Embracing the pandemonium in life with ALS
I don't know the meaning of life, but being here now is remarkable
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My husband, Todd, and I recently finished watching the NBC series “The Good Place,” a comedy that explores some of life’s big questions about meaning.
In the season three finale, the character Eleanor Shellstrop searches for the answer that will make everything make sense as she tries to find meaning in a pain-filled universe. She asks Janet, an all-knowing being, to tell her the answer to everything.
I relate to Eleanor and her quest to find meaning. Since Todd’s ALS diagnosis more than 16 years ago, I’ve wrestled with the same issue. I thought if I could see purpose in our pain, it would make living with ALS easier. If I could find enough good in our circumstances to outweigh the difficulties, the scales would balance.
Janet can’t give Eleanor the answer, but says that if she could, the human experience wouldn’t be special — it would just be machinery fulfilling its cosmic design. The concept of a world with a more predictable, machine-like design is appealing. If only we could push the right buttons to get predictable results.
Months after Todd’s diagnosis, I came across a blog written by a youth pastor I had volunteered with when I was in college. His wife had died of cancer, leaving behind him and their two young boys. “It’s so unfair,” I told Todd. “They were a happy family. Following God.”
“So you think only drug dealers should get sick?” Todd replied.
“Yes,” I said.
I longed for a world that didn’t seem so random, one where outcomes felt more controllable.
Janet reframes it this way: “But since nothing seems to make sense, when you find something or someone that does, it’s euphoria. In all this randomness and this pandemonium, you and Chidi found each other, and you had a life together. Isn’t that remarkable?”
Maybe that’s the closest we can get to an answer. Todd and I built a life together. Raising our young kids in the midst of ALS is not the life we would’ve chosen, but nonetheless, it is remarkable.
Eleanor concludes, “I guess all I can do is embrace the pandemonium, find happiness in the unique insanity of being here, now.”
As I fed Todd his breakfast one morning last week, I looked out my window to see a hummingbird hovering over my zinnias. In that moment, even in an unfair and unpredictable world, it felt remarkable to witness that little bird — its wings moving so fast it could stay in one place. Another morning, I delighted in seeing a deer scamper across the field, followed by two spotted fawns. That same day, I celebrated my birthday with my family, complete with thimbleberry shortcake and thoughtful gifts and cards. It’s a difficult world, yet still remarkable.
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