After rough times, any relief feels especially sweet

Experiencing that rare moment when life seems easier, even living with ALS

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by Kristin Neva |

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After I finished this holiday season’s wreath orders, I moved my wreath-making table out of the dining room back into the garage and put away extra pine cones, bows, and birch bark. The room felt spacious without the clutter, and I told my husband, Todd, “This reminds me of the story of the farmer.”

Over the years, when the occasion fit, my husband, Todd, or I would bring up a traditional Jewish parable we’d once heard. Here’s one version of the gist of the tale:

“A poor farmer once lived in a small cottage with his wife and many children, and he complained to his rabbi about how his house was too small.

“Bring in the cow,” the rabbi told him.

The house seemed even smaller, and so he went to visit the rabbi again.

“Bring in the chickens,” the rabbi said.

The noise and stench was unbearable. He went to see the rabbi.

“Take all the animals out,” the rabbi said.

And the farmer was delighted with his spacious home.”

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Often, people struggle and then experience a victory of sorts — a new job after unemployment, or health after a serious illness. The better times aren’t always without trauma, but there comes a point where a new normal is built.

But living with ALS is in a different class of struggle, one in which difficult times are followed by more difficult times. ALS is not one of those things you get through to the other side. It keeps getting harder and putting on more pressure. There’s rarely a sense of relief, as the farmer experienced. Perspective can be hard to come by with a progressive disease.

Moving on from a brutal illness

However, I just experienced a rare moment when things got easier. I got a bad cold, and figuratively, that was like bringing the cows and chickens into my house.

When I was sick, all I wanted to do was rest, which was impossible because I needed to care for Todd, who has ALS. I kept my distance from him as much as I could so he wouldn’t get sick, because any bug could kill him. His lung function is very weak, and recently he’s seemed increasingly dependent on his noninvasive ventilator. He could barely say more than a few sentences off his vent, and we started leaving it on while transferring him into bed.

My bug had curtailed other activities. Todd and I couldn’t watch shows together. I canceled our family’s weekend plans to get our Christmas tree up. The following weekend, I was still fatigued, but I pushed myself to go out to the woods with the kids to cut down a spruce.

While I was still recovering, Todd’s lungs seemed to improve a bit, and he wondered if he’d been fighting my bug, too, albeit a much milder version. And then after nearly two weeks of being sick, I felt mostly back to my usual self.

It was such a relief. Todd and I could again watch a movie together. I could delight in our pretty Christmas tree that the kids had decorated.

“It reminds me of the farmer,” I told Todd.

This Christmas, I’m thankful we’ll be able to enjoy the simple pleasures.

Note: ALS News Today 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 ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.


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