Part 1: Forgetting

Lately I’ve been waking up in the morning with the feeling something is seriously wrong. No, that’s inaccurate. I KNOW in my gut something awful has happened and I. Am. Terrified. I can’t tell if it’s a horrifying nightmare, or that something is wrong with the bipap (breathing machine) or the tobii eye gaze computer, but something IS wrong.

As my body calms from flight mode, I understand that nothing is wrong with the machines that power my day. The dream – if there was one – fades, and the caregiver who has been standing by, utterly baffled, proceeds to wash and lotion my face and comb my hair. Time goes by. Night falls and I can’t sleep until 3 am, a routine I hate. In those early hours, fears and loneliness creep in. Then I fall asleep, wake in terror, rinse, repeat.

It took a month for me to figure it out. It isn’t nightmares or malfunctioning equipment.

I am forgetting I have ALS.

It sinks in slowly throughout the day, which I spend in a hospital bed and wheelchair, watching people pump food and medicine – 270 pills a week – through my feeding tube, that I recognize something is seriously wrong with me, worse than tobii failure or any nightmare my wild imagination could concoct. But, some days, it never occurs to me that I am terminal. This is after all, my new normal. That’s not just a motto, it’s my real day to day.

For example, we have dinner together. Evan eats, I don’t. I just have a feeding tube. I don’t constantly think things like, “I have ALS, and that’s why I don’t get a sandwich.” I remember eating. I want to eat. I just… don’t.

For me, forgetting I have ALS is relatively easy. Remembering, now that is a whole different story…

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