‘Nobody knows how to say goodbye’ in life with ALS
When uncertainty and weariness threaten to overwhelm us, we keep going
Written by |
I asked our smart speaker to play music by the Lumineers while I got my husband, Todd, washed up and out of bed this morning. One of their songs, “Nobody Knows,” played, and it resonated with me and our ALS journey.
“Nobody knows how to say goodbye/ It seems so easy ’til you try.”
After Todd’s ALS diagnosis, he joked that he hoped we would have a long “Minnesota goodbye.” He spoke fondly of growing up in Minnesota when visiting friends and family would start the goodbyes in the house, and then everyone would move out to the driveway and continue to chat, not wanting to wrap up their time together.
In our case, Todd’s goodbye started in 2010 with a prognosis of death within three to five years, and then his Minnesota goodbye moved into 16 years of progressive disability. Many of the sweet memories we’ve made in that time were wrapped in sadness, and I still think that every significant event might be our last with him.
I wondered aloud to Todd last week if we should order the premium 5×7-inch Christmas cards with our family picture again this year, or save money by just sending printed 4×6-inch photos. He wanted to send the nice ones. For a moment I wanted to argue for frugality, but I reconsidered.
Tears came to my eyes as I said, “Well, this would be our last Christmas card as a family.” We ordered the nice ones.
Another line from the song says, “Nobody knows how to get back home/ And we set out so long ago.”
One of my biggest sources of support in navigating this disease has been a Facebook spouse caregivers group. Whether members are asking for guidance in finding equipment or resources, or sharing their struggles, people offer what they can. This is a place I can go where people get it — because they are in the trenches dealing with similar issues. Even so, none of us can show the others how to handle this disease well because we are all struggling. There is no getting back to a state of equilibrium with a disease that keeps on taking. There’s no going home.
The song also reminds me that “Love is deep as the road is long/ And moves my feet to carry on.”
We keep going, reaching deep, hoping to find enough love to fuel the tedium and difficulties on the long road of progressive illness. Todd’s nose has been especially uncomfortable over the last couple of days, and it’s been difficult to get his nasal pillows for his noninvasive ventilator adjusted just right. He asks me to pull the band one way, then the other, and then take it off and try it again. Eventually, he thinks it’s OK. When I finally manage to get it to a somewhat comfortable place, I have no idea what I did differently. It’s tedious for both of us.
The song ends with the thought that “Nobody knows how the story ends/ Live the day, do what you can.”
Do we have days, months, or years left with ALS? How can we plan when we don’t know the timing? When uncertainty and weariness threaten to overwhelm us, we keep going and do what we can.
Give it a listen and see if you relate.
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.
Leave a comment
Fill in the required fields to post. Your email address will not be published.