Stories Connect Us in ALS Awareness Month

Stories Connect Us in ALS Awareness Month
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For a couple years after my husband Todd’s ALS diagnosis, I sought companionship in books written by people with ALS or their spouses. I read half a dozen stories, trying to wrap my mind around how we would navigate the rocky, unfamiliar landscape of the life ahead of us.

I haven’t read many ALS memoirs recently, but I still find solidarity in other stories of struggle and pain.

Our world is in a time of upheaval, but history reminds me that hard times aren’t new. On our last couple date nights, Todd and I watched movies of people who faced great challenges. In “The Guernsey Literary and Potato Peel Pie Society,” lovers of literature share a book club to escape from the horrors of Nazi occupation. The fictional story depicts the brutal realities of World War II and evokes compassion for those who had to endure it. In “Marshall,” set in 1940 Connecticut, African-American lawyer and future Supreme Court Justice Thurgood Marshall defends a black man wrongfully accused of a horrible crime. What difficult times our country has been through, from the Civil War to the fight for civil rights.

Many people endure suffering in our world today. I listened to a podcast episode of “This American Life” about a man’s desperate attempt to find his Uyghur wife and children, who disappeared after leaving Turkey to visit her family in China. He scours Chinese social media for evidence that his wife is still alive, hoping she’s at worst in an internment camp. He thinks his children are in re-education schools, after finding a video of what looks to be his son.

In another “This American Life” story, a man who grew up in Texas served in the military and then joined Customs and Border Protection. After serving more than 20 years as an officer, he found out that he was born in Mexico when he petitioned for a relative to get a green card. Now he’s fighting to stay in the United States himself.

Life can be upended in many ways. Suffering is part of the human condition.

I have one more story for you.

A 39-year-old man with a wife and two small children was diagnosed with a rare, neurodegenerative disease that inflicts only about 2 in 100,000 people each year. The neurologist told him to get his affairs in order, because he would probably die within three to five years. The man outlived the prognosis, but the relentless disease took the use of his arms and legs, and his breathing is dangerously weak.

The man endures itching that would drive me crazy. His muscles ache. Joint pain and fasciculations keep him up at night. Spring allergens cause his lungs to fill up, and he needs frequent assisted coughs.

The man keeps a positive disposition. He’s a constant presence in his children’s lives, and he is thankful and affirming to his wife, who provides most of his care. He stays active by volunteering with his church, and he helps his wife with her novels. He coached his son to change the oil in his dirt bike. He helped his daughter record and edit videos for a school project.

Todd Neva edits sermon audio for his church’s weekly podcast. (Photo by Kristin Neva)

My husband’s story of living with ALS is one of perseverance in suffering.

May is ALS Awareness Month, and we tell our stories in hopes that there will be a push for effective treatment and adequate resources to meet the overwhelming needs of the ALS community.

When I hear people’s stories of suffering, I’m reminded that we are not alone in the challenges we face. There’s power in witnessing the human spirit endure adversity. We are all in this together.

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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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One comment

  1. Jody Megaro says:

    I was diagnosed with als 7/10/19. I was a phlebotomist working for a large medical group in NJ drawing oncology patients. I lost the dexterity in my left hand and could no longer push the needle in my patient to get the blood. I no longer work

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