The conclusions I reach when I imagine life without ALS

My husband, Todd, and I just finished watching the TV series “Person of Interest,” about a type of super artificial intelligence (AI) that predicts crime. The series, which ran from 2011 to 2016, was prescient about current issues resulting from AI and mass surveillance.

In the penultimate episode, one of the main characters, Harold Finch (played by Michael Emerson), questioned whether he’d made a mistake in creating the Machine, after several of his close friends and fellow crime fighters had been killed. The Machine showed Harold several simulations of what life could have been.

This made me think about how I sometimes find myself wondering what our life would have looked like if ALS had never entered it — if we were still living normal lives with Todd able to work and travel with our family.

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Todd has been living with ALS for almost 16 years. He’s lost so much, including his mobility, his independence, and the ability to breathe on his own. His daily life is difficult as he deals with pain and discomfort from not being able to move. He’s having more trouble sleeping at night, rarely getting more than a couple hour-long stretches. The consuming nature of the caregiving he needs and my ongoing grief have been hard on me as well.

My mental simulations of life without ALS exclude all of those negative outcomes, but I often don’t imagine other ways things could have gone wrong. I don’t picture myself getting hit by a car and becoming the one who is paralyzed. I don’t imagine Todd losing his job, falling into depression, or struggling in other ways.

I’m not comparing reality to other possible difficult scenarios. I’m comparing our real life to a version that never existed. I think our lives without ALS would have been better, but I don’t know who I or Todd would’ve become, or what our family would’ve faced.

In this actual version of our life with ALS, I’ve grown in empathy and compassion. I understand what it is like to struggle. I don’t have easy solutions or platitudes to offer. This is the life we have. I am a different person than I would’ve been, for better and for worse.

But I’m also weary, and if I could undo ALS, I would.

The Machine told Harold, “I can tell you, with a fair amount of certainty, the world would have been a very different place had I never existed.” His best friend wouldn’t have died, and Harold would’ve never been injured. But given the law of probability, he also wouldn’t have met his fiancée, and the crime-fighting partner he had recruited wouldn’t have had a purpose or will to live, and his body would’ve washed up on the shoreline of the East River.

By the end of that episode, Harold concludes that the world without the Machine wasn’t necessarily better or worse, just different.

I have no machine to tell me if our lives are better or worse. There is only this life, with all its sorrow and love.

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