A few weeks ago, the 11th anniversary of my ALS diagnosis passed quietly.
I am treading water as waves of end stage ALS symptoms hit me again and again. Holding onto my identity often feels impossible and irrelevant. I. Am. Exhausted.
What does writing matter when I’m trying not to drown in an ocean of nerve, muscle, and mind pain?
Anxiety tangles with pain. They feed on each other and exhaust me. I’m not sure how much longer I can keep my head above water.
Then, in the distance, like a fuzzy childhood memory, I recall writing – and posting – about my life with ALS gave me purpose and connection.
Maybe if I kick my legs as hard as I can when I feel a wave coming, I can use the wave to lift me up! Then, I will have a single second, maybe two seconds, to drag my heavy arms out of the water and wave them in the air for you to see!
Yes, I’m doing it! The water is picking me up! I am picking my arms up!
This is me, waving my arms in the air, shouting for help!
“Help! Help me! Is anybody out there? Answer me! Throw me a line, drop me a line!”
How I Live Now: Life With ALS 
You were the fifth grade teacher who taught my daughter the love of reading. That Sea Creast fifth grader just graduated from college with a degree in geology. She moved up to Cornell to start her PhD.
You were such a wonderful influence on her…. we love you, talk about you often and you matter.
Thank you.
Terri and Ashley Grant {{{{Hugs}}}}
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This is a brilliant and beautifully written post, Rachel.
I miss you so much and wish I could help somehow to keep you afloat. I’m here, thinking of you all the time.
I love you!! TF
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