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|
|Me and Erin, 1992-ish.|
|l to r: Me, Krystal, Lo, Erin - aka 'The Snack Pack'.|
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.|
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|
- 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.
|Please donate! Click here.|
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."