Living with the uncertainty that accompanies a terminal diagnosis
Each year, I wonder, 'Will this be our last?'
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This morning my husband, Todd, asked me how many boxes of medical gloves we had left, so I took an inventory. We stock medium, large, and extra-large, because different caregivers prefer different sizes.
“I think we need to order more large,” I said, “There’s four boxes left.” I paused as though I was calculating how long they would last. “There’s a good chance you’ll outlive our supply.”
He sighed and I laughed.
It’s a schtick we repeat whenever he needs to reorder something he buys in bulk, like gauze pads, deodorant, or gloves. He always feigns disappointment when we run out of something. “So irritating,” he’ll say. “I guess I’ll order another lifetime supply.”
The dark humor helps us cope with the emotional exhaustion of living with the uncertainty of ALS. People often say to live each day as if it is your last, and there’s wisdom in that, but there’s also a weight to living with the constant awareness of life’s fragility.
We keep going
Every late summer or fall, my mom takes our family photo for our Christmas card. Each year, I wonder if it will be our last picture with Todd.
For the last 10 years, Todd has made a book of photos, compiling highlights of the prior year, for my Christmas gift. Each year, I wonder if it will be my last photo book.
We are intentional about taking pictures on holidays and birthdays, and when out-of-town friends and family visit. I always have that same thought: Will this be the last picture with Todd?
I look back through our Christmas cards and through my photo books with gratitude for the years we’ve had. The pictures bring back memories of the good times — and also of the stress.
I look at pictures of Todd with our kids at their school events, and I celebrate the fact that he could be there, even as I remember the challenges of getting out with a wheelchair in wintry weather.
I look at pictures of a family vacation, delighting in the memories we made at the Science Museum and the Mall of America, even as I remember the stress I felt helping Todd cough when he choked while swallowing at a restaurant on that trip.
There’s no way to know if this year’s family picture will be our last. I don’t know if Todd will make another photo book for me. I don’t know how many more boxes of gloves we’ll go through.
I don’t know that there’s any way to escape the weight of living with the uncertainty that accompanies a terminal diagnosis, but we keep going, making memories, and documenting the ordinary moments of life.
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.
Rosemary Rangi
Very real and raw. Appreciate you being so candid.
Kristin Neva
Thank you Rosemary!