The ALS community ‘could use a little mercy now’
I don’t know how long my husband has, but he needs mercy for this last stretch
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As I prepared to shower my husband, Todd, who is paralyzed due to ALS, I asked his smart speaker to play “Hurt” by Johnny Cash, and after that finished, I asked it to play similar songs. As I shaved Todd’s head, a song I’d never heard before came through the speakers: “Mercy Now” by Mary Gauthier.
Gauthier begins, “My father could use a little mercy now.” In that first verse, she sings that the fruits of his labor fall and rot slowly on the ground. “His work is almost over/ It won’t be long and he won’t be around.”
The words resonated with me, but in my case, it’s my husband’s work that is almost over. Todd’s breathing is getting so weak that I think we are approaching the end. His work of parenting our two children, partnering with me, and living as well as he could with this horrible disease is almost done. I don’t know how long he has, but he needs mercy for this last stretch as he endures the pain of muscle contractures.
Next, Gauthier sings of her brother needing mercy, how “the pain that he lives in is/ almost more than living will allow,” and he needs mercy now. I see Todd, myself, and the entire ALS community in these lyrics.
‘Every single one of us …’
As we approach 16 years of living with ALS, I am dismayed by our reality.
ALS took Todd’s arm strength first. When his legs weakened, I worried that he would fall and implored him to use his wheelchair. I can still see his bloodied face when he indeed fell and hit his head. When he lost the ability to sleep independently and needed my help throughout the night, the sleep deprivation almost did me in. And then he struggled to cough and needed help clearing mucus from his lungs and food from his throat and windpipe. It’s been a long series of losses.
The ALS community needs mercy. We need a cure. We need the right to try NurOwn (debamestrocel), an investigational treatment that has shown promise for some people with the disease. We need at-home healthcare provided through Medicare. It’s too much for it all to be on the spouse. We, as a country, need to care for our ill and disabled better than we do. I’ve tried to fight and advocate for these things, but in our nearly 16 years with the disease, not much has changed.
“Mercy Now” is now on my playlist, and in surrender, I sing along: “Every single one of us could use some mercy now.”
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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