During May, ALS Awareness Month, let's pay special tribute to my sister Nell, all the others living with this disease, and those who have gone before them. Think of them the next time you take a step. Embrace your child. Speak softly to your loved one.
It's odd to think of my autopilot life, the one before. Working at a job I loved and navigating the daily dance of sibling warfare, homework and appointments. Then one night I looked down at my left hand. "Holy shit," I yelped. "You need to go to the doctor," John said.
Dawn Clark Netsch was the first woman I really admired. I was five years old and in awe of her--her voice, her clothes, her ideas. When she spoke, she knew what she was talking about. I wanted my hair cut just like hers. I wanted to grow up and be like her.
As if being diagnosed with a terminal disease (for the record, I have no intention of letting this beat me) isn't bad enough, it is a disease that the general public has never heard of or knows very little about.
The thought of him being able to communicate with the world truly excited me, and I thought he would be equally enthusiastic. "Nobody wanted my opinions on politics before... I doubt they want them now," the automated machine chirped back. Even as he was dying, he was funny.
"I discussed your desire to swim the Channel with the doctors on the tumor review board, and I'm sorry, but no one believes that you will be able to do it. The fatigue from the chemo will be too great." I looked at my husband and thought they don't know me.
Curtis Johnson, a 55-year-old business man and educator who suffers from Amyotrophic Lateral Sclerosis otherwise known as ALS, finds that even though he lives in Washington he cannot get the assistance he needs to end his suffering when the time comes.