MRI, myelogram of the spine, and blood/urine studies. At this time, though the ALS Association is working diligently to learn more about this disease and how to stop it, there is no cure and the disease will eventually lead to death. 

Just as awareness of any disease is crucial to developing new methods to diagnose, treat, and ultimately prevent or cure, so is awareness of this debilitating condition. ALS Awareness month is in May, and has been for the last 24 years. During that month, the ALS Association sponsors the Nation ALS Advocacy Day and Public Policy Conference, leading a delegation of people with ALS, their caregivers and other advocates to Capitol Hill to urge legislators to support measures to help find treatments and a cure.

The ALS Awareness Challenge began in 2013 with Pete Frates and Pat Quinn, both diagnosed with the disease in 2012 and 2013, respectively. It involved challenging friends to either dump a bucket of ice water over your head, or donate to the ALS Association within 24 hours of the challenge. The challenge spread far and wide, and eventually celebrities got involved, divulging in the comedy of dumping a bucket of ice over their heads while still donating to the organization. 


Please donate! Click here.
So, please - I beg. If you can donate, do so. I invite you to learn about ALS and post links to your blogs or Facebook pages encouraging others to do the same. This is a rough world we live in, and the hope is that the ALS Association can continue their work to successfully find ways to deal with this life-stealing disease. And maybe, just maybe, convincing others to care about this will cause a domino effect, and they'll start caring about everything else too. Dare to dream? Maybe, but - like Erin did, and frequently sought out - I believe that there is good in us all. And a tidal wave of hope and love can often happen out of nowhere. 

For now, I continue my struggle to find ways to make Erin proud and to make sure her memory lives on. She deserves immortality - she's earned it. I feel and see her presence every day - in music, in the outdoors, in movies and books, and on the faces of her children (my Godbabies). But I want her here, so badly. All I can do today is say out loud, "I love you, Erin. And I won't let you down."

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