She *had* ALS

She *had* ALS

In the beginning, when Anne Marie heard someone “had” ALS, she always asked how they got rid of it.

After a year, she soon learned if someone “has” ALS they are alive, if they “had” ALS they died. Death was the only way to get rid of ALS.

Now when she hears someone “had” ALS, she asks, “how long did they live?”

Last night she met a sweet husband and daughter who lost their wife and mother in March. As expected, Anne Marie asked, “How long did your mom have ALS?” —What followed is a question I’ve never heard her ask before, “Was your mom’s progression faster or slower than my mom’s?”

People often ask how my children are. They have been in therapy since the beginning to help them process the multitude of changes ALS would force them to experience. Anne Marie doesn’t like to ask questions because she is scared to hear the answers, but I know she is quietly calculating. Damn you ALS!

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