Learning to Expect the Unexpected

Learning to Expect the Unexpected
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My wife, Jill, and I have not been to the local movie theater in months. It’s been so long that we can’t remember the last movie we saw there. By contrast, we averaged about two movies a month before the pandemic struck.

With the recent reopening of our town’s theaters, we decided to see a movie. Wearing masks and carrying hand sanitizer, we felt prepared as we walked into the theater. What we weren’t prepared for was the location of the auditorium.

A teenage usher showed us the way because the movie was not in one of the five auditoriums we have attended in the past. Instead, we took an elevator to the second floor. (Who knew this place even had a second floor?)

The floor was poorly lit, and I felt like we had entered an office that time forgot. There was a dusty air-conditioning vent and a blinking control unit. There was a workspace with a computer on a desk. We passed the projection room. Then, we went down a long corridor that led to a small auditorium and entered a space with only 20 seats and a smaller-than-usual screen. I felt like I was about to experience a movie sponsored by the junior high school’s audiovisual club.

This is life during the pandemic — it’s not what you expect.

Life as a caregiver is the same. You expect one thing and other things pop up, like mushrooms after a rainy day. For instance, Jill has a terminal illness. That sucks, right? But for months now, she’s been dealing with hives. Isn’t having Huntington’s disease enough suffering to deal with? Apparently not.

Because I tend to have an overactive imagination, I thought, in a black humor kind of way, that the usher was leading us to a place in the building where plastic covered the floor and walls — a kill room, for those of you who remember watching “Dexter” on Showtime.

That negative thought surfaced because I was being led, unexpectedly, to an unknown place, and isn’t that what happens during the course of a disease? The disease leads you through the ups and downs of the unknown. Isn’t it normal to think the worst as this happens?

As a caregiver, I want to have control, but there is very little I can control to protect my wife from suffering or lead her to a cure. But I do have one solace. As we sat next to each other in the movie theater, frequently holding each other’s hand, I knew one thing for sure: As long as I breathe, I will be next to Jill, holding her hand during the carnival ride of her illness. That is one thing in this caregiving journey of mine we both can always expect.

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Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.

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