Tag Archives: ALS

Tough Talk

Update 5/24 :  I spoke with the mom who is referenced in this story about what happened. She is a friend, and a lovely person, and I don’t fault her for this. Kids say what they say–my own included! My purpose in telling this story wasn’t to demonize anyone, but just to share another ALS experience.


The little girl was asking me a question, but I couldn’t hear her over the noise of the playground. I leaned around Scarlett’s head and asked the girl–a 6-year-old who lives in our neighborhood–to repeat herself, but it took a few tries before her question was audible. When I could finally understand what she was saying–and she was speaking pretty loudly by that point–what I heard was “Does Scarlett know that you’re going to die soon?”

There are a lot of possible answers to that question, but the first thing that came out of my mouth was “Oh honey, I’m not going to die soon.”

She persisted. “My mom says that you’re going to die soon.”

“Well,” I said firmly. “I’m not.” And then I must have said something else, but I absolutely don’t know what it was, and suddenly we were wheeling off to another section of the park. Read More>

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Three Nights

Wednesday: We went to the emergency room because every time I coughed, I ended up choking and it was freaking me out. I couldn’t seem to get the cough out, only push it back where it came from and make myself feel even worse. It was a little like early labor in childbirth; I ignored it for as long as I could until it was clearly time to seek professional help.

Rob was on a work retreat, so my sister drove me to the ER, with Scarlett in the backseat running a constant commentary, and driving me nuts. I was concentrating so hard on breathing. When we got to the hospital, I went ahead, while Liz handed Scarlett off to her Uncle Rob. The ER was half-full when I rolled in, with one person ahead of me at the window. I felt awful. I knew I had to cough, but the prospect had become terrifying, like filling my throat with glue and then trying to breathe around it.

A Dr. walked into the room. “Mrs Copeland?” he said, looking around. I caught his eye and made the universal sign for choking. “Mrs. Copeland?” he said again, this time to me. I shook my head, indicating that I was having an emergency. “Oh,” he said, and walked away. “You’re okay.”

When Liz walked in, she dealt with a ridiculous check-in process, all the while trying to contain her anger as she kept repeating my sister has ALS and she can’t breathe. Read More>