If my husband, Todd, did not have ALS, there would still be someone else with ALS. And there’s cancer. Childhood illness. Tragic accidents.
But winter has arrived on the Keweenaw Peninsula, and I’m compelled to get out and delight in God’s creation. Would He have made nature so beautiful if He didn’t mean for us to enjoy it?
I don snow pants, gloves, hat, and jacket. I grab pruning shears and a laundry basket and tromp outside. Fresh country air fills my lungs. I shake snow off branches and clip Fraser fir boughs to create wreaths adorned with pine cones and birch bark accents that I collected last summer.
My kids join me outside.
My son blazes a trail into the bush, and my daughter and I follow in his footsteps through deep snow. We are on the hunt for a Christmas tree. We debate which tree to select. There is none like the full tree we got last year from a cut-your-own tree farm. But none of these scrubby trees is likely to topple over, as our tree did last year. We reach a consensus, and my son cuts down a balsam fir with a hand saw.
At home, I check on Todd. He doesn’t need my help yet.
In the living room, my daughter plays Pentatonix Christmas music, and we decorate the tree. We forgo our usual garland of colored wooden beads. It would weigh this fragile tree down too much, so we drape tinsel icicles over the branches and add only our most delicate ornaments.
My son turns on the Christmas tree lights, and we stand back to assess our work. We adjust the decorations here and there. It’s perfectly imperfect.
Why should it even matter when people with ALS and other diseases are not getting the care they need, when our politics are divided, and when poverty and war ravage parts of this world?
In his poem “A Brief for the Defense,” Jack Gilbert wrote: “We must risk delight. We can do without pleasure, but not delight. Not enjoyment. We must have the stubbornness to accept our gladness in the ruthless furnace of this world.”
I dare to delight in God’s creation and time with my family. I must care for the small things or risk becoming fatalistic, which could lead to me caring about nothing.
In our memoir, “Heavy,” Todd reflects on a carefree ride in a convertible during his first year with ALS: “There is pain and suffering in this world, but there is also joy, and not just suffering here and joy there, but suffering and joy in the very same place.”
We would be overwhelmed by the heaviness of it all were it not for delight.
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 Services, and are intended to spark discussion about issues pertaining to ALS.
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