My life isn’t what I expected. Who would have thought my arms and legs would be merely ornamental? I’m not going to lie, being a quadriplegic isn’t easy. Wow. I need a minute to let that sink in, my arms and legs are no longer functional. It’s not the end of the world. I can still live my best life, regardless.
I had the most amazing experience at a concert a few days ago. Nahko came out into the audience and I found him standing next to me. He held my hand and sang my favorite song, Love Letters to God. My heart nearly exploded. I felt his energy pour into me as he sang, I’ve never experienced anything like it. I was overwhelmed with a feeling of abundance and joy that could not be contained. My heart expanded and I am compelled to be a conduit for the love and acceptance shown to me. Truly, he gave me his medicine.
I’ve recently turned the scariest corner of my ALS journey -- bulbar symptoms. I’ve lived in denial for five years, thinking I would never get there. But, here I am, experiencing loss of pulmonary function, choking, excess saliva, and slow... Continue Reading →
My bed gently rolls me from my side to my back. The familiar hum of the bed rouses me. You know that place, you’re half awake and half asleep? I open one eye, just a sliver, to see if the... Continue Reading →
I’m not dying anymore. I’ve outlived my 2 to 5 year ALS prognosis and I’m done being sick. I’ll continue to advocate and irritate until we have an effective treatment, but until then, I’m choosing to LIVE without death hanging... Continue Reading →
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 →
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 →
Death is a constant in the ALS community. Yet this one hit me particularly hard. My dear friend and adopted sister won her battle with ALS on Wednesday, January 18th. I met Karen and her amazing family in May, 2014... Continue Reading →
I practice in my Christian tradition that: my mind is to be fixed on praiseworthy things Finally, my brothers and sisters, always think about what is true. Think about what is noble, right and pure. Think about what is lovely and... Continue Reading →
Shelly Hoover 
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