This picture shows four generations of hands, baby girl to great grandma. I had ALS at the time but didn’t know it.
My brain thinks my body can move. It remembers hugging, drying my hair, and standing on a rock in Lake Tahoe. In a heartless way, it remembers scratching an itch. I recall doing life activities myself, like showering or eating,... Continue Reading →
My disease progression continues, but this time it’s different. I can live without the use of my legs; I can live without the use of my arms. It’s not easy, but doable. But now, my progression is reaching the point... Continue Reading →
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 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 →