I’ve never known such pain as that of my broken heart, a physical presentation of indescribable grief. My ALS journey, a treatise on grief, started with the loss of cute shoes, then my career and mobility. Sometimes I threw things... Continue Reading →
This is for people who are going through a difficult time and could use the help of your community or for people who know someone who is. First, let me talk to the people who are going through a life... Continue Reading →
Living with ALS presents challenges and choices, ranging from how to safely get through a morning routine to deciding whether to live with mechanical ventilation or die. Shakespeare was right; To be or not to be, that is the question.... Continue Reading →
Unpublished blog posts sit abandoned in my draft folder. One is bitter; Another begs victim hood. That is not what I want to put out into the universe. So here I sit, gazing at my keyboard, trying again. I’ll just give it to you straight.
I've been on this ALS journey for nearly five years. That alone makes me one of the lucky ones as half of those diagnosed die within two years. And, thanks to the VA, I have access to the equipment and... Continue Reading →
I'm an awkward physical mess and sometimes an emotional mess. Sadness catches in my throat and rolls down my cheeks without warning. Let's express and validate our sadness when needed. But let's not stay there.
My ALS friends, we must unequivocally and unilaterally persist. We cannot stop when we hear a no. Go around it. Start a social media shit storm. Do whatever it takes. We have to because our lives depend upon it.
The act of breathing in. The process of being mentally stimulated to do or feel something, especially to do something creative. The supernatural work of the Holy Spirit. I received a pleasant surprise in the mail today. This picture of... Continue Reading →
My latest ALS progression has me looking like Dr. Spock. I noticed that I can't close the gap between my middle and ring fingers -- Live Long and Prosper! This got me thinking about what it means to live long... Continue Reading →
Shelly Hoover 
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